Living Well with Multiple Sclerosis

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Welcome to Living Well with MS podcast. We’re proud to welcome back Dr Brandon Beaber to the guest seat. Dr. Beaber is an American neurologist specialising in multiple sclerosis. He offers a neurologist’s point of view on the Overcoming MS program, and how to achieve better health through lifestyle intervention approaches.

Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

01:25 What’s your specific clinical philosophy as a neurologist for treating patients with MS?

02:00 How important is lifestyle modification in managing your MS?

06:24 Can you walk us through your thoughts on the main pillars of the Overcoming MS approach?

30:41 Is there anything critical you think the Overcoming MS program leaves out?

34:37 Are there any downside risks to following a diet and lifestyle modification program like Overcoming MS?

38:38 The MS research space is evolving rapidly. What, in your opinion, are the most promising areas on the horizon that we should be monitoring most closely?

41:00 Dr Beaber’s book on resilience and multiple sclerosis

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In this episode of Living Well with MS -- where we explore topics relating to living a full and healthy life with multiple sclerosis -- we are pleased to welcome Laura Crowder as our guest! Laura is a health coach and Overcoming MS facilitator. In this webinar replay she unpacks the psychological impact of an MS diagnosis and practical strategies for improving mental wellbeing.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio

01:06 Introduction to Living with MS

01:07 Mental Health Strategies for MS

02:14 Understanding the Psychological Impact of MS

07:15 Navigating Emotions After Diagnosis

11:26 Understanding Multiple Sclerosis

13:05 Mind-Body Connection and Its Importance

20:49 Practical Strategies for Mental Wellbeing

28:41 Community Support and Resources

36:06 Q&A Session and Closing Remarks

Check out other episodes featuring Laura
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An MS diagnosis can bring fear, uncertainty and difficult questions about the future.

In this episode of Living Well with MS, Geoff Allix speaks with Patrick Bevan, who spent 16 years hiding from his multiple sclerosis diagnosis before embracing a lifestyle approach that transformed how he thinks about living with MS.

Patrick shares how fear, anxiety and denial shaped his decisions for years, why a relapse became the catalyst for change, and how exercise, healthy eating, community and self-compassion helped him regain a sense of control.

They also discuss living with ADHD alongside MS, the challenges of building sustainable habits, and why connecting with others can make such a difference after diagnosis.

Whether you're newly diagnosed with MS or have been living with it for many years, Patrick's honest reflections offer hope, practical encouragement and a reminder that a diagnosis does not define your future.

Keep reading for the key episode takeaways and Patrick’s bio.

00:00 Patrick's MS diagnosis and the beginning of his journey

03:34 Living with hidden fear for sixteen years

05:18 Why fear delayed lifestyle changes and treatment

07:02 The turning point that changed everything

10:19 Challenging public perceptions of living with MS

11:39 How fear shaped work, confidence and relationships

13:18 Living with both ADHD and multiple sclerosis

15:00 Finding motivation through the Overcoming MS Exercise Circle

18:03 Which lifestyle changes were easiest—and hardest—to sustain

21:11 Balancing entrepreneurship with protecting long-term health

25:02 Patrick's advice for anyone newly diagnosed with MS

Connect with Patrick on LinkedIn
Learn more about Change Alchemy
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Supporting someone with MS can be rewarding, but it also brings challenges. In this episode of Living Well with MS, Geoff Allix speaks with physiotherapist, mindfulness teacher, coach and Overcoming MS Program Facilitator-in-training Susan Czyzo about supporting people living with multiple sclerosis while also looking after your own wellbeing.

Drawing on both her professional experience and her personal perspective as a family supporter, Susan explores why sustainable lifestyle habits matter, how coaching can help people make lasting changes, and why movement, mindfulness and self-compassion all have a place in living well with MS.

They also discuss the growing evidence for lifestyle approaches alongside MS treatment, the importance of personalised care, and why healthcare professionals should remain open to conversations about healthy lifestyle choices.

Whether you're living with MS yourself or supporting someone who is, this episode offers thoughtful, practical insights into building resilience, hope and wellbeing over the long term.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

01:49 Meet Susan and her holistic approach to wellbeing

06:25 Why the Overcoming MS programme stood out

08:29 Lessons from becoming an Overcoming MS Program Facilitator

11:16 Lifestyle, evidence and conversations with healthcare professionals

12:21 Moving beyond fixing towards empowering people

16:15 How coaching helps people create lasting healthy habits

19:50 Supporting a loved one through an MS diagnosis

23:09 What living well with MS really means

27:50 Looking ahead as part of the Overcoming MS community

Listen to Stories of Hope from the Overcoming MS community
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Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Can tapping help calm MS stress and anxiety? In this episode of Living Well with MS, host Geoff Allix speaks with Lauren Fonvielle, an Emotional Freedom Techniques, or EFT, Trainer, about tapping as a tool for stress reduction, emotional awareness and nervous system regulation.

Lauren explains what EFT is, why it is sometimes called tapping, and how it combines gentle pressure on acupressure points with acknowledging thoughts and emotions out loud. She shares how tapping helped her manage anxiety and panic attacks, and discusses how the practice may help people feel calmer, more grounded and better able to process difficult emotions.

The conversation also explores the science behind EFT, how it may fit into the Overcoming MS stress reduction pillar, when to seek support from a trained practitioner, and why tuning into your own words and feelings matters.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

01:54 Lauren and her path to EFT
03:24 What EFT tapping is, and why emotions matter
05:44 The science of tapping and calming the nervous system
08:42 Starting EFT and finding the right words
09:49 How quickly tapping may help you feel calmer
10:39 Longer-term benefits and processing past emotional experiences
12:08 Using EFT daily or in stressful moments
12:40 When to seek support from a practitioner
13:21 How tapping fits with mindfulness and meditation
14:41 EFT, physical pain and emotional contributors
16:24 Research into EFT, stress and PTSD
17:55 Client breakthroughs and emotional shifts through tapping
20:29 Lauren’s advice for anyone curious about tapping

Read about the evidence for tapping
Learn more about the Mindshift Community
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Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Can exercise help your brain and body adapt when you’re living with MS? In this episode of Living Well with MS, host Geoff Allix speaks with Dr Gretchen Hawley, a Doctor of Physical Therapy and Multiple Sclerosis Certified Specialist, about movement, neuroplasticity and living well with MS.

Dr Hawley explains how exercise can support strength, balance, walking and everyday confidence. She shares why movement quality, repetition and rest all matter, and how functional exercises can help with daily activities such as stairs, getting into a car or standing up from the floor.

The episode also explores fatigue, heat sensitivity and how to adapt exercise to your own symptoms and energy levels.

Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

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MS is not a “white person disease”. In this episode of Living Well with MS, host Geoff Allix speaks with Minnie St. Claire, a Canadian entrepreneur, digital content creator and advocate living with multiple sclerosis and bipolar disorder.

Minnie shares her MS journey, including early symptoms, years of denial, relapse, treatment decisions and learning to take her health seriously. She also talks about managing more than one chronic condition, building resilience, using therapy tools, finding BIPOC peer support, and creating routines that protect her mental, physical and spiritual wellbeing.

The conversation explores Canada’s disability benefits system, financial independence while receiving support, working from home with MS, meal planning, movement, hormonal changes, healthcare gaps for people of colour, and why inclusive research and representation matter.

Minnie’s perspective is honest, practical and rooted in lived experience.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

01:59 Minnie’s first MS symptoms and diagnosis journey
03:00 Denial, relapse and learning to take MS seriously
06:22 Navigating Canada’s complicated disability benefits system
09:23 Managing MS, bipolar disorder and mental health needs
12:39 Choosing self-care, rest and boundaries without guilt
14:42 Why ten minutes of movement can still count
17:51 Meal planning, vegetables and making healthy food easier
20:11 Adding fish and trying new plant-based options
21:25 Therapy tools, peer support and stress management
23:40 Scheduling stillness, faith and creative self-care
24:57 Building an online business while managing MS
27:41 Turning transferable skills into flexible income streams
28:56 Hormones, mood changes, sleep and symptom tracking
31:41 Healthcare trust, race and choosing the right doctor
35:02 Why inclusive MS research and resources matter
36:57 Finding friendship, mentorship and support online
39:50 Education, confidence and advocating for your body

Connect with Minni
Most active on youtube.com/minnieoncam
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
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Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Dr Aaron Boster, an award-winning, board-certified MS neurologist, answers practical questions from the Overcoming MS community on symptoms, treatment and living well with multiple sclerosis.

The conversation covers supplements, fatigue, menopause and HRT, gut health, inflammation, DMTs, stable MRI scans with worsening symptoms, weather sensitivity, bladder and bowel issues, swallowing problems, Epstein-Barr virus and cancer risks linked to MS medications.

With warmth, clarity and energy, Dr Boster explains complex topics in a way that feels useful and reassuring, while encouraging people with MS to work closely with their healthcare team and take an active role in their care.

This episode is a webinar highlights special – originally recorded as a live Overcoming MS webinar and now edited for the podcast to bring you the key insights, questions and takeaways in one place.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

02:52 Supplements, food quality and MS health
05:42 When symptom-specific supplements may be useful
07:18 Six practical ways to reduce MS fatigue
10:06 What the Octave MS test may show
13:23 Menopause, HRT and MS progression risk
17:18 How inflammation works in multiple sclerosis
20:24 Gut health, microbiome changes and MS symptoms
24:41 Practical bowel strategies for constipation in MS
27:07 Do DMTs still help older people with MS?
27:55 Stable MRI scans but worsening MS symptoms
31:23 Objective tests neurologists can use to track MS
35:28 DMT myths, pharma concerns and clinical trials
40:35 Why heat and cold can worsen MS symptoms
43:17 Bladder symptoms and practical treatment options
43:52 Swallowing problems and when to seek help
44:20 Epstein-Barr virus and future MS prevention research
45:22 Cancer risk, Ocrevus, Mavenclad and context

Listen to other Living Well with MS episodes featuring Dr Boster
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
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Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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MRI scans are a familiar part of MS care – but what are they actually showing, and what might future scans reveal? In this episode of Living Well with MS, host Geoff Allix speaks with MRI physicist Bhavana Solanky from the Queen Square MS Centre at University College London, where she develops advanced MRI markers to better understand multiple sclerosis.

Bhavana explains how MRI is used to diagnose and monitor MS, from spotting new lesions to helping clinicians understand disease activity over time. She also explores how different types of MRI scans work, why the same scanner can produce several kinds of images, and how advanced techniques such as sodium MRI and spectroscopy are helping researchers look beyond visible lesions.

The conversation also covers why research volunteers are so important and how future scans could become faster and more comfortable.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

01:20 Meet MRI physicist Bhavana Solanky
01:57 Using MRI like a giant camera
02:46 Why MRI shows more than an x-ray
03:33 From astrophysics to MS research
05:17 How MRI scans create brain images
07:48 How active MS lesions can appear
08:25 Why MRI matters for MS diagnosis
09:50 The main MRI scans used in MS
12:35 One scanner, several different image types
13:28 Advanced MRI, sodium scans and spectroscopy
16:51 Why volunteers are vital to MS research
18:39 What sodium MRI research is finding
20:39 Why sodium MRI is not about dietary salt
22:10 Faster scans and future MS research
24:33 Why monitoring scans remain important

Learn more about Bhavana’s work and career
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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What does your gut have to do with your immune system, your brain and the way you feel day to day with MS?

In this episode of Living Well with MS, host Geoff Allix speaks with Kim Venter about gut health, the microbiome and why food may play an important role in supporting overall wellbeing with multiple sclerosis.

Kim, who lives with MS herself, is a trained teacher, professional psychological counsellor and nutritional consultant. She shares how certain foods have affected her digestion, energy and symptoms, and why gut health has become central to her approach to living well.

The conversation explores what the gut microbiome is, how diet can affect the immune system, and why people with MS may want to pay attention to digestion, food sensitivities and overall gut health. Kim also discusses practical ways to support the microbiome, from eating a wide variety of plant-based foods to trying fermented foods, prebiotics and probiotics.

Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

01:53 What is the gut microbiome and why is it so important?

03:15 How does what we eat affect our immune system?

09:01 Is it worth keeping a food diary if you’re having GI symptoms?

10:15 What is the low FODMAPs diet?

11:53 What is Leaky Gut Syndrome and how does it effect people with MS?

19:00 The gut–brain axis: does the blood-brain barrier stop foreign substances from injuring the brain?

22:12 For people living with MS, what can be done to help the gut and keep it healthy?

22:51 What are probiotics and prebiotics?

27:02 What can we to increase both probiotics and prebiotics?

30:50 How does gut health or lack thereof impact MS?

39:01 How does intermittent fasting affect gut health?

FODMAP Food Database App
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After her MS diagnosis, Betsy Mueller ran across America. In this episode of Living Well with MS, Betsy shares how she went from fear and uncertainty after her diagnosis to completing a 3,000-mile run from Santa Monica to Central Park to raise awareness of MS.

Betsy shares the early symptoms that led to her diagnosis, the emotional weight of living with invisible symptoms, and how fear and uncertainty affected her mental health. She also talks about the role of a plant-based diet, exercise, treatment decisions and community support in helping her move forward.

From training in Flagstaff to managing heat sensitivity, fatigue, DMT deliveries and long days on the road, Betsy reflects on what it took to complete her run from Santa Monica to Central Park. She also discusses Active with MS, the nonprofit she founded to help people with MS take part in races and reconnect with movement in a way that works for them.

Keep reading for the key episode takeaways and Betsy’s bio.

02:56 How plant-based eating supports Betsy’s health
05:51 Invisible symptoms, fatigue and the emotional weight of MS
10:46 Cognitive symptoms and the impact of poor sleep
12:03 Steroids, plasma exchange and finding effective relapse support
15:27 Moving from fear towards a more hopeful mindset
17:30 Why Betsy decided to run across America
20:49 The 3,000-mile route from California to New York
24:00 RV life, logistics and support on the road
26:12 How Betsy’s body adapted during the run
28:48 Managing heat sensitivity and DMTs while travelling
30:58 Powerful connections with people along the route
33:59 Active with MS and helping others join races
37:20 Betsy’s advice for people newly diagnosed with MS
39:15 Why MS community support can make such a difference

Connect with Betsy on Instagram
Learn more about Betsy’s work and run
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
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Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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How can movement support you to live well with MS, especially when symptoms like fatigue, pain or balance changes get in the way?

Physiotherapist Jody Barber joins Vickie Hadge and Gina Beach to answer community questions on movement, exercise and living well with multiple sclerosis. Drawing on more than 30 years’ experience supporting people with neurological conditions, Jody explores how physiotherapy can help with fatigue, pain, balance, spasticity, mobility and confidence.

The conversation covers practical ways to adapt movement as symptoms change, why all movement can count, how exercise may support cognition, and when to seek specialist advice. Jody also discusses complementary approaches such as massage, acupuncture, water-based exercise, yoga and relaxation, while emphasising the importance of finding movement that feels enjoyable, manageable and meaningful.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

Watch the original webinar here: https://overcomingms.org/live-well/resources/past-webinars/ask-the-expert-live-with-jody-barber

02:06 Jody’s experience supporting people with MS
05:00 Understanding muscle fatigue and adapting exercise
08:55 Complementary therapies for stiffness, soreness and pain
11:31 Rebuilding core strength with functional movement
14:36 Finding MS-friendly yoga and movement classes
16:14 Adapting exercise as mobility needs change
19:07 Managing pain, anxiety and fear of movement
23:59 Sleep difficulties, symptoms and practical routines
29:04 Explaining invisible MS symptoms to others
31:39 Choosing the right physiotherapist for MS care
33:26 Why exercise matters for brain health
34:47 Nerve pain, breathing and gentle movement
37:02 Spasticity, weight bearing and relaxation strategies
39:09 Vestibular symptoms, dizziness and balance support
42:21 Exercise, cognition and brain fog in MS
43:52 Foot drop, mirror therapy and foot mobility
46:20 Simple home exercises using body weight
47:07 Electrical muscle stimulation and foot drop support

New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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What happens when you experience MS symptoms, but don’t yet have a diagnosis?

In this episode of Living Well with MS, we hear from Maureen Haith, who first experienced neurological symptoms in 2002 but wasn’t diagnosed with multiple sclerosis until 2019. Along the way, she was told she had clinically isolated syndrome (CIS) – a term many people are unfamiliar with, but which can be an early stage of MS.

Maureen shares her experience of recognising early symptoms, navigating uncertainty, and deciding when and how to tell others about her condition. She also reflects on how discovering the Overcoming MS programme influenced her lifestyle, from diet and exercise to building community through local support groups.

This is a thoughtful and reassuring conversation for anyone facing MS diagnosis uncertainty, exploring practical ways to take control and make sustainable lifestyle changes over time.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

02:02 First MS symptoms: fatigue, tingling and early warning signs
03:49 New symptoms appear: changes in walking and sensation
04:55 What is clinically isolated syndrome (CIS) and why it matters
07:38 Deciding when and how to share an MS diagnosis
11:37 MS risk and family: understanding genetics and environment
14:23 Discovering Overcoming MS and making lifestyle changes
16:35 Finding support: building connection through local MS circles
20:19 Following the MS diet while travelling and eating out
26:03 Managing weight on a whole food plant-based diet
29:29 Coping with brain fog: practical tools that help
31:33 Advice for newly diagnosed: start small and build gradually

Read all of the Overcoming MS books
Find plant-based restaurants on the Happy Cow website
Check out the Chef Cards for eating in a restaurant
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
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Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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What’s the best way to approach exercise with multiple sclerosis? In this bonus from the archive episode of Living Well with MS, Trevor Wicken explores neuroplasticity, “neural edge” and how to find a movement routine that works for you.

Trevor Wicken is the founder of The MS Gym and a neuromuscular movement specialist who supports people with MS through brain-based movement, mindset, education and community. In this episode, he explores how movement can support confidence, resilience and day-to-day wellbeing, and why progress with MS is often about recognising small victories along the way.

Whether you’re just starting to explore movement with MS or looking for renewed motivation, this episode is a reminder that exercise is not about doing everything perfectly, it’s about finding what works for you.

Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

01:28 What is The MS Gym?

04:45 Can you tell us a little bit about yourself, where you’re from, and the journey that brought you to launching The MS Gym?

13:45 How is your fitness philosophy particularly tailored to people with MS?

18:53 Is it worth getting an MS specialist approach rather than just a normal physical training instructor?

21:10 What are the biggest obstacles to getting people – with or without MS – to adopt a regular exercise regimen?

28:39 For the people you serve under The MS Gym umbrella, how do you measure their success or progress?

44:06 If you could articulate one specific outcome you can say you really nailed in your work through The MS Gym, what would that be and why?

54:53 What motivates or inspires you as a human being?

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For many men with multiple sclerosis, diagnosis brings uncertainty and fear – and it’s not always easy to talk about.

In this episode, Steve Rose, a psychotherapist living with MS shares his perspective on men’s mental health, from coming to terms with diagnosis to managing stress, anxiety and changing identity over time. He explores the importance of mindset, the role of mindfulness and rest, and why learning to understand your own patterns and limits can make a meaningful difference.

The conversation also looks at the challenges men can face in opening up, and the value of finding the right support – whether through trusted relationships, therapy or community.

This episode offers a thoughtful, honest look at what it means to live well with MS, emotionally as well as physically.

Watch this episode on YouTube here. Keep reading for the key episode takeaways and Steve’s bio.

02:20 Steve’s diagnosis story and early mindset shifts after MS
04:46 Challenging limiting beliefs about exercise and MS
06:39 Managing stress with mindfulness and regular mental breaks
09:02 Visualising MS as a “tiger in a cage”
11:12 Processing diagnosis: grief, anger and emotional adjustment
12:31 Advice for newly diagnosed: why talking really helps
13:15 Navigating relationships and finding people who understand
14:45 Creating community: a virtual space for men with MS
16:52 Final advice: understanding your body and adapting over time

Connect with Steve and learn more about his work
Stay up to date on the Might Spoons virtual pub for men with MS
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
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Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Navigating disability benefits with multiple sclerosis can feel overwhelming – especially when symptoms are invisible, fluctuating and difficult to measure.

In this episode, Social Security disability attorney Nancy Cavey speaks to Overcoming MS Program Facilitator Vickie Hadge to explore how MS is assessed in disability claims, when to consider applying, and what steps you can take early to strengthen your case. From documenting symptoms and functional impact to understanding how work, fatigue and cognitive changes are evaluated, this conversation offers practical guidance grounded in real-world experience.

You’ll also learn what to expect from the application process, common mistakes to avoid, and why planning ahead – financially and medically – can make a significant difference.

This episode focuses on the US disability benefits system, but many of the insights around documenting symptoms, planning ahead and advocating for support may still be helpful wherever you live.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

02:11 Nancy’s story – why she specializes in disability law
03:20 When MS symptoms start affecting your ability to work
04:12 How to document MS symptoms for stronger evidence
07:35 How MS disability claims are assessed step by step
10:52 What happens after a disability claim is denied
11:40 Proving fatigue and cognitive symptoms in MS claims
13:09 Can you work part-time and still claim benefits?
16:43 How mental health symptoms are considered in MS cases
19:08 Common mistakes people make when applying for disability
20:38 Workplace benefits vs government disability support explained
23:24 Financial planning for a long disability application process
24:04 Early steps to protect your future disability claim
26:18 Why your doctor’s support can make or break a claim

Visit Nancy’s Website
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Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Making lifestyle changes with MS is one thing. Making them stick is another. In this episode of Living Well with MS, we speak with pharmacist-turned-health coach Dr Amy Behimer about why healthy habits can feel so difficult, especially when fatigue, stress and unpredictable symptoms get in the way. Drawing on her own experience of living with primary progressive MS, Amy shares a compassionate, evidence-informed approach to building habits that feel realistic, flexible and supportive in daily life.

Together, we explore the role of mindset in behaviour change, how to avoid all-or-nothing thinking, why perfectionism can backfire, and how to create routines that work on both good days and bad. If you feel overwhelmed by lifestyle change, this episode offers practical encouragement to help you start small and keep going.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

02:25 Amy’s MS journey and why habits became her focus
05:05 The six areas that shape health with MS
09:46 Why healthy habits are harder than they seem
13:38 Building habits when fatigue and symptoms are unpredictable
16:03 How mindset and emotions shape behaviour change
18:29 The real secret to living well with MS
22:25 Why perfectionism makes healthy habits harder to sustain
25:25 Can self-talk affect day-to-day energy and symptoms?
29:18 Creating flexible routines for good days and bad
30:53 Common habit traps and how to avoid them
33:10 Redefining health when you cannot control your diagnosis
34:58 Where to start when lifestyle change feels overwhelming
37:57 A simple daily practice to make change easier

Take Amy’s habit quiz
Listen to Amy’s podcast
Learn more about Amy’s work
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
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Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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What does it really mean to live well with multiple sclerosis over the long term? In this episode, we’re joined by writer, podcaster and MS advocate Ardra Shephard, creator of Tripping On Air and author of Fallosophy: My Trip Through Life with MS. Ardra shares her journey from diagnosis in her early twenties to becoming a powerful voice in the MS community.

Together, we explore the realities of visible symptoms, stigma and learning to adapt when life doesn’t go to plan. Ardra reflects on why she chose to share her story publicly, the role of humour in coping with chronic illness, and how her memoir brings honesty and vulnerability to the MS experience.

She also discusses identity, relationships, and the importance of representation through her work in podcasting and adaptive fashion.

This conversation is a reminder that while MS can be challenging, it’s still possible to build a meaningful, joyful life.

Keep reading for the key episode takeaways and Ardra’s bio.

00:00 Introduction to Ardra and her MS journey
02:55 Why she shared her MS story publicly
06:00 Using humour to cope with chronic illness realities
09:08 Podcasting, relationships and the wider impact of MS
11:55 Changing representation through adaptive fashion and media
14:54 Key lesson: creating joy while living with MS

Connect with Ardra:
- trippingonair.com
- com/ms_trippingonair/
- facebook.com/trippingonair/
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS podcast, where we are joined by Alison Potts. Alison is a meditation coach, wellbeing mentor, meditation teacher-trainer writer and teacher in self-care, meditation, and wellness. Largely due to her own healing journey with MS, she is passionate about teaching the power of cherishing our individuality and intuition, sharing practices to connection to our innate states of freedom, healing, creativity, spontaneity and joy.

Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

01:24 Tell us about yourself and your with MS and the Overcoming MS program

07:17 What is your relationship to meditation? What’s Innate Being?

18:36 What are the main obstacles you find people face in getting into a regular meditation practice?

23:14 Tips for getting into good meditation practice?

33:28 Top hacks for getting into the meditation groove and making it a healthy habit

44:27 Alison conducts a mini guided meditation (5m)

52:42 Any final words of wisdom or thoughts on embracing a meditation practice?

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What role can diet play in autoimmune health, and what does the science say about plant-based eating and multiple sclerosis?

In this episode of Living Well with MS, we speak with Dr Elizabeth George, a board-certified family physician and co-founder of the Healthy Eating Adventure programme. With more than 40 years of experience in preventive care, she shares why she began exploring the impact of diet on chronic disease and autoimmune conditions.

The conversation explores the growing research linking whole-food plant-based diets, inflammation and the gut microbiome. Dr George explains how fibre-rich plant foods support beneficial gut bacteria, which produce compounds that help maintain gut health and influence immune function.

We also discuss practical ways people can start eating more plant-based foods, the importance of community support when making lifestyle changes, and how to have constructive conversations about diet with healthcare professionals.

Keep reading for the key episode takeaways and Dr George’s bio.

02:38 – Why a family physician turned to plant-based medicine
05:22 – The community experiment that launched a 28-day plant-based programme
09:53 – Can plant-based diets influence autoimmune conditions like MS?
11:42 – Gut microbiome, fibre and the link to inflammation
14:26 – Why most doctors receive little nutrition education in training
16:08 – Real patient stories of lifestyle change and chronic disease improvement
18:37 – Simple ways to start eating more whole plant foods
20:45 – How community groups help people sustain lasting lifestyle changes
24:38 – Talking to your doctor about diet and lifestyle choices
27:48 – Making plant-based cooking easy, enjoyable and family-friendly

Connect with Dr Elizabeth George
Follow Dr George on Facebook
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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What role can diet play in supporting brain health and living well with multiple sclerosis?

In this episode of Living Well with MS, we explore the evidence behind the Overcoming MS diet recommendations and how small, consistent changes to the way we eat can support long-term health. Overcoming MS Program Facilitator and nutritionist Karen Lee explains the research linking diet quality with MS outcomes and introduces the principles behind the Overcoming MS dietary approach.

Karen is joined by fellow Program Facilitator and health coach Ingrid Adelsberger, who shares her personal experience of following the program for over a decade. Ingrid reflects on the practical realities of adapting to a new way of eating, from navigating label reading and meal planning to finding family-friendly recipes that make the diet sustainable.

Together, they explore why the Mediterranean-style dietary pattern underpins the Overcoming MS diet, how reducing saturated fat may support brain health, and why consistency matters more than perfection when making lifestyle changes.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

00:00 Introduction to the Overcoming MS diet
01:34 Overview of the Overcoming MS Program and lifestyle pillars
05:35 Why diet matters in MS and the research behind diet and multiple sclerosis
16:02 What a brain-healthy Mediterranean-style diet looks like
23:54 Ingrid’s journey and creating the Overcoming MS cookbook
31:58 Q&A: common questions about the Overcoming MS diet
33:27 Whole grains, gluten and choosing healthier options
35:27 Managing weight and getting enough calories on a plant-based diet
37:30 Flaxseed oil, omega-3s and possible alternatives
39:29 Supporting bone health and osteoporosis with diet and lifestyle
42:45 Diet research in primary progressive MS
44:12 Processed vs ultra-processed foods

Check out the Overcoming MS cookbook
Discover hundreds of Overcoming MS friendly recipes
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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How do you build a sustainable career with multiple sclerosis? In this episode of Living Well with MS, Heather Carrasco shares how her diagnosis reshaped her relationship with work, rest and self-advocacy.

Diagnosed with relapsing remitting MS in 2023 – though her symptoms likely began years earlier – Heather reflects on navigating the US healthcare system, learning to manage fatigue at work, and deciding whether to disclose her diagnosis professionally.

She also shares how discovering the Overcoming MS Program and finding community helped her move beyond denial and make sustainable lifestyle changes.

This episode will resonate with anyone adjusting to life after an MS diagnosis, managing invisible symptoms like fatigue, or trying to create a healthier balance between career and wellbeing.

Keep reading for the key episode takeaways and Heather’s bio.

02:12 Early symptoms, delayed diagnosis and navigating healthcare in the US
06:18 Explaining MS to others – invisible symptoms and describing fatigue
08:28 Discovering Overcoming MS and deciding to attend a retreat
09:51 The Overcoming MS retreat experience and finding community
12:02 Work–life balance, rest and putting yourself first
15:13 Diet, sustainable change and mindset shifts
16:28 Mental health, therapy and mindfulness
17:57 Support systems, disclosure at work and psychological safety
21:59 Advice for the newly diagnosed

Register your interest in an Overcoming MS retreat
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

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We are pleased to welcome Dr Valter Longo to this episode of Living Well with MS. Dr Longo is the scientist behind the Fasting Mimicking Diet. He is a bio-gerontologist and cell biologist serves as a professor at the USC Davis School of Gerontology and as the director of the USC Longevity Institute. He is the creator of the fasting-mimicking diet, a program that claims to mimic the effects of periodic fasting. To read Dr Longo’s full bio, click here.

Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

02:08 Today’s rising fascination with fasting diets

03:50 Main differences between the fasting-mimicking diet and other fasting diets

05:03 Diving into blue zones, where a higher percentage of the population lives to 100

06:55 The correlation between the centenarians and people who are fasting

11:04 Does fast mimicking help people with MS live better and longer?

14:03 The different types of fast-mimicking diets including 5:2, 16:8 and occasional water fasting

24:54 What should we eat between fasts?

29:28 What is the ProLon diet, and for those on a budget, how can peopel get some of the benefits on their own?

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What does it really mean to parent with multiple sclerosis, and how do you talk to your children about something so unpredictable?

In this episode of Living Well with MS, we’re joined by Julie Stamm – MS advocate, author and mother – for an honest and uplifting conversation about raising a child while living with MS.

Diagnosed in 2007, Julie turned her experience into advocacy, determined to be open with her son about her condition in ways that are truthful but age-appropriate. She shares how parenting reshaped her perspective on resilience, how listening to children can ease the guilt many parents carry, and why adapting as a family is a sign of strength, not failure.

We explore storytelling as a tool for empowerment, the importance of peer support and community, and why the outlook for people newly diagnosed today is more hopeful than ever. Julie also reflects on her children’s book Some Days and her work to promote inclusion and diverse abilities through advocacy and education.

This episode will resonate with anyone parenting with MS, considering starting a family, supporting a loved one with MS, or looking to turn lived experience into meaningful advocacy.

Keep reading for the key episode takeaways and Julie’s bio.

00:00 Introduction and Julie’s diagnosis journey
01:23 Why honesty with children matters
02:26 Sharing your story and the power of lived experience
03:37 Parenting guilt, resilience and writing Some Days
04:42 How MS affects the whole family
06:40 Adjusting to change and adapting over time
08:39 Becoming an MS advocate and finding your niche
10:02 Gratitude, grief and staying hopeful
11:23 The importance of peer support and community
13:52 Research advances and hope for the future
14:58 Advice for newly diagnosed parents

Learn more at Julie’s website www.iamstamm.com
Follow Julie on Instagram at @iamstamm
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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If you’ve ever felt stuck between knowing what could help you live well with MS and actually making it stick, this conversation is for you.

In this episode of Living Well with MS, Overcoming MS Program Facilitator Laura Crowder explores the ‘change your life for life’ pillar, the inner work that helps make lifestyle changes feel sustainable rather than overwhelming. Laura is joined by Overcoming MS Program Facilitator Hayley Baker, who shares her personal experience of building confidence, resilience and self-compassion while following the Overcoming MS Program.

Together, they reflect on why mindset matters, how hope and empowerment can support wellbeing, and what to do when life inevitably knocks you off track.

Watch the full webinar on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

00:58 Exploring the pillar: Change your life for life

04:36 Choice, autonomy and taking control after diagnosis

09:56 The role of hope in living well with MS

12:37 Awareness, acceptance and managing difficult days

16:02 The power of language in habit formation

21:13 Empowerment and making lifestyle change sustainable

22:45 Community support and shared experience

25:36 Hayley’s personal journey with MS

35:01 Advice for people new to the Program

37:50 Q&A: common challenges, motivation and self-compassion

Read the Overcoming MS books
Learn more about the “Change your life, for life” pillar
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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How can mental health support be better tailored to the real, lived experiences of people with MS? In this episode of Living Well with MS, we’re joined by Dr Eva Fragkiadaki, counselling psychologist and Senior Lecturer in Counselling Psychology at the University of the West of England. Her whose work focuses on developing personalised, evidence-based mental health interventions for people living with MS.

Eva shares insights from her research into group-based psychological support, including her co-designed MyMS-Ally intervention. Together, we explore why traditional mental health approaches don’t always work for people with MS, the power of peer connection, and how concepts like identity, self-compassion and visibility of disability shape emotional wellbeing.

This conversation will be especially valuable for anyone living with MS, supporting someone with MS, or interested in how mental health care can become more person-centred, inclusive and accessible.

Keep reading for the key episode takeaways and Eva’s bio.

00:00 Introducing psychosocial interventions for MS

03:38 Researching group therapy and therapeutic change

06:07 Gender, representation and inclusion in MS research

08:19 What kinds of mental health support help in MS?

10:30 Why group interventions matter

12:47 Peer support, safety and community connection

15:10 Integrative and personalised therapy approaches

17:29 Visible and invisible disability in MS

20:15 Self-compassion and identity

22:23 Future directions for mental health care in MS

Learn more about Eva and her work
Learn more about Eva’s research on mental health and MS
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Originally broadcast in 2020, this episode has been edited to remove out-of-date content and reuploaded in 2026 to ensure it remains relevant and useful.

In this episode of the Living Well with MS podcast, and we are pleased to welcome Dr Aaron Boster, an Ohio-based board-certified clinical neuroimmunologist specializing in MS. Given we are surrounded by temptations – from that delicious pint of ice cream to the lure of sleeping in instead of hitting the gym – we are happy to tap his expertise to help us understand how lifestyle choices impact MS and our overall health.

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How does gut health affect MS – and what role can diet really play in supporting the immune system? In this episode of Living Well with MS, Geoff is joined by Overcoming MS Program Facilitator Karen Lee – retired intensive care nurse, nutritionist, author and recipe developer. Karen shares her MS journey and explains, in clear and accessible terms, how gut health, inflammation and diet are connected in autoimmune conditions such as MS.

They explore dysbiosis and “leaky gut”, why fibre and the microbiome matter, and how whole-food plant-based eating fits within the Overcoming MS dietary recommendations. Karen also talks about her new book Healing from the Inside Out and shares practical, fatigue-friendly tips for eating more plants – without overwhelm.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

00:56 Welcome and introduction to Karen

01:49 Karen’s MS journey: diagnosis, optic neuritis and early changes

04:46 From intensive care nursing to nutrition, writing and teaching

09:32 Understanding the Overcoming MS diet recommendations

10:36 Why diet matters for immune health: nutrients, fats, fibre and the microbiome

17:57 Dysbiosis explained – and how it relates to autoimmunity and MS

22:02 “Leaky gut”: what it means and why inflammation matters

23:16 Inside Karen’s new book Healing from the Inside Out

26:46 How whole plant foods support overall health

29:50 Protein and plant-based diets: common concerns addressed

31:39 Practical tips for eating more plants and increasing variety

37:58 Favourite recipes, sauces and simple ways to add flavour

39:41 Batch cooking and freezing for low-energy days

41:26 Running the Taunton Half Marathon and fundraising for Overcoming MS

Order Karen’s latest book Healing from the Inside Out: Managing Autoimmunity with a Whole-Food Plant-Based Diet
Support Karen’s fundraiser for Overcoming MS
Learn more about Karen’s work
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org

If you like Living Well with MS, please leave a 5-star review

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Host Geoff Allix speaks with Caroline Clarke, Chief Executive of the Royal Free London NHS Foundation Trust and former trustee of Overcoming MS, about her MS journey, why she chose to follow the Overcoming MS Program, and the practical habits that help her manage stress while working in a high-pressure role.

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This episode of Living Well with MS was recorded at Living Well Live, Overcoming MS’s one-day event held at the University of Warwick in November 2025, with people joining both in person and online. Host Geoff Allix shares conversations with community members, speakers and guests from across the MS sector, exploring what’s new in MS lifestyle research and the practical tools people are using to live well with MS.

You’ll hear about the evolving evidence behind the Overcoming MS Program, why personalised approaches matter (including vitamin D), and the role of community connection in building confidence after diagnosis. Together, these conversations capture what makes Overcoming MS so powerful: the combination of evidence-based guidance and genuine community support. You’ll also hear how donations help fund trusted information, courses and spaces where people with MS – and those around them – can feel informed, connected and empowered.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

00:00 Geoff Allix introduces the event and Overcoming MS

03:07 Linda Bloom & Alex Holden on the origins of Overcoming MS, community and purpose

11:21 Dr Jonathan White on MS research, treatment and the role of lifestyle medicine

12:44 Lina Nielsen on elite sport, MS and training at Olympic level

14:51 Lina Nielsen on exercise, mindfulness and neuroplasticity

17:00 Tessa Miles on resilience, preparation and the power of community

22:09 Dr Rachel Hunter on the nervous system, stress and self-management

24:12 Dr Rachel Hunter on how MS self-management has evolved

28:19 Community member Maureen Haith on her top takeaways from the day

33:25 Miriam Jordan Keane on how Overcoming MS is evolving

37:56 Neil Stanley on sleep, MS and practical tips for better rest

43:22 Rabiah Coon on laughter, mental health and coping with MS

49:19 Amy Thompson from MS Together on supporting young adults living with MS

50:54 Holistic MS care – combining medication, lifestyle and community

55:13 Advice for newly diagnosed people with MS – reassurance and practical guidance

57:48 Dominic Shadbolt,The MS Guide, on AI, innovation and the future of MS care

59:43 Eleanor Bate, Shift.MS, on peer-led community support and connection

01:06:31 Sarah-Jane Elliot, MS-UK on accessing support, resources and online activities

Learn more about MS
Learn more about MS-UK
Learn more about MS Together
Learn more about the MS Guide
New to Overcoming MS? Visit our introductory page
New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, Alex Holden (Chief Executive of Overcoming MS) is joined by Rachel Johnson, Overcoming MS’s Information and Research Manager, and Dr Jonathan White, the charity’s Medical Advisor and Program Facilitator. Together they explore what the latest evidence says about lifestyle and self-management in MS – and why it’s an increasingly exciting time for MS research and treatment. They also share what Overcoming MS is working on in 2026, including improved evaluation of our programmes, new symptom-focused resources, and progress towards achieving the PIF TICK quality mark for trusted health information.

Watch this episode on YouTube. Keep reading for the topics, timestamps, and our guest’s bio.

01:56 Meet Rachel Johnson: background in psychology, research methods and why she joined Overcoming MS

04:04 Jonny’s role and why sharing research clearly (and credibly) matters

05:33 Rachel’s priorities: improving information quality and evaluating impact

07:16 Supporting healthcare professionals to signpost trusted lifestyle resources

09:06 What’s coming up in 2026: evaluation findings, information strategy and symptom-based resources

11:05 Jonny’s 2026 highlights: Pathways, retreats and the BSLM lifestyle medicine module

14:24 How the Overcoming MS programme aligns with the latest lifestyle research

16:57 Making the programme practical: diet quality, Mediterranean-style eating and “big picture” habits

18:54 Talking to your MS team about lifestyle: confidence, language, and keeping your agenda clear

23:05 Why robust evaluation matters: pre-post surveys, validated measures and long-term follow-up

27:31 Getting involved in research: MS Register, university studies and opportunities shared via the Hub

31:41 What is PIF TICK and why it matters for trustworthy MS lifestyle information

36:04 What’s exciting in MS research right now: treatments, progressive MS, and novel therapies

40:13 Why credibility and clear communication are key to shifting the “no evidence” narrative

More info and links:* Listen to the Talking with Skeptics webinar with Jonny and Yasmin Neves * Tell your health team about Overcoming MS resources for healthcare professionals * Sign up for the next free Pathway to Overcoming MS course * Join the MS Register in the UK * New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, we’re joined by Juliet Delattre, a language teacher and digital nomad from the Netherlands who was diagnosed with MS in 2019.

Juliet shares the shock of being diagnosed after relatively mild symptoms, and what it was like searching for answers, navigating uncertainty, and deciding who to tell. We also talk about the role of lifestyle alongside medical care, how Juliet experimented with different approaches over time, and why she ultimately chose to follow the Overcoming MS Program.

Juliet speaks honestly about stress, study, travel and bereavement – and offers a compassionate reminder that there’s no single “perfect” way to live well with MS, only the approach that’s sustainable for you.

Watch this episode on YouTube here. Keep reading for the topics and timestamps.

Topics and timestamps00:00 Juliette's diagnosis and initial shock

03:33 The emotional impact of MS

05:58 The decision to share: who to tell and why

08:30 Choosing a path: medication and lifestyle changes

11:09 Life after diagnosis: changes and adaptations

13:38 Travelling with MS

16:50 Trying different diets and why evidence mattered

19:17 Stress support: drawing, meditation, retreats and finding what’s sustainable

22:41 Studying with MS: a flare-up, disability support and difficult systems

24:24 Discovering Overcoming MS and choosing a path that “clicked”

26:50 Family support: making diet changes feel achievable

29:12 Exercise, confidence and changing mindset

32:05 Bereavement, stress and finding ways to cope

35:36 Embracing creativity and possibilities

More info and links* Learn more about Joe Dispenza’s work on placebo and healing * Read Juliet’s blog on her drawings of her sensations in her body * Learn more about Vipassana meditation retreats * Read about the benefits of therapeutic journaling in time of stress * Try one of Juliet’s favorite 30-minute meditations * Read about hypnotherapy for MS * New to Overcoming MS? Learn why lifestyle matters in MS - begin your journey at our 'Get started' page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, we’re sharing highlights from our Ask Aaron webinar – originally recorded as a live Overcoming MS webinar and now edited for the podcast to bring you the key insights, questions and takeaways in one place.

Our guest is the dynamic and much-loved Dr Aaron Boster, a board-certified neurologist specialising in multiple sclerosis.

Dr Boster answers a wide range of thoughtful, practical questions from the OvercomingMS community. From medications and MRI contrast scans to foot drop, vision changes, supplements and the latest research developments, he brings clarity, warmth and energy to every topic.

If you’ve ever wished you could sit down with a neurologist who truly understands MS, this episode is for you.

Watch this episode on YouTube.

Topics and timestamps05:08 Exciting developments in MS research

10:54 Subcutaneous injections of Ocrevus

14:27 Remyelination drug trials

22:02 Addressing fatigue in MS patients

30:14 Managing fatigue: strategies and treatments

31:04 Navigating disease-modifying therapies

31:04 Supporting loved ones with MS

35:09 Understanding MRI and gadolinium contrast

38:21 B-Cell depletion therapies and MS progression

40:42 Exploring functional mushrooms and supplements

44:35 The importance of vitamins and nutrition

52:15 Understanding neurofilament light chain

58:28 Foot drop solutions

59:29 Finding the right doctor

01:00:29 Hope for the future of MS

More info and links* Listen to other episodes featuring Dr Boster * Check out Dr Boster’s popular YouTube channel covering all aspects of MS * New to Overcoming MS? Learn why lifestyle matters in MS – begin your journey at our ‘Get started’ page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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The holidays will soon be upon us, and we all know food is a big part of the fun. This time of year presents the temptation of delicious meals whose ingredients don’t always fit the dietary guidelines Overcoming MS recommends.

On this episode of the Living Well with MS podcast we are pleased to welcome Ashley Madden, a full-time food lover and health enthusiast. She’s also a pharmacist, plant-based chef, certified holistic nutrition consultant and food photographer.

Topics and timestamps02:03 About Ashley and her passion for cooking

03:26 How long have you been following Overcoming MS?

05:20 Has it been challenging to switch to the Overcoming MS diet?

09:14 Best tips for making the transition to the Overcoming MS diet easier

11:53 Tips for making Overcoming MS-friendly holiday meals for large groups and smaller more intimate gatherings?

21:28 Special tips or meal ideas for holidays

31:37 Making Overcoming MS-friendly puddings and desserts

35:14 Top cooking advice when following an Overcoming MS compliant diet

More info and links:* Read Ashley Madden’s food blog * New to Overcoming MS? Learn why lifestyle matters in MS – begin your journey at our ‘Get started’ page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, we meet adaptive world champion athlete Francis Loye, a Northern Ireland-based father of three who lives with MS.

Francis was diagnosed in 2021 after experiencing symptoms on a cycling holiday. Since then, he has transformed his life: following the Overcoming MS program, connecting deeply with community, and competing at the very highest level in hybrid and adaptive sport. From the Hyrox World Championships to the gruelling Mallorca 312 endurance race, Francis has shown what’s possible when determination meets lifestyle-led wellness.

This conversation is full of honesty and inspiration – whether you’re newly diagnosed, returning to exercise, or curious about what adaptive sport looks like in practice.

Watch this episode on YouTube. Keep reading for the topics and timestamps.

Topics and timestamps00:43 Francis’s MS journey: diagnosis, fear, acceptance and choosing empowerment

04:17 Discovering Overcoming MS: a lifeline of hope

06:23 Discovering the power of community

07:59 Adapting lifestyle: challenges and triumphs

11:04 Family health: balancing MS and parenting

13:40 The Retreat experience: vulnerability and connection

16:32 Understanding hybrid and adaptive athletics

20:01 Training regimen: balancing endurance and strength

25:29 Winning the Hyrox World Championships

29:19 Diet and nutrition: balancing performance and health

31:38 Advice for the newly diagnosed: finding peace and community

More info and links* Connect with Francis on Instagram * Francis was on the Overcoming MS Webinar Physical Activity and MS * Learn more about Joe Dispenza’s work * Check out the Hyrox adaptive divisions * New to Overcoming MS? Learn why lifestyle matters in MS – begin your journey at our ‘Get started’ page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, Dr Jonathan White is joined by Dr Stephen Simpson-Yap, Senior Research Fellow at the Neuroepidemiology Unit (NEU) in Melbourne, Senior Research Fellow at the Neuroepidemiology Unit (NEU) in Melbourne, focusing on multiple sclerosis and other autoimmune conditions.

Together they unpack the complex relationship between diet and MS: why diet research is so challenging, what the current evidence tells us, how different MS diet programmes compare, and where the science is heading next. Steve explains how epidemiologists study diet, what makes high-quality research so difficult, and why large, long-term studies like HOLISM and the UK MS Register are so important to people with MS.

You can watch this episode on YouTube. Keep reading for the topics and timestamps.

Topics and timestamps01:53 How diet might influence MS risk, progression and disability

04:24 Why diet research is so hard

07:31 Inside a diet study – what it really takes to measure what people eat

11:27 Comparing MS diets (Overcoming MS, Whals, Best Bet, and more.)

15:06 How researchers actually study diet in MS

24:54 What we know so far Key findings from existing diet studies,

28:02 The future of diet research for MS and how large data sets could change everything

33:35 What this means for people with MS

More info and links* Learn more about the NEU * Read NEU research papers about MS * Hear more research in S3E11 NEU: What’s on the research horizon with Associate Professor Sandra Neate * New to Overcoming MS? Learn why lifestyle matters in MS – begin your journey at our ‘Get started’ page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to help us continue creating future podcasts, please leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of the Living Well with MS podcast we continue the discussion on diet as a key pillar of the Overcoming MS Program, and how to integrate the Overcoming MS diet dos and don’ts into one’s daily routine with nutritional therapist and Overcoming MS Facilitator Sam Josephs as our guest.

Topics and timestamps:01:25 Getting started with the Overcoming MS diet

05:41 Is fasting worth trying?

06:04 The 5:2 diet for fast-mimicking effect

10:54 Is there a connection between gluten and multiple sclerosis?

17:18 Tips on making cooking easier for people following the Overcoming MS diet

More info and links:* Part 1 of ‘The OMS Diet in a Nutshell’ is also available here * Learn more about diet as a key pillar of the Overcoming MS program * New to Overcoming MS? Learn why lifestyle matters in MS – begin your journey at our ‘Get started’ page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. In this episode we welcome Jack McNulty, professional cook and longtime follower of the Overcoming MS Program. Jack tackles plant-based recipe substitutions, answering community questions and sharing practical advice to help you adapt your favourite recipes while following the Overcoming MS diet.

Keep reading for the topics and timestamps.

Topics and timestamps01:00 Introduction to cooking with MS

01:44 Understanding the Overcoming MS diet pillar

03:47 Substituting dairy: a functional approach

10:33 Exploring vegan butter alternatives

15:35 The complexity of egg substitutes

25:09 Meat alternatives: flavour and texture

37:12 Replacing coconut milk in recipes

39:48 Buttermilk substitutes and cooking oils

45:15 Using cashew cream and final thoughts

More info and links* Listen to the other Ask Jack episodes * Connect with Jack at Vegan Weekly * Read the Overcoming MS books including the cookbook and handbook * Listen to Karen Lee’s episodes on the Overcoming MS diet

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What does it take to live well with MS for more than 40 years? For professor and theatre maker David Peimer, the answer lies in resilience, curiosity, and transforming anger into creative energy.

In this powerful and deeply reflective episode of Living Well with MS, David shares how he went from being given just four years to live to building a successful global career – teaching, directing, and writing award-winning plays – while following the Overcoming MS Program.

With honesty and humour, David explores how diet, stress management, and self-understanding helped him rebuild his health and his life. His story is a testament to hope, perseverance, and the belief that, even when faced with MS, we can learn to surf the wave rather than be swept away by it.

Watch this episode on YouTube here. Keep reading for the topics and timestamps and David’s bio.

Topics and timestamps02:02 David’s early MS journey and life-changing diagnosis
06:09 Facing paralysis, fear, and the turning point that sparked hope
11:48 How reading Judy Graham and following the Swank diet changed everything
17:43 Managing stress and anger: finding calm in chaos
23:16 Inside the Copaxone trial: early experiences with MS treatment
29:19 Rebuilding purpose through creativity and compassion
34:51 The power of community and connection
40:10 David’s advice for anyone newly diagnosed

More info and links* Learn about Judy Graham and her books * The history of Copaxone, the first DMT for MS * Learn more about David’s work * New to Overcoming MS? Learn why lifestyle matters in MS – begin your journey at our ‘Get started’ page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Welcome to the inaugural episode of the Living Well with MS podcast, where we are pleased to welcome Professor George Jelinek as our guest! Professor Jelinek is the founder of the Overcoming MS program and was, until recently, the head of the Neuroepidemiology Unit at the University of Melbourne. In this episode, he discusses how extensive scientific research is illuminating new ways to help people with MS live better and healthier lives through changes made to their diets and lifestyles.

Watch this episode on YouTube here.

Topics and timestamps00:10 Geoff’s journey with MS

01:15 Starting The Living Well with MS podcast

01:48 Introduction of Professor Jelinek

03:22 Professor Jelinek’s MS diagnosis

05:22 Roy Swank’s research paper on diet and MS

11:45 Overview of Overcoming MS

14:30 Mindfulness based meditation, is there any science to it?

22:12 Prevention tips for people with MS who have children

27:55 Will lifestyle factors enter the mainstream treatment?

31:15 Impact of diet on multiple sclerosis

More info and links:* New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, we’re excited to welcome Josie Crawley – poet, professor of nursing, and Overcoming MS community member. Josie has been living with MS for over 20 years, and she shares how poetry, exercise, honesty and joy help her navigate life with resilience and humour.

From the challenges of walking to the meditative calm of swimming, from embracing “JOYMO” (the joy of missing out) to choosing self-kindness over comparison, Josie’s reflections are moving, practical and full of wisdom for anyone on their own MS journey.

If you’d like to read any of Josie’s poems mentioned in this episode, you can find them here: A collection of poems by Josie Crawley

You can watch this episode on YouTube here.

Topics and timestamps00:00 Meet Josie Crawley and discover her journey with MS

05:42 The healing role of poetry in life with MS

09:09 Family, career and adapting to life with MS

16:03 How Josie discovered the Overcoming MS Program

18:46 Ageing with MS: acceptance and challenges

21:25 Why swimming and walking are Josie’s meditations

25:24 Finding joy and (challenge) in walking

28:15 Finding balance in life with MS

31:22 Navigating medication and treatment options

35:10 Balancing privacy and disclosure in work

More info and links* Read Josie’s scientific research on Research Gate or by using her Orchid ID 0000-0003-1011-3335 * This PDF contains a selection of Josie’s poetry referred to or about content discussed in this episode. You are welcome to share these poems, but please acknowledge Josie as the author, and the source if published. * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, we’re sharing highlights from a popular webinar on physical activity. Overcoming MS Program Facilitator Heather O’Neil hosts a fascinating conversation with renowned researcher Dr Robert Motl and community members Francis Loye and Duarte Valente. Together, they explore the science and lived experience behind why moving your body matters when you live with MS.

Watch this episode on YouTube.

Topics and Timestamps:02:46 Why exercise is ‘medicine’ for MS

05:50 Cells to society: how activity helps at every level

11:55 Personal experiences: community members share their stories

17:38 Overcoming challenges: motivation and mindset

23:38 Q&A: including questions on fatigue and the best types of exercise

29:25 Practical tips for starting and maintaining an exercise program

35:35 Final thoughts and encouragement to get started and keep going

More info and links:* Listen to S6E18 The latest research in exercise for MS with Dr Robert Motl * Listen to S7E10 A quick guide to the Overcoming MS Program with Heather O’Neil * Learn more about the exercise pillar of the Overcoming MS program * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of the Living Well with MS podcast we are pleased to have Véronique Gauthier-Simmons as our guest! Originally from France and now residing in Portugal, Véronique was diagnosed with MS at the age of 34, but through the Overcoming MS Program and her love of exercise found a way to make staying fit a meaningful part of her life. She now helps others do the same as an Overcoming MS facilitator and qualified yoga instructor and yoga therapist.

Watch this episode on YouTube here.

Topics and timestamps05:30 Véronique’s yoga business, Taming the Walrus

07:22 How do you decide which exercise is right for you?

12:54 Should one stay within their comfort zone, or push their boundaries?

16:25 What kind of exercises can you do if not fully mobile?

18:59 Between watching exercise videos or taking a fitness class, which is better?

More info and links:* You can learn more about Véronique’s professional background here. * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS – the podcast where we explore how lifestyle choices and evidence-based approaches can help people live full and healthy lives with multiple sclerosis – we look at the surprising benefits of dance with Tiffany Stott and Emily Davis from Scottish Ballet.

Tiffany leads Scottish Ballet’s Dance Health Programmes, and Emily recently completed her PhD on Elevate – a dance programme created specifically for people with MS. What makes Elevate stand out is its inclusivity: whether you’re seated, standing, brand new to dance or have years of experience, the classes are adapted so everyone can take part.

Join us as we explore how the arts and science come together to support people with MS, and why dance might be one of the most uplifting ways to live well.

Topics and Timestamps:01:00 Introduction to Dance for MS

01:57 Scottish Ballet’s health programmes

05:47 How the Elevate programme was developed

10:52 The research and evidence for Dance and MS

15:02 What a class looks and feels like

20:49 Emily’s PhD findings on Elevate

24:48 Overcoming barriers to participation

27:45 Benefits of dance for MS

30:48 How to get involved with Elevate

More info and links:* Learn more and join an Elevate Dance for MS class * Read Emily Davis’ research on Dance for MS * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast, please support the ongoing work and podcasts from Overcoming MS by leaving a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this inspiring episode of Living Well with MS, we’re joined by the incredible Brenda Snow. Brenda is a business leader, patient advocate, and the author of Diagnosed: The Essential Guide to Navigating the Patient’s Journey. Living with multiple sclerosis herself, Brenda opens up about the realities of life with a chronic condition – from the early phases of grief and anger to ultimately finding acceptance and purpose. She shares how patients can stay connected to their identity, seek support, and even turn anger into positive action.

Whether you’re newly diagnosed or years into your MS journey, Brenda’s insights will leave you feeling understood, supported, and empowered.

Watch this episode on YouTube here. Keep reading for the topics and timestamps.

Topics and timestamps:00:00 Introduction to Brenda Snow and her journey with MS.

08:28 Writing her book, ‘Diagnosed’: How Brenda turned personal experience into a guide for others.

15:30 Before the diagnosis: understanding the confusion and challenges of the early phase.

22:57 How to channel anger into action.

28:48 Supporting the supporters, why care partners need care too.

More info and links:* BrendaSnow.com * Snow Companies * Brenda’s LinkedIn * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this special episode of Living Well with MS, we’re sharing highlights from our ‘Ask Aaron’ webinar, recorded in front of a global audience. Our guest is the dynamic and much-loved Dr Aaron Boster – a board-certified neurologist specialising in multiple sclerosis.

Dr Boster answers a wide range of thoughtful, practical questions submitted by the Overcoming MS community. From medications and MRI scans to functional mushrooms, vitamin D, menopause, and lifestyle changes, he covered it all with his trademark clarity and energy.

If you’ve ever wished you could sit down with a neurologist who really understands MS, this episode is for you.

Topics and timestamps:00:00 Welcome and introduction

02:53 Understanding patient support in MS care

05:43 Symptom management and treatment options

08:41 Blood tests and regular health monitoring

11:44 Drug trials, research, and what’s on the horizon

15:52 MRI insights and tracking disease activity

18:46 Remyelination and alternative therapies

21:51 Women’s health, menopause and MS

24:42 Long-term management strategies

27:49 Diet, lifestyle, and the power of habit

30:36 The value of community and support networks

33:47 Final thoughts and closing remarks.

More info and links:* Listen to other episodes featuring Dr Boster * Check out Dr Boster’s popular YouTube channel covering all aspects of MS * Learn more about Dr Bove’s work on menopause and MS * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, we’re joined by Dr Agne Straukiene, a neurologist, researcher and MS specialist who advocates for proactive, lifestyle-based MS management. Dr Straukiene is also the host of the Bee Well with MS podcast, where she shares expert insights to support people living with MS.

Together, we explore why understanding your symptoms, using digital self-management tools, and making sustainable lifestyle choices can make a meaningful difference to your wellbeing. Dr Straukiene also shares highlights from the latest research and offers practical tips for preparing for clinical appointments.

Topics and Timestamps:01:59 Dr Straukiene’s journey into MS care

03:57 Why self-management matters

06:41 Using digital tools to track and manage MS

11:21 Recognising and understanding symptom patterns

15:47 How to prepare for clinical consultations

22:33 Lifestyle interventions and their impact on MS

29:47 About the Bee Well with MS podcast

37:06 Latest research into lifestyle and MS outcomes

40:33 Managing progressive MS

43:29 Where MS research is heading next.

More info and links:* Listen to S6E6 Advanced cell therapy for progressive MS with Dr Stefano Pluchino * Listen to Bee Well with MS with Dr Agne Straukiene * Learn more about Blue Zones which have the most centenarians per capita * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS, where we explore ways to live a full and healthy life with multiple sclerosis, we’re sharing highlights from the final session of our Refresh with Overcoming MS webinar series – a wide-ranging and engaging Q&A with Dr Jonathan White.

Jonny is not only a practising doctor and medical advisor to Overcoming MS but also lives with MS himself. In this lively and informative session, he answers real questions from the Overcoming MS community, covering everything from vitamin D, diet and symptom management to hormone replacement therapy, relapse vs progression, takeaway choices, fatigue and more.

Whether you’re just starting out with the Overcoming MS lifestyle or have been following it for years, this episode is full of warmth, relatable insight and practical advice you can use right away.

Topics and timestamps:01:15 Meet Dr Jonathan White and discover his journey with the Overcoming MS Program

02:51 Can HRT help women with PPMS in menopause?

04:55 What takeaway food can you enjoy on the Overcoming MS diet?

06:45 Swollen feet and legs – are they an MS symptom?

07:55 Does MS shorten life expectancy? Let’s look at the facts

09:40 Should gluten and dairy be avoided with MS?

12:20 What are paroxysmal symptoms – and should you worry if they return?

14:29 Tiny amounts of oil in foods: is it okay or a deal-breaker?

16:51 What’s new in MS research?

18:47 Does menopause speed up progression? Exploring relapse vs progression

20:22 Managing progressive MS and the idea of “smouldering MS”

21:17 Is coconut syrup Overcoming MS-friendly?

21:50 What if symptoms never fully go away? Tips for living with incomplete remission

24:44 Could propionic acid help people with MS? Gut health meets cutting-edge science

27:00 Stem cell treatment: cure, hope, or hype?

29:32 Fatigue and MS: can medication help?

31:34 What does it mean to have “inactive” MS – and can it still progress?

35:05 Worried about your children getting MS? What the evidence really says.

More info and links:* Evidence for HRT for women with MS * Menopause and MS * Blog Propionic Acid and MS * Study of Propionic Acid in MS * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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This is a bonus from the archives episode of Living Well with MS.

Navigating the range of medication choices for people with MS can be challenging. There are so many factors to consider – from effectiveness to side-effects – so we are fortunate to have Dr. Aaron Boster, an Ohio-based neurologist specializing in MS, as this episode’s guest on Living Well with MS to help demystify the myriad Disease Modifying Drugs that are presently available to manage MS.

Topics and timestamps:01:30 Introduction to Dr Boster

03:31 Medication levels of efficacy

08:22 Some of the most prescribed disease modifying therapies and how to choose one

09:53 Making the right choice when deciding to start a new medication

17:42 Medium and high efficacy drugs

30:06 Do the most effective medications always have the most side-effects?

33:10 Considering Haematopoietic Stem Cell Transplantation (HSCT)

More info and links:* Dr Boster’s YouTube channel * Learn more about Medication for MS * Learn more about the Overcoming MS program * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this inspiring episode of Living Well with MS, we’re joined by Kristen Karasek, a passionate advocate, dance teacher, and vibrant force in the MS community. Diagnosed at 24, Kristen has turned her MS journey into a mission to give back, raise awareness, and uplift others through movement and advocacy. Kristen is also the recipient of the Dorothy Corwin ‘Spirit of Life’ Award, a prestigious honour presented by the National MS Society to individuals who exemplify exceptional courage, compassion, and positivity while living with MS. This conversation explores everything from political activism to the healing power of dance, and how to find your voice as an advocate, whether in the doctor’s office or the wider world.

Topics and timestamps:01:54 Kristen’s MS diagnosis and journey

04:33 How healthy lifestyle habits have supported Kristen

06:02 Why therapy and peer connection matter when you’re newly diagnosed

08:07 The personal power of giving back to the MS community

09:10 How to get involved in State Action Days and political advocacy

11:21 The impact of dance and movement on MS symptoms

12:54 Advocating for the right healthcare team

14:32 How to advocate for yourself during appointments

15:33 What winning the Dorothy Corwin Spirit of Life Award meant to her

17:20 Kristen’s advice for those newly diagnosed with MS.

More info and links:* Kristen’s dance studio * Book: Multiple Sclerosis for Dummies * The Pacific Neuroscience Institute where Barbara Giesser, MD practices * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. In this episode, we’re sharing highlights from a recent webinar hosted by Overcoming MS Program Facilitator and Nutritional Therapist Karen Lee. Karen is joined by plant-based chef, Jack McNulty, and Overcoming MS community members, Melody Landwehr and Jenna Cox, to explore the diet pillar of the Overcoming MS Program. From practical cooking strategies and understanding fats, to batch cooking, eating out, and overcoming early challenges, our guests share a mix of lived experience and expert insight to help you feel confident and inspired in your approach to eating for MS health.

Topics and Timestamps: 01:17 Karen introduces the Overcoming MS diet pillar and describes what it involves

04:36 Jack shares his story, insights from the Overcoming MS Handbook, and practical cooking tips

19:53 Melody discusses her gradual, realistic journey into adopting the Overcoming MS diet

23:06 Jenna reflects on going dairy-free, shares a free recipe resource, and offers tips for eating out with confidence

28:58 The panel shares their go-to weeknight meals for busy days

31:15 Quick and easy snack ideas that fit the Overcoming MS way of eating

More info and links:* The Sensitive Foodie by Karen Lee * JennaCox.co.uk * Vegan Weekly by Jack McNulty * Watch other webinars by Karen Lee here * Listen to Jenna’s podcast episode here * Listen to podcast episodes by Jack McNulty * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of Living Well with MS – exploring topics relating to living a full and healthy life with multiple sclerosis – host Geoff Allix welcomes Jake Connor, Service Delivery Manager at Overcoming MS, for a deep dive into the charity’s evolving support services and what it means to be part of a global MS community. From his personal connection to MS through his mother’s diagnosis, Jake shares how his journey from the corporate world to the charity sector has been driven by purpose and empathy.

Jake talks through the range of Overcoming MS's evidence-informed offerings, including webinars, courses, retreats and the Live Well Hub, and the impact they have on individuals living with MS. He also introduces Living Well Live, Overcoming MS’s brand-new all-day hybrid event, designed to inspire, educate and connect the MS community both in person and around the world.

Topics and Timestamps:01:20 Meet Jake: his role at Overcoming MS and what drives him

02:51 A personal journey: Jake shares his MS connection

04:35 Finding purpose: why Jake joined the Overcoming MS team

07:39 Beyond support: the wide range of services we offer

10:33 All about the Pathway to Overcoming MS course

12:11 Awards, recognition and journal articles

13:13 Transformation at Overcoming MS residential retreats

16:33 Why our Living Well with MS webinars are so popular

18:31 Exploring community in the Live Well Hub

20:36 A new event for 2025: Living Well Live

More info and links:* Living Well Live * Connect with others following Overcoming MS on the Live Well Hub * Events including Discover Overcoming MS * Webinars + Replay with Dr Rob Motl + Replays with Dr Aaron Boster + Replay with Dr Michelle O’Donoghue * Overcoming MS Retreats * Pathway to Overcoming MS Course * New to Overcoming MS?Visit our introductory page * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS * Make sure you sign up to our newsletterto hear our latest tips and news about living a full and happy life with MS.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this episode of the Living Well with MS podcast we are pleased to welcome Sam Josephs as our guest. Sam is a qualified Nutritional Therapist and has worked as a retreat facilitator for Overcoming Multiple Sclerosis. In this episode, we demystify the Overcoming MS diet and provide helpful tips and tricks on how to hack the food portion of the Overcoming MS lifestyle and make it as scrumptious as possible!

Topics and Timestamps: 01:24 Sam’s journey with Overcoming MS

08:54 Basic recommendations for the Overcoming MS diet

10:26 What type of fish is included in the diet?

15:46 Tips and ideal substitutes for Overcoming MS-recommended foods

26:06 Navigating meals during seasonal holidays with the Overcoming MS diet pillar

29:46 Is chicken breast really a problem?

More info and links:* Listen to part 2 of ‘The OMS Diet in a Nutshell’ here * Learn more about Sam Josephs’ professional background * Learn more about the Overcoming MS diet recommendations * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this inspiring episode of Living Well with MS, we're joined by Rob Carter, Head of Income Generation at Overcoming MS. With over two decades of experience in the not-for-profit world – including organisations like the MS Trust and Youth Music – Rob brings strategic insight, compassion, and a deeply personal connection to his work.

Rob sits down with CEO Alex Holden to explore the power of community fundraising – and how every challenge, skydive, cake sale, or regular gift fuels the future of Overcoming MS.

Whether you're already fundraising or simply curious, this episode is packed with practical ideas, powerful stories, and motivation to make a difference.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:

01:44 Rob’s journey into fundraising and his personal connection to MS

06:29 Why fundraising is essential to the Overcoming MS mission

09:35 What is fundraising and how does it work?

14:45 Real life stories from independent Overcoming MS fundraisers

18:26 Big adventures: Overcoming MS organised challenge events

20:07 Fundraising for all: ideas beyond physical challenges

21:41 How to get in touch with the fundraising team

22:30 The huge impact of regular giving

25:42 Non-financial ways to support Overcoming MS

More info and links:

Donate to Overcoming MS
Sign up for Give as you Live
Sign up for Easy Fundraising
Join a fundraising event
Start your own fundraiser
Jane and Ian’s Door to Door Challege podcast episode
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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In this inspiring and info-packed episode of Living Well with MS, we welcome the brilliant Heather O’Neil – a social worker, Overcoming MS Program Facilitator, and member of the MS community – to break down the Overcoming MS Program in a clear and relatable way.

Diagnosed with MS in 2020, Heather quickly discovered the Overcoming MS Program and never looked back. With warmth and insight, she walks us through each pillar, from diet and Vitamin D to movement and mindfulness, sharing both evidence and her personal experience.

Whether you're new to Overcoming MS or need a refresher, this episode is your perfect starting point to explore how the Program can empower you to take charge of your health and well-being.

Topics and Timestamps: 01:54 Heather's MS journey

03:56 Discovering Overcoming MS

04:59 Becoming an Overcoming MS Program Facilitator

06:27 The Overcoming MS Diet explained

08:58 Sunlight, vitamin D and why they matter

11:49 The Overcoming MS approach to Physical Activity

14:27 Mindfulness and stress reduction

16:48 Medication as an Overcoming MS Pillar

17:48 Family health matters

19:54 Change your life, for life

21:05 How to connect with the Overcoming MS community

More info and links: * Join a Pathway Program * Learn more about Overcoming MS Retreats * Hear more from Heather on stress management * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Most people, regardless of whether or not they have MS, may think running a marathon is, simply put, crazy. While exercise is an important part of the Overcoming MS Program, many people with MS will have symptoms that preclude them from running long distances, or indeed running at all.

This Living Well with MS episode’s special guest, Alex Tsirigotis, is someone who not only runs, but has pushed his body to his limits by regularly running marathons. And the fact that he has MS is just a footnote in his story.

Topics and timestamps01:17 Alex’s symptoms, diagnosis, and experience with MS.

04:20 What lifestyle changes Alex’s diagnosis led to.

06:09 Finding out about Overcoming MS and learnings.

07:25 How long was it after you started following Overcoming MS did you start to see noticeable improvements?

09:40 Tips on implementing the Overcoming MS program.

12:39 Alex’s marathon running.

17:02 Tips for people with symptoms that can affect their ability to run.

20:10 Long-term side effects from running marathons.

21:03 What is the most important piece of advice for anyone contemplating starting the Overcoming MS program?

24:50 Reasons Alex runs marathons and what’s next.

More info and links:* Learn more about exercise as a key pillar of the Overcoming MS program * Learn more about Alex’s running coach services. * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Love, resilience and real talk – that’s what today’s episode of Living Well with MS is all about. We're thrilled to welcome husband-and-wife team Nikoma and Simone Bell, authors of Marriage & MS: Embracing Life and Love Beyond the Diagnosis.

Together, they open up about navigating life, love and MS – sharing practical advice on relationships, caregiving, intimacy, and creating space for honest conversations, especially in underrepresented communities. Whether you're living with MS, supporting a partner, or simply curious about how real connection thrives through life's challenges, you won’t want to miss this heartfelt and inspiring discussion.

Topics and Timestamps: 01:41 Meet Nikoma and Simone.

03:09 Top tips for keeping a marriage strong while living with MS.

05:52 Support for Black men with MS.

08:37 Common struggles among care partners and how to handle them.

10:27 How to talk to young children about MS.

12:15 Keeping intimacy alive in relationships with MS.

13:12 Managing feelings of guilt and being a burden.

14:37 Staying together despite MS – defying the odds.

17:30 Talking about what can’t be seen – invisible symptoms.

More info and links: * Learn more about Nikoma and Simone and their work * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS – the podcast where we explore real-life experiences and practical insights on living a full and healthy life with multiple sclerosis. In this episode, we are pleased to welcome trainee Program Facilitator Hayley Baker as our guest. Hayley is an artist and educator who was first diagnosed with MS in 2019. In this open and engaging conversation, Hayley talks about the importance of honest communication, tackling sensitive topics like intimacy and taboo symptoms, and the life-changing impact of connecting with the Overcoming MS community.

Topics and Timestamps: 01:32 Meet Hayley and discover her MS journey.

08:53 Becoming an Overcoming MS Program Facilitator.

10:30 The Overcoming MS Program pillars.

14:05 Hayley’s approach to the more challenging pillars.

15:39 Her approach to the Family Health pillar.

17:57 Opening up about taboo symptoms like bladder and bowel problems.

25:32 The benefits of attending an Overcoming MS Retreat.

27:11 Balancing honesty and intimacy with a partner.

32:20 Tips for someone newly diagnosed or new to the Program.

More info and links:* Read the Overcoming Multiple Sclerosis Handbook: Roadmap to Good Health * Join an Overcoming MS Circle * Listen to Sam Josephs’ podcast episodes * Learn more about Overcoming MS retreats * Read about managing bowel symptoms with MS * Read Hayley’s blog for Overcoming MS * Listen to Dr Aaron Boster’s podcast episodes * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

Support us: If you enjoy this podcast an and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS - your go-to podcast for making informed choices to support your health and well-being with MS! In today’s episode, we’re thrilled to welcome a very special guest: comedian and MS advocate Rabiah Coon! Rabiah joins host Geoff to share her journey with MS, how she discovered Overcoming MS through a video shoot, and why she believes that laughter should be the 8th pillar of the program.

Tune in as Rabiah blends humour with honesty, offering unique insights into life with MS while highlighting the power of positivity and community. You won’t want to miss this conversation!

Topics and Timestamps01:29 Meet Rabiah and hear about her journey with MS.

02:31 Finding hope: how Rabiah discovered Overcoming MS through a video shoot.

05:13 Making lifestyle changes: Rabiah shares how she has approached change.

07:15 Transcendental meditation and mindfulness tips.

10:05 Retreat reflections: what it was like to attend an Overcoming MS retreat.

13:37 How Rabiah became a stand-up comedian.

17:17 Laughter as the 8th Pillar.

21:00 Rabiah’s passion for volunteering and the importance of giving back.

26:44 Rabiah’s top tips for the newly diagnosed.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Watch the Hope Reborn music video * Volunteer with Overcoming MS * Learn more about Overcoming MS retreats * Learn more about Transcendental Meditation * Listen to mindfulness podcast episodes with Phil Startin + S5E14 Webinar highlights: Mindfulness and Meditation with Phil Startin + S5E19 Webinar highlights: Progressive MS with Phil Startin and Helen Rees Leahy + S6E21 Webinar Highlights: Reducing Stress through meditation and mindfulness with Dr Phil Startin + S7E04 Webinar highlights – Stress management and mental health * Join MS-UK's 8-week mindfulness based stress reduction * Check out Rabiah’s Website: https://www.rabiahsaid.com * Connect with Rabiah on social media https://linktr.ee/rabiahcomedy * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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In this episode of the Living Well with MS podcast we are pleased to welcome Dr Craig Hassed as our guest to demystify the practice of meditation and provide very sound reasons for why you should consider meditating for its wondrous stress-relieving effects. Dr Hassed, an expert on mindfulness-based stress reduction, will also provide some commonsense tips for successfully working meditation into your daily life.

Topics and Timestamps 01:59 The scientific evidence base for mindfulness.

05:57 What happens to the body under stress?

11:13 Is there a difference between chronic stress and acute stress?

14:38 Practicing mindfulness.

16:51 Should you get professional help as well as mindfulness training if you experience anxiety or depression?

19:58 Does religious faith reduce stress?

22:28 Should we keep a journal?

24:53 Is mindfulness the same as meditation?

30:35 Is it necessary to follow guided meditations?

36:15 Free online course on mindfulness.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Learn more about meditation and stress management as a key pillar of the Overcoming MS program. * Learn more about the Overcoming MS program. * New to Overcoming MS? Visit our introductory page. * Connect with others following Overcoming MS on the Live Well Hub. * Visit the Overcoming MS website.

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS – your go-to podcast for making informed choices to support your health and well-being with MS! In this episode we are pleased to welcome Dr Terry Wahls, a respected clinical professor of medicine, researcher, and someone with lived experience of MS. Diagnosed with secondary progressive MS, Dr Wahls has dedicated her career to exploring the impact of lifestyle interventions on MS and other progressive health conditions.

You can learn more about her work at terrywahls.com, or follow her on Instagram @drterrywahls, and on Facebook/Twitter at @TerryWahls.

Topics and timestamps01:30 Meet Dr Terry Wahls: her MS journey and the inspiration for her research.

07:35 Lifestyle and MS what the research really says about improving outcomes.

08:26 Various diets and their impacts on MS.

11:41 The role of dairy and its impact on MS.

13:22 The science of nutrition: what MS studies are missing and why it matters.

15:25 When will neurologists recommend a whole food diet as standard care?

20:16 Real results: practical symptom improvements through lifestyle changes.

24:42 MS in families: understanding risk and tips for reducing it.

27:46 Good stress: and how to harness it to live a longer, healthier life.

31:33 Hope in action: small powerful steps to lifestyle change.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Learn about Loren Codain and the Paleo Diet * Learn more about Barry Marshall’s work * Get involved in a study on lifestyle and MS * Attend the Dr Talks Multiple Sclerosis and Autoimmune Summit * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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This is a "Bonus: From the archive" episode of the Living Well with MS podcast.

Many experts believe that vitamin D is a key regulator of the incidence and severity of MS, and this is one of the reasons why ensuring sufficient intake of this critical natural resource is one of the pillars of the Overcoming MS Program. So, it’s timely that this episode of Living Well with MS picks the topic apart with a guest well-versed in his own right on the topic, Dr. Conor Kerley.

For more information on the latest vitamin D research and advice check out our webpage: MS & Vitamin D Deficiency | Overcoming Multiple Sclerosis

Topics and Timestamps:

01:29 General importance of Vitamin D

02:18 Why is Vitamin D especially important if you have MS?

02:44 Could MS cause low vitamin D rather than the other way around?

06:01 How to measure your Vitamin D level?

08:43 What’s a healthy level of Vitamin D to have?

11:38 What type of vitamin D should I take?

12:41 Balancing the benefits of getting Vitamin D from the sun with the risks of too much UV exposure

22:22 How often do I check my Vitamin D levels?

23:12 Anything else we should know about Vitamin D?

26:12 Are there any other supplements someone with MS should consider taking?

31:52 Is taking a multivitamin tablet better than individual vitamins?

35:14 What minerals should be considered?

37:51 Any future or current research into supplements?

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:

Learn more about Vitamin D as a key pillar of the Overcoming MS program
Learn more about the Overcoming MS program
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website
For more information on the latest vitamin D research and advice check out our webpage: MS & Vitamin D Deficiency | Overcoming Multiple Sclerosis

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Don’t miss out:

Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here.
Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS – your go-to podcast for making informed choices to support your health and well-being! In this episode, we’re diving into the fascinating world of gut health with Dr. Emma Short, a leading gastroenterologist. She joins Overcoming MS Facilitator and Nutritional Therapist Sam Josephs to explore the gut microbiome and its impact on MS, discover healthy habits for better digestion and overall health and untangle the role of pre-, pro-, and post-biotics in gut health.

Topics and Timestamps:01:43 Introduction to gastroenterology and Dr. Short’s groundbreaking work
03:20 What is the gut microbiome and why it matters for your health
08:36 How whole foods nourish your gut and support overall well-being
13:07 The hidden dangers of ultra-processed foods on gut health
14:31 The impact of lifestyle choices on the gut microbiome
18:04 Short-chain fatty acids, leaky gut, and MS – what’s the connection?
25:36 The ultimate daily gut-friendly foods you should be eating
30:17 Prebiotics and probiotics: What they do and how to use them
31:56 The ENERGISE acronym for health and wellbeing
36:31 Expert tips for lifelong healthy habits

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Follow Dr. Emma Short on Instagram * Read Dr. Emma Short’s book Healthy Gut, Happy You * Learn more about Dr Miguel Matthias’s work * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: * Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. * Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you like Living Well with MS, please leave a 5-star review.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, the podcast that helps you make informed choices to support your health and wellbeing with MS. This week we delve into stress management and mental health with insights from Overcoming MS facilitators Yasmin Neves and Dr Phil Startin. They are joined by community members Melanie Lown and Bill Morgan, who share their personal experiences.

Meditation has been shown to improve quality of life in people with MS but it’s not always easy to get going. As Phil shares, "When we run Overcoming MS retreats or events, often one of the first questions we ask the group is 'which steps in Overcoming MS do you find the hardest to adopt?' And it's always meditation."

If this resonates with you, tune in to gain valuable perspectives and practical tips to help you manage stress.

Topics and Timestamps:Personal experiences with stress management

00:56 Yasmin introduces herself and dives into the stress management pillar—and why it's key to thriving with MS.

05:26 Phil shares his journey as an Overcoming MS facilitator & meditation teacher and how mindfulness transformed his life.

15:36 Melanie opens up about her Overcoming MS journey and the importance of being kind to yourself while adopting the program.

21:53 Bill reflects on how his MS diagnosis led him to meditation—and why it became a game-changer for his well-being.

Example practices

29:13 Yasmin explores the benefits of gratitude and heart-centered breathing for emotional resilience.

31:02 Phil discusses how slowing down during stressful times can help you regain clarity and balance.

31:47 Melanie shares her top tips for shifting out of “fight or flight” mode and finding calm.

33:59 Bill explains the power of deep breathing and how it can support both mind and body.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Listen to Melanie’s Living Well with MS episode S5E30 on Mindfulness and Self-compassion * Overcoming MS guided meditations * Listen to Sue Tibble’s Living Well with MS episode on mindfulness * Learn more about John Kabat-Zinn * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here.

If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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This is a "Bonus: From the archive" episode of the Living Well with MS podcast.

In this episode of the Living Well with MS podcast we are pleased to welcome Andy McKenna, who has been living with MS without the use of MS medication since 2007. He is the driving force behind ‘Stoked on MS’ and through this, hopes to shine a light of hope on the reality of leading a healthy, productive and active existence by adopting the Overcoming MS way of life.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps

01:39 About Andy McKenna

03:32 Andy’s journey to becoming an avid mountain biker

05:31 How MS changed Andy's relationship with cycling

11:38 What limitations has your MS introduced to your active lifestyle, and how have you dealt with or overcome them?

20:00 What is Stoked on MS?

22:14 Discovering Overcoming MS and experience with a lifestyle approach to MS management

33:38 A piece of wisdom or inspiration to impart to someone newly diagnosed with MS

35:07 Professor Jelinek’s Overcoming MS book

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:

Learn more about Go where
Learn more about Stoked on MS
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

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Don’t miss out:

Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

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Welcome to Living Well with MS, the podcast that helps you make informed choices to support your health and wellbeing. In this episode, we’re joined by Becca Mullin, a neuro physiotherapist and Pilates instructor specialising in post-partum clients with neurological conditions. Becca’s work is driven by a crucial gap she noticed while working in a busy London hospital—pregnant women with neurological conditions often lacked guidance on balancing their symptoms with the physical changes of pregnancy. Since then, Becca has dedicated her career to helping people with MS and other neurological conditions stay active—especially during pregnancy. Tune in now to learn how you can stay active and navigate pregnancy with confidence!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Questions and Timestamps:01:36 Becca’s introduction

02:57 The difference between a regular and neuro physiotherapist

05:13 Pregnancy support for people with neurological conditions

08:08 The benefits of staying active during pregnancy

12:05 Key recommendations for pregnant people with MS

16:17 Barriers to activity and how to overcome them

21:01 Introducing NeuroNatal Pilates for people with neurological conditions

24:20 What is Pilates and how it can help with MS symptoms

28:12 Becca’s top tips for pregnancy with MS

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:

Learn more about Becca at uptonneurophysio.com
Follow Becca on Instagram
Exercise while pregnant infographic
Listen to S2E29 Pilates and MS: Building strength for everyone with Rachel Changer
Join the Live Well Hub
New to Overcoming MS? Visit our introductory page
Facebook
Instagram
YouTube
Pinterest
Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode.

Listen to our archive of Living Well with MS here.

If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. In this episode, we welcome back health coach and Overcoming MS facilitator Laura Crowder with other familiar faces. Joining Laura, Overcoming MS Handbook co-editor Professor Michelle O’Donoghue, Circle Ambassador Vickie Hadge, and community member Ann Halstead discuss their personal journeys with Overcoming MS. Together, they explore the challenges, triumphs, and transformative power of lifestyle changes in living a full and healthy life with MS.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps01:05 Laura Crowder’s MS journey

05:15 Professor Michelle O’Donoghue’s Overcoming MS journey

17:52 Vickie Hadge’s Overcoming MS journey

23:15 Ann Halstead’s Overcoming MS journey

28:22 The science supporting a plant-based diet for other diseases

30:32 Tips on not making two separate meals

33:00 Challenges introducing Overcoming MS to the family

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Watch the Overcoming MS Handbook webinar * Read the Overcoming MS Handbook * Michele O’Donoghue’s podcast episode S5E03 * Vickie Hadge’s podcast episodes Season 4 Episode 1 and Season 2 Episode 13 * The Esselstyn Heart Disease Program at Cleveland Clinic * Join the Live Well Hub * New to Overcoming MS? visit our introductory page * Facebook * Instagram * YouTube * Pinterest * Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here.

If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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This is a "Bonus: From the archive" episode of the Living Well with MS podcast.

In this episode of the Living Well with MS podcast we are pleased to welcome Dr Jonathan White as our guest! He is a practicing medical doctor in Coleraine, on the North Coast of Northern Ireland, who also works with Overcoming MS as a medical consultant and event facilitator. In this episode, we dig into some of the research that supports and helps advance the Overcoming MS Program.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:

01:35 Dr. White’s Diagnosis

06:30 The science that supports Overcoming MS

11:03 Pros and cons of following the Overcoming MS Program

12:33 History of the research behind Overcoming MS

20:40 Changes between the first and second editions of Professor Jelinek’s book

28:47 Possible future changes to the Overcoming MS Program

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:

Learn more about Dr. White’s professional background
Learn more about the Overcoming MS Program
Get Professor Jelinek’s book on Overcoming MS
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

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Don’t miss out: 

Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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In this episode, we welcome Charlie Peel, Healthcare Partnerships Lead at Overcoming MS. With nearly two decades of experience in neurology, Charlie brings a wealth of knowledge and insight in the field of holistic MS management.

Charlie joins CEO Alex Holden to explore the latest research on how lifestyle choices—like maintaining optimal vitamin D levels and fostering social connections—can positively impact life with MS.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps01:47 Meet Charlie and her unique journey that led her to Overcoming MS

05:19 Charlie shares her impactful role as Healthcare Partnerships Lead at Overcoming MS

10:52 A personal mission - why Charlie wanted to work for Overcoming MS

15:11 Dive into Charlie’s research paper on the life-changing outcomes of Overcoming MS retreats and Pathways courses

21:13 Explore the latest research in holistic management of MS

24:23 Discover the newest findings on high-dose vitamin D for MS

28:10 Autophagy’s role in remyelination

33:05 What the MS community can learn from research into other brain conditions

36:42 The power of connection - research on social connections, community and mental health

40:42 Charlie offers practical advice for anyone new to the Overcoming MS Program.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Bee Well with MS Podcast with Dr Agne Straukiene * Journal article: MS care: integrating advanced therapies and holistic management * ECTRIMS webinar 2024 learn more about the Vit. D trials and more * MS Brain Health Report * The British Society of Lifestyle Medicine (BSLM) podcast with Dr Fraser Quin * Read the studies Charlie cited in this episode: + MS care: integrating advanced therapies and holistic management + The D-LAY study under publication - presented at ECTRIMs Medscape Registration Results showed high-dose (100,000iUD every 2 weeks for 24 months) vitamin D3 supplementation was safe and well tolerated in CIS and RRMS (89% met 2017 McDonald criteria), and related to less disease activity in CIS + The beneficial role of autophagy in multiple sclerosis: Yes or No? + Dementia prevention, intervention, and care: 2024 report of the Lancet standing Commission + WHO Social commission It’s time to harness the power of connection for our health and well-being + The updated McDonald criteria for diagnosing MS * Join the Live Well Hub * New to Overcoming MS? visit our introductory page * Facebook * Instagram * YouTube * Pinterest * Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode.

Listen to our archive of Living Well with MS here

If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we are pleased to welcome community member George Mckinty as our guest! George is a bodybuilder from Wales who follows the Overcoming MS Program. He speaks with Geoff about adopting the Overcoming MS lifestyle, the unique aspects of being a man diagnosed with MS and exercise tips if you live with daily MS symptoms.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:15 George’s MS diagnosis and how he discovered Overcoming MS

04:00 Optic neuritis

05:20 Family history and genetic predisposition to MS

05:56 Adopting the Overcoming MS Program

08:27 Being a man diagnosed with MS

10:33 Accepting the diagnosis

12:02 Symptom management

13:34 Working out with MS symptoms

16:40 The 300 Challenge to support the Overcoming MS Charity

19:10 Positive outcomes from being diagnosed with MS

23:16 Tips for those just starting to adopt lifestyle changes

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Follow George on Instagram @GeorgeMckinty * Learn more about the 300 Challenge and how you can get involved * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re talking to Denise Iordache, a Cognitive Behavioral Hypnotherapist, who specialises in sleep and stress reduction. Because addressing sleep disturbances is important for overall health and managing MS symptoms, Denise and Geoff discuss ways to fall asleep, stay asleep and quickly fall back to sleep should you wake up in the night.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:05 Denise’s career and expertise

02:57 The mechanics of sleep and why it’s important

06:13 How much sleep do we really need?

10:00 The circadian rhythm, light exposure and the internal body clock

15:02 Sleep hygiene and the optimal bedroom setup

18:00 How to set up a bedtime routine

20:55 How to prevent waking in the night and how to fall back asleep if you do

25:15 Mindfulness and sleep

29:30 Keeping a sleep journal

32:26 Assign worry time during the day

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Denise’s recommended relaxation techniques: + Box breathing + Hypnotherapy + Guided editation + Schedule your worry time earlier in the day * Denise’s ‘Top 5 Tips’ for a stress-free bedtime: + Optimise your sleep environment: Invest in quality bedding, blackout curtains, and ensure your bedroom is a comfortable haven for rest. + Incorporate daily practices: Practice daily exercises such as mindfulness, meditation, self-hypnosis, or deep breathing, to manage stress effectively. + Establish a consistent sleep routine: Stick to a regular sleep schedule, creating a calming pre-sleep routine to signal your body that it's time to wind down. + Embrace natural light: Spend at least 30 minutes outdoors each day to benefit from natural light, positively impacting your sleep and overall well-being. + Reflect regularly: Journal your thoughts and feelings, asking reflective questions to gauge your progress and make necessary adjustments. * Journalling for wellbeing blog post * Research discussing Ghrelin and Leptin’s connection to sleep * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re sharing highlights from our webinar with Sam Josephs, a registered Nutritional Therapist and Overcoming MS facilitator. Sam’s husband was diagnosed with Multiple Sclerosis in 2002 which has shaped the direction of Sam’s career and gives her the compassion and unique hands-on knowledge to support so many others with the condition. Sam gave us a brilliant breakdown of the diet pillar of the Overcoming MS Program and some great meal and snack ideas.

This past webinar was recorded as part of our Refresh with OMS webinar series. Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:26 Find out about Sam’s background and qualifications

02:40 What is the Overcoming MS Program?

03:59 Diving into the Overcoming MS diet pillar

09:59 How can you feed your microbiome for optimal health?

08:43 The importance of fibre

10:54 What is a wholefood?

12:23 Cooking techniques compatible with the Overcoming MS Program

14:38 Easy and healthy snack ideas

16:34 Batch cooking Overcoming MS friendly meals

19:06 The immune benefits of drinking tea

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* If you enjoyed this, why not check out one of our other podcast episodes featuring Sam: + S5E8 Family friendly Foods with Sam Josephs Webinar highlights + S1E4 The OMS Diet in a Nutshell (Part 2) + S1E3 The OMS Diet in a Nutshell (Part 1) * Overcoming MS Meal planning tool * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. We are pleased to welcome Jack McNulty as our guest! Jack is a professional cook and a longtime follower of the Overcoming MS Program. In this episode, he answers questions from the community about fermented foods.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:35 What is fermentation and how does it fit with the Overcoming MS diet?

04:17 What do you need to begin fermenting at home?

08:07 Common pitfalls and how to avoid them

11:33 Dairy-free yogurt and kefir

18:07 Making kombucha

20:33 Homemade sourdough bread from a starter

28:23 Pickling vegetables

33:28 Koji, a cultured mold to make miso and soy sauce

37:45 Making apple cider vinegar

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Try Jack’s recipes for fermented foods here: * Read Jack’s newsletter at substack.com/ * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re thrilled to welcome back Dr Aaron Boster as our guest! Dr Boster is a board-certified Neurologist specialising in Multiple Sclerosis. He is a frequent guest on Living Well with MS and in this episode he’s here to talk about Medication, one of the pillars of the Overcoming MS Program. Specifically, Aaron goes into detail on a wide range of disease modifying therapies (DMTs) for MS, as well as discussing when people should start taking DMT’s, and what they should consider before they do so. There’s lots of useful information in this episode about many different DMT options – we hope you find it useful in making the right decisions for you. Let us know what you think!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:21 What are the medication choices for people with MS and how have they improved?

02:39 When should I start a DMT?

04:30 What should I consider when choosing a drug?

07:08 Alemtuzumab (Lemtrada)

11:14 Cladribine (Mavenclad)

15:05 Fingolimod (Gilenya)

17:13 Mitoxantrone (Novantrone)

18:39 Natalizumab (Tysabri)

21:42 Ofatumumab (Kesimpta)

25:01 Ocrelizumab (Ocrevus)

28:58 Ozanimod (Zeposia)

30:35 Rituximab (Rituxan, MabThera, and Truxima)

32:34 Siponimod (Mayzent)

34:59 Avonex/ Betaferon/ Refib/ Extavia

37:49 Glatiramer Acetate (Copaxone)

40:07 Dimethyl Fumarate (Tecfidera)

42:38 Diroximel Fumarate (Vumerity)

43:46 Plegridy

44:45 Ponesimod (ponvory)

45:41 Teriflunomide (Aubagio)

50:14 Low-dose Naltrexone

52:07 BTK inhibitors

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Dr Boster was on six previous Living Well with MS episodes: + S1E11: Making the Right Medication Choices + S2E17: Lifestyle Choices and Their Impact on MS + S3E43: Let’s Talk About Sex (and MS) + S5E5 Webinar highlights from Ask Aaron with Dr. Aaron Boster + S5E36 Webinar Highlights: Ask a Neurologist with Dr Aaron Boster + S6E19 Webinar Highlights: Ask a Neurologist with Dr Aaron Boster * Check out Dr Boster’s popular YouTube channel covering all aspects of MS * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re sharing the highlights from our webinar with the incredible Dr Phil Startin! Phil is an Overcoming MS facilitator who lives with progressive MS. He’s an expert in meditation and mindfulness and teaches Mindfulness Based Stress Reduction courses for people with MS. Phil gave us some brilliant information and really useful tips on how to meditate – it’s a fascinating listen whether you are a regular meditator or are just getting started with your practice. Let us know what you think!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:22 Phil’s background in meditation and mindfulness

03:33 The fight or flight response

04:49 How stress dysregulates our immune system

08:47 Meditation is clinically proven to help people cope with stress

10:41 Mini meditations to try throughout the day

13:49 Guided meditation

20:06 A definition of mindfulness

23:50 The benefits of awareness, including increased resilience

28:02 Mental health tips for your daily routine

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Phil Startin has been on two other Living Well with MS episodes: + S5E19 Webinar highlights: Progressive MS with Phil Startin and Helen Rees Leahy + S5E14 Webinar highlights: Mindfulness and Meditation with Phil Startin * Jon Kabat-Zinn's Mindfulness Based Stress Reduction * Dr Walter Cannon’s fight or flight response * Meditation expert Ian Gawler * Listen to meditation expert Craig Hassed + S5E13 Meditation tips with Professor Craig Hassed + S1E7 Building a daily meditation practice with Dr Craig Hassed * Shannon Harvey’s film My Year of Living Mindfully or listen to her podcast episode * Hardwiring Happiness by Rick Hanson * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re thrilled to welcome Yvette Sargood as our guest! Yvette is an Overcoming MS facilitator and a meditation teacher who lives with MS and follows the Overcoming MS program. In this fascinating episode, Yvette talks to Geoff about meditation and mindfulness, as well as her personal journey with the MS Program, including disclosing her diagnosis to her employer and how she overcame her chocolate cravings! There’s lots of useful information and tips in this episode (including a discussion on chocolate replacements!) We hope you enjoy it – let us know what you think!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:01:18 Yvette’s MS and Overcoming MS journey

07:05 The progress made on DMTs and discrimination since the 1990s

09:01 The benefits to starting the Overcoming MS program even long after diagnosis

11:26 The decision to start a disease modifying therapy

14:59 Her difficulties in adopting the Overcoming MS program

16:27 Overcoming her chocolate cravings and chocolate replacements

18:51 Maintaining a healthy weight on the Overcoming MS program

20:23 The benefits of following the Overcoming MS program

22:54 Disclosing a multiple sclerosis diagnosis to your employer

26:01 Becoming an Overcoming MS facilitator

27:46 What is mindfulness and why is it important for people with MS?

32:53 Misconceptions about meditation and stress reduction

35:42 Tips for people new to the Overcoming MS program

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Download the Headspace app for meditation * Learn more about Disease Modifying Therapies for MS * Listen to a podcast featuring OMSer chef * Read Yvette’s article on executives and disability * Learn more about mindfulness expert Jon Kabat-Zinn * Join a mindfulness course with Yvette through MS-UK * Become an Overcoming MS volunteer * To take part in the next Pathway to Overcoming MS course email events@overcomingms.org * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re sharing the highlights from our ‘Ask Aaron’ webinar, recorded in front of a global audience, with the incredible Dr Aaron Boster. Dr Boster is a board-certified neurologist who specialises in MS, and we’re delighted to have him answering a huge range of questions from our community! From medications to MRI’s and pregnancy to cold showers, Dr Boster gave us so many brilliantly informative answers - we hope you find this episode really useful. Let us know what you think!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:

01:49 Defining benign MS

05:05 How to get the most out of your time with your neurologist

09:32 The DMTs that help with brain atrophy

09:46 MRI’s as a way to show the rate of brain atrophy

18:20 Aubagio for secondary progressive MS

22:11 The future of Ocrevus dosing guidelines and becoming pregnant on ocrelizumab

26:31 Treating MS-relating dystonia

28:37 Treatments for MS-related bladder dysfunction

35:15 Low-dose Naltrexone for MS

39:00 The benefits of cold showers

39:38 Immune reconstitution therapies

43:22 Managing MS with diet and exercise

To join us live for the next webinar or watch the original presentation head to our website overcomingms.org

More info and links: Dr Boster was on five previous Living Well with MS episodes:

S1E11: Making the Right Medication Choices
S2E17: Lifestyle Choices and Their Impact on MS
S3E43: Let’s Talk About Sex (and MS)
S5E5 Webinar highlights from Ask Aaron with Dr. Aaron Boster
S5E36 Webinar Highlights: Ask a Neurologist with Dr Aaron Boster
Check out Dr Boster’s popular YouTube channel covering all aspects of MS
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re thrilled to welcome Dr Robert Motl as our guest! Dr Motl is a professor of kinesiology, nutrition and rehabilitation sciences at the University of Illinois at Chicago. He’s a top researcher in the field of exercise and physical activity for people living with MS and, in this fascinating episode, he talks to Overcoming MS facilitator Veronique Gauthier-Simmons about how much exercise is recommended for people with MS, the differences between lifestyle physical activity and structured exercise, and he explains how exercise works within the brain to slow MS progression. We learnt so much from Dr Motl, and hope it helps you kick start a new phase in your relationship with physical activity. Let us know what you think!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps:02:09 Overview of Dr Motl’s research lab and team

03:21 Dr Motl’s interest in multiple sclerosis

05:57 Key findings over the years of the benefits of exercise for people with MS

09:32 Lifestyle physical activity vs. structured exercise for people with MS

15:03 How much exercise is recommended for people with MS?

17:39 Exercise as a disease modifying behavior

20:28 What part of the disease progression does exercise help?

22:12 Exercise’s effects on the brain

25:50 Who benefits the most from exercise?

28:42 Social prescribing of exercise for people with MS

31:16 Exercise’s effects on mood for people with MS

34:54 How to participate in future studies

36:16 The benefits of a holistic approach to MS management

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links:* Learn more about Veronique Gauthier-Simmons * Learn more about Dr Motl’s Exercise Neurology Reseach Laboratory * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, the podcast that empowers you to take control of your health and wellbeing. Today we’re sharing the highlights from our webinar on ‘Resilience following Overcoming MS’ with the fantastic Dr Rachael Hunter. Rachael is a clinical psychologist and senior lecturer in clinical and health psychology at Swansea University. She's an OMSer herself and wrote the chapter on resilience in the Overcoming Multiple Sclerosis Handbook. She gave us so much interesting information and many helpful tips - we hope you find this really useful in bringing resilience into your own life. Let us know what you think!

Watch this episode on YouTube here and keep reading for the key episode takeaways.

Topics and Timestamps: 00:59 Dr Hunter’s professional background and an overview of the Overcoming MS Program

04:30 What happens to the body physiologically during a stress response

06:55 Maslow’s hierarchy of needs and the fundamentals of wellness

09:37 Managing emotional wellbeing and scheduling “worry time”

14:30 Managing anxiety through self-compassion and mindfulness

17:24 The benefits of positive relationships with others

Want to learn more about living a full and happy life with multiple sclerosis?  Sign up to our newsletter to hear our latest tips.

More info and links: * Dr Rachael Hunter was featured on S4E67: ‘Building Resilience with Dr Rachael Hunter’

Follow Dr Hunter on Facebook, Instagram and Twitter
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, where we are pleased to welcome Jenna Cox as our guest! Jenna is a nutritional therapist who lives with MS and is an Ambassador for the Bristol, UK Circle. In this episode, she talks about dairy alternatives, calcium and bone density on a plant-based diet and probiotics for the gut microbiome.

Topics and Timestamps: 00:58 Jenna’s MS diagnosis

05:12 Adopting the Overcoming MS Program

09:19 Jenna’s work as a nutritional therapist

12:22 Diary-free swaps for milk, cheese and other products

15:16 Calcium and bone density on the Overcoming MS diet

21:30 Nutrition for PMS and PMDD

27:15 Probiotics and the gut microbiome for people with MS

33:31 The link between MS and cardiovascular issues, especially for women

More info and links: * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Learn more about Jenna’s work at www.jennacox.co.uk * Follow Jenna on Instagram @jennacoxnutrition * Check out the Overcoming MS diet recommendations * Check out the Menopause and MS roundtable hosted by Dr Jonny White * Visit the Overcoming MS website

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and vibrant life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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In this episode, we’re sharing highlights from a ‘talkhealth’ webinar: ‘TH+ Expert Webinar with Dr Jonathan White: Overcoming MS’. In the webinar, Overcoming MS medical advisor, Dr Jonathan White speaks about the evidence and benefits of the Program, his personal MS journey and making healthy changes for life. ‘talkhealth’ is a patient-centric online health community based in the UK, that provides a full range of support services.

Topics and timestamps: 02:25 Intro: Jonathan’s MS diagnosis and Overcoming MS journey.

09:27 The importance of a compassionate diagnosis.

10:14 Finding hope with an MS diagnosis with a healthy lifestyle.

11:29 An overview of the Program.

12:35 How Overcoming MS can prevent other conditions.

13:14 The history of the Overcoming MS charity.

16:27 Connecting through Overcoming MS Circles.

18:39 The research behind the Overcoming MS Program.

22:41 The benefits of physical activity for people with MS.

24:53 Mindfulness and mental health.

28:21 Disease-modifying drugs for MS.

32:14 Preventing MS in family members.

39:24 How to change your life, for life.

42:13 The increase in plant-based options at stores and restaurants.

More info and links: * Watch the original webinar * Find out more about ‘talkHealth’ * Hear Jonathan on other episodes including the 100th Episode, the menopause roundtable, an introduction to Overcoming MS, * Learn about creating habits with Atomic Habit by James Clear * Learn about meditation from Ten Percent Happier * Sign up to the 6 Months to Overcoming MS course * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out:  Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, where we are pleased to welcome Jane and Ian Airey-Regardsoe as our guests! Jane is a member of the Southwest, UK Circle and her husband, Ian is cycling to France as a fundraising challenge, supported by Jane, to benefit Overcoming MS. They chat about adopting the Overcoming MS Program as a couple, their fundraising challenge and why they’ve chosen to support the charity.

Watch this episode on YouTube here.

Topics and Timestamps: 01:22 Jane’s MS diagnosis and Overcoming MS journey.

06:49 Adopting the Overcoming MS Program as a partner.

10:08 Tips for adopting the Overcoming MS Program.

11:17 How to improve low vitamin D levels.

14:53 Jane and Ian’s ‘Door to Door cycle’ fundraiser.

16:56 The impact of raising money for Overcoming MS.

18:24 How to prepare for a physical challenge.

24:03 Tips for starting your own fundraising efforts.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Door to Door Challenge Facts: + Date: 8th to 27th September + Distance: 950 miles (1,564 km) - Total Ascent: 59,000 ft - Total Descent: 46,400 ft + Route: Holcombe Rogus, Poole, Normandy, Britanny, The Loire, Poitou-Charentes, Limousin, Midi Pyrenees * View the route here * Contribute to Jane and Ian’s fundraising page * Follow Jane and Ian’s blog * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, where we are pleased to welcome Rachel Burn as our guest! Rachel is a Psychotherapeutic Counsellor and follows the Overcoming MS Program. In this episode, Rachel talks to Geoff about who should work with a therapist, how to choose a therapist, how to unpack our emotions and how to know if you’re a highly sensitive person.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:46 Rachel’s background and her MS and Overcoming MS journey.

08:14 Who should work with a therapist?

09:49 How you should choose a therapist and style of therapy.

12:27 How to unpack your emotions scientifically as waves of chemicals.

16:06 Unhelpful tactics of clinging to emotions or suppressing them.

19:29 The connection with highly sensitive people (HSPs) and autoimmunity.

21:43 How to know if you’re highly sensitive.

26:05 The power of the Overcoming MS community for the newly diagnosed.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Connect with Rachel on the Live Well Hub * Follow Rachel on TikTok @born_a_bodymind * Listen to Craig Hassed’s episode on meditation tips

Find out more about the books that Rachel mentions:

Gabor Mate’s book When the Body Says No
Elaine Aron’s book The Highly Sensitive Person
Bessel van Der Kolk’s book The Body Keeps The Score
Susan Gehrig’s book Why Love Matters
Lisa Feldman Barrett’s book: How Emotions Are Made
'Key to Successful Therapy'
Read about the 90-second life of an emotion
New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, where we are pleased to welcome Bee Grzegorzek as our guest! Bee is the Inclusive Communities Manager for UK-based charity, Attitude is Everything, which connects disabled people with music and live event industries to improve access together. They talk to Geoff about making a festival safe and enjoyable, her top tips for finding accessible venues and red flags to look for in a venue’s accessibility.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 00:56 Introduction: What is Attitude is Everything?

03:10 Environmental, organisational and attitudinal barriers to access.

05:34 Advances in accessibility in the last 20 years.

07:36 Whose responsibility is it to educate people about accessibility?

08:57 Bee’s top tips for finding accessible venues.

10:49 Red flags to look for when asking about a venue’s accessibility.

15:13 What to do if there’s an accessibility problem during an event.

17:52 Bee’s recommendations for making a festival as safe and fun as possible.

21:51 How to navigate food at venues with dietary requirements.

23:50 The benefits of accessibility scheme cards.

25:21 Personal assistant tickets.

26:38 Helping disabled artists get their access needs met.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * UK Access Card * Hynt Scheme for Welsh access * MS Society “I have MS” card for access needs * Visit Attitude is Everything’s website * Overcoming MS chef cards for dietary needs * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Living Well with MS, where we explore topics relating to living a full and healthy life with multiple sclerosis.

In this episode, we are pleased to welcome Dr Fraser Quin as our guest! Dr Quin is the Executive Director of the British Society of Lifestyle Medicine (BSLM), a charity that promotes the role of lifestyle medicine in improving people’s health and wellbeing. He speaks to Dr Jonathan White about the role of lifestyle medicine for people with MS, the importance of sleep and how healthcare professionals are training to support their patients with lifestyle medicine.

Topics and Timestamps 00:00 Dr Quin’s background and role at the British Society of Lifestyle Medicine (BSLM).

04:02 What is lifestyle medicine? And what isn’t lifestyle medicine?

07:02 The role of the BSLM in the healthcare landscape.

10:28 The history and future of lifestyle medicine across the globe.

16:08 Why sleep is such an important pillar of lifestyle medicine.

20:28 How doctors are being trained in lifestyle medicine.

29:27 The #1Change Campaign: How making one small healthy change can change your life.

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More info and links: * Learn more about the British Society of Lifestyle Medicine * Find out more about the Royal College of General Practitioners (RCGP) * Find out more about the Royal College of Psychiatrists * Watch back our livestream on talking to skeptics with Dr Jonathan White and Yasmin Neves * Learn more about the #1Change campaign * Learn about creating habits with Atomic Habit by James Clear * Sign up to the 6 Months to Overcoming MS course * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Dr Quin’s bio: Dr Quin’s career Dr Fraser Quin is the Executive Director of the British Society of Lifestyle Medicine, European Lifestyle Medicine Council and World Lifestyle Medicine Organisation.

Fraser is currently a Non-Executive Director of Ark Housing Association and was previously Chair of Deaf Action, Scotland’s largest Deaf charity.

His academic background Fraser also has a background in higher education and was formerly a Senior Lecturer in Environmental Economics, completing his PhD at Edinburgh University.

His personal life Fraser is a strong advocate for Lifestyle Medicine and is in his own words “living the dream” as a keen cyclist, with his type 2 diabetes currently in remission.

He is also an avid motorcyclist and regularly tours Europe and the UK on his Triumph.

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In this episode, we’re sharing highlights from our webinar ‘Accessible Movement for the Overcoming MS Community’ with Dr Véronique Gauthier-Simmons. Véronique is a qualified yoga therapist who follows the Overcoming MS Program and supports Overcoming MS as a facilitator. She discusses the benefits of exercise, how to make it more accessible and how to stay motivated.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:01 The benefits of exercise.

07:09 How you can set SMART goals to stay motivated to exercise.

12:40 How you can modify physical activity for your ability and balance.

15:14 Breathing exercises to work your core muscles.

20:46 Examples of chair-based exercises for the arms, legs and spine.

29:15 Your intention can change how an exercise feels in your body.

34:20 Dopamine release doesn’t occur until six weeks into a new exercise routine, so don’t give up!

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More info and links: * Watch the original webinar * Read: The Joy of Movement by Kelly McGonigal * Find out more about Veronique’s movement classes * Try an Overcoming MS exercise video * Join Veronique's free live classes * Learn more about Veronique * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS, where we are pleased to welcome Kim Venter as our guest! Kim is a trained teacher, professional psychological counsellor, and nutritional consultant. She is also currently training to become a facilitator for Overcoming MS. In this episode, she discusses how to switch to a plant-based diet, how to make your healthy habits stick and her experience starting disease-modifying therapy.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:04 Kim’s diagnosis and MS journey

06:45 Switching to a plant-based diet.

07:38 Top tips on meal planning and grocery shopping on the Overcoming MS diet.

10:08 Making your healthy habits stick.

13:09 Mindful activities you can do to manage your stress.

15:09 Her experience with disease-modifying therapy.

17:23 How diet and pharmaceuticals complement each other.

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Listen to Kim’s episode from season 2 * Create your own Overcoming MS meal plan * Learn more about MS and Mindfulness * Learn more about medications for MS * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

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Kim’s bio: Kim Venter is a British South African currently living in London who was diagnosed with MS in 2010.

Kim’s professional background She is a trained teacher, professional psychological counsellor and nutritional consultant who thoroughly enjoys working with people and helping them overcome various challenges in their lives.

Kim is particularly interested in health psychology, which explores the impact on the mind of what is going on in the body. She feels that this training has increased her awareness of the psychological impact MS has and how the food we eat affects the health of our minds.

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In this episode, we are sharing highlights from our webinar, ‘Your opportunity to ask a qualified nutritional therapist about the Overcoming MS diet’ with Sam Josephs. Sam is a qualified nutritional therapist and Overcoming MS facilitator. In this episode, she discusses fasting patterns, tips for Overcoming MS-friendly meals on a budget and how to prevent weight loss.

Keep reading for the key episode takeaways.

Topics and Timestamps: 02:40 Can fasting help you reduce inflammation?

05:58 How much calcium is safe for you with high doses of vitamin D3?

08:11 Comparing benefits: flax oil supplements vs Omega-3 rich foods.

09:40 Can you have coconut or meat in the absence of Overcoming MS-friendly options?

11:25 Vitamin D2 vs D3 in fortified foods.

13:40 The link between eating dairy and osteoporosis.

16:48 The different types of saturated fats.

19:11 Can you ever eat fast food or processed foods?

22:12 Can you eat egg yolk or meat occasionally?

25:59 How much vitamin K should you have to prevent calcium buildup?

27:16 Is there a limit to the number of egg whites you can eat?

28:18 Can you eat lean meat on the Overcoming MS diet when trying to put on weight?

30:12 What minerals can you take to help with spasticity and tight muscles?

21:46 Tips for cooking Overcoming MS-friendly meals with a busy schedule.

36:48 Snacks to help you prevent weight loss on the Overcoming MS diet.

40:23 Alternatives to flax oil for Omega-3 supplementation

41:59 The benefits of a variety of whole grains for your gut bacteria

44:20 Budget tips for cooking Overcoming MS-friendly meals

Selected Key Takeaways: Highly processed foods have negative health implications.

20:11 “Highly processed foods sometimes irritate the gut lining, which can affect our friendly bacterial populations. We're only just starting to understand the detrimental effects of some of these unknown food chemicals, not to mention high levels of salt, and high levels of sugar, all of which on a metabolic level are not good for us. Salt can cause excretion of calcium, which we're trying to retain. The sugars can cause metabolic issues, things like becoming overweight and obese.”

A variety of whole grains is beneficial for the gut.

42:35 “It’s important not to rely too heavily on one grain or another. But to keep that variety because each grain has a different nutritional profile and will be broken down differently in the body. The more variety you have with your grains, the more you're encouraging healthy bacteria which indirectly calms MS activity so think about different rice: what about wild rice [or] the red rice? What about buckwheat? Have you tried quinoa yet?”

There are multiple intermittent fasting methods to suit your lifestyle.

03:05 “Some people do the five-two diet, which involves eating normally five days of the week, and then just eating dinner on two days of the week, consuming much lower calories. You could fast overnight for 16 hours and then eat your food in a much smaller window of eight hours. It could be done as a water fast where you don't eat anything at all, and just drink water one day a week or a couple of days a month.”

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More info and links: * Sam Josephs has been featured on S1E3, S1E4, and S5E8 * Check out Overcoming MS-friendly recipes * Create your Overcoming MS Meal Plan * Read Sam’s bio * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

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Welcome to Living Well with MS, where we are pleased to welcome Sue Tibbles as our guest! Sue is an MS nurse and Overcoming MS facilitator who follows the Program. She is a qualified mindfulness teacher with a Master’s in Mindfulness from the University of Aberdeen. In this episode, she discusses tips for setting up a mindfulness practice, the role of stress and MS and shares some different mindfulness practices.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:19 Sue’s stress-related MS diagnosis.

05:59 Navigating the difficulties of starting a mindfulness practice.

09:24 Effective ways you can settle the mind.

10:54 Practical tips for setting up your own mindfulness practice.

13:05 The role of an MS Nurse.

16:23 How to talk to your healthcare provider about the Overcoming MS Program.

18:52 Tips for when you are newly diagnosed or new to the Program.

24:51 The impact of stress in MS flares.

30:21 Formal vs informal mindfulness practices.

Selected Key Takeaways: Don't stress if your healthcare professional initially dismisses the Overcoming MS Program

17:03 “I think it's a really nice opportunity for you to be able to teach [your healthcare professional about the Program]. If you come across resistance from them, I don't think there's an awful lot of point in becoming resentful about that. That's not going to achieve anything at the end of the day. There is lots of support within [the] Overcoming MS [community], if you're not getting it from your MS nurse or your neurologist. Although I think a lot of healthcare professionals are becoming better at being open about these things.”

We can’t control what’s going on outside of us, but we can control our response to it

24:51 “I will regularly say to my patients, 'We can't change what's going on outside of us, we can't change that stressful situation at work, we can't change the builders coming in and messing up. We can't change any of that, but we can change our response to it.’ That's what we need to work on, and mindfulness helps with that.”

There are no downsides to following the Overcoming MS Program

34:30 “When I was first diagnosed and discovered the Program, I remember thinking to myself, ‘What have I got to lose? By eating a bit more healthily, doing a bit more exercise, [and] doing a bit of mindfulness, what have I got to lose? What is there to gain?’”

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More info and links: * Read the Overcoming Multiple Sclerosis book * Learn more about Professor Jelinek’s story * Listen to S5E13 Meditation tips with Professor Craig Hassed * Find out more about the Overcoming MS Pop-up Tour in 2024 * Check out one of our guided meditations * Read Sue’s bio * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS, where we are pleased to welcome Dr Stefano Pluchino as our guest! Dr Pluchino is a Professor of Regenerative Neuroimmunology at Cambridge University and has been researching stem cell therapy for progressive MS. In this episode, Dr Pluchino speaks to Geoff about what advanced cell therapy is, the success of his phase one trial and what the future of DMTs looks like indicating what people with MS may experience.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:31 Dr Pluchino’s background and research into stem cell therapy for progressive MS.

02:52 The difference between types of MS.

05:09 Navigating DMT options for progressive MS.

08:40 Dr Pluchino’s advanced cell therapy research trial: The success of phase one and plans for phase two.

21:05 How advanced cell therapy compares to HSCT or bone marrow transplants.

26:02 What it means for the future of DMTs.

33:39 How you can be part of groundbreaking MS research and trials.

Selected Key Takeaways: There are nuances in types of MS beyond ‘relapsing’ or ‘progressive’.

04:23 "It is becoming more complex between active and non-active types of primary and secondary progressive MS where activity is attributed to other episodes. Clinical episodes of disease or radiologically evident episodes of disease, which can be identified by the use of contrast agents at the time of the MRI. So, they are very complex very heterogenous types of disease, with or without activity, which inevitably undergo accumulation of neurological deficits.”

The next generation of DMTs will target progression rather than relapses.

06:39 “What's becoming very interesting is that [over the last] few years, there is a general worldwide consensus that progressive MS is becoming and has become a clinical unmet need. The old MS world is concentrating on financing, funding and efforts towards stopping MS through the development of a new generation of DMDs which will eventually target progression rather than relapses.”

The future of advanced cell therapy research will look at remyelination, reduction of inflammation and neuroprotection.

19:10 "There is space for assessing whether a proportion of the injected cells [can] differentiate in vivo into new myelin-forming cells. There is a space to assess whether some of the cells [can] increase the survival of neurons in the brain. There is space to assess whether the transplanted cells [can] reduce the type of inflammation which characterises progressive MS, which is what we call a smouldering inflammation.

These highly diffuse homogeneous, low-level activations of microglia (immune cells of the central nervous system) and astrocytes (star-shaped cells that hold nerve cells in place) might be reduced by means of advanced cell therapy and the reason why I am specifically alluding to these three major biological mechanisms of disease, remyelination, reduction of inflammation and neuroprotection is because we have managed to identify each of these mechanisms in clinically relevant animal disease models in the last 25 years. So, there is [an] expectation that a clinical trial designed in a way that will allow us to establish the efficacy of the treatment will reveal what we have established already in one of these models.”

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More info and links: * Video on Early-stage stem cell therapy trial shows promise for treating progressive MS * Dr Pluchino’s website * Dr Pluchino’s bio * If you have progressive MS you may be eligible for the Octopus trial * Learn about HSCT from Professor Richard Burt in Season 5 Episode 25 * Read about the Shinya Yamanaka and John Gurdon’a Nobel Winning iPSC technology * Find out more about the latest research in progressive MS from the International Progressive MS Alliance

New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

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Welcome to Living Well with MS, where we are pleased to welcome Laura Crowder as our guest! Laura is a health coach and recently joined the Overcoming MS team as an Overcoming MS facilitator. In this episode, she talks to Geoff about what the ‘Change your life for life’ pillar means, how to make lifestyle changes easier to adopt and the importance of looking at your overall lifestyle.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:02 Intro: Laura’s MS diagnosis.

02:08 Laura’s new role as an Overcoming MS facilitator.

03:48 Change your life, for life: What it means and how you can implement it.

08:18 How finding your deep ‘why’ makes lifestyle changes easier to adopt.

13:40 How you can feel empowered by following the Overcoming MS Program.

15:28 The impact of reducing alcohol on your physical and mental health.

25:48 What it means to feed the soul and the body.

Selected Key Takeaways: Positive lifestyle changes can have immediate health effects.

05:08 “The minute I read [the Program was] evidence based, I thought, ‘I've got to read this.’ I read the entire book, and I jumped straight in. I implemented the diet and the vitamin D straight away, I couldn't do much about the exercise at the time, because I was still off my feet. Eventually, I started walking and then running. It was brilliant. I felt the effects instantly, I think because my previous lifestyle was so poor.”

Some people find reducing alcohol consumption can have a positive impact on mental and physical health.

17:05 “Karen Law speaks about this in the Overcoming MS Handbook about how she just noticed that her stress response was better without alcohol in the mix. I think that was probably quite a significant part for me as well. My running improved hugely, I actually completed my first marathon last year, and just my health in general [improved]. So, for me, I decided that I didn't want to start drinking again.”

Our health is impacted by our overall lifestyle.

27:00 “Our health is not just what we eat, it isn't just exercise [or] supplementation. Things like our career, relationships and finances, these aspects of our lives are so important in terms of nourishing us. If we're dealing with conflict or unresolved issues, or if we have got very destructive or negative relationships in our lives, that's going to have a really adverse effect on our health, even if we're eating all the superfoods in the world.”

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More info and links: * Check out our upcoming Overcoming MS events * Read the ‘Change Your Life for Life’ chapter in the Overcoming MS book or the Overcoming MS Handbook * Watch charity founder Linda Bloom’s story of hope * Find out more about spiritual and health teacher Caroline Myss * Read Laura’s bio * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub

Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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In this episode, we are sharing highlights from our webinar, ‘Mental Health and Wellbeing’ with Michelle Overton. Michelle is a qualified counsellor and Mental Health First Aid Instructor Trainer. She discusses the impact of life’s challenges on your mental health, coping mechanisms for stress and her top self-care tips.

You can watch the original webinar here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:03 Michelle shares her own mental health journey.

06:05 How does mental health shape your self-esteem and confidence?

08:27 The impact of life's challenges on your mental wellbeing.

11:00 Stress and how it can affect your DNA.

13:53 Shifting from unhealthy to healthy coping mechanisms.

19:14 Michelle’s top self-care tips for improving your mental health.

24:02 The power of listening.

25:46 How you can find ways to improve sleep and mindful practices.

Selected Key Takeaways: Mental health impacts many aspects of life.

07:01 “Confidence can be gauged in new situations [by] learning new skills [or] it could be in a workplace. Self-esteem is how you value yourself on the inside. Our mental health will govern how we feel, how we think, how we behave and how we manage change. It will [also] govern how we make, sustain and end relationships.”

Stress can impact our physical health.

10:35 “After you've been experiencing stress for more than two weeks, your body will start to kick out hormones. Your double helix is your DNA and at the bottom of it, you've got the bottom of your shoelace strings that keep it together at the bottom, when the hormones are being kicked out from the stress, what happens is the shoe lay strings get corroded, and it comes undone. And this is when we start to get rogue DNA going around. And that's why it's been linked to being carcinogenic."

Find what works for you and your mental health.

25:52 “It's finding what's right for you. I find talking has been a really helpful space for me, whether that's in therapy, or whether it's support services. Making sure that you're hydrated as well. Water can be a very simple thing that can really help instantly.”

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More info and links: * Watch the original webinar * 5 Ways to Wellbeing from Mind * Follow Michelle on social media on LinkedIn or Instagram * Read Michelle’s bio * Study: Effects on DNA Damage and/or Repair Processes as Biological Mechanisms Linking Psychological Stress to Cancer Risk

New to Overcoming MS? Visit our introductory page
Join a Circle and connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

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Welcome to Living Well with MS, where we are pleased to welcome Yasmin Neves as our guest! Yasmin is an HR professional and recently joined the Overcoming MS team as a facilitator through our ‘Train the Trainer’ programme. In this episode, she talks to Geoff about topics to help you with your work: navigating work with MS, how to talk to your employer about your MS, taking time off work for MS and the pros and cons of being self-employed after an MS diagnosis.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:11 Intro: Yasmin’s MS journey.

04:10 Yasmin's new role as an Overcoming MS facilitator.

08:14 Navigating your work with MS: when and how you share your diagnosis with your employer.

13:40 Job interviews and MS: should you disclose or not disclose?

18:50 Taking time off or leaving work with MS: practical considerations for you to think about.

26:32 Self-employment after an MS diagnosis: weighing up the pros and cons.

Selected Key Takeaways: All the adjustments you can ask your workplace for.

17:23 “In terms of adjustments whilst you're at work, it could be adjusting your working hours, it could be adjusting to working from home more or working at a different location. It could be changing your setup or how you sit on a chair or at your desk. The list is endless. They have to be tailored to your MS, how your symptoms affect you and what is needed as [part of the] job. It's all about making sure that you are given the support for you and your role.”

Keeping motivated and having a purpose when taking time out of work.

19:46 “How are you going to feel if suddenly you've got a whole year off? How are you then going to find your purpose? How are you going to keep motivated without having that thing in your life that maybe was once important? That can go either way.”

Weighing up the pros and cons of working for yourself.

28:21 “Work-life balance is very important to me because I'm my own boss, I can decide my own diary. There are obviously cons because I don't get things like sickness benefits, which might be quite helpful with a condition like MS. But then I do get other perks, like I can decide who I work with. Stress is so important with this condition, if there is a client or a project that doesn't quite align with my purpose and it causes me stress, I'm fortunate enough that I can say actually, this isn't for me, and I can turn it away.”

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Listen to Yasmin's previous episode on the Living Well with MS podcast * Want to adopt the Overcoming MS program over 6 months like Yasmin did? Get started on the 6 Months to Overcoming MS course on the Live Well Hub * Check out all of the Overcoming MS books * Sunflower Lanyard scheme for hidden disabilities * Read Yasmin’s bio

New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Living Well with MS, where we are thrilled to bring you our 150th episode! Donations make our podcasts possible – so we’d like to take the opportunity of this milestone to ask if you could support us.

As we mark this significant milestone, we are pleased to welcome Overcoming MS CEO, Alex Holden as our guest. Alex joined Overcoming MS in March 2023 and, during her time at the Charity, has completed a lot! In this episode, she talks to Geoff about meeting the Overcoming MS community, her experience at the ECTRIMS conference (the world’s largest research meeting in multiple sclerosis) and the exciting plans for the Overcoming MS charity!

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:17 Learn about Alex’s background, expertise and how she became CEO of Overcoming MS.

03:30 Alex’s view of the most compelling pillars of the Overcoming MS Program and changing your lifestyle based on evidence.

04:46 The mental and physical benefits of wild swimming.

05:56 Meeting the resilient and hopeful Overcoming MS community.

07:58 Abseil off the ArcelorMittal Orbit and other ways to support Overcoming MS.

10:22 How she keeps busy with her teenagers outside of work.

11:23 In-person Overcoming MS events taking place in 2024 you might like to attend.

14:15 Join the Live Well Hub – the Overcoming MS app – where over 2,000 community members are already sharing tips and advice.

17:43 Alex’s experience at the largest MS research conference in the world, the 2023 ECTRIMS conference (European and American Committees for Treatment and Research in Multiple Sclerosis).

21:06 Future plans for the Overcoming MS charity.

Selected Key Takeaways: Put respect for individuals at the forefront. 02:32 “Everybody needs respect, no matter what struggles they have, no matter what they've gone through. Understanding people's situations are so individual to them, I think that's shaped where I've gone with the rest of my career.”

Your diet can contribute to your well-being and energy. 03:42 “I've always been very interested in nutrition. At one point I did consider training as a nutritional therapist. So that's something that I'm really passionate about the importance of diet and how that contributes to your wellbeing rather than taking things out of your diet, how you look at what's contributing to energy.”

One of the main reasons Alex was drawn to Overcoming MS was because of the community 06:42 "It is such a strong community and a very giving community. People who have had really quite devastating news are managing to give each other so many levels of support, tips, positivity and hope. To be part of that community and amongst those people who have that mindset, I feel very fortunate.

As an organisation, we're really small. We are absolutely dependent on people who are in our Circles, our Ambassadors, and people fundraising for us. There are only twelve staff members, and most of us are part-time; the only way we can support a global community is through the community themselves.”

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More info and links: * Connect with others following Overcoming MS on the Live Well Hub * Fundraise for Overcoming MS * Meditate with Overcoming MS facilitator Phil Startin and others * Watch the ECTRIMS conference highlights webinar with Brett Drummond * Learn more about the Neuroepidemiology Unit at the University of Melbourne * New to Overcoming MS? Visit our introductory page * Visit the Overcoming MS website * Read more about Alex

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Happy New Year! Welcome to season 6 of Living Well with MS.

We are excited to kick off the new season with the musicians of our fantastic, brand-new theme tune, Claire and Nev Dean.

Claire was diagnosed with MS in 1999 and has been following the Overcoming MS Program since 2008, her husband Nev also follows the Program even though he doesn’t have MS.

They generously wrote a new theme tune just for the Living Well with MS podcast. We really enjoyed speaking with them about their experience following the Overcoming MS Program, Claire’s passion for physical activity and hearing from Nev about being married to someone with MS.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:08 Introducing Claire and Nev, musicians who follow the Overcoming MS Program.

04:27 Claire’s MS diagnosis.

06:58 The benefits of following the Overcoming MS Program even when you don’t have MS.

09:46 Online exercise sessions for people with MS.

12:29 Feeling motivated to follow the Overcoming MS Program.

14:21 Writing the new theme music for the Living Well with MS podcast.

17:17 The importance of exercise and core strength in MS.

19:29 Tips for navigating marriage when a partner lives with MS.

21:35 The importance of meditation, even if you only have one minute.

Selected Key Takeaways: The Overcoming MS diet is healthy for everyone. 02:11 Nev: “When we got married, I was rather larger. When we started the diet, I did all the cooking. Obviously [as I was doing the cooking], I started eating the same diet as Claire because I had to cook food for her. Over the years I've lost over six and a half stone.”

Following the Overcoming MS Program has stopped Claire’s progression. 12:25 Claire: “The year before we found Overcoming MS, we got married, and I was using a wheelchair. Since I've been following the [Overcoming MS] diet, I haven't got any worse and my progression has stopped.”

Working out in bed is a viable option. 17:17 Claire: “During lockdown, the MS Centre was closed, and I remember my uncle said to me I could do crunches. I just lay in bed, and I worked on my stomach muscles. I went from 20 [crunches] a day up to 300. I've continued to work on my stomach and my abs. Since then, I've started on the pull-up bar, and I do that every morning.”

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More info and links: * Read more about Claire and her online Zoom workouts in our blog * Nev and Claire on YouTube * Nev and Claire on SoundCloud * Cold water immersion for MS symptom relief * New Pathways Magazine from MS-UK * MOTOmed chair bike * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Living Well with MS, where we are pleased to welcome Audrey Zannese as our guest! Audrey is a mindfulness expert living with MS and specialises in the relaxation method, sophrology. This practice has helped her to live well with MS. She talks to Geoff about her MS journey, what sophrology is and the research behind it. At the end of the episode, Audrey gives a guided sophrology practice.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps 01:19 Audrey’s MS journey.

05:25 Managing stress.

08:19 The origins of sophrology.

11:22 The aims and benefits of sophrology.

14:00 Audrey’s switch from research scientist to sophrologist.

18:43 The research into the positive effects of sophrology.

22:25 Guided sophrology practice.

Selected Key Takeaways Sophrology is a stress-reduction technique.

06:14 “Sophrology is a uniquely structured mind-body practice that combines both Western relaxation methods and Eastern meditative practices. It can be used for personal development, enhancing performance, but also for improving health and well-being. It includes a variety of exercises that are accessible and easy to incorporate into your daily life. There are gentle body movements, breathing exercises [and] aspects of mindfulness and meditation.”

The aims and benefits of sophrology practice.

11:22 “The aim of sophrology is to help you reconnect with yourself. Self-awareness of how you're feeling inside helps you build the capacity to regulate your internal state but also builds the capacity as you would find in mindfulness and meditation of acceptance and letting go when things cannot be changed. Through this work, as it is repetitive and very much a practice, you get to a place where you are feeling balanced in terms of your mind, body, and emotions.”

Sophrology is a big part of how Audrey lives well with MS.

15:04 “I remember one day I came out of my flat, and I was so happy to be alive. I didn't feel [my] MS anymore. I wasn't scared, I knew I had everything in me to live my best life, in a way I had never been [able to] before when I was healthy. When I look back, I look with compassion, but I realise that through this journey, what it was to be happy.”

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More info and links: * Visit the Step into sophrology website * The Sophrology Academy website * Essential Guide to Tap into The Power of the Mind-Body Connection * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps our charity to share how to live well with MS with more people.

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Welcome to Living Well with MS, where we are pleased to welcome Krystina Christiansen as our guest! Krystina is a filmmaker who has recently finished a documentary about an end-of-life letter she found, written by a man with MS.

Overcoming MS wants everyone to live a full and healthy life with MS, but it is inevitable that everyone, with or without MS, will pass away. It is therefore unhelpful that death is often a taboo subject. Krystina talks to Geoff about healthy ways to think about your own mortality, her new film, ‘Dear Brandon’ and planning ahead for your end of life, which is something that everyone needs to consider.

Keep reading for the key episode takeaways.

Topics and Timestamps: 02:29 Krystina found an end-of-life letter from a man with MS on a mountain in Hawaii.

04:12 ‘Dear Brandon’ is a film about death and grief, but also hope and community.

10:41 Healthy ways to think about your own mortality.

12:31 Writing a will and planning your funeral.

14:55 Resources at the end of life.

18:00 Death doulas can help the dying and their families.

20:18 Death cafes are safe spaces to talk about mortality.

24:35 Follow along with Brandon’s story and Krystina’s films.

Selected Key Takeaways: Talking about death and dying doesn’t have to be taboo 07:03 “To know Brandon is to know someone who is going to die, he is on his deathbed. That's the social contract that you agree to when you become friends with him. I’d also like to point out that that's the social contract you have with everybody. It's just more obvious with him, I guess. I've learned that sometimes just talking about [death] does make it a bit easier for everyone.”

Make a plan for your funeral and estate 09:32 “Make sure that you plan for your death if it is something that we have the opportunity to do. Planning makes not only your end of life a bit smoother, but also for the ones you leave behind. It makes their lives a lot better and allows them to just focus on grieving versus dealing with the business of death.”

Death is not an emergency 19:05 “If you have someone in the home who passes away, you don't have to call anyone immediately. You can take your time and be with your loved one. There is no rush. You can even have people come over and say goodbye in the home. You can prepare the body in the home, there are so many different options.”

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More info and links: * Learn more about Krystina’s work and “Dear Brandon” * See the people and places Brandon’s letter reached * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website * Consider leaving a give to Overcoming MS * New to Overcoming MS? Visit our introductory page

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS. In this episode, we are sharing the highlights from one of our ‘Ask Aaron’ webinars, where neurologist, Dr Aaron Boster, answers questions about MS from the community. In this episode, Dr Boster covers a range of topics, including heat intolerance, when to start a DMT and his tips for self-managing MS.

You can watch the original webinar here. Keep reading for the key episode takeaways.

Topics and Timestamps: 02:13 Considerations for changing to a less stressful job and stronger DMTs. 05:09 Talking to clinicians about stress. 06:25 Hyperbaric oxygen therapy. 08:11 Stem cell transplants for PPMS. 10:35 Tysabri during pregnancy and breastfeeding. 12:23 MS and Stroke. 13:52 MRI showing brain cysts. 16:57 Betaferon and slow progression. 19:45 Changing from Tysabri to Ocrevus. 21:41 Vertigo. 23:05 Ampyra for walking, spasticity, and nerve pain. 25:50 Types of inflammation. 28:05 Anesthetic or epidural and MS. 30:15 B-cell depletion therapy and allergies. 31:17 Tips for self-managing MS. 37:42 Heat intolerance. 40:30 When to start on a DMT. 41:22 Ocrevus and low lymphocyte levels. 43:40 Diet and MS. 48:50 Nausea as an MS symptom. 51:30 CBD for MS. 52:45 Bursitis and MS. 53:36 Choosing a DMT and considering side effects. 55:16 Invisible illness in an ableist world.

Selected Key Takeaways: Exercise as part of your daily lifestyle 34:42 “Exercising as part of a lifestyle means that if you do it, you're not rewarded. There's no reward for doing something as part of your lifestyle and if you don't do it, there's no punishment - you're not sent to the naughty corner. So, for example, I have a lifestyle of brushing my teeth. I don't tweet about it. I don't make YouTube videos about it. I don't even talk about it when I get to work. It's just something I do every morning and if I happen to forget to brush my teeth before I head off to the office, I'll run upstairs and do it. This is part of my lifestyle. So, I need people impacted by MS to exercise as part of their lifestyle.”

Plan your day to minimise symptoms like heat intolerance 39:43 “We can conserve energy during those times when it's really hot out. Whereas I would normally encourage a patient to park at the back of the parking lot to get their steps in. If it's the middle of the day, [walking that far is] going to sap all your energy so that when you get to the grocery store you can't shop, that doesn't really work very well, does it? And so that's an example where we would have someone drop us off at the threshold of the grocery store so that you can be successful in your shopping.”

Be brave in using mobility aids and seeking accommodations. 57:27 “I tell people who are embarrassed by their cane, ‘Don't you dare be embarrassed by your cane, a cane is a sign of intelligence.’ A person with a cane would like to not fall. So, when a little boy is walking with [his] mum, and says, ‘Mummy, why is she using a cane?’ That's an opportunity for the mother to say, ‘Well, she doesn't want to fall, she has a problem with her leg and the cane helps her.’ It normalises it. So, one of the things that we need to do is to be brave. I'll remind you of the definition of bravery, ‘doing something despite being scared’. The second thing is, I want you to be very selfish. You need to be selfish; you live your life once. You're not living your life so some stranger, you don't know, thinks nice polite things about you.”

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More info and links: * Watch the original webinar here. * Dr Boster was on three previous Living Well with MS episodes: + S1E11: Making the Right Medication Choices + S2E17: Lifestyle Choices and Their Impact on MS + S3E43: Let’s Talk About Sex (and MS) * Check out Dr Boster’s popular YouTube channel covering all aspects of MS. * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Living Well with MS. In this episode, we are sharing the highlights from our webinar, ‘A guide to the Overcoming MS Diet’, with Gillian Robertson and Ashley Madden. Gillian and Ashley are both professional chefs who follow the Overcoming MS Program. In this webinar, they discuss how to adopt the diet, the benefits of a plant-based diet, dairy substitutes and much more.

Watch the original webinar here. Keep reading for the key episode takeaways.

Topics and Timestamps 02:52 Practical ways to adopt the Overcoming MS Diet.

08:56 What is a plant-based diet?

14:58 Meals and snacks that offer a complete protein.

22:32 Substituting cheese and ice cream.

27:13 Cooking without oil.

33:13 Meal planning equipment.

39:33 Plant-based meal planning on a budget.

Selected Key Takeaways A whole food, plant-based diet is health-promoting. 11:00 Ashley Madden: “A plant-based diet is high in essential nutrients like vitamins, minerals, and fibre. It's overall anti-inflammatory because we're getting a lot of antioxidants from all those colourful plant foods. It's low in saturated fat, which is important for us, of course, and also has extensive health benefits that go beyond. A plant-based diet has been shown to reduce the risk of some cancers, it can help with weight loss or weight stabilisation, and it can also decrease the risks and sometimes reverse some of the modern-day chronic diseases that we're seeing in a lot of the developed countries.”

It’s easy to get enough complete protein on a plant-based diet. 14:27 Ashley Madden: “What modern science has taught us is that the amino acid gaps in one plant food are filled in by another plant food. The bottom line is that you don't need to strategically pair plant foods in specific meals to get the protein that you need. We now know that eating a variety of whole plant foods will get you all of the essential amino acids that are required. I have here listed just some simple meal and snack ideas that actually do offer you complete protein that you're probably already doing and don't even know it. So brown rice and beans, oatmeal, and nuts and seeds or soy milk, sprouted bread is a great one because it has a combination of legumes and grains and nuts and hummus on whole wheat toast.”

Plant based cooking can be done on a budget. 39:45 Gillian Robertson: “Organic now is a big trend. Obviously, it can be very expensive. Don't feel that you always have to buy organic. As long as you're washing your fruit and vegetables well, you're going to be okay. And it's okay to look at frozen fruit and vegetables as well as fresh ones, these are often cheaper, they're just as nutritious and they can help save time because they're often pre-prepared as well. Frozen fish can also be much more economical. If you start thinking about the inexpensive items in plant-based cooking, [such as] grains, pulses, seasonal vegetables, if you make those the base of your meals, then your meals really are not going to cost that much money.

More info and Links: * Watch the original webinar * Try out some recipes on our website * Read our blog for tips on shopping at the supermarket * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, we’d appreciate it if you could leave us a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Living Well with MS, where we are pleased to welcome Jack McNulty as our guest! Jack is a professional cook and a longtime follower of the Overcoming MS Program. In this episode, he answers questions from the community about how to cook with tofu.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:42 What is tofu?

02:37 Is it possible to make tofu from scratch?

03:59 Benefits of adding tofu to your diet.

05:54 Debunking the myth that ‘tofu is bland’.

07:03 Saturated fat levels in tofu.

08:52 Different types and textures of tofu.

16:24 The difference between tofu and tempeh.

21:49 Ways to change the texture of tofu.

28:57 Do you have to press tofu before cooking?

31:22 Jack’s favourite tofu marinades and recipes.

Selected Key Takeaways: Tofu is an affordable, easy-to-digest, source of protein. 04:25 “Tofu is fairly easy to digest. A lot of people who may have trouble [digesting] legumes can actually digest tofu a little bit easier than they can from the whole bean, which is nice. It's definitely a good source of protein. It’s really affordable. The other thing that I think that's really interesting with tofu is it's basically just a blank canvas."

Tofu vs. tempeh 17:01 “Tofu is made from soy milk from the whole soybean turned into milk and then coagulated. Tempeh which originates from Indonesia (and you see it a lot in Indonesian cooking) is [made from] whole beans. It's generally soybeans, but it can be made with other kinds of beans like chickpeas and is pressed together and inoculated with a mold and then packaged so it has this sort of white net around the beans, which gives it a very specific flavour.”

Pressing tofu can make it dry. 29:19 “You want to be careful [pressing tofu] because you're forcing out a lot of the moisture from the interior of the tofu that's going to make it fundamentally dry at the end. I would be very cautious with recipes that say, ‘start off by pressing the tofu’. I think it's much better to take a different approach, maybe freeze it, maybe pour some boiling salted water over it, or marinate it rather than pressing it.”

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More info and links: * Try Jack’s Marinated & Dry-sautéed Tofu * Try Jack’s Tofu Vegan Mayonnaise * Listen to ‘S4E48: Ask Jack’ for his tofu scramble recipe

New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS, where we are pleased to welcome Mike Newton as our guest! Mike is an industrial chemist and follows the Overcoming MS Program. He lives in Australia and has been following the recommendations of Dr Roy Swank and Professor George Jelinek for 25 years. He talks to Geoff about the difference between saturated and unsaturated fats, heating oils and his Overcoming MS journey.

Watch this episode on our YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 01:13 Defining oils, fats, triglycerides and lipids from a cooking and chemistry perspective.

07:35 Fats to avoid and include in your diet.

12:54 What’s the difference between plant, animal and fish triglycerides or fats?

16:44 Why do we want to increase our Omega-3s and decrease Omega-9s?

19:24 The difference between monoglycerides and diglycerides is in the melting point, lower melting points are better for brain health.

22:50 Overcoming MS and Dr Roy Swank

Selected Key Takeaways: Defining Oils and Fats 01:40 “Triglycerides are the encompassing description of all oils and fats, whether they are from plants or animals, and whether they are liquid or solid. The terms oil and fat are more for the layman and the cooking man. Oil is a liquid at room temperature, and fat is a solid at room temperature.”

Hydrogenated fat in commercially produced foods 16:09 “The reason that they use hydrogenated fats is to give the [food] structure so that they can make a pie that you can eat with ease without it all collapsing around you while you're eating it. So, it's purely done for your mouthfeel and structure, so you can eat it (more easily).”

Roy Swank’s theory on fat and MS 24:27 “Swank took the theory that the brain is made of a very high percentage of fat and cholesterol. If [your brain] is rock hard like this candle, then when it's rattling around in your head, the lesions in your brain will be scraping against your skull or another very hard piece of brain, causing more symptoms than that you would get if your brain was fluid and malleable.”

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More info and links: * Recommended Oils on the Overcoming MS Program * Guide to understanding Fats in the MS Diet * Role of Fats in the Overcoming MS Diet * Types of fats in your diet * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS, where we are pleased to welcome Dr David Bilstrom as our guest! Dr Bilstrom, MD is the Director of the International Autoimmune Institute & Bingham Memorial Center for Functional Medicine and an expert in treating autoimmune diseases. He talks to Geoff about what autoimmune diseases are, about Vitamin D and gives his tips for sticking with lifestyle change.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Topics and Timestamps: 00:59 Dr Bilstrom’s introduction and work in autoimmunity.

01:48 Reversing MS symptoms.

03:32 Infections and autoimmune diseases.

05:52 Vitamin D and MS.

10:45 Supplementing with butyrate.

12:23 Leaky gut and autoimmunity.

14:34 Oestrogen dominance and autoimmunity.

19:03 Adverse childhood events and autoimmunity.

23:40 Tips for sticking with lifestyle change.

Selected Key Takeaways: The risk of autoimmunity increases if a parent has an autoimmune disease. 02:04 “It's so easy if you get one autoimmune disease to get a second or third or fourth, but also, if a parent has an autoimmune disease, the child is at a higher risk of every autoimmune disease. For example, if a parent gets rheumatoid arthritis, that child is at a 5.4 times greater risk of getting type one diabetes. We want to educate people about what we know about why people get autoimmune diseases.”

Vitamin D and prevention of autoimmune diseases 06:38 “If a woman's vitamin D is above 50 during pregnancy, she's going to decrease the risk of her child ever getting MS by 50% … Vitamin D is uber important when it comes to immune system stuff, such as preventing MS in pregnancy. Cancer is the flip side of the same coin, that's [another] autoimmune disease. If a woman's vitamin D is above 60, she has automatically decreased her risk of ever getting breast cancer by 82%. Kids that take vitamin D 2000 IU in the first year of life will decrease the risk of ever getting type one diabetes by 90%.”

Epigenetics and autoimmunity 11:11 “We used to think our genes, our DNA in our cells, [that] whatever we got from our parents [and] grandparents we’re stuck with it. If a parent has MS, they’d think “well, I wish I could change some of the genes my child has.” Well, it turns out, it's not what genes you have, it’s which ones get turned on and turned off. So, it's epigenetics, the things that influence gene expression. There are a lot of bad genes that drive chronic disease, we’ve got to turn those guys off, as well as good genes that drive health, we’ve got to turn those guys on.”

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Learn more about Dr Bilstrom’s work * Take Dr Bilstrom’s free online course * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps our charity to share how to live well with MS with more people.

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In this episode, we are sharing highlights from our webinar, ‘Breathwork for people living with MS’ with Dr Véronique Gauthier-Simmons. Véronique is a qualified yoga therapist, follows the Overcoming MS Program and has supported Overcoming MS as a facilitator. She discusses what breathwork is, how it can help people living with MS and ends the talk with a breathwork practice for you to try.

Watch the original webinar here. Keep reading for the key episode takeaways and Véronique’s bio.

Topics and Timestamps 00:58 Véronique’s background

06:25 Véronique’s breathwork training

08:58 Breathing basics

11:24 Dysfunctional breathing patterns

13:31 The power of the breath

16:00 Using the breath to influence other body systems.

18:37 Benefits of breathwork for MS

24:01 The diaphragm

27:00 Breathwork practice

Selected Key Takeaways You can take control of your breath. 15:22 “We don't have to think, ‘I need to breathe in, I need to breathe out.’ It happens automatically. But we can also tell the brain, ‘I'm taking over the control, I'm in charge now’. That is the only system in the body that can do that, and that gives us the power to change how we feel because they are connected. We can use the breath as a language to communicate with the different systems in the body.”

You can reduce inflammation with breathwork by stimulating the Vagus Nerve 20:26 “There is a really interesting link between breathing and inflammation. I'm sure you've all heard about the Vagus Nerve, and we can stimulate the Vagus Nerve with breathing, [which] reduces stress and inflammation, [as] we know that stress leads to inflammation. So, there is an indirect way to reduce inflammation via the Vagus Nerve with breathwork.”

A tense diaphragm can negatively impact our breathing.26:12 “The problem with the diaphragm is that we are not very aware of it, and it can get tense because it’s linked with the Vagus Nerve and the psoas muscle, which connects the upper body and the lower body. So, when we spend many hours sitting [and] when we are stressed, everything tightens, everything gets tense. This affects the movement of the diaphragm and our breathing.”

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Find out more about Véronique here: Taming the Walrus * Breath by James Nestor * Dr. Ela Manga * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episode here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS, where we are pleased to welcome Melanie Lown as our guest. Melanie is a mindfulness teacher, has an M.A. in Psychology, and follows the Overcoming MS Program. She talks to Geoff about her MS diagnosis, the power of mindfulness and the importance of self-compassion.

Watch this episode on YouTube here.

Topics and Timestamps: 01:30 Melanie’s introduction and MS diagnosis.

03:58 Balancing self-advocacy with compassion for healthcare professionals.

07:07 Using a diagnosis to discover your purpose.

09:48 Discovering Overcoming MS.

12:02 Our lived experience is as valid as datasets.

13:29 DMTs and COVID.

16:31 The growing popularity of mindfulness in Western medicine.

21:45 Meditation physically changes the brain.

23:33 Depression and spiritualism are opposite sides of the same neural pathway.

27:54 The awakened brain vs. the achieving brain.

29:39 Activating the parasympathetic nervous system with self-compassion.

33:39 Emotions are not ‘good’ or ‘bad’.

35:44 Mindfully choosing your healthcare team and treatment.

42:22 Tips to incorporate mindfulness into your lifestyle.

47:54 Non-judgmental awareness.

More info and links: * Visit Melanie’s Website or follow her on Instagram: @welcometothemat. * Melanie’s Recommended Meditation teachers and guides: + Vinny Ferraro + Amanda Gilbert + Elisha Goldstein + Tara Branch + Davidji + Insight Timer * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Melanie’s Recommended Books: * The Awakened Brain by Dr. Lisa Miller * Self-Compassion by Kristin Neff * How to Change Your Mind by Michael Pollan * Radical Acceptance by Tara Brach * Cured by Jeffrey Rediger * Learned Hopefulness by Dr. Dan Tomasulo

Melanie's Recommended Scientific Articles: * Fredrickson, B. L., & Losada, M. F. (2005). Positive affect and the complex dynamics of human flourishing. American psychologist, 60(7), 678. * Miller, L., Bansal, R., Wickramaratne, P., Hao, X., Tenke, C. E., Weissman, M. M., & Peterson, B. S. (2014). Neuroanatomical correlates of religiosity and spirituality: a study in adults at high and low familial risk for depression. JAMA psychiatry, 71(2), 128-135. * Miller, L., Wickramaratne, P., Gameroff, M. J., Sage, M., Tenke, C. E., & Weissman, M. M. (2012). Religiosity and major depression in adults at high risk: a ten-year prospective study. American Journal of Psychiatry, 169(1), 89-94. * Portnoff, L., McClintock, C., Lau, E., Choi, S., & Miller, L. (2017). Spirituality cuts in half the relative risk for depression: Findings from the United States, China, and India. Spirituality in Clinical Practice, 4(1), 22.

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

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Welcome to Living Well with MS. In this episode, we are delighted to welcome neurologist, Professor Stephen L. Hauser as our guest. Professor Hauser has been researching MS since the 1970s, and his team’s research led to the development of the disease-modifying therapy ‘Ocrevus’. He talks to Geoff about the future of DMTs for MS, what autoimmunity is, and how he and his team developed one of the most world-renowned MS DMTs.

Questions and Timestamps 01:45 Can you introduce yourself and tell us about your work?

04:23 What is autoimmunity and how does it relate to MS and inflammation?

06:37 Are some people more prone to develop autoimmune conditions?

10:11 How can a person get the most out of the time they have with their neurologist?

14:01 The benefits of participating in a clinical trial.

16:01 How is MS similar or different from other brain conditions?

20:11 Is there a role of infection in brain diseases like MS?

23:10 The role of hygiene in autoimmunity.

25:40 Book excerpt and how Ocrevus was developed.

32:53 What’s next in B-cell research and MS?

37:58 What tips do you have for lifestyle modifications for people who have MS?

More info and links: * Read more about Professor Hauser from the American Brain Foundation * Read The Face Laughs While the Brain Cries: The Education of a Doctor * Read the key episode takeaways and Professor Hauser’s bio * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episode here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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In this episode, we are sharing highlights from our webinar, ‘Movement and Breathing Better whilst Living Well with Overcoming MS’ with Gillian Robinson. Gillian is a physiotherapist at the MS Therapy Centre in Lothian, Scotland. She discusses how MS affects breathing, how to breathe better and the importance of physical activity for people with MS.

This webinar was recorded as part of our Finding Hope with Overcoming MS webinar series. Watch the original webinar here. Keep reading for the key episode takeaways and Gillian’s bio.

Topics and Timestamps 00:57 Why and how we should breathe.

04:22 How MS can affect respiration.

09:13 Consequences of ineffective breathing.

11:00 Monitoring and slowing your breathing helps with fatigue and stress management.

14:05 Posture and nasal breathing are important.

20:19 Deep breathing exercises can be part of your meditation practice to strengthen respiratory muscles.

27:23 Benefits of exercise for people with MS.

33:00 Include both aerobic and anaerobic activities in your routine.

36:38 Vestibular retraining, physiotherapy, Tai Chi and Thera Bands can be helpful for people with MS.

38:16 Breathing exercises can strengthen your pelvic floor and abdominals.

40:06 Virtual reality and visualisation can both be used to improve wellbeing.

41:53 Noticing your breathing is the first step to improving it.

Selected Key Takeaways Breathing can be affected by MS, so it’s important to keep active to strengthen muscles in the respiratory system. 04:24 “It's only in recent years that it's been demonstrated that the respiratory system can be affected quite early on in MS. I think most of us are aware that it can be affected in the more advanced stages of MS. [These early effects are] logical really, as we know that muscle strength can be affected by MS in the disease process itself, as wherever your lesions are, they can cause muscle weakness in the rest of our body. So, it makes sense that it will cause muscle weakness in our respiratory system. Not only is this primary weakness a result of the MS itself, but if you're not using [your] muscles and reducing levels of activity, you can develop secondary weakness or deconditioning.”

Nasal breathing is really important for optimal health.17:17 “Nasal Breathing is really important. We know that chronic mouth breathing can cause problems with your respiratory system and your lung function and certainly impair the effectiveness of your breathing. You can get dental problems by breathing through your mouth, and you're losing 40% more moisture than you do by breathing through your nose.”

Visualisation whilst breathing can help strengthen muscles. 41:00 “An interesting bit of research out there shows that through visualisation activities alone, you can improve muscle strength. So, if you struggle with activity and getting your body moving, visualise activities that you might enjoy. The more detail that you can add to your mental imagery, the better and the more likelihood of success. Just try to bring your awareness of your breath. We've talked about how important breathing technique and exercising your respiratory muscles is.If your breathing is optimised, it most definitely has a knock-on effect on your wider wellbeing.”

Noticing your breathing is the first step to improving it.42:39 "Notice your breathing responses during activity, so notice what your breathing patterns do. Do you start to get more shallow as you get more effortful? Do you start to breathe through your mouth? Be more mindful of how your breathing responds to activity."

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More info and links: * Watch the original webinar and access downloadable content * Find out more about the breathing techniques Gillian has mentioned * Find out more about the Wim Hof method * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episode here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation.

Gillian’s bio: Gillian’s qualifications and career background After graduating from Dundee University with a BSc Hons in Anatomical Sciences, Gillian went on to study physiotherapy. She graduated in 2002 and worked in Croydon University Hospital for 10 years where she cemented her passion for neurology. During her time in Croydon, she completed an MSc in Acupuncture from Coventry University, a useful tool for the treatment box.

The MS Therapy Centre In 2012, Gillian moved to Edinburgh where she began working at the MS Therapy Centre Lothian as Lead Physiotherapist. Here she has developed a reputable service for those who attend the centre and has established strong links with the medical and healthcare professionals who are involved in their clients’ care. The ethos promoted by the MS Therapy Centre is one of supported self-management, encouraging and enabling the clients to understand and take control of their symptoms. Within her role Gillian is dedicated to helping people explore their capabilities and facilitate them to achieve a fitter, healthier, happier self.

The Health Design Collective – designing products to support people with MS. Gillian is also a director of the social enterprise, Health Design Collective. Set up in 2019, they have a vision to create innovative products for people with long-term health conditions through co-design with the end users. Their first product currently under development is footwear for people with foot drop.

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Welcome to Living Well with MS. In this episode, we are pleased to welcome Mike Kennedy as our guest. Mike was diagnosed with MS over 10 years ago and is an advocate for living a healthy life and following the Overcoming MS Program. He will be discussing with Geoff the lessons he has learnt along the way, including when he deviated from the Overcoming MS diet.

Keep reading for the key episode takeaways.

Questions and Timestamps: 00:33 Could you introduce yourself?

02:32 Can you tell us about your MS and Overcoming MS journey?

11:21 Unhealthy vegan food

18:25 Experience with first neurologist

21:42 Cryotherapy or cold exposure

25:26 Hyperbaric oxygen therapy

29:50 Homeopathy

33:15 The placebo effect

38:31 Family prevention

43:44 Tea and plant-based milks

45:38 Matt Embry’s influence

49:28 What advice would you give to someone newly diagnosed?

Selected Key Takeaways: Change your life for life 15:01 “If I was told right now, ‘Mike, you no longer have MS, you will not [get] it again', I would not go back to eating cheese. I would not go back to eating dairy. I would not go back to eating big fat burgers. Honestly, I think that it's all habitual because these are the habits that I built around my life.”

Cryotherapy and hyperbaric oxygen therapy helped Mike’s inflammation. 23:13 “At the 10-year mark, my symptoms at that time were a little more pronounced. I tried hyperbaric oxygen [therapy] for an hour and then cryotherapy. I can only say it was the most incredible relief or feeling I've [ever] experienced. [When] I got out of the cryotherapy tank, I felt like I could run a marathon, and I have never run a marathon. All the inflammation in my legs [was] gone; it was just like fresh blood came into my legs and it was the most incredible feeling. I recommend anyone with problems with inflammation or MS to try cryotherapy.”

There can be a silver lining to an MS diagnosis 53:40 “Believe me, it's not all bad news. There's so much you can do to make this situation much better for yourself. In fact, in so many ways, I'm a lot healthier now than I would have been had I not had MS. I know that sounds pretty strange, but it's true. I got healthier; my weight’s a lot healthier. I'm not saying I wouldn't wish I didn't have it, but it certainly gives me a lot of positives as well as negatives, without doubt.”

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More info and links: * Connect with Mike on Twitter @mrmikekennedy or Instagram @miketonykennedy * Watch the BBC programme 'Ultraprocessed Foods: A recipe for ill health?' * Visit Conor Devine’s MS site * Watch 'The Placebo Experiment: Can My Brain Cure My Body?' by Dr Michael Mosley * Listen to Trevor Wicken's podcast episode * MS Workouts with Overcoming MS * Listen to Dr Gretchen Hawley's podcast episodes: + Season 2 episode 18 + Season 3 episode 39 * Listen to Dom Thorpe's podcast episode * Listen to Matt Embry's podcast episode * Find out more about Mike’s mum’s charity, ‘Ladies Fighting Breast Cancer’ * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS. In this episode, we are pleased to welcome Overcoming MS Ambassador Kristi Peak-Oliveira, who has been following the Overcoming MS Program since 2016 and is an Ambassador for the Boston Circle. She is also a pathologist and the assistant director for assistive technology services at ‘Easterseals Massachusetts’, whose clients include people with multiple sclerosis.

Watch this episode on YouTube here. Keep reading for the key episode takeaways and Kristi's bio.

Questions and Timestamps 01:00 Could you tell us a bit about yourself and your MS diagnosis?

05:08 How did you come across Overcoming MS?

07:14 Tell us about how you became the Ambassador for the Boston Circle.

11:44 Have you talked to your neurologist about Overcoming MS?

18:28 You work as a speech pathologist and as the assistant director for assistive technology services at ‘Easterseals Massachusetts’. Could you tell us what that is?

21:08 What are some examples of assistive technology that can help symptoms like cog fog and memory issues?

24:54 Do you have examples of assistive technology for fine motor control as well?

26:13 Is there anything we can do ourselves to make our devices more accessible?

26:59 Can you tell us about your upcoming trip to Peru, to take assistive technology to orphan children with disabilities?

31:39 You have always loved dancing, are you still able to dance with your MS symptoms?

35:41 What advice would you offer to someone who has been newly diagnosed with MS?

Selected Key Takeaways Assistive technology helps people complete daily tasks more independently.

18:45 “Assistive technology is a broad category, but it's basically almost anything that can compensate for your disabilities to help you access different life skills, whether it's working on a computer, cleaning your house, or remembering to take your medication. Augmentative communication is what I do as a speech pathologist, [and] is a subset of assistive technology. It focuses on someone who is not able to use speech as their primary means of communication. So, we're helping them with technology.”

Kristi credits the Overcoming MS Program for giving her the confidence to take a humanitarian trip to Peru.

30:32 “My yoga teacher got this idea; it's called ‘Project Give a Voice’. I'm going with her in September for two weeks to bring augmentative communication to students in Peru who are not able to speak. I'm really excited about it [and] she's excited about it [too]. It's because of Overcoming MS. If it wasn't for Overcoming MS, I might not ever have tried yoga or ended up with this teacher. [Following] Overcoming MS gives me the confidence to know that I'm going to physically be able to participate in this trip.”

Finding a reason to live well helps Kristi stay motivated.

32:58 “You have to find something that's really motivating. For me, it was my dance class. I didn't want to give up my dance class, I love the women there. That was the thing that really motivated me to dig into Overcoming MS. Over time, foot drop was an issue [and] I've definitely fallen in the class. But over time, I've definitely noticed especially my right foot, (my right side is more affected) has gained in strength.”

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More info and links: * Learn more about Project Give a Voice * Easterseals Massachusetts Home Page * Easterseals Massachusetts assistive technology page * Read a guide for doctors and other healthcare workers when speaking with patients about assistive technology and MS. It was written by a speech-language pathologist who works at a nursing home dedicated to people with progressive neurological diseases whom Kristi knows professionally. * Listen to the episodes Vickie the Ambassador from Connecticut was on: + Coffee Break + Building Community through Overcoming MS Circles * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Kristi’s bio: Kristi’s MS and Overcoming MS journey Kristi was diagnosed with MS in July of 2016 and started following the Overcoming MS program later that year. She has been a part of the Boston, US Circle since it began and now serves as the Ambassador.

Kristi’s personal life Kristi is married with two adult children, and thanks to Overcoming MS continues to enjoy activities such as yoga, dance class, gardening, and singing in her church choir.

Kristi’s career Kristi has been a speech-language pathologist for over 30 years and currently serves as assistant director of assistive technology services at Easterseals Massachusetts, a not-for-profit organisation dedicated to serving the needs of individuals with disabilities. Clients include those with multiple sclerosis, and they are provided with assistive technology (AT) solutions to compensate for sensory, physical and cognitive challenges. Kristi has used AT solutions herself to deal with MS symptoms and exacerbations and is happy to share the information so others with MS can benefit.

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Welcome to Living Well with MS, where we are pleased to welcome Professor Richard Burt as our guest! Professor Burt is a leading expert in hematopoietic stem cell transplantation (HSCT) for autoimmune diseases including MS and has been awarded a number of prestigious accolades.

Watch this episode on YouTube here. Keep reading for the key episode takeaways and Professor Burt’s bio.

Questions and Timestamps 02:35 Could you introduce yourself and tell us about your work with patients with autoimmune conditions and MS?

12:03 What do you think about the idea of flipping the model and offering the most aggressive treatment options to patients first?

16:27 What are the risks of HSCT?

21:18 Can you tell us about the costs associated with stem cell transplantation?

24:13 What type of patients respond best to HSCT?

31:16 Do you see a future where doctors are trained in multiple fields and understand the whole picture of autoimmunity?

38:10 If someone’s interested in exploring HSCT, what should they look for in a clinic or physician?

41:47 HSCT has a high upfront cost but how does that compare to being on an MS drug for years or perhaps a lifetime?

53:50 The Dalai Lama wrote the introduction to your book 'Everyday Miracles'. How did that come about?

Selected Key Takeaways Randomised controlled trial results for HSCT have been very positive
05:12 “In a randomised trial, [HSCT] was just hands down much better than any [other] drug. All the drugs you use for MS are based on approval for slowing disease activity. That is slowing the number of relapses or slowing the rate of progression of disability but not stopping it or not reversing it. Often you stay on these drugs indefinitely. A transplant, on the other hand, is a one-time treatment and afterwards, you get better, your neurologic disability reverses, nothing else had done that.”

It’s important to consider the disease trajectory, risks, and benefits of stem cell transplants.
14:02 “MS causes accelerated loss of brain volume, that is brain atrophy. Unfortunately, as we age, we get brain atrophy and a normal, very low, but normal decline. But once you get MS, that decline takes a much sharper drop, and you're losing neural function a lot faster than normal ageing. For some reason, that's not viewed as a sub-acute or semi-emergency situation that you want to reverse. Traditional drugs have mostly just slowed that rate of decline, but it's still faster than what happens with normal ageing. I would think a more aggressive approach up front would be wise, but you always have to remember [the] risk–benefit. If we could do a stem cell transplant with zero risk of mortality, I would say absolutely for everybody. But you can't do that right now.”

A medical speciality and institute for autoimmunology could help push the field forward
34:20 “There are 80 different autoimmune diseases that I can think of offhand. They're all “homeless” in different departments like Crohn's disease [which is] in gastroenterology, Scleroderma [which] is in rheumatology, and multiple sclerosis [which] is in neurology. They're all separated [into] different areas. If there was a better organisation, beginning at a federal level with a national institute of autoimmune diseases that supports centres of excellence around the country, that would really help this go forward.”

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More info and links: * Visit Professor Burt’s website * Read Professor Burt’s new book on HSCT for autoimmune diseases ‘Everyday Miracles’ * Check out Professor Burt’s medical textbook ‘Hematopoietic Stem Cell Transplantation and Cellular Therapies for Autoimmune Diseases’ * Find out more about the StarMS trial in the UK

New to Overcoming MS? Visit our introductory page
Connect with others following Overcoming MS on the Live Well Hub
Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Professor Richard Burt’s bio: Professor Richard Burt is a Fulbright Scholar, Professor of Medicine at Scripps Health Care, tenured retired Professor of Medicine at Northwestern University, and CEO of Genani Biotechnology.

He endeavored for 35 years, first with animal models and then with some of the world’s first clinical trials, to bring the field of stem cell and cellular therapy to the patients’ bedsides.

Publishing Professor Burt has published more than 145 first-author articles and is the editor of four medical textbooks. He was the first Autoimmune Committee Chairperson for the International Bone Marrow Transplant Registry (IBMTR) and was the principal investigator of a National Institutes of Health (NIH) $10 million multicenter contract to develop stem cell clinical trials for autoimmune diseases.

Hematopoietic stem cell transplants Professor Burt performed America’s first hematopoietic stem cell transplant (HSCT) for multiple sclerosis (MS), systemic lupus erythematosus (SLE), Crohn’s disease (CD), stiff person syndrome (SPS), and chronic inflammatory demyelinating polyneuropathy (CIDP) and published the world’s first randomised clinical stem cell transplantation trials for systemic sclerosis and multiple sclerosis.

Awards and achievements He has been awarded the Leukemia Scholar of America, the Lupus Foundation of America Fidelitas Award, the van Bekkum Award by the European Society for Blood and Marrow Transplantation, the Distinguished Clinical Achievement Award by the Clinical Research Forum, and the European Group for Blood and Marrow Transplantation Clinical Achievement Award.

Professor Burt was presented in Vatican City, Rome, with the “Keys to the Vatican,” was a speaker at the Festival of Thinkers in Leadership in Healthcare in the United Arab Emirates and chaired the biotechnology session at the Baku Azerbaijan International Humanitarian Forum. Professor Burt was recognised by Science Illustrated for accomplishing one of the top 10 medical breakthroughs for the next 10 years and by Scientific American as one of the top 50 individuals for improving humanity and outstanding leadership.

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In this episode of Living Well with MS, Overcoming MS Medical Advisor Dr Jonathan White, who is an Obstetrician and Gynaecologist, welcomes Neurologist, Dr Kate Petheram, and Gynaecologist and Menopause specialist, Dr Siobhan Kirk for a round-table discussion on multiple sclerosis and menopause.

Watch this episode on YouTube here. Keep reading for the key episode takeaways.

Questions and Timestamps: 00:34 The importance of talking about menopause and MS.

01:33 What is menopause?

04:48 What do we know about the effect of menopause on MS?

07:12 What are the symptoms somebody may experience with menopause, that a gynaecologist can help with?

08:47 What is hormone replacement therapy (HRT)?

10:17 Is HRT safe to take with disease-modifying therapies for MS?

12:31 Can blood tests diagnose menopause?

15:02 Is HRT safe for someone who has a family history of breast cancer?

16:33 Does HRT cause people to put on weight?

19:01 Should someone start HRT because they have MS?

21:58 Will supplements or dietary changes help menopause symptoms?

23:14 What about this concept of bioidentical HRT?

24:19 Do you think somebody with MS would benefit from testosterone patches?

26:40 What's the latest research we know about the impact on hormones and menopause treatment, and the outcomes?

28:15 Are hot flushes and heat sensitivity a concern for people with MS?

29:49 What is the Mirena coil and how that may be a part of HRT?

32:23 What are the side effects of progestogen?

32:55 Does early menopause (before 40) affect the rate of progression of someone's MS, either for the better or for worse?

39:26 Topical oestrogen and bladder symptoms

Selected Key Takeaways: There is a lot of overlap between MS symptoms and menopause symptoms.6:42 Dr Kate Petheram: “Because of the overlap in symptoms. There are perhaps elements which are so relevant to menopause, which we can perhaps talk about as well in terms of symptoms such as hot flushes and heat intolerance, which again may exacerbate symptoms of MS. So, there may not be a biological difference, but the symptoms of menopause and perimenopause may influence and make worse MS symptoms, which is why I believe it's so important to recognise and point women in the right direction to get the right help."

There is no evidence that Hormone Replacement Therapy (HRT) causes cancer.
15:19 Dr Siobhan Kirk: “There is no evidence that HRT causes breast cancer. But if you're taking extra hormones, and you've got abnormal cells, then the extra hormones can promote the growth of the abnormal cells. There's no increased risk of breast cancer with use of HRT under the age of 50, for earlier menopause, because you're just replacing what the uterus should be producing.”

There is a lot of research taking place around the world on different aspects of living with MS including menopause.
34:12 Dr Jonathan White: “It is reassuring [for] someone living with MS to know that there is just a colossal amount of research going on around the world on all sorts of aspects of living with MS. I feel like reproductive health and women's health is getting to that place slowly. There's a really big push, I can see that in the research community and I'm glad to hear that menopause and post-reproductive health is getting it too.”

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Watch the YouTube video * Find out more about Women’s Health Concern * Visit The British Menopause Society * Read more about menopause and MS here * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Bios: Dr Siobhan Kirk’s Bio:
Dr Siobhan Kirk is an Associate Specialist in Gynaecology and Clinical Lead for Sexual & Reproductive Health in Belfast HSC Trust.

Siobhan’s career
She is a Fellow of both the Royal College of Obstetricians & Gynaecologists and the Faculty of Sexual & Reproductive Healthcare. She is a British Menopause Society accredited menopause specialist and trainer, based in the menopause clinic in the Mater Hospital, Belfast.

She is passionate about all aspects of women’s health, is on NI RCOG and FSRH committees, and is involved in undergraduate and postgraduate teaching.

Dr Kate Petheram’s Bio: Dr Kate Petheram is a Consultant Neurologist in Sunderland where she is currently MS lead.

Kate’s career background
Kate studied medicine in Bristol and stayed in the southwest to do her medical training in Bristol and Exeter moving to London to do Neurology jobs at St Georges and The Royal Free.

She made the move to the North East to undertake Neurology specialist training. She is a local PI for a number of observational studies. She is a member of the ABN quality committee and one of the medical advisors for the MS Society. She has recently been appointed as training programme director for the North East.

Dr Jonathan White’s Bio: Jonathan’s Career:
Dr Jonathan White went to the University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss.

In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. He contributed to the ‘Overcoming Multiple Sclerosis Handbook: Roadmap to Good Health’ by writing the chapter about medication.

Overcoming MS and personal life:
Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since. Dr White assists Overcoming MS as a medical advisor and event facilitator.

He lives on the North Coast of Northern Ireland, is married to Jenny and father to Angus and Struan. His interests include the great outdoors, cycling and running (reluctantly), reading, rugby, film, and spending time with his family.

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Welcome to Living Well with MS, where we are pleased to welcome Shannon Harvey as our guest! Shannon is an Australian journalist and filmmaker specialising in wellness, mental health, and optimising wellbeing for those with chronic conditions.

Watch this episode on YouTube here. Keep reading for the key episode takeaways and Shannon’s bio.

Questions and Timestamps: 03:17 Can you tell us about your film ‘The Connection: Mind Your Body’?

05:22 In your film ‘The Connection’ you interview some of the top scholars on mindfulness and the mind-body connection including Jon Kabat-Zinn and Dr. Herbert Benson. Can you tell us a bit about their work and what you learned from them?

08:05 You mentioned that for your project ‘My Year of Living Mindfully’ (both a film and book) you tried out the science on yourself. How did that go?

10:01 Is there a big difference between doing mindfulness rigorously every day and doing it three or four times a week?

11:21 You've also written a book, ‘The Whole Health Life’, and have interviewed dozens of scientists and patients about living a healthy life with an autoimmune disease. So, what are the takeaways from writing that?

12:55 You count Professor George Jelinek as a personal hero of yours. Could you tell us about what it was like to meet George?

15:44 Could you tell us about your latest project called ‘What if mental illness was preventable’?

18:38 How can listeners find out more about your work and watch your films?

Key Takeaways: Making lifelong changes is hard but worth it.

12:19 “‘The Whole Health Life’ is broken up into very practical things that the Overcoming MS community is already [doing]. Things like making sure I regularly exercise, get enough sleep, have meaningful connections with the people that I love, and [how to] nurture those relationships. Then, [it] talks about the fact that making these lifelong changes is really, really hard. The book is also about how we can apply the science of behaviour change to actually make [these] changes [so] that we can actually stick to [them].”

Professor George Jelinek shows that people can live well with chronic conditions.

13:04 “I met George (Jelinek) when I was first shooting ‘The Connection’. It was very much the beginning of my understanding of the many things that we can do for ourselves in order to live well with a chronic illness. He blew me away the first time I met him, because he was really well, despite everything. Despite his family history, despite his prognosis, he was just so well, and meeting him was quite inspirational because I thought to myself, ‘well, if, if he can do it, then he's like a living case study for me to show that I can do it, too.’”

Shannon’s next project asks, “What if mental illness was preventable?”

16:53 “While I was making ‘My Year of Living Mindfully’, I learned that so much of mental illness actually begins before the age of 20 or 22, I think it is. If you develop a mental illness at a young age, you are significantly more likely to develop it again later in life. If you've developed it a second time, it greatly increases your chances of developing it a third time. So, I'm really personally interested in this idea of prevention.”

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More info and links: * Find out more about Shannon’s work * Find out more about ‘The Connection’ * Find out more about ‘My Year of Living Mindfully’ * Jon Kabat-Zinn and Mindfulness-Based Stress Reduction * Find out more about Dr. Herbert Benson * Read about George Jelinek’s personal story * Listen to S5E13 Meditation tips with Professor Craig Hassed * Visit the Overcoming MS Mental Health Hub * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

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Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Shannon’s bio: Shannon Harvey is the multi-award-winning director of two internationally acclaimed documentaries, The Connection: Mind Your Body and My Year of Living Mindfully.

She’s currently working on a new film project while balancing her life as the mother of two adventurous boys.

Shannon’s career background Shannon was the recipient of the National Press Club of Australia’s “Health Journalist of The Year” award for her first book, The Whole Health Life, which is about finding good health after being diagnosed with an autoimmune disease.

Shannon has worked as a news and current affairs journalist for leading news organisations such as ABC, Nine Network and Fairfax and her latest book, My Year of Living Mindfully is published by Hachette.

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In this episode, we are sharing the highlights from our webinar 'Women’s Health' with Dr. Jonathan White and Professor Helen Reese Leahy. Dr. Jonathan White is an Obstetrician and Gynecologist, and the Overcoming MS Medical Advisor. Helen lives with primary progressive MS and follows the Overcoming MS Program. They discuss how MS impacts women’s health and how the Overcoming MS Program can best support women’s health.

This webinar was recorded as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and bio information.

Topics and Timestamps 00:56 The history of MS research with women (Helen)

08:15 Reproductive health and MS (Jonathan)

26:14 The Overcoming MS Program supports every aspect of women’s health (Helen)

34:51 Hormone replacement therapy (HRT) (Jonathan)

47:41 Bladder issues with MS and menopause (Jonathan and Helen)

Selected Key Takeaways More research is needed to understand menopause’s effect on MS
"The age group with the highest number of people with MS, both men and women, is now 55-64. So, if you think about [that] within the general MS population, that's obviously a very large number of women who are either menopausal or postmenopausal. But very, very few women over 50 are recruited for MS research trials. So, the effects of menopause on the lives and health of women with MS, in general, but also our response to DMTs, are very under-researched.”

Inflammation can worsen as we age "‘Inflammageing’ is a fascinating term, which essentially [means] the inflamed pro-inflammatory state that people exhibit as they get older. A lot of the conditions we develop at an older age are actually due to increases in inflammation. Cardiovascular disease would be a prime example of that. We think that ‘Inflammageing’ certainly has a role in this mixed bag of MS and menopause, and of course, the obvious one to look at will be oestrogen deficiency.

Is HRT beneficial if you have MS?
There is some evidence to say that it is. But again, none of those studies are prospective or randomised control studies. Generally speaking, it's not recommended to take HRT just by virtue of having MS to protect yourself. But there's certainly no reason not to [take it] because you have MS [and menopause] and in fact, it may be beneficial. So, if you are struggling with the hot flushes, the night sweats or your urinary symptoms have suddenly got much worse, you're suffering from vaginal dryness, then this is definitely a conversation that you should be having."

Bladder issues are common with MS and menopause"With MS in both males and females, we think up to between 50% and 70% of people will have bladder dysfunction due to MS. That usually affects the nerves supplying the muscle, the detrusor muscle in the bladder wall, and makes it very irritable, so it tends to be an overactive or urge problem with MS. That's also very common post-menopause, and the mechanism isn't entirely the same, but it does share a bit, and part of it is certainly to do with oestrogen deficiency."

More Info and Links: * Watch the original webinar * Listen to Dr. Jonathan White’s podcast episodes on Season 1 Episode 2, Season 2 Episode 19, Season 3 Episode 32, the 100th Episode, and Season 4 Episode 64 * Read the paper‘Effects of Menopause in Women with Multiple Sclerosis: An Evidence-Based Review’ * Read ‘Does menopause influence the course of MS?’ * Visit the Royal College of Obstetricians, Gynecologists’ women's health hub * The British Menopause Society * The Women’s Health Concern * Listen to Dr. Rachael Hunter discuss the 3Ps on S4E67 * Listen to Helen’s podcast episode about Primary Progressive MS * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Follow us on social media: * Facebook https://www.facebook.com/OvercomingMS/ * Instagram https://www.instagram.com/overcomingms/ * YouTube https://www.youtube.com/overcomingms * Pinterest https://www.pinterest.com/overcomingms/ * Website https://overcomingms.org/

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Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Dr. Jonathan White’s Bio Career:

Jonathan went to the University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss.

Overcoming MS and personal life:

Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since. Dr. White assists Overcoming MS as a medical advisor and event facilitator.

Professor Helen Rees Leahy’s bio: MS and Overcoming MS

She discovered Overcoming MS in 2008 and has followed the Program ever since. She was previously a Trustee for Overcoming MS.

Personal life and career

Helen lives in Conwy, a small, medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester where she was a Professor in the Department of Art History and Cultural Practice. As an Emerita Professor, Helen continues to research and teach doctoral students. She also spends time hand-weaving and learning Welsh, the language of her ancestors.

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Welcome to Living Well with MS, where we are delighted to welcome MS Nurse, Phil King, as our guest! Phil offers a great perspective: as a Multiple Sclerosis nurse who also has MS himself, he has been following the Overcoming MS Program for more than a decade.

Watch this episode on YouTube here. Keep reading for the key episode takeaways and Phil’s bio.

Questions and Timestamps 00:54 Can you tell us about your personal MS journey and professional MS journey?

05:35 Did you become an MS nurse before or after your diagnosis?

11:36 Do you recommend Overcoming MS to your patients?

17:09 Would you say that your patients are typically keen to add in lifestyle modifications?

20:41 How does smoking affect MS?

25:06 Medication is a pillar in the Overcoming MS Program.

26:07 How does having MS yourself help you in your role as an MS nurse?

29:43 What are your tips for us as patients for interacting with nurses and neurologists?

38:48 Meditation can take on many different forms.

40:15 If you could give some advice to someone recently diagnosed or just starting the Overcoming MS program, what would it be?

Selected Key Takeaways Be honest with your nurse about your symptoms, even if you think they are embarrassing.

32:19 “I'll be honest, I've had bladder issues before. If I'm talking to a patient and they say, ‘I'm having to get up two or three times a night, and it's embarrassing. Sometimes I don’t make it to the toilet in time. I don't really want to speak to a nurse about it, and I don't want to go into the bladder and bowel clinic about it,’ I say, ‘Well, why not? I've been [to the clinic].’”

Work with your healthcare team to manage your condition for life.

37:25 “[MS is] not a condition that is going to end your life very quickly. This is a condition for life. We're now seeing that people with MS have a near-to-normal lifespan, [just like] any other person. So, it's about managing your condition, [and] it's about being honest with your nurse. If your nurse or neurologist asks you to keep a diary [of] how often these symptoms occur, it's really helpful to us because we want you to live the best life that you possibly can.”

You can live a very good life with MS.

43:17 "MS is frightening when you're newly diagnosed, but it does settle down, and there is hope. There is a life to be lived with MS. You can live a very good life. I would say that I look at MS as a gift, which I never thought I'd say. It’s shown me so many different things, different ways of living, [and] different friend groups. If I was told tomorrow, 'Phil, we've made a big mistake. You haven't got MS,' I wouldn't change my lifestyle at all."

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and links: * Read The Overcoming Multiple Sclerosis Handbook * Are you a Healthcare Professional? Visit our Healthcare Professionals webpage * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live Well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Phil’s bio: Phil’s journey with Overcoming MS and fitness Phil King has been following the Overcoming MS program for 11 years. He discovered Overcoming MS through Rebecca Hoover’s site An Intelligent Person’s Guide to Beating MS while he was scouring the internet for help just before diagnosis.

Phil still runs, cycles and lift weights (he admits, “I’ll never be Mr. Muscle but I’m working on it!”)

Phil’s MS and career as an MS Nurse Phil has only had 1 relapse since diagnosis and follows the Overcoming MS program strictly. He works as a multiple sclerosis nurse for England’s National Health Service and contributed his story to the Overcoming Multiple Sclerosis Handbook.

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Welcome to Living Well with MS, where we are pleased to welcome Dr Michael Greger as our guest! Dr Greger is a physician, New York Times bestselling author, and internationally recognised speaker on nutrition, food safety, and public health issues. He speaks to Geoff about gluten and MS, how to get enough iron from food and how to ensure you don’t get a leaky gut.

Keep reading for the key episode takeaways and Dr Greger’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Selected Key Takeaways: Fibre from whole intact grains and legumes will decrease intestinal permeability AKA “Leaky Gut”The most important thing to decrease intestinal permeability or [to] seal up a leaky gut is [to get enough] short-chain fatty acids that our body makes from fibre and resistance starch. These prebiotics that we eat are turned by our good gut bacteria into what are called ‘post-biotics’. What are the most concentrated sources of fibre in the diet? Number one, whole intact grains and legumes including beans, split peas, chickpeas and lentils are the most important sources of fibre.

There are many health benefits to eating ground flaxseedsI'd rather people get their flaxseed oil within their flaxseeds, so from ground flaxseed (that's part of my daily dozen). Just because, in addition to getting the short-chain Omega-3 alpha-linolenic acid in those flax seeds that are found in the oil, you also get a nice low soluble fibre [and] most importantly the lignans which are cancer-fighting compounds which are not found in oil.

Vitamin C improves the absorption of plant-based iron sources
To get enough iron from plant-based sources, you combine sources of iron like legumes and whole grains with Vitamin C-rich foods. Vitamin C actually improves the absorption of plant-based iron. Vitamin C-rich foods [are foods such as] citrus, tropical fruits, broccoli [and] bell peppers. You just want to have it all in your stomach at the same time and that will improve your absorption.

Related Links: * Visit Dr Michael Greger’s website * Find out about Nathan Pritikin (an early pioneer in lifestyle medicine) * Listen to S4E53 Ask Jack on the topic of sodium * New to Overcoming MS? Visit our introductory page * Connect with others following Overcoming MS on the Live well Hub * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Dr Michael Greger’s bio: A founding member and Fellow of the American College of Lifestyle Medicine, Michael Greger, M.D., is a physician and internationally recognised speaker on nutrition. He is a graduate of Cornell University School of Agriculture and Tufts University School of Medicine.

Dr Greger’s careerHis science-based nonprofit, NutritionFacts.org, offers a free online portal hosting more than 2,000 videos and articles on myriad health topics.

Dr Greger is a sought-after lecturer and has presented at the Conference on World Affairs and the World Bank, testified before Congress, and was invited as an expert witness in Oprah Winfrey’s defence in the infamous “meat defamation” trial.

Dr Greger’s booksDr Greger is also an acclaimed author. How Not to Die, The How Not to Die Cookbook, and How Not to Diet became instant New York Times Best Sellers. More than a million copies of How Not to Die have been sold. All proceeds Dr Greger receives from the sales of his books and speaking honoraria are donated directly to charity.

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In this episode, we are sharing the highlights from our webinar ‘Living Well with Progressive MS’ with Dr Phil Startin and Professor Helen Reese Leahy. Both Phil and Helen have progressive MS and follow the Overcoming MS Program. They discuss what progressive MS is and how the Overcoming MS Program can benefit people with progressive MS.

This webinar was recorded in July 2021 as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and bio information.

Selected Key Takeaways Overcoming MS is for every type of MS
Helen Rees Leahy: “Overcoming MS is really determined to be an inclusive space in which everybody's experience of MS is acknowledged and honoured. So, though we [people with progressive MS] may be small in number, our voice is growing, and we're very much being heard within the Overcoming MS conversation.”

Exercise is still important with progressive MS but be gentle and kind with yourself
Phil Startin: “Be kind to yourself, try not to judge [and] compare what you can do now to what you used to be able to do. I've certainly spoken to people who refuse to exercise saying exercising reminds them of what they now can't do and that's really upsetting. We still need goals but hold them more lightly [and] more gently.”

Think of the Overcoming MS Program as a toolkit rather than a set of rules
Helen Reese Leahy: “I started following the Overcoming MS Program in the 2000s. It's become a framework for my daily life. I've never been eligible for any disease-modifying therapy, so in a sense, Overcoming MS is my health care programme. I feel very empowered by following the Program. I am taking responsibility and managing my own health to the best of my ability. I always regard Overcoming MS not as a book of rules, but as a kind of toolkit and to be honest, I really enjoy following the Program.”

More info and helpful links: * Watch the original webinar here * Try yoga with Overcoming MS facilitator Veronique Gauthier-Simmons here * Read more about Progressive MS * Join the Progressive MS Circle * New to Overcoming MS? Visit our introductory page * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episode here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Dr. Phil Startin’s bio: Career and Overcoming MS:
After a DPhil in Quantum Physics, Phil left his academic roots for a more peripatetic career in management consulting, initially with Price Waterhouse. After years of travelling around the world for both work and pleasure, including a two-year assignment in Geneva, he was diagnosed with Primary Progressive MS (PPMS) in 2007.

Phil discovered Overcoming MS in 2011, and coupled with his earlier discovery of mindfulness meditation, it awakened a whole new area in his life. With training and supervision from Bangor University, he now teaches an eight-week mindfulness-based stress reduction (MBSR) course to people with MS and to the general community on a pro-bono basis. He is also a trustee for MS-UK.

Personal life:
Phil lives in Arrochar, Scotland with his American wife, Cristina, whom he met over a weekend at the Jazz Fest in New Orleans. Phil’s completely convinced that the Overcoming MS Program and mindfulness have positively affected the trajectory of his condition

Professor Helen Rees Leahy’s bio: MS and Overcoming MS:
Helen was diagnosed with Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any Disease Modifying Treatment (DMT) within the UK National Health Service, she began to explore holistic approaches to managing her condition.

She discovered Overcoming MS in 2008 and has followed the Program ever since. She was previously a Trustee for Overcoming MS.

Personal life and career:
Helen lives in Conwy, a small, medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester where she was a Professor in the Department of Art History and Cultural Practice. As an Emerita Professor, Helen continues to research and teach doctoral students. She also spends time hand-weaving and learning Welsh, the language of her ancestors.

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In this episode of Living Well with MS, Dr Jonathan White, Overcoming MS Medical Advisor who is living well with MS, welcomes Dr Jonny Acheson as our guest. Jonny Acheson is a physician who lives with Parkinson’s Disease. They chat about Dr Acheson’s diagnosis, the cross-over between MS and Parkinson’s and the importance of healthy lifestyle to manage symptoms for neurological conditions.

Watch this episode on YouTube here. Keep reading for the key episode takeaways, which include great tips and advice for people living with MS and other neurological conditions.

Questions and Timestamps: 02:54 Could you start by just giving us an introduction about yourself, your background, your personal background and what you do for a living?

05:48 What was it that initially brought you to that first consultation?

09:41 Was your consultation done any differently because of the fact that you're a doctor?

18:09 Can you explain what Parkinson's disease is?

20:44 Most people with MS are diagnosed between around the ages of 20 and 40. It's maybe slightly later in Parkinson's disease normally, is that right?

21:37 Does everybody with Parkinson's end up taking Levodo?

25:09 I know for you, exercise has become a really important part of how you manage your Parkinson's. Can you tell us about that side of things?

29:59 How has work changed for you since your diagnosis?

33:12 Do you think that Parkinson's has changed the way you are a doctor in any way?

36:06 When and how do you disclose your diagnosis to your patients?

38:52 The cross over between MS and Parkinson’s lifestyle changes.

41:49 Environmental factors linked to chronic conditions.

45:33 The role of stress and how that affects you.

Key Takeaways A lifechanging Diagnosis

11:07 “I was totally blindsided. I thought I had Multiple Sclerosis. I thought I had Motor Neuron Disease. I thought I had I had a brain tumor. So, for him [the doctor] to say those words [you have Idiopathic Parkinson’s disease], it was life changing news, but I think he was quite sensible. He said, "take four weeks off." I think he was wise and doing that - I needed time to get my head around it. Now you don't get your head around it in four weeks, but at least you start to educate yourself about it and some things started to make sense.”

Taking time off when possible to process and learn about a diagnosis can benefit your wellbeing

16:31 “There are the invisible symptoms that you don't see: the anxiety, the apathy, the problems sleeping. All that stuff is very difficult for people to understand because they don't see it. The four weeks off really helped me, and I think it taught me two things. One, this disease wasn't going to kill me. Well, not directly anyway. And secondly, that high intensity exercise of two and a half hours a week, may slow progression, and it'll certainly help you feel better and reduce your symptoms.”

Find an exercise that you enjoy, that is easy and accessible to keep you motivated

27:50 “I think the difficulty is that the general population has difficulty exercising and motivating themselves to exercise. I think if you're living with a long-term neurological condition, it's so important to keep the motivation. That is really quite a challenge. I think it's about finding something that you enjoy doing. It's finding something that you'll stick at, it's something that you know that is easy, and accessible.”

More info and helpful links: * Read The Imaginary Patient: How Diagnosis Gets us Wrong by Jules Montague * Find out more about Every Victory Counts from the David Phinney Foundation * Read about Scott, a Parkinson’s patient uses exercise to control his symptoms * Find out more about Aerobic exercise for Parkinson’s * Find out more about Sport Parkinson’s * Jonny Acheson’s art website * New to Overcoming MS? visit our introductory page * Visit the Overcoming MS website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Dr Jonny Acheson’s Bio: Jonny’s background Jonny Acheson is an Emergency Medicine Consultant in Leicester who was diagnosed with Parkinson’s in 2016 when he was 41. Originally from Northern Ireland, he moved to England in 2004 to continue his medical training. He uses his art to educate people about Parkinson’s and he has recently taken up the post as Director of Engagement at the Parkinson’s Excellence Network.

Advocacy for Parkinson’s He advocates about the importance of exercise in managing Parkinson’s and is presently running a campaign to ensure people in hospital with Parkinson’s get their time critical medication when they need it.

Jonny’s personal life He is married to Heather, and they have two children Ben (17) and Anna (12). He enjoys watching Leicester City and playing golf.

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Welcome to Living Well with MS. In this episode we are delighted to welcome Associate Professor Sandra Neate as our guest! Sandra is from the Neuroepidemiology Unit (NEU) at the University of Melbourne where she researches lifestyle modification and diet quality for people with MS.

This webinar was recorded in September 2022 as part of our 'Finding Hope with Overcoming MS - 10th-anniversary edition' webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and bio.

Selected Key Takeaways: Evidence shows there are benefits to regular meditation

(28:57) “The most compelling result was that meditation resulted in reduced depression, and increased feelings of mastery. It's about the feeling that one's life is under one's own control and not controlled by external forces, feelings of empowerment, that sort of thing. The interesting finding was that those who were meditating even as little as once weekly for 20 minutes were still experiencing a benefit.”

Sticking to the Overcoming MS diet can lead to improved health outcomes

(21:34) “We've conducted two studies that have looked at sticking with an MS-specific diet. Now some of these are named MS diets, like the Swank diet, the Overcoming MS diet, the Wahls style, etc. One of our studies looked at whether following an MS-specific diet led to improved health outcomes. It found that persistent adherence to the Overcoming MS diet led to lower fatigue, disability and depression than both non-adherence and ceased adherence to the diet. So, your ability to stick with the diet is a very important thing.”

The Neuroepidemiology Unit wants to provide the tools for people with MS to take control of their health

(45:15) “We're trying to build a picture of what lifestyle modification can do in MS. By doing that we hope to help people with MS find confidence and empowerment through the knowledge they've gained. We hope to provide people with MS with the tools to self-manage because the principles are fairly simple. The practicalities may not be so simple, but the tools are there. We hope that people will live with hope, based on the evidence that we've provided.”

Related Links: * Watch the original webinar here * Read the Overcoming MS Handbook: Roadmap to Good Health * Listen to previous episodes with Sandra + Season 3E36 NEU - What's on the research horizon + Season 4E47 Hello 2022, Hello OMS Handbook * Find out more about the NEU here * New to Overcoming MS? visit our introductory page * Visit our website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Associate Professor Sandra Neate’s bio: Sandra’s career
Associate Professor Sandra Neate is a clinician researcher who is the head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at the University of Melbourne in Australia.

NEU research
The NEU researches lifestyle-related risk factors in MS and health outcomes and the experiences of people who adopt lifestyle modification. The NEU is also developing and researching novel ways to deliver evidence-based information about lifestyle modification to people with MS, including online modalities. Sandra's personal research interest is in talking with people with MS and their families regarding the experiences of lifestyle modification.

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Welcome to Living Well with MS, where we are pleased to welcome the Ambassador of the Overcoming MS Toronto Circle, Jesse Mirsky, as our guest! He chats to Geoff about how he felt after being diagnosed with MS, how he adapted to the Overcoming MS Program and why he became an Ambassador.

Watch this episode on YouTube here. Keep reading for the key episode takeaways and Jesse’s bio.

Questions and Timestamps: 00:50 Could you introduce yourself and tell us a little bit about where you live and what you do?

02:03 Can you tell us a bit about your MS journey and how you found out about Overcoming MS?

02:57 Why did Overcoming MS resonate as something to follow?

03:39 Has your perspective changed at all since diagnosis and finding Overcoming MS?

06:51 How did you find quitting smoking? Did you just stop instantly? And what would be your tips for someone who is a smoker and has MS?

09:50 What aspects of the Overcoming MS Program do you like most and have found most straightforward to implement?

12:45 You're the ambassador for the Toronto area. What's the value of being the ambassador for Overcoming MS?

15:03 Could you tell us a bit about your volunteer work with MS Canada?

19:37 If you were to give advice to yourself as a newly diagnosed person, what would that advice be?

Selected Key Takeaways: The Overcoming MS Program empowers and informs people to make positive lifestyle changes

03:02 “[Professor] Jelinek's voice really spoke to me like I'm a relatively intelligent adult. It was the first time I heard ideas like ‘follow this very healthy evidence-based lifestyle program, and still take your DMT with your neurologist’s guidance, if that's a good fit for you.’ It was also the first time I felt like I had a say in my health, in my approach to my MS.”

Grieving your former self can be an important step in making healthy changes

04:02 “I discovered the concept of grieving for the loss of my former self and finding the new me. That concept really resonated with me. In a lot of ways, I actually saw it as a really positive thing. Through that I embraced dietary, exercise and mindfulness initiatives fully. Through the process of discovering who this new me is, I made a lot of decisions to cut out toxic elements from my life, whether that's food and lifestyle related, people, or even something like social media. Overcoming MS was a major factor in helping all this.”

Find the method that works for you to quit smoking

07:40 “I really struggled for about two years with smoking. Whereas [with] my drinking, getting that under control was actually almost easy and immediate in comparison. It feels like I tried everything to quit before I got a handle on it, which included things like tracking every time I smoked, and then trying to reduce the number of times each day, going cold turkey, reading about how horrible smoking is for your health, the scare tactics, etc. All those things. At the end of the day, I actually found Allen Carr's ‘Easy Way to Stop Smoking.’ That book really worked for me.”

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.

More info and helpful links: * Join an Overcoming MS Circle * Listen back to our episode about Mathew Embry and the Best Bet diet * Read Allen Carr’s Easy Way to Stop Smoking * Live in Canada? Get more information about MS Canada support groups * New to Overcoming MS? visit our introductory page * Visit our website

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Jesse’s Bio:
Jesse lives in Toronto, Ontario. He works for a Toronto-based tech startup focused on accessible digital products.

Jesse’s volunteer work Jesse volunteers for Overcoming MS and MS Canada, Canada’s national MS-focused charity.

As an ambassador with Overcoming MS, he facilitates the Greater Toronto Area online Circle support group. He is also a member of the Overcoming MS Communications Advisory Group.

At MS Canada, he facilitates a support group for people who are newly diagnosed with the disease and gets to work with the charity’s education team on webinars and events, too.

Discovering Overcoming MS A major turning point in coming to terms with his diagnosis was discovering Overcoming MS. The program has helped him to change his perspective, offered him access to a community of others who can relate and has reinforced a positive outlook that he can always come back to for inspiration and hope.

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Welcome to Living Well with MS, where we are pleased to welcome Molly Meng as our guest! Molly has been following the Overcoming MS Program since 2020 and is an artist with a passion for storytelling. She chats to Geoff about how she adapted to the Overcoming MS Program, how she has found ways to manage stress and how her MS diagnosis has led her to build connections with others living with MS.

Watch this episode on our YouTube here. Keep reading for the key episode takeaways and Molly's bio. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

World MS Day

Tuesday 30th May is World MS Day, this year we're joining charities all over the world to share stories of connection using #MSConnections. Join the global campaign to make a difference to people with MS here: overcomingms.org/worldmsday

Key Takeaways:

Understanding how diet affects your health can help you make changes

“I was such a dairy hound. I was not only raised on dairy, but if you asked me one thing that I love having in my life ever it was dairy cream. Didn't have to be ice cream, just cream, milk, butter. I loved dairy so much that I thought, ’how will I ever give it up?’ But the moment I read [the research on] the Overcoming MS website, I walked into my kitchen, and I just emptied out my fridge.”

Following the Overcoming MS diet can get you excited to try new flavours and food combinations

“[Following the Overcoming MS Program] has changed my excitement for food. I thought I was a foodie before, but now I wake up in the morning [and] I think what kind of flavours do I want to put together? Do I want salty and sweet? What can I use to get to that flavour? Can I use dates? Can I actually use a little tahini and dill? I just love it. I now cook and make things as a relaxing hobby.”

Mindful walking can be a form of stress-reduction

“When I'm on my dog walk, I don't take a phone. I don't have conversations. On the dog walk, I just find that I'm really mindful and I'm noticing the robins and the flowers. My whole body tends to lower its adrenaline and by the time I get home from that walk, I don't find a lot of things to be stressed about.”

Related Links: * Molly’s Website: https://www.mollycmeng.com/#/ * Molly’s Instagram: https://www.instagram.com/molly_c_meng/ * New to the program? Check out our quick guide to getting started: https://overcomingms.org/new-to-oms * Overcoming MS Recipes: https://overcomingms.org/resources/recipes * New to Overcoming MS? visit our introductory page * Find out more about Overcoming MS here: https://overcomingms.org/

Don’t miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. If you like Living Well with MS, please leave a 5-star review.

Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can make a donation here.

Bio: Molly’s personal life and MS diagnosis

Molly Meng is a Los Angeles, California native who recently moved with her husband to Portsmouth, New Hampshire. She was diagnosed with MS in August 2020 and started following the Overcoming MS program that same month. The move from CA to NH was largely influenced by this diagnosis, in an effort to slow down and live deeper in nature.

Molly’s career as an artist

Molly is an artist, working with ephemera, vintage photos and textiles, who also teaches creative workshops throughout the year. She loves being on stage performing stand-up comedy, and storytelling. Molly finds enjoyment and ease in seeking out new people and speaking with strangers. Her motto that “strangers are just friends you haven't met yet” has led her to meet a wide variety of others who are living well with MS.

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Welcome to Living Well with MS. In this episode we are sharing the highlights from our ‘Mindfulness and Meditation with Overcoming MS’ webinar with Overcoming MS Facilitator Dr Phil Startin. Phil discusses ways to make mindfulness and meditation part of your daily life.

This popular webinar was recorded on 17 April 2022 as part of our Finding Hope with Overcoming MS - 10th anniversary edition webinar series.

Keep reading for the key episode takeaways and bio.

Selected Key Takeaways:

Starting a new meditation habit can be difficult

3:17 “When we run Overcoming MS retreats or events, often one of the first questions we ask the group is ‘which steps in Overcoming MS do you find the hardest to adopt?’ And it's always meditation. If you do struggle with meditation, and getting a practice going, you're definitely not alone. Of all the different steps within the Overcoming MS program to actually adopt about 34% of us really, really struggle with that.”

Give yourself permission to take time out to meditate

6:28 “We’re almost addicted to activity at times. Activity has become a measure of success, which just seems to be crazy. We're almost ‘not allowed’ to sit and do nothing. There's a phrase I really like, ‘we’re not human beings, we're human doings.’ We just spend all our time doing things. But perhaps the biggest reason why we don't meditate, or why we stop meditating is we just don't give ourselves permission.”

Keep yourself accountable for your meditation practice

10:34 “At the end of the day, you need to be accountable for actually getting yourself to start meditating. I recommend that you journal, and record every time you meditate: what was that meditation experience like for you? I did for a number of years. And I found it extremely helpful to be able to look back over my experiences, and to see how it worked. It's a great way of learning about the practice. Give yourself a little reward now and again, as well. If you manage, let's say, a week of meditating within no gaps, then reward yourself for a month of meditating.”

Related Links:

Watch the original webinar here
Overcoming MS Meditation resources
Other Living Well with MS episodes on mindfulness
- S2 Episode 24 Top hacks for getting into a meditation habit with Alison Potts
- S1 Episode 7: Building a Daily Meditation Practice with Craig Hassed
Sign up for the next live webinar.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Dr. Phil Startin’s bio:

Career and Overcoming MS:

After a DPhil in Quantum Physics, Phil left his academic roots for a more peripatetic career in management consulting, initially with Price Waterhouse. After years of travelling around the world for both work and pleasure, including a two-year assignment in Geneva, he was diagnosed with Primary Progressive MS (PPMS) in 2007.

Personal life:

Phil lives in Arrochar, Scotland with his American wife, Cristina, whom he met over a weekend at the Jazz Fest in New Orleans. Phil’s completely convinced that the Overcoming MS program and mindfulness have positively affected the trajectory of his condition.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are pleased to welcome internationally renowned mindfulness expert, Professor Craig Hassed.

Watch this episode on our YouTube here. Keep reading for the key episode takeaways and Craig's bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Key Takeaways

Improving mental health will have an anti-inflammatory effect on the body

2:40: “Improving our mental health and well-being and reducing our stress has an anti-inflammatory effect. High levels of stress, anger, hostility, and poor emotional health have a pro-inflammatory effect. This is very important for an inflammatory based condition, like MS. But also, if there are any symptoms that we're dealing with, the "bothersomeness" of various symptoms seems to be improved through the practice of meditation.”

Recordings are very helpful, but the ultimate goal is to meditate unguided

22:13 “It's very useful to get comfortable with knowing the practice, feeling like we're understanding it [and] having guidance for a while. To wean ourselves off [guided meditation], maybe revisit the guided practice every so often, if you feel you need a top up or reminder. But ultimately, you want to be independent, so that you take it anywhere you go.”

Visualising our bodies doing specific actions can aid in rehabilitation

40:01 “What happens when we imagine that physical action is that it stimulates the circuits in the brain that are associated with doing that action. If there's a blockage for getting the message through, it keeps knocking on the door, and stimulates either new growth to try and bridge that gap or to find another way of getting the message through. What they found in the research is that people rehabilitate faster, better and get more function back if they have the mental practice, as well as the physical physiotherapy rehabilitation.”

Professor Criag Hassed leads a 5-minute meditation at 46:15

Related Links:

Listeners get a 15% discount on all groups, mention Living Well with MS. Book a discovery call with 'The MS Stage'.
Access a free 3-day Meditation Journey on 'The MS Stage' Instagram page.
Try a guided meditation from Overcoming MS.
Watch the Hope Reborn music video, featuring a dance sequence finale.

Don’t miss out:

Make sure you also sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis. In this episode, we are sharing the highlights from our ‘Exercising at (or close to) home’ webinar with Overcoming MS Facilitator and qualified yoga teacher, Dr Véronique Gauthier-Simmons. Véronique speaks about the importance of exercise when you’re living with MS and how to make exercise a healthy habit that you’ll enjoy.

This webinar was recorded in June 2020 as part of our Refresh with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and Veronique’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with multiple sclerosis. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Véronique’s bio:

Véronique has been an Overcoming MS facilitator since the AMEX event in Brighton in 2017 and has since led the exercise sessions at several Overcoming MS retreats.

She started yoga when she was diagnosed with relapsing remitting MS in 2000 at the age of 34. At the time, she was lecturing at University College Dublin while completing her PhD thesis. She was a heavy smoker then (though no longer), but also addicted to the gym – especially spinning and step aerobics!

Véronique’s yoga qualifications Yoga was so beneficial for her that Véronique decided to become a teacher. She qualified in Hatha yoga (2009) and then in Yoga Therapy (2013). Together with her husband, she created Taming the Walrus, which is dedicated to encouraging people with chronic conditions to practice yoga. They now live in the South of Portugal.

Véronique and Overcoming MS Véronique has followed the Overcoming MS Program since 2012 and has found that her health and fitness keep improving. Her exercise regime now also includes weight training, swimming and running. But she’s always open to trying new types of exercise.

Key Takeaways: There are many benefits of exercise for people with MS

3:17 “When I was diagnosed 20 years ago, my neurologist advised me that exercise was bad for MS. But, since then, there are loads of studies and research showing it's actually good for us, even if the symptoms come up when you exercise. Exercise is good to maintain and develop muscle strength. This has an impact on your mobility, your posture, [and] on daily activities. Exercise also helps to maintain walking speed and it has been proven that exercise increases your energy level.”

If you struggle with fatigue, break your exercise down into manageable short sessions throughout the day

18:45: “If you suffer from fatigue, break it down. In the morning, you could do a two-minute warm-up. There's one very simple warm-up that you can do which is basically moving all your joints, one after the other from the hands to the feet, just moving them around slowly. Then you [could] do five minutes of stretches in the morning. Then later during the day you can do five minutes leg strengthening and core strengthening. Maybe in the afternoon, some upper body strengthening. Then in the evening, I would suggest doing some relaxation. We have to remember that exercise can significantly reduce fatigue levels. It's important to exercise, I think it's important to remember that even 10 minutes makes a difference.”

Start slow and go easy on yourself

20:30 “You don't have to run a marathon. Moderate exercise regularly is great. If you can't do 30 minutes, because you are too tired, or because you're in pain, or you've got balance issues, then do 10 minutes. It's better than nothing. And maybe later, you can do another five or 10 minutes to try to break it down, if it's too much in one, go. And remember to adapt to your condition and be flexible. Don't blame yourself [if you can't do as much as you'd like to].”

Related Links: * Watch the full webinar here * Listen to Véronique on S1 Episode 6: The OMS Guide to Getting Fit * Try Overcoming MS workouts here * Find out more about ‘The Joy of Movement’ by Kelly McGonigal here * Listen to the founder of the MS Gym on the Living Well Podcast here * Find out more about MS Workouts * Find out more about the Johns Hopkins Cooley Center

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are pleased to welcome nutrition educators and breathing instructors Annette and Graham Henry!

Keep reading for the key episode takeaways and Annette and Graham’s bio.

Bio: Graham and Annette Henry are the founders of Henry and Henry, Plant-Based Nutrition Educators and Breathing Re-education Instructors.

Their health challenges that led them to become experts Both British, they relocated to Germany in October 2020 and now live in Berlin. They have each resolved their own particular health challenges via a dietary approach. For Annette, this was initially endometriosis, and later on chronic fatigue. For Graham, it was obesity, high blood pressure and elevated cholesterol.

Their training as whole food plant-based educators Becoming increasingly aware of the impact of diet on our health, Annette and Graham were motivated to learn more about a nutritional approach to managing and resolving chronic conditions, realizing that this would also have knock-on benefits for planetary health. As a result, they both trained as whole food plant-based educators and now apply their knowledge and passion to not only help others transition successfully to a more plant-based diet as a route to improved health but also as a means of contributing to a more conscious and compassionate world.

Becoming certified breathing instructors Annette and Graham recognise that the journey of self-realisation and the key to resolving health issues doesn’t always follow an obvious and linear route and that it requires continual revaluation and adaptation. Thus, when one of them self-diagnosed a breathing issue, realising that diet is only one piece of the puzzle, it prompted them to investigate the science of breathing and how the way we breathe can affect our physical and cognitive health. As a result of their findings, they have now become certified breathing instructors, helping clients to resolve and better manage a range of health conditions and to improve performance.

Henry and Henry

Annette and Graham run regular events, classes and workshops on whole food, plant-based nutrition and breathing. Further details can be found on their website at https://www.henryandhenryeu.com

Key Takeaways: Prebiotics, probiotics and postbiotics

“Prebiotics are the fibres that we eat, that we can't actually do anything with, but our gut bacteria can. That's their food and that’s what they thrive on. Probiotics are the healthy gut bugs that we have. So, the prebiotics are for the probiotics (our gut bugs). Then the postbiotics are the byproducts of that nutrition, that the bugs eat, [and] that release all sorts of wonderful chemicals in our body - short-chain fatty acids – which we now know, have so many health benefits.

How to transition to a plant-based diet

“I would say that taking smallest steps is better for most people, because they can handle that better. It may be a case of changing one meal, making sure your breakfast is plant-based every day or a different meal or whatever [meal you choose], and increasing it [and] looking at swaps.”

Breathing for health

“The Buteyko Breathing Method is really for dealing with health conditions. If you're breathing incorrectly, then somewhere in your health, things will not work quite as well as they could. It could be more obvious things such as asthma and anxiety. Sleep can be extremely impacted by [breathing incorrectly], as I'm finding out and it’s just starting to get exciting because I am actually finally sleeping a little bit better. [There] are all sorts of other areas too, that you might not imagine, [for example] your posture is impacted by your breathing.”

Related links: * Henry and Henry is an Affiliate Organization of Plant Based Health Professionals UK * Salus Fatigue Foundation is a non-profit organization which inspires people affected by fatigue to live happy and healthy lives. * Listen to Living Well with MS Coffee Break #21 with Friends Reunited cofounder Julie Pankhurst * Reach James Nestor’s book Breath * Learn about Buteyko Breathing

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode we are pleased to welcome professional cook and writer, Jack McNulty as our guest!

You can submit your questions for Jack anytime by emailing podcast@overcomingms.org. Keep reading for the key episode takeaways and Jack’s bio.

Bio Jack’s career Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested home cook to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack operated his own catering business and cooking school for 15 years, while also finding time to write about cooking.

Jack and Overcoming MS Jack has followed the Overcoming MS lifestyle since 2009. He has actively worked on providing recipes and information to the Overcoming MS website, was the contributing editor to the Overcoming MS Cookbook, and authored the ‘Eat Well’ chapter in the latest Overcoming Multiple Sclerosis Handbook.

Key Takeaways The Overcoming MS diet will help manage inflammation “If you look at it just purely on the dietary portion of the Overcoming MS program, if you follow the guidelines, it gives you a good chance of - over time - getting back to some sort of base level. And that may take somewhere between five and seven years for a lot of people. I know it did for me, it was around seven years before all my symptoms just vanished. The goal is to promote health in your body. So, [if] you want to decrease inflammation, you want to ingest foods that are going to play a role in decreasing inflammation.”

It’s helpful to research restaurant menus ahead of dining out “If I'm going to a place I've not been, I turn to the internet first to see if there is a menu online. Maybe by looking online, you're just already going to say, ‘well there's only one thing I can have on this menu’ and that might not be good enough. But it's also possible that there are some possibilities here and you have some questions already in mind before you even get to the restaurant that you could ask the server.”

Don’t stress if you eat something by accident/not by choice when eating out “Over the years, having an experience like that [eating something by accident/not by choice when eating out] is not going to have a huge impact. Now, having said that, I think it's probably not a good idea to just say, well, it's accepted because Jack just said so. I'm not saying that at all. I'm just saying that sometimes those things come up and it's better to just not stress about them and then just go ahead and enjoy it and move on. And next day, be twice as healthy.”

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Related Links: * Read the Overcoming MS Handbook * Download the Overcoming MS Chef cards * Listen to previous “Ask Jack” episodes S3E34, S3E35, S3E38, S3E41, E3E48, S4E51, S4E53, S4E65

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are sharing the highlights from our ‘Family friendly Foods’ webinar with Nutritional Therapist Sam Josephs. In this episode, Sam shares how to incorporate easy, family-friendly Overcoming MS recipe ideas into your everyday life and social gatherings.

This webinar was recorded in June 2022 as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and Sam’s bio.

Bio: Sam Josephs believes passionately in diet and lifestyle intervention as a powerful preventative approach to all chronic health conditions, including MS.

Sam’s qualifications and career Since graduating from BCNH (UK College of Nutrition and Health) in 2008, Sam has been working in her North London clinic seeing clients on a 1-2-1 basis. She has also worked as a pastoral and clinical tutor for BCNH, and appears annually as a guest lecturer at both BCNH and the Institute of Optimum Nutrition, training upcoming nutritional therapy students in a variety of conditions, including MS. She has presented to many MS support groups, was an expert panelist at the MSLife Expo in 2016 and has worked as a retreat facilitator for Overcoming Multiple Sclerosis.

She is a fully qualified Nutritional Therapist, a full member of the British Association for Nutrition and Lifestyle Medicine (BANT) and is also registered with the Complementary and Natural Healthcare Council (CNHC) – the only register for Nutritional Therapy recognized by the Department of Health.

Sam’s personal life Her husband was diagnosed with Multiple Sclerosis in 2002 which has shaped the direction of Sam’s career and gives her the compassion and unique hands-on knowledge to support so many others with the condition. Above all else, Sam enjoys nothing more than a trip to the Farmer’s Market, or a good greengrocer and is a keen and experimental cook for her family and friends.

Key Takeaways: Making your own veggie burgers is easier than you think “A lot of store-bought meat substitutes contain a long list of ingredients or the cheap oils like palm oil. But they are pretty easy to make yourself. Essentially all you're doing is rinsing a can of beans, adding some dried oats, or some leftover cooked rice from the day before, or a chunk of bread which you can toast if it's maybe a bit stale and blitz it up into breadcrumbs. Maybe add an egg white, and then just put loads of herbs and seasonings and flavors in it. And if you just mix it all up together in a blender, then it will make some really nice patties.”

Healthy snack dips are easy and delicious “Dips are a great thing to have in the fridge for sandwich breads, picnics, but also when the kids get home from school. Rather than KitKats and crisps, they could just grab a carrot and stick it into a nice dip. It's essentially just using a dollop of soy yogurt, either blended up with a tin of fish (smoked mackerel works really well) or a tin of beans and blitz it all up together with a handheld mixer, and presto, it's a dip!”

Children take family eating habits with them into adulthood “If we make those changes, and we set them in stone at home in the family, when the kids grow up and live alone, and go off to college or get [their] first job, [they’ll take those healthy habits with them.] So switch things like white bread to brown, try to switch white rice to brown or whole grain cereals, switch out from something like Frosties every day, to having porridge once a week, or a nice muesli once a week, just changing the routine [can make a difference for them].”

Related Links: * Listen to Sam’s previous episodes of Living Well with MS:

o S1 Episode 3: The OMS Diet in a Nutshell (Part 1)

o S1 Episode 4: The OMS Diet in a Nutshell (Part 2)

Watch the original Webinar recording here

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

Support us

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode we are pleased to welcome Steve Hendricks, the author of The Oldest Cure in the World: Adventures in the Art and Science of Fasting as our guest!

Keep reading for the key episode takeaways and Steve's bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Content Warning: This episode mentions a study involving data on attempted suicide. If you are having thoughts of self-harm, please reach out to someone. Find a list of hotlines here. Overcoming MS has a mental health hub with resources for managing anxiety, uncertainty and stress.

Bio:

Steve’s career: Steve Hendricks is a freelance reporter and the author of the new book The Oldest Cure in the World: Adventures in the Art and Science of Fasting. He’s also the author of two previous books, one of which, The Unquiet Grave: The FBI and the Struggle for the Soul of Indian Country, made several best-of-the-year lists. He has a website with information about his books and an extensive list of FAQs about fasting.

Steve's personal life:He lives in Boulder, Colorado (USA), with his wife – a professor of family law – and his dog, a border collie cross.

Key Takeaways:

A longer daily fasting period helps our body make repairs and reduce leaky gut syndrome

13:38 “The longer we give our bodies each night to do all this work, the better it does them. If we narrow our fasting window too much, our body will not be able to make these repairs. Chronobiologists biologists, who study the timing of our bodies, think that it's highly likely that our long eating windows and narrow fasting windows each night are one of the contributors, in addition to our cr@ppy diet, to leaky gut syndrome.”

Clinical observations have shown fasting can improve many conditions, including MS!

24:36 “We have more than a century of clinical observations from fasting doctors, across multiple generations [and] multiple countries, (mostly in the US, Germany, Russia) who report very credibly many cases of reversals of cardiovascular disease through prolonged fasting. I'm talking fasting for a week, two weeks, sometimes up to 30-40 days, depending upon the condition. Cardiovascular disease, type two diabetes, skin diseases like psoriasis and eczema and acne, asthma, allergies. It's a very long list. Fasting doctors routinely report that prolonged fasting is good for autoimmune diseases.”

Research into the benefits of fasting for people with MS is very promising

50:00 “Valter Longo found that fast mimicking diet cycles not only prevented the demyelination and damage to the axons in mice – which are the parts of the nerve that conduct impulses – but also began to remyelinate some of the stripped off myelination on those same parts of the nerves. In consequence, the mice did better on motor tests, they did better on mental tests. And here's the sleeper headline: 20% of these mice appear to have been cured. All their symptoms were gone. So, a pretty moderate amount of fasting cures MS in mice.”

To hear our latest tips and news about living a full and healthy life with MS, make sure you sign up to our newsletter

Related Links:

Visit Steve Hendricks’ website SteveHendricks.org
Buy ‘The Oldest Cure in the World’ from Bookshop.org or Hive.co.uk
Read Steve’s article ‘Starving Your Way to Vigor’ in Harper’s Magazine on fasting here: https://harpers.org/archive/2012/03/starving-your-way-to-vigor/
Find out more about Michael Mosely’s 5:2 diet: https://thefastdiet.co.uk/
Read the Buchinger Wilhelmi fasting clinic interview with Francois Wilhelmi de Toledo here: https://www.buchinger-wilhelmi.com/en/interview-winterson-and-francoise-wilhelmi-de-toledo/
Listen to Valter Longo on Living Well with MS here: https://overcomingms.org/resource/podcast/s2-episode-15

Don’t miss out:

Support us:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore topics relating to living well with multiple sclerosis (MS). In this episode, we are pleased to welcome Renee Coffey as our guest. Renee has been following the Overcoming MS Program for over 10 years. She talks about her Overcoming MS journey, her story that was published in the ‘Overcoming MS Handbook’, and her advice to those just starting out on the Program.

Keep reading for the key episode takeaways and Renee’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with multiple sclerosis. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Bio:

Renee started on her Overcoming MS journey shortly after her first MS episode in 2011 so has been following the Overcoming MS program for over 10 years.

Renee’s career and personal life In her day job, Renee works full-time as the Deputy CEO of the Australian Indigenous Education Foundation, a role and cause she cares deeply about. Renee is mum to two boys, aged 7 and 9 and gets to share two older children with her partner Jason - wonderful young women aged 20 and 21.

Renee’s lesions have disappeared and/or shrunk Three years ago, following a routine MRI, Renee was told there was no disease progression. Also, one of the lesions on her spine had disappeared, and one had shrunk to just millimetres. Last year, Renee received the great news. Not only is there no new disease activity, but now the two lesions in her brain have disappeared as well.

Renee’s passion for Overcoming MS Renee is passionate about her Overcoming MS journey and credits her good health and so much of the richness she experiences in her life to the Overcoming MS program and community.

Key Takeaways:

MS Symptoms are varied and sometimes confusing, mimicking other conditions “The itching was across one of those bands around my torso, on one side. My GP clued up on to that pretty quickly. Once he tried a few things, and that didn't work, he actually gave me a referral to a neurologist, which for me was quite surprising because I thought I had been bitten by a spider. Then, I started thinking maybe I had shingles or something like that. As far as I knew, a neurologist was just for your brain, so I was thinking, ‘hang on a second, that seems like an odd referral.’ But I googled the neurologist and he was a specialist in MS.”

Following the Overcoming MS Program will improve your overall health and wellbeing “The Overcoming MS program has brought so much more to me than the absence of decline. I actually think it has brought a lot of richness to me, by way of just changing my outlook on my health and my wellbeing and putting that at the front and centre of what I do. I am definitely a much healthier person now, in a holistic sense, than I was before my diagnosis. I love the way I eat. If you told me tomorrow that I could take a magic pill and you'll cure my MS, I would not be running straight to a cheese platter or digging into a steak. I couldn't think of anything worse.”

Renee hiked part of the Camino de Santiago (an ancient Pilgrim route through Europe) with her family “If you had told me 10-plus years ago that I was even going to want a hike 215 kilometres, I wouldn't have believed you. But I think that's part of this change. I never played team sports before my MS diagnosis, I never had any level of fitness or any interest in any kind of fitness activity or outdoor activities. And so that's all come from this much healthier view on holistic health.”

To hear our latest tips and news about living a full and happy life with MS, like Renee has done, make sure you sign up to our newsletter

Related Links:

Read the Overcoming MS Handbook
Read more about how to prevent MS in family members
You can hike part of the Camino de Santiago while fundraising for Overcoming MS

Don’t miss out:

Support us:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are sharing the highlights from one of our ‘Ask Aaron’ webinars, where neurologist, Dr. Aaron Boster, answers questions about MS from the community. Dr. Boster covers a range of fascinating topics such as fasting, menopause and gut health.

This webinar was recorded in March 2022 as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and Dr Boster’s bio.

Keep in touch: Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Dr. Aaron Boster’s Bio:

Dr. Aaron Boster is an award-winning, widely published, and board-certified neurologist specialising in multiple sclerosis (MS) and related CNS inflammatory disorders. He currently serves as the Director of the Neuroscience Infusion Center at OhioHealth.

Why Dr. Boster chose to become a specialist in MS

Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experience informed Dr. Boster’s drive to do things differently.

Dr. Boster’s career

At OhioHealth, he spearheads a revolutionary model in MS treatment and patient care drawing on interdisciplinary resources and putting patients and families first. Dr. Boster is also an Adjunct Assistant Professor of Neurology at Ohio University Heritage College of Osteopathic Medicine, and a former Assistant Professor of Neurology at The Ohio State University, where he also formerly headed the Neuroimmunology division.

Dr. Boster has been intimately involved in the care of people impacted by MS; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and has been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energise and empower people impacted by MS. 

Dr. Boster’s education and personal life

Dr. Boster grew up in Columbus, Ohio and attended undergraduate at Oberlin College. He earned his MD at the University of Cincinnati College of Medicine and completed an internship in Internal Medicine and Residency in Neurology at the University of Michigan, followed by a two-year fellowship in Clinical Neuroimmunology at Wayne State University. 

He lives in Columbus, Ohio with his wife, Krissy, son Maxwell, and daughter Betty Mae.

Selected Key Takeaways:

Embracing exercise is an important step to improve outcomes for MS

“I would encourage the entire family to embrace exercise, when it's nice outside, you go for a walk and kayaking and canoeing and what have you. We have excellent data that people impacted by MS who exercise as part of their lifestyle end up less disabled at the end of their life as compared to they didn't. And so we want to help instil those important, very, very important behaviours in a young person as early as possible.”

Intermittent Fasting is recommended and is safe for MS

“Within the last year, I've become very interested in not just what PwMS eat, but when they eat. When they eat turns out to matter. It's my opinion that intermittent fasting specifically is a bio-hack, not just for people impacted by MS,but for [all] humans. And it's my opinion that intermittent fasting is very safe in the setting of MS.”

What to consider when thinking about alternative medicine

“When someone wants to consider alternative medicine, which I will define as something that I was not taught in medical school, it doesn't make it good or bad. It just means I wasn't taught about it. An example might be acupuncture. I was not trained in acupuncture, which doesn't mean it's not real. It just means I don't know much about it. So, when I'm presented with something that is alternative, then I'm okay with it as long as three rules are met. The first one is it can't be too expensive. ... The second thing is it can't be dangerous. ... And [the] third is it can't be instead of something that I know works.”

Related Links:

Dr. Boster was on three previous Living Well with MS episodes:
- S1E11: Making the Right Medication Choices
- S2E17: Lifestyle Choices and their Impact on MS
- S3E43: Let’s Talk About Sex (and MS)
Check out Dr. Boster’s popular YouTube channel covering all aspects of MS.

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Welcome to Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, Geoff meets MS and disability activist, Roxy Murray.

Keep reading for the key episode takeaways and bio. You can also watch this episode on our YouTube channel here.

Roxy Murray’s bio: If you're keen on driving inclusivity, Roxy's story will be of interest to you.

Roxy Murray (@multiplesclerosisfashionista) is a London (UK) based MS and disability, sex and body positivity and Queer activist. She is also a podcaster, voiceover artist, fashion stylist and the designer of sick and sickening (@sickandsickening) clothing, a brand created to celebrate disabled and invisible illness warriors.

She focuses her attention on creating better representation, consideration and inclusion within the MS narrative for people of colour and the LGBTQIA Community.

Roxy’s Social Media Through her social media, Roxy combines her love of fashion and art to empower others on their journey, whilst they navigate through life with a disability or invisible illness. She creates videos and Instagram content that celebrates and brings visibility to the beauty of the community with her hashtag #WeAreNotInvisible.

She also focuses her attention on helping others take steps to release grief and openly talk about her own mental health battles.

Roxy’s podcast She highlights real unfiltered stories and talks about taboo subjects like disabled joy, sexual empowerment and much more on her podcast (@sickandsickening_podcast).

Selected Key Takeaways Accessible fashion is adaptable, so that it suits every body, every shape, and every person’s needs

Sometimes that might be an adaptable sleeve, it might be magnetic fastening. Jewellery is a big one for me, I find it really hard to clip in the little clips around the neck. You can get ones [fastenings] that are just magnetic so it's easier to pull on and push off for someone that wants to be chic and fashionable and look good, but they want to be able to dress themselves.

Then Barbara Met Allen is a new TV show chronicling the UK’s disability rights movement

It's more inclusive it's more accessible and people that are disabled are being allowed to tell [their] own stories, which is really special. So, you have a story of when Barbara met Allen and together, after the disability rights generation movement in America, it came over here. They were looking for their own accessibility revolution.

There’s no need to desexualize disabled bodies

I'm a 34-year-old, unapologetic Aries. I'm going to stand up, be proud and look fabulous. I've literally walked a runway show with a mobility aid, and was like, “I'm going to wear underwear and be fabulous and show people we can be disabled and be sexual and be good and curious and gorgeous”.

Related Links: * Connect with Roxy on Instagram * Roxy's podcast: Sick and Sickening on Apple Podcasts * Myelin & Melanin podcast: myelinandmelanin.com * Alinker walking bike: www.thealinker.com/ * Unhidden Clothing: unhiddenclothing.com/ * Watch 'Then Barbara Met Allen' on Netflix: www.netflix.com/gb/title/81406123 * The ADAMS study: app.mantal.co.uk/adams * Listen to our podcast with Mitzi Joi Willams: S4 Episode 50 * Find out more about Dominic Shadbolt’s The MS Guide: dominicshadbolt.com/ * Watch Sex Education on Netflix: www.netflix.com/gb/title/80197526 * Hot Octopus adaptable sex toys: www.hotoctopuss.com/uk/en/ * Listen to our podcast with Aaron Boster on MS and Sex: S3 Episode 43 * Follow Dave Walsh: www.instagram.com/sitting_bull_uk * Follow Yazzie: www.instagram.com/yazzietalks/ * MS Together www.mstogether.org/

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are pleased to welcome Dr Michelle O’Donoghue, OMSer (someone following the Overcoming MS Program) and co-editor of the Overcoming Multiple Sclerosis Handbook, as our guest.

Keep reading for the key episode takeaways and Michelle’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Michelle’s bio:

Career

Dr Michelle O’Donoghue is an Associate Professor of Medicine at Harvard Medical School and a practicing physician in the Cardiovascular Division at Brigham and Women’s Hospital in Boston. She is the inaugural recipient of the McGillycuddy-Logue Distinguished Chair in Cardiology.

Dr O’Donoghue earned her medical degree at Columbia University College of Physicians and Surgeons in New York City. She subsequently completed a Master’s in public health degree at the Harvard School of Public Health.

MS diagnosis and Overcoming MS

Dr O’Donoghue was diagnosed with multiple sclerosis in 2010 and adopted the Overcoming MS Program (diet and lifestyle changes) shortly thereafter. She has lived free from clinical relapses since that time.

In 2022, Dr O’Donoghue, Professor George Jelinek and Associate Professor Sandra Neate published the Overcoming Multiple Sclerosis Handbook that they co-edited together which provides an accessible overview of the Overcoming MS Program created by Professor Jelinek, including empowering community stories.

Selected Key Takeaways

Overcoming MS offers hope and a way to change the trajectory of MS

“I think that when people first get a diagnosis [of MS], they envision that it is a course towards progressive deterioration, and progressive symptoms, and then that course can't be modified. And so, for me, it was so exciting, and it gave me so much hope, to feel like there was some ability that I might have to change that trajectory and that's a big part of why I adopted the Overcoming MS plan.”

It can take time to come to terms with an MS diagnosis and it may take time to fully embrace the Overcoming MS program

“I came across Professor Jelinek's book about Overcoming MS and the first time that I read the book, it didn't initially resonate with me as much as it did when I picked it up several months later. When I look back, I think to myself, ‘why was it that I didn't initially embrace his suggestions?’ I think that there are many reasons for that. One of which was, I was still just in an initial denial in general about my diagnosis and I was going through the different phases of grief really to cope with that, and my initial reaction was denial.”

Following the Overcoming MS Program will improve your overall health

“Professor Jelinek appropriately emphasizes that all elements of the program are equally important. I try to remind myself of that on a regular basis. At the end of the day, I think that [for] anyone who's considering the Overcoming MS program, I would encourage them to recognise that it's a win-win. Following a predominantly whole food plant-based diet, adopting stress management strategies, and making sure that you deal with any mental struggles that you may have, face those demons. I think it leads you to a better place overall.”

Related Links:

Read the Overcoming MS Handbook: Roadmap to Good Health: https://overcomingms.org/overcoming-multiple-sclerosis-handbook-roadmap-good-health
Read the Overcoming Multiple Sclerosis book: https://overcomingms.org/resources/overcoming-multiple-sclerosis-book
Find out more about Roy Swank’s research on a low saturated fat diet for people with MS https://overcomingms.org/latest/swanks-paper-looking-effect-low-saturated-fat-diet-ms

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Welcome to Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are taking you back to the launch of the ‘Overcoming MS Handbook: Roadmap to Good Health’ with Professor George Jelinek, Dr Jonathan White and Dr Phil Startin. Together they discussed how the new book was created, the highlights from the book and answered questions from the community. We were excited by the arrival of the new book, as it provides an engaging overview of the Overcoming MS Program combined with stories from the community.

This webinar was recorded in February 2022 as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and George, Jonathan and Phil’s bios.

Professor George Jelinek’s Bio Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits.

George’s Story:

When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through and assess the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this.

It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming MS Program, which he detailed in his book Overcoming Multiple Sclerosis. The new book in this podcast episode is a newly launched accessible overview of his findings.

George has remained free of further relapses, as have many people who follow the Overcoming MS Program.

Dr. Jonathan White’s Bio Career:

Jonathan went to University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss.

In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. He contributed to the new book in this podcast episode.

Overcoming MS and personal life:

Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since. Dr. White assists Overcoming MS as a medical advisor and event facilitator.

Dr Phil Startin’s Bio Career and Overcoming MS:

Personal life:

Selected Key Takeaways The new book gives different perspectives from the Overcoming MS community

Professor George Jelinek said: “After what seems like quite a long time of bringing this message to people, I’m hearing the message come back to me through the filter of all of these different people's lives and experiences, joys and sorrows. It's just a wonderful read for me to sit down and say that all this has been happening in our community and that people have worked out ways of adopting and maintaining this program, many of which I've really never considered given that I've got only my own particular view of the world.”

Overcoming MS supports the use of medications alongside lifestyle changes

Dr Jonathan White said: “I think sometimes the medical community thinks it’s “us or them” [with] lifestyle or medication and that could never be further from the truth. I personally have always chosen to use medication as part of my way of managing MS and I wouldn't change that. But nor would I change using lifestyle to manage my MS. Undoubtedly for many people medication has many benefits and is a huge part of your armor and protection against this disease. But why ignore the underlying things that caused the problem in the first place, you know, stress, lack of exercise, low vitamin D levels, poor diet and processed and altered fats and animal fats in your diet?”

The Overcoming MS program is relevant for both relapsing and progressive forms of MS

Dr Phil Startin said: “By following the Overcoming MS program, you absolutely can make a difference [to your MS], you can change the trajectory of that condition, and you can improve your quality of life. Through neuroplasticity, you can even recover some functions. The Overcoming MS program is just as relevant for us with a progressive form of the condition as it is for those with those newly diagnosed and with a relapsing form, possibly even more.”

Related Links: * Overcoming MS Handbook: Roadmap to Good Health * Watch the original webinar

Don't miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

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Welcome to Season 5 of Living Well with MS, where we are pleased to welcome holistic health practitioner and expert Magic Barclay as our guest!

Keep reading for the key episode takeaways and Magic's bio.

Bio: Magic Barclay is the lead practitioner and founder of ‘Wholistic Natural Health Australia’, a holistic health practice. She also is a host of the podcast “A Magical Life: Health, Wealth and Weight Loss”.

Magic’s life changed when she faced multiple life-threatening conditions and at the same time, found herself divorced and raising her two children alone. She decided to find the root cause of her health issues and that set her on a path of life-changing learning that affected her whole family.

Magic is a Master Practitioner in immune health, mould toxicity recovery and Psycho-Neuro-Endocrine-Immunology (the study of the interaction between psychological processes and the nervous and immune systems of the human body) of trauma.

She tells us that she is a “mum of two amazing humans and two gorgeous furbabies, a grower of organic food for her family and a passionate native gardener”.

Magic’s mission is to help people heal naturally, reconnect to the environment and reach their own potential. She mainly works with women aged 45-65 who feel unheard or misled by mainstream medicine and anyone who wants to bring their health back to basics.

Selected Key Takeaways: The purpose of functional medicine

Functional medicine involves looking at the systems of the body. It looks at what each system does and how it works with the other systems. We often say, "no system works alone." We particularly look at the root cause because if you don't look at that, then other issues keep arising.

Belief in yourself is a powerful part of healing

If people don't believe in themselves, they're not going to get well. We see a lot of people just given diagnosis after diagnosis, label after label, and they start believing that's who they are. Magic believes that this is a really awful way to live because you're a person, you are not the label that was given to you by your doctor. You are still a person. So, what they do in functional medicine is uncover: Who is that person? And who do [they] want to be?

Reduce stress by acknowledging the stressor isn’t forever

If you find yourself around people that increase your stress, don't be around them or decide to be around them for five or 10 minutes. Give yourself a time cap and tell yourself after 10 minutes “I'm out of this situation and I'll be okay”. If you find you are stressed by work, a doctor's appointment or driving, either take yourself out of the situation, find an alternative, or give yourself a time limit so that you know internally it's not forever. And don't sit there thinking, “I'm so stressed,” as your body hears that and guess what? It replies, "Really? This is a low level of stress, you want to be stressed? I'll raise the bar."

Related Links: * Magic’s Wholistic Natural Health * Find out more about PNEI and Dr. Gabor Maté https://drgabormate.com/ * Make natural laundry detergent from horse chestnuts/ conkers/ buckeyes https://wastelandrebel.com/make-laundry-detergent-out-of-chestnuts/ * Parkinson’s protein from gut to brain https://www.nih.gov/news-events/nih-research-matters/tracking-spread-parkinsons-proteins-gut-brain * The Blood Brain Barrier in MS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8395058/ * Th1 and Th17 response in MS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5491887/

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you also sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS. In this episode, Geoff catches up with Overcoming MS facilitator, Dr Rachael Hunter, a clinical psychologist and senior lecturer in clinical and health psychology at Swansea University. Rachael talks to Geoff about the meaning of resilience and looking after your psychological health.

Keep reading for the key episode takeaways and Rachael’s bio.

Rachael’s bio:

Dr Rachael Hunter is a clinical academic who works as a Clinical Psychologist in the NHS, and as a Senior Lecturer in Clinical and Health Psychology at Swansea University. She is an active researcher and has been involved with a number of projects relating to MS as well as other physical and mental health conditions.

Rachael has been following the Overcoming MS program since she was diagnosed with MS in 2012. She remains relapse free with recent MRI scans confirming ‘no evidence of disease activity.'

Rachael says that she feels very lucky to have found Overcoming MS during diagnosis and to have such a supportive family who share her positive outlook. Since finding Overcoming MS, Rachael has felt compelled to raise awareness of the Overcoming MS Program and lifestyle approaches to living well, through her work.

Rachael is a mum of two, slightly obsessed with the beach, and describes herself as a ‘realistic optimist.’

Selected Key Takeaways Our mental and physical health are linked “As a psychologist, my whole framework of clinical work is based on the idea that our physical health and our psychological health are intertwined. They absolutely affect each other. I knew that if I was struggling with my mental health, that was going to affect my physical health.”

The definition of resiliency

“Resiliency is the ability to accept one's experiences without avoidance. That you can continue to try and live your life and pursue your goals, despite that adversity. So what does that really mean? Well, it's basically talking about a capacity to respond positively to adverse situations.”

Self-care is different for each person

“Self-care is integral to what we need to be practicing all the time. I think making it a part of any framework is really important. I have quite a broad definition of self-care and that's going to be very individual for each person. I always encourage people to really think broadly about what self-care could be.”

Related Links: * Read Rachael’s Chapter in the Overcoming MS Handbook here * Buy a copy of the Overcoming MS Handbook, launched at the end of 2021 * Watch Rachael’s talk ‘Promoting Resilience’ here * Read the 2022 Global Resilience report here * PTSD stats: https://www.ptsduk.org/ptsd-stats/

Follow Rachael on social media:

IG @racch_hh
Twitter @drrachhunter
FB https://www.facebook.com/rachael.hunter.908

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by podcast@overcomingms.org.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS. In this episode, Geoff meets with Kathy Chester, a certified fitness trainer and podcaster with MS.

Keep reading for the key episode takeaways and Kathy’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Bio:

Kathy Chester hosts the Move it or Lose it Podcast and leads Women Who Disrupt MS, a support group facilitated through the Multiple Sclerosis Foundation (MSF). She is the owner and lead trainer of Disrupt Fitness Gym.

Fitness has always played a big role in her life. She became an aerobics and boot camp coach and went on to manage various studios. In 2015, she established Disrupt Fitness Gym: a program combining circuit and interval training to create the most efficient workout.

Kathy was diagnosed with Multiple Sclerosis more than 20 years ago. Her MS symptoms began with numb hands and feet, migraines, and cognitive issues. The DMT’s and MS treatments she has tried include Avonex, steroids, chemotherapy, Tysabri, and now, Ocrevus. Taking these medications further confirmed her belief that movement and exercise is crucial for optimal health, strength, and mobility.

Her expertise has allowed her to train people with MS all over the world. She developed a new program called DMAT (Disrupt Move and Transform). DMAT targets joints and muscles to slow down advancement of the disease. The program is based on a one-on-one or group session. Both standing and seated moves are demonstrated and trained in real-time. The results are increased strength and confidence in everyday movements which leads to more independence, and therefore, a better quality of life.

Selected Key Takeaways

Understanding exercise to improve MS symptoms

As the MS changed, and as I grew in my knowledge and more certifications, then I was able to understand what moves needed to be done to strengthen our bodies, our legs, the foot drop, keeping the MS hug away, and things like that. So I started working with the MS and the autoimmune world.

The benefits of live exercise classes – giving feedback

I also do it [exercise classes] via Zoom, where there could be seven to 10 people, and I'm showing seated moves and standing moves. I'm able to watch and say 'Hold on. Stop that. Let's do this instead.' So I can watch [and] ask, 'Is it cool enough where you are? Do you have water?' And I think that's a personal touch that I'm able to give.

Producing a podcast

I wanted to do a podcast for a long time. The gym just took so much of me. I listened to several different podcasts for years and tried to get my [own] idea of what I wanted it to be. I decided I wanted to have guests on with autoimmune diseases, a lot of them have MS. And then to get something that is inspirational, something that they do, and then have a doctor come on and really talk about the issue.

Related Links:

Try an Overcoming MS exercise video

Find out more about Kathy’s Disrupt Move and Transform exercise program

Listen to Kathy’s podcast Move It or Lose It

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Welcome to Living Well with MS coffee break #37, where we are pleased to welcome OMSer and Ambassador, Dave Jackman, as our guest!

Watch this episode on our YouTube channel here. Keep reading for Dave’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Bio: Dave Jackman is a Scot living in the historical village of Falkland in Fife with his wife, Rae and their Cavalier King Charles spaniel, Dexter (named after the serial killer!) They have three children, two of whom live locally, while one lives in California.

Dave was diagnosed with primary progressive MS (PPMS) in October 2011 and started following the Overcoming MS Program shortly afterwards. He is now retired from teaching and has led several Overcoming MS Retreat Reunions and Overcoming MS workshops while running a successful Airbnb studio with his wife.

He is also an Overcoming MS Ambassador for Scotland – Fife. Prior to diagnosis, he was a keen runner and played cricket for over 40 years. His interests now include computers, cricket, dogs, music, home exchanging and travel.

3 key things about Dave: Exercise

I have always been sporty and loved the exercise involved in playing all the various sports I have participated in. I played cricket for over 40 years and in my youth played a lot of volleyball, culminating in representing Scotland at university level. Pursuing the exercise arm of Overcoming MS for me has not been difficult.

After diagnosis, I consulted a physiotherapist who worked out a specific schedule of exercises for me and I also made use of the MS Gym online so that I was constantly exercising, particularly those bits of my body which were starting to deteriorate. These days, even though walking is becoming more tiring, I walk our dog every day and love travelling and exploring new places. Nowadays, even if I can’t go out for my exercise, I make use of an exercise bike and can still manage to ‘cycle' 5 miles a day. I feel it is really important that no matter your disability with MS, to manage whatever exercise you are capable of and pursue it regularly.

Mindfulness

Meditation and mindfulness were areas I really struggled with initially. However, I slowly got to grips with them. I joined Headspace online and have followed that for years. I feel it is really important to do your meditation. It does not have to be a long session, but it does have to be regular. Once a day suits me. I have also become much better at incorporating mindfulness into my day-to-day life.

Home Exchanging

My wife, Rae, and I have home exchanged for over 25 years. Initially, we saw it as a great, inexpensive and environmentally friendly way to explore the world with our three children. We love meeting the people involved and this has led us to do dog sitting whilst people were on holiday. In the past few years we have converted our garage into an Airbnb studio which has been very successful, so if you fancy a cheap few days break in Scotland...

Related links

If you have been on an Overcoming MS retreat and are interested in attending the May 2023 Retreat Reunion email: davejackman@sky.com
Read the progressive MS chapter of the Overcoming MS Handbook that Dave contributed to.
Watch Dave’s Story of Hope: https://overcomingms.org/resources/stories-of-hope/dave
Read Judy Graham’s book: Managing Multiple Sclerosis Naturally
Find out more about the Thermomix cooking appliance

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you sign up for our newsletter to hear our latest tips and news about living a full and happy life with MS.

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Welcome to Living Well with MS. In this episode, we are taking you back to one of our particularly popular webinars, ‘Introduction to Overcoming MS’ with Dr. Jonathan White. Whether you are new to Overcoming MS or have followed the Program for years, this episode will be a well-worthy listen as Jonathan guides you through each step and the evidence behind it.

This webinar was recorded 30 June 2021 as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here.

Keep reading for the key episode takeaways and Jonathan’s bio.

Bio:

Career:Jonathan went to University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss.

In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards.

Overcoming MS and personal life:Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since. Dr. White assists Overcoming MS as a medical advisor and event facilitator.

You can learn more about his background here.

Selected Key Takeaways The 7 steps of the Overcoming MS program

Diet: Understanding fats and why animal fat is problematic(22:58) “Saturated fats are those that are generally solid at room temperatures such as butter or the rind on a chop. They mainly come from animals when they are incorporated into the body. They are rigid. They're sticky, they're inflammatory, and they're degenerative. None of these things are something that I want as somebody with a chronic degenerative neurological condition.”

Sunlight and Vitamin D: A range of benefits for MS and other conditions(26:09) “Vitamin D has a key role in regulating the immune system and in protecting the brain. We know that there's evidence in a whole host of conditions for the benefit of vitamin D in terms of reducing depression rates, hypertension or high blood pressure, heart disease, diabetes, some cancers, and in my own field, pregnancy losses. There is substantial evidence, particularly for vitamin D in MS prevention and in reducing the severity of the disease.”

Exercise: Start low but you can push yourself to improve(32:29) “You should start low and increase slowly. It is okay to push yourself with MS. You're not going to bring on a relapse by lifting one extra rep or swimming a little bit further or walking a bit further. It's okay to go to the point of fatigue.”

Mindfulness and Meditation: Evidence they reduce stress(35:41) “Studies have shown that regular mindfulness practice increases the grey and white matter in MRI scans, it promotes neuroplasticity so that [means] rerouting of signals around damaged areas and creating new neural networks.”

Medication: Part of the Overcoming MS Program(37:16) “I think in the past, there was a perception that OMS was the slightly alternative area to pursue and, if you were going to that route, you were then against medication. That was Us vs. Them. That could not be further from the truth. It should be us and them together. We know that early medical treatment can alter the disease course in MS. But there are many issues to consider when you choose a treatment and you need to take time and have the space and opportunity to address these with your doctor.”

Prevention in family members: Avoid smoking to protect your family(39:23) “[Cigarette smoking] doubles your risk of developing MS in your lifetime. And you're four times more likely to develop progressive MS and on average, eight years earlier. And that's dose-dependent. The more you smoke, the more likely it is. Passive smoking around a child doubles their lifetime risk of MS. It’s vitally important that you keep children away from passive smoking.”

Change your life, for life: Follow the whole Overcoming MS Program(42:11) “You are not to blame for getting MS, but you are the best person to deal with it. OMS firmly believes the best way to deal with it is: to eat a plant-based whole food diet plus seafood, if you like, with daily flax seed oil, to get enough vitamin D either through sunlight or by taking 5,000 to 10,000 units a day, to exercise for 30 minutes three to five times per week, to meditate for 30 minutes daily, to work with your doctor and take medication if it's necessary and right for you and prevention for your family members. All of the elements we've talked about are effective in their own right but they work best when they’re put together.”

Related Links: The Overcoming MS Program:

Where to start: New to OMS? | Overcoming MS
The Overcoming MS Program: Multiple Sclerosis (MS) Recovery Program - UK, USA & Australia | Overcoming MS
Read the Overcoming MS books: Books by Overcoming Multiple Sclerosis | Overcoming MS
Recipes, Exercise classes, meditation sessions and more: Multiple Sclerosis Books & Resources | Overcoming MS

Other useful links:

Film: The Connection
MSGym with Trevor Wicken
MSing Link with Gretchen Hawley
Book: Atomic Habits by James Clear

Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Make sure you also sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to your next “plating” of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy Overcoming MS (OMS) lifestyle. You can submit your questions for Jack anytime by emailing podcast@overcomingms.org.

Keep on reading for the key episode takeaways. If you’re interested in more recipes from the Overcoming MS Program, take a look at the collection on our website. We have easy, intermediate and hard recipes, so there’s something for all skill levels!

Also, make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS

Bio

Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested home cook to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack operated his own catering business and cooking school for 15 years, while also finding time to write about cooking.

Jack’s current activities include operating myfreshattitude.com – a website dedicated to providing healthy vegan recipes and useful vegan cooking instruction and techniques. He also writes and distributes a weekly international newsletter - VeganWeekly – to inspire people to cook healthy vegan food. Jack has followed the Overcoming MS lifestyle since 2009. He has actively worked on providing recipes and information to the Overcoming MS website, was the contributing editor to the OMS Cookbook, and authored the ‘Eat Well’ chapter in the latest Overcoming Multiple Sclerosis Handbook.

Selected Key Takeaways

Making your own veggie broth is easy and cost effective“A lot of people say, "Oh, you know, I don't have time to make my own vegetable broth." Well, vegetable broth takes all of, maybe, 30 minutes to make as you could put it together while watching a sitcom on TV in the background. It's one of those things that you can make in a large quantity, always have on hand, [and] you can freeze it easily. And it doesn't really require a huge effort. In terms of cost: probably not that much more significant than buying (stock) cubes and powder.”

Use a large, heavy bottom pot to cook soup“[Thinking about the cooking pot], what I find really important is a heavy bottom. So stainless steel works really well. Thin bottom pots tend to develop hotspots and that will scorch ingredients on the bottom. That becomes very important when you're using things like lentils that like to sink to the bottom. If they grab onto one of those hotspots, they're going to scorch, they're going to burn and basically that will ruin the flavor of the entire soup.”

An umami broth makes a great stew base“A stew basically is going to be the same as a soup, it just has a different amount of liquid in it. But if you wanted to make it that stick to your ribs kind of consistency, you need to have a very rich broth. And it needs to be something with color. So I make what I call an ‘umami broth’ using dried mushrooms, mushroom powder, I use some soya sauce in there, and a little bit of miso in there. And it turns out very, very dark, and actually has quite a meaty flavor to it.”

Related Links:

Connect with Jack on social media https://linktr.ee/jackmcn.
Hugh Fearnley-Whittingstall's 9 Meals from Anarchy Overcoming MS compliant stock https://www.ninemealsfromanarchy.co.uk/vegetable-stock-paste/hughs-classic

Recipe links mentioned in podcast:

Umami Broth
Vegetable Broth
Brown Sauce with Mushroom Bourguignon

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donationhere.

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Welcome to Living Well with MS. We are pleased to welcome Professor George Jelinek as part of a short series, '10 minutes with George’. These special episodes with the creator of the Overcoming MS Program mark the 10th anniversary of our charity, Overcoming MS.

In this final episode, George explains his learnings after many years on the program and his hopes for the future. You can also watch it here.

Keep reading for the key episode takeaways and Professor Jelinek’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS

This is the fifth instalment of a five-part series. Listen to parts one, two, three and four.  

Bio:

Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits.

George’s Story
When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this.

It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis.

George has remained free of further relapses, as have many people who follow the OMS Program.

Selected Key Takeaways:

The Overcoming MS Program can improve your mental health, even if you don’t physically get better.
(4:25) “Some of the best things I've seen have been in people who didn't physically get better. A good example is someone who came to the program very early on when I first started running the retreats, who was using a wheelchair and had had MS for 25 years and was very disabled and was very depressed…. I saw her again, some months and then years later, and she was still using a wheelchair to get around and she still clearly was very disabled. But for me, there was this sort of radiance coming from her…. And I thought, now there's an outcome worth celebrating, even though it doesn't quite fit into some of the preconceived ideas we might have about overcoming [MS] or recovering.”

As evidence accumulates, the program evolves. Cryotherapy is one potential example.
(10:36) “There's stuff in the literature now about cryotherapy – about regular exposure to cold – and some people have already adopted that. But these things are in their infancy, really, and we aren't at the point where I think it's sensible to adopt it as a mainstream recommendation in the program. But like all evidence-based programs, as the evidence keeps accumulating, the program will keep evolving, and that's how it should be.”

The key elements in the OMS Program involve modifying the factors which cause the illness to progress.
(12:24) “There's no guarantee, but if you can modify the risks, (and there's a good science on which factors cause the illness to progress)... then you give yourself every chance of having the best possible outcome. And these are generally diet, exercise, stress, sunlight and vitamin D. They're really the key planks [of the Overcoming MS Program].”

Related Links: 

Overview of the OMS program

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS. We are pleased to welcome Professor George Jelinek as part of a short series, '10 minutes with George’. These special episodes with the creator of the Overcoming MS Program mark the 10th anniversary of our charity, Overcoming MS.

In this fourth episode, George explains how he uses and defines “overcoming” MS and “recovery”. You can also watch it here.

Keep reading for the key episode takeaways and Professor Jelinek’s bio.

This is the fourth instalment of a five-part series. Listen to parts one, two and three.

Bio:

George’s Story
When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this.

It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis.

George has remained free of further relapses, as have many people who follow the OMS Program.

Selected Key Takeaways:

“Overcoming MS” can mean stabilizing rather than deteriorating
(4:06) “My own health started to more than stabilize. And that was a surprise to me. In that I started to not only not deteriorate, but I started to feel better than I did before.”

For us as a charity, “Overcoming MS” means living a full and happy life after a diagnosis. Although there is currently no cure, depending on your starting point, the Overcoming MS program may lead to improvements in your physical and mental health, reducing the impact of your MS symptoms, slowing or preventing its progression. Some people recover function and, most importantly, you can lead a full and happy life with MS.

For George, “recovering from MS” is an ongoing process rather than an outcome
(7:10) “I'd say I'm recovering from MS. [But] it's a process, not an outcome. In my view, we're not looking for a final destination. In life, the only final destination is death. I'm not trying to get somewhere, it's the process of how I'm living every day that constitutes recovering from MS.”

For us as a charity, we look at a range of uses of the word recovery: recovering lost function, recovering mental strength and recovering quality of life. These different outcomes are possible depending on your starting point and personal situation.

The Overcoming MS program manages symptoms, it’s not a cure
(9:00) “A cure has never been part of this. It would be ridiculous to say that living a really healthy life like this cures MS. Because I know if I was to return to my former bad habits, that there'd be every chance that I'd get a flare up of some sort.”

Related Links:

OMS Blog: How to Stick with OMS
OMS Blog: Latest NEU Paper Shows Diet Quality Predicts Long-Term Quality of Life in MS
OMS: What are the next Steps?

Don’t miss out:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here

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Welcome to the third episode in our short series '10 minutes with George', with Professor George Jelinek. This series marks the 10th anniversary of the charity Overcoming MS.

In this episode, George talks about the importance of mindset, mental health and support from others with MS.

Keep reading for the key episode takeaways and Professor Jelinek’s bio. You can also watch it here.

This is the third installment of a five-part series. Listen to parts one and two.

Bio:

George’s StoryWhen George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this.

It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with a commitment to the right lifestyle changes, there is a real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis.

George has remained free of further relapses, as have many people who follow the OMS Program.

Selected Key Takeaways:

Take care of your mental health(6:04) “If you're going through… struggles, I would recommend talking to someone like a psychologist. Personally, when I first was diagnosed with MS, I had quite a number of sessions with a psychologist to help me understand what I was going through, what my emotions were about, and how that was playing out in the context of my life.”

Others with MS are a great support(6:49) “Peer support is great for people who are struggling because, let's face it, all of us struggle with things at different times in our lives. There's nothing more helpful in many ways than someone who's been on the same journey and has worked out how to deal with it.”

Health should be included in our top priorities(10:28) “I was into goal setting and things at the time that I was diagnosed. That was at the age of 45. And I looked back through a number of my goal-setting documents that I produced for myself, and I always left health blank. Now, what does that tell you? Everything else was filled in: work, leisure, finance, you name it, but health was always blank. So, it was an interesting wake-up call for me to get a serious illness.”

While Overcoming MS isn’t currently holding retreats, you can find information about other events we are holding here.

Related Links:

The OMS Mental Health Hub
Stories of Hope from other OMSers
Join an OMS Circle

Don’t miss out:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS. This is the second episode with Professor George Jelinek in our short series '10 minutes with George', which marks the 10th anniversary of the charity Overcoming MS.

Some people see the Overcoming MS Program, which Professor Jelinek created, as needing an 'all or nothing’ approach. George explains how and why some people make exceptions to following the program. You can also watch this episode here.

Keep reading for the key episode takeaways and Professor Jelinek’s bio.

Make sure you sign up for our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

You can listen to part one here.

Bio:

George’s Story:

When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this.

George has remained free of further relapses, as have many people who follow the OMS Program.

Selected Key Takeaways:

What you do most of the time matters more than an occasional slip-up

(4:50) “Your health in 20 or 30 years’ time will reflect the whole range of things you've done and your daily activities over all that time. And that's true, in general, in any illness. The occasional slip up in that context is essentially mostly irrelevant.”

Look inward if you're struggling to stay on track with the Program

(7:10) “If there's an inner struggle going on around [sticking to the program], then trying to get some help and understand what that struggle is about is useful... Is it related to not valuing oneself, not valuing one's health? [Or] because of perhaps the way we've been brought up? There are all sorts of different reasons why not placing yourself and your own health as important in your life would manifest in not doing everything that you can to try and stay well.”

The support of a partner is crucial

(9:51) “When partners came to the retreats, we would often find that their highly sceptical attitude at the beginning of the retreat was replaced with a total commitment by the end. Not only to support their partner but to do everything they could for their own health, because they would come to realise how important it is to stay well for themselves.”

While Overcoming MS isn’t currently holding retreats, we do invite partners to play an active role in supporting the PwMS in their life by adopting the Overcoming MS Program.

Related Links:

Join Circles Online, OMS’s virtual support groups
Sticking with the OMS program
Tips and information for following the Overcoming MS diet

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS. We are pleased to welcome Professor George Jelinek as part of a short series, '10 minutes with George’. These special episodes with the creator of the Overcoming MS Program mark the 10th anniversary of our charity, Overcoming MS.

In this first episode, George explains how to get started with the Overcoming MS program. You can also watch it here.

Keep reading for the key episode takeaways and Professor Jelinek’s bio.

Bio:

George’s Story

It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis.

George has remained free of further relapses, as have many people who follow the OMS Program.

Selected Key Takeaways:

The Overcoming MS Program is evidence-based

(04:03) “The OMS book is obviously a must-read. And that gives you the credibility and the science behind the whole program. This isn't something that has just occurred to me in the middle of the night or anything like that. It's taken quite a bit of work and a fair bit of time, and the right sort of background to understand the science to really put it together.”

Overcoming MS is about choice

(09:24 “The whole basis of OMS isn't to tell people what to do. We've never, never sought to give rigid guidelines for people or anything like that. This is all about providing choices for people, choices [so] that they're able to look at the range of what's on offer and choose what's most appropriate for them. For some people, that's all of the program for some people, there will be parts that don't feel appropriate for them.”

Meditation can benefit all aspects of life

(11:55) “Quite apart from the health benefits, there are enormous benefits to one's whole life in terms of the insight aspect that comes with meditation practice, [and] the improvement in one's inner landscape and emotional life that that comes along with that. You develop and learn the skill of tolerating difficult thoughts and situations.”

Related Links:

Books: Overcoming Multiple Sclerosis and The Overcoming MS Handbook The Overcoming MS program
Try a guided meditation

Don’t miss out:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Welcome to Living Well with MS Coffee Break #36, where we are pleased to welcome Dr. Jonathan White as our guest for this very special episode, our 100th podcast in the Living Well with MS series!

Keep reading for the key episode takeaways and Jonathan’s bio.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Jonathan’s bio:

Career: Jonathan went to University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss.

In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards.

Overcoming MS and personal life: Jonathan was diagnosed with RRMS in October 2015 and has been following the OMS Program ever since. Dr. White assists OMS as a medical advisor and event facilitator.

You can learn more about his background here.

Selected Key Takeaways

The new Handbook is an accessible version of the original Overcoming MS book:

(8:58) “I've always thought of the main OMS book as being a textbook, almost like a reference guide. Whereas the, Overcoming MS Handbook is a lovely light and easy [book] that you could dip in and out of. I loved reading it and I picked up lots of tips. And it was great to hear from the community itself.”

The first 10 years of the Overcoming MS charity’s message of hope has been groundbreaking:

(13:39) “I think [the OMS charity] has been paradigm shifting and groundbreaking. That message of hope, of us giving people a sense of mastery. That the traditional description of this condition - and how it affects people - doesn't have to be that way through relatively simple things that you can do for yourself. And I think that [message] came at a time where it was so needed. In fact, now it's needed more than ever.”

The Overcoming MS Community plays a very important role:

(20:41) “[The Overcoming MS Community] fills the bucket completely for me. It's been a wonderful privilege professionally, as well, to be able to spend some time with people, like myself, living with MS. And to hopefully give them a little bit of information, to clarify some things for them and to maybe steer them in the right direction. And then to see the amazing changes that they implement in their lives. It is so gratifying professionally to be able to help someone like that.”

Find the life worth enjoying… with rebellious hope:

(25:40) “Dame Deborah James, who was a phenomenally passionate cancer campaigner, … sadly passed away in June, 2020. But her very last Twitter post....just spoke to me and I thought she's put this so beautifully. This is exactly how I feel about OMS [Overcoming MS] and MS generally. So I'm going to use her quote.

She said, ‘Find the life worth enjoying, take risks, love deeply, have no regrets and always, always have rebellious hope.’ And I just love the idea of rebellious hope, because that to me is me and it's me and [Overcoming MS] OMS.”

Related Links:

Books: Overcoming Multiple Sclerosis and The Overcoming MS Handbook
Join an OMS Circle
Dame Deborah James’ You, Me and the Big C podcast

About Coffee Break:

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Dr. Jonathan White, coming to you straight from Northern Ireland.

Don’t miss out:

If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

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Bio:

Mattie is a counselor, brain coach and CEO of Cerebrations, LLC, with over 25 years of experience in social work, counseling and coaching for people with anxiety, chronic pain, neurodiversity, and other life transitions. Mattie guides people on a journey to harness the power of brain science and body awareness to master the art of thinking, and begin thriving, instead of just surviving.

Mattie has a bachelor and master's degree in social work and her varied experience in nonprofit leadership, system advocacy, program development, brain function, and counseling provide a unique perspective on resilience, creativity, and how to empower people to tap into their own inner strength, beauty, and experiences to calm their internal chaos.

Selected Key Takeaways

Mindfulness is about being present and aware of your body and emotions as much as possible throughout the day:

(7:19) “We do a mindfulness practice around breathing or visualization to calm down the brain so that you can then begin to, to hear what's happening in your brain so you can actually change the cognition.”

There are a multitude of factors that influence mental and physical health in a PwMS, some that are directly related to multiple sclerosis and others that aren’t.

(8:21) “There are all these layers of the reason why we live in chaos. And that can be lack of sleep. That can be grief from the MS. That can be just changes in our relationships because that happens too. And that's going to affect the way that we feel.”

It’s important to have a variety of strategies and tools to deal with stress and life changes.

(11:54) “Life changes anyway, I mean, but when you have autoimmune disorders, life changes drastically sometimes at the drop of a hat. You have the, like, I call it a toolbox. You have a toolbox that you go, Hey, life's got more stressful. I'm going to pop open the top. I'm going to pull out the tools that work for me. And we're just going to add in some different tools for this particular situation.”

No one is perfect and self-compassion is vital to reducing stress and embracing the unexpected.

(17:24) “Thriving to me is living in the joy of life and being present. When we have the capacity to be present, understanding when we don't have the capacity to be present, but that we actually walk through every day with a calmness that today is going to be whatever day it is.

Related Links:

OMS blog by on tips to reduce stress-related inflammation
OMS resources for managing anxiety
Check out the Art of Anxiety class online
Join the Calming the Chaos Collective, a free group experience
Dig deeper into Mattie’s thinking by reading her blog

Don’t miss out:

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Bio:

Mindy Eisenberg, MHSA, C-IAYT is the Founder and Director of Yoga Moves MS, a nonprofit with the mission of improving the quality of life for individuals with MS, Parkinson’s Disease, and other neuromuscular conditions through the provision of adaptive yoga and holistic health and wellness education. Mindy has provided yoga therapy to individuals with mobility challenges for over 17 years and thrives on building a strong, mighty community for her students, their families, and care partners. She is the author of Adaptive Yoga Moves Any Body, created for individuals with MS and neuromuscular conditions and Adaptive Yoga Cards, daily yoga moves for all ages and abilities. She is a qualified Mindfulness-Based Stress Reduction Teacher and certified Buteyko Breathing Instructor. Her experience as a health care administrator at the University of Michigan Medical Center contributes to her ability to bring the Yoga Moves philosophy of healing to the healthcare arena. She created the cutting edge annual Virtual Holistic Health and Wellness Forum for MS; presents to corporate, academic, and yoga therapy organizations; conducts adaptive yoga teacher trainings; and offers small group and private therapeutic yoga, breathing, and meditation sessions. She lives with her husband and pets Felix and Oscar, in Michigan, and loves to visit her daughter and son, Julia and Noah, in New York City.

Selected Key Takeaways

Anyone in any body can benefit from yoga

(8:14) “This is a big issue that people are fearful of yoga or they think they can't do it. It's in the forefront now, it's a mission of mine to help people understand that anyone can do it. And yes, yoga does lend itself to adaptation because the idea is that you are not forcing your body into a pose. The pose is supposed to benefit you.”

It’s more about the journey than the destination

(16:56) “Yoga is called a practice for a reason. And the practice is every day you get on your mat or you sit in your chair and you have a breath practice and that is going to change on a daily basis. It's not about getting the A or, nailing the pose... It's not a pass fail. 99% of yoga or meditation or Tai Chi is actually showing up and doing it for yourself. I feel strongly about that.”

On making peace with your body

(20:48) “The idea with yoga is it's actually making friends again. You know, some people say that they're at peace with their body when they do yoga and the idea with the adaptive yoga is you're not identified by your MS. You know, that your MS isn't you, that's not who you are.”

On using the breath as a barometer during yoga practice

(31:46) “The other measurement we use in yoga is the breath. And so you always have that barometer, if you will, where if your breath is fast and rapid and shallow. That is a really good indicator of fatigue. If the breath is non-existent meaning holding the breath, that is also an indicator of either fatigue or fear or a need to back off.”

Related Links:

OMS exercise videos (filter by “yoga”)
OMS stretches to improve spasticity
Visit Yoga Moves MS on Facebook, Instagram or YouTube

Don’t miss out:

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Bio:

Dr. Mikhail (Misha) Kogan, MD, ABIOM, RCST is a leader in the newly established field of Integrative Geriatrics. He is the chief editor of the first definitive textbook of the field entitled “Integrative Geriatric Medicine”, published by Oxford University Press as part of Andrew Weil Integrative Medicine Library series and is frequent speaker at a variety of international conferences on the topics of Integrative Medicine, Geriatrics, healthy aging, as well as medical cannabis. While Dr. Kogan’s main medical cannabis expertise is in treating older patients and palliating symptoms at end of life he also treats a wide arrange of internal medicine problems from chronic GI problems to cancers where use of medical cannabis can be very beneficial. In October 2021 Dr. Kogan, in collaboration with Dr. Joan Liebmann-Smith and Penguin Random Publishing House, published Medical Marijuana, Dr Kogan’s Evidence-Based guide to the health benefits of cannabis and CBD. Dr. Kogan currently serves as medical director of the GW Center for Integrative Medicine, associate professor of medicine in the division of Geriatric and Palliative Care, and associate director of the Geriatrics and Integrative Medicine Fellowship Programs and director of Integrative Medicine Track program at the George Washington University (GWU) School of Medicine. Dr. Kogan is also the founder and the executive director of AIM Health Institute, a 501(c)(3) non-profit organization in the Washington, D.C. metropolitan area that provides integrative medicine services to low-income and terminally ill patients regardless of their ability to pay.

Questions:

Background

You have a diverse and impressive background, including integrative medicine, serving as an Associate Professor of Medicine at George Washington University, founder of a health nonprofit, and author. So cutting to the chase, what has gotten you to the place where you’re one of the leading medical experts on cannabis?
People have all sorts of associations with cannabis, mostly around its reputation as an illicit substance. Of course now it’s being legalized for recreational use in many places around the world. Can you speak to its use for medicinal purposes? What’s the medical backstory of cannabis?
Maybe we can shift to a little rudimentary chemistry and biology to understand how cannabis works medically. Can you provide a layman’s explanation of the human endocannabinoid system, how the cannabis plant interacts with it, and the difference between CBD and THC?

Dispelling Myths

There are a number of perceptions around cannabis and its use, and I wanted to see if we could validate or dispel some of them:
- Firstly, is cannabis a gateway to harder drugs?
- Is it safe to use? Are there side effects?
- What about the argument about how effective it truly is for medical use? Can you speak to the efficacy ranges for cannabinoids?
- Is there an evidence base to suggest cannabis is effective as a medical treatment?

Cannabis and MS

If we shift the focus to MS, can cannabis be helpful?
How does cannabis impact MS spasticity?
And what about using it for pain management. Does it alleviate pain that may be associated with MS?
So are there any downsides to using cannabis as part of an MS treatment regimen? Perhaps adverse interactions with DMDs?
Which cannabinoids should someone be taking to get an anti-inflammatory effect?
How do you prescribe or recommend the use of cannabis in your own medical practice? Maybe put another way, how does someone determine if they’re a good candidate to use cannabis medically?
The organization behind this podcast, Overcoming MS, is a big advocate of healthy lifestyle choices. How does cannabis fit with healthy lifestyle choice in your view, Misha?

The Future of Cannabis

What is the current research activity around cannabis? Anything we should be aware of down the pike?
What does the future hold for using cannabinoids for disease modification?
And lastly, your book. You’ve just released a new book called Medical Marijuana. There’s a link in the show notes for more information and where to buy it. Can you tell us a bit about the project, what it’s about beyond what the title implies, what kind of impact you hope it will have?
Thanks so much for being our guest on Living Well with MS, Dr. Misha Kogan. We are thrilled to learn about the amazing work you’re doing to help people navigate the intricacies and benefits of medical marijuana. And I encourage everyone to learn more about you and your work by checking out the links and more in our show notes for this episode. Thanks again, Misha.

Links:

Kogan’sbio
Kogan’s new book,Medical Marijuana, selected as one of the summer 2022’s best science reads
Kogan is Medical Director of theGW Center for Integrative Medicine
Kogan isAssociate Professor of Medicine, George Washington University
Kogan is Founder and Executive Director,AIM Health Institute, a DC-based nonprofit delivering integrative services to underserved
Kogan’s personal website can be found here
Kogan can be found on social media here: Facebook and YouTube

Coming up next:

Join us for the 35th installment of the Living Well with MS Coffee Break series, and get to meet Ann Coulson, who has been part of the OMS community even before such a thing existed and has been following the work of Professor George Jelinek dating back to its inception. Ann is undertaking an exciting adventure – sea kayaking around the Isle of Wight – to raise awareness of and funds for OMS. You won’t want to miss this dynamic discussion!

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Medical Marijuana: Dr. Kogan's Evidence-Based Guide to the Health Benefits of Cannabis and CBD

View Details

Bio:

Questions:

Background

You have a diverse and impressive background, including integrative medicine, serving as an Associate Professor of Medicine at George Washington University, founder of a health nonprofit, and author. So cutting to the chase, what has gotten you to the place where you’re one of the leading medical experts on cannabis?
People have all sorts of associations with cannabis, mostly around its reputation as an illicit substance. Of course now it’s being legalized for recreational use in many places around the world. Can you speak to its use for medicinal purposes? What’s the medical backstory of cannabis?
Maybe we can shift to a little rudimentary chemistry and biology to understand how cannabis works medically. Can you provide a layman’s explanation of the human endocannabinoid system, how the cannabis plant interacts with it, and the difference between CBD and THC?

Dispelling Myths

There are a number of perceptions around cannabis and its use, and I wanted to see if we could validate or dispel some of them:
- Firstly, is cannabis a gateway to harder drugs?
- Is it safe to use? Are there side effects?
- What about the argument about how effective it truly is for medical use? Can you speak to the efficacy ranges for cannabinoids?
- Is there an evidence base to suggest cannabis is effective as a medical treatment?

Cannabis and MS

If we shift the focus to MS, can cannabis be helpful?
How does cannabis impact MS spasticity?
And what about using it for pain management. Does it alleviate pain that may be associated with MS?
So are there any downsides to using cannabis as part of an MS treatment regimen? Perhaps adverse interactions with DMDs?
Which cannabinoids should someone be taking to get an anti-inflammatory effect?
How do you prescribe or recommend the use of cannabis in your own medical practice? Maybe put another way, how does someone determine if they’re a good candidate to use cannabis medically?
The organization behind this podcast, Overcoming MS, is a big advocate of healthy lifestyle choices. How does cannabis fit with healthy lifestyle choice in your view, Misha?

The Future of Cannabis

What is the current research activity around cannabis? Anything we should be aware of down the pike?
What does the future hold for using cannabinoids for disease modification?
And lastly, your book. You’ve just released a new book called Medical Marijuana. There’s a link in the show notes for more information and where to buy it. Can you tell us a bit about the project, what it’s about beyond what the title implies, what kind of impact you hope it will have?
Thanks so much for being our guest on Living Well with MS, Dr. Misha Kogan. We are thrilled to learn about the amazing work you’re doing to help people navigate the intricacies and benefits of medical marijuana. And I encourage everyone to learn more about you and your work by checking out the links and more in our show notes for this episode. Thanks again, Misha.

Links:

Kogan’sbio
Kogan’s new book,Medical Marijuana, selected as one of the summer 2022’s best science reads
Kogan is Medical Director of theGW Center for Integrative Medicine
Kogan isAssociate Professor of Medicine, George Washington University
Kogan is Founder and Executive Director,AIM Health Institute, a DC-based nonprofit delivering integrative services to underserved
Kogan’s personal website can be found here
Kogan can be found on social media here: Facebook and YouTube

Coming up next:

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #34, where we are pleased to welcome Leah Tsirigotis as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. Leah has a unique perspective on the OMS community as a partner to an OMSer. Given the importance of a strong support network, Leah provides fresh insight on whole family experience of being on the OMS journey. We hope you enjoy this episode’s conversation with Leah, coming to you straight from London.

Leah’s Bio:

Leah Tsirigotis explores her and her family’s life as the partner to OMSer Alex Tsirigotis. Discussing how her family approach living day to day with MS and incorporating aspects of OMS in their lives, alongside what she would reflect on for those new to the program or diagnosis, are ways in which she is invested in the OMS experience.

Enthusiastic about living a fulfilling, informed, and happy way of life, Leah discovered new passions following her husband's diagnosis with MS 9 years ago and is now a natural living and natural health advocate, natural skincare advisor, trainee naturopath, as well as a mum to two kids and full time COO of a management consultancy in London.

Questions:

Leah, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. You’re a bit of a departure from our typical Coffee Break guest in that it’s your husband who is on the OMS program. We think it’s a vital perspective to understand what it’s like to be the partner of someone with MS, especially when they are making significant lifestyle changes that may affect their spouse and family. Can you tell us a little about your day-to-day life as a partner to someone on the OMS program?
From a spouse’s point of view, how did you deal with your husband’s initial diagnosis? I imagine it was a big pill to swallow, so can you share what your initial reactions were and how you managed?
At which point did the OMS Program enter the mix? How was that experience for you and your family in terms of the changes you’d all have to make to support your husband’s efforts at adoption?
What are some of the challenges you and your family faced at first in adopting the OMS Program, namely from your points of view as the support system to someone with MS? How did you overcome them?
When did you first start to see any kind of positive results your husband experienced in following the OMS Program, and what were these? How did this measured progress make you feel as his closest family member? Has it all been worth it?
On a related but different note, you’ve recently contributed a chapter to the newly released Overcoming MS Handbook, the latest book from Professor George Jelinek, this time acting as a co-editor rather than author. Your chapter is about prevention. Can you tell us a little about the experience of working on this project?
The subject of prevention can take up a whole episode, and will in the future, but for the moment, can you distill some key insights you’ve gleaned on preventing MS in family members?
Leah, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience as the spouse of someone with MS and being part of a family that has embraced the OMS-recommended lifestyle specifically, can you share a nugget of wisdom that would help the closest family or supporters of someone with MS ease into and better adopt the OMS program?

Three Interesting Facts About Leah (in her own words):

The beginning (diagnosis) was terrifying for me as a partner to someone with MS and with a young family on the way. This feeling lasted for several years. Time, knowledge, and perspective really helped and whilst there are daily challenges to being a partner of someone with MS, there has also been a lot of learned from the experience that serves positively in other aspects of life.
My advice for a partner or someone with MS would be to inform yourself, to understand what is happening to the body, explore the options that are available to support it positively, and always try and go with what resonates with you (your gut) when making often at times large and life altering decisions.
Take each step day by day, and be open to the sometimes-daunting prospect of un-learning and re-learning continually on your personal journey.

Leah’s Links:

Check out Leah on Instagram
Learn more about Atoms
Leah like the OMS Strava Club

Coming up on our next episode:

Is the medicinal use of cannabis “high” on your list of topics to learn more about? Then tune into the next episode of Living Well with MS, premiering July 27, 2022, and meet Dr. Mikhail Kogan, a leader in the newly established field of Integrative Geriatrics and author of Medical Marijuana, an evidence-based guide to the health benefits of cannabis and CBD.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

View Details

Bio:

Dr. Colin Bannon is a retired medical doctor (GP-General Practitioner) who was diagnosed with MS at the age of 58. He was born in London and after early years working in farming and factories, studied medicine in Sheffield, qualifying in 1985. He was a GP in Devon for over 20 years.

Colin realized that smoking, the western diet, and stress were the main reasons for the development of the chronic diseases filling appointment lists and hospital wards. As a result, he developed an interest in preventative medicine, focusing on the impact that a diet high in sugar and fat has on the health of his patients.

Since his own diagnosis he has followed the OMS Recovery Program and remains in good health, relapse-free and with scans unchanged since diagnosis. He leads a local OMS discussion group and is working with the local MS team to help promote the benefits of a healthy lifestyle to people recently diagnosed with MS. Colin was also one of the presenters at the AMEX 2017: 7 Steps to Overcoming MS Event.

Colin’s hobbies are politics, growing food, writing, and contemplating the future while having fun with his grandson.

Questions:

Welcome to the program, Colin, and thanks so much for joining us on Living Well with MS.
Before we dig into the sticky and spongy topic of gluten and MS, can you please share a little about your personal and professional backgrounds, namely your medical experience and history with MS and Overcoming MS?
Before we dig into some more specific questions, since the topic of this episode is demystifying gluten, can you help us demystify it and tell us what gluten is?
Now that we have established some of your medical and MS credentials, how did your interest in gluten and its connection to MS come about?
I know this is a bit of a reductive question, but let’s cut to the heart of the matter – is gluten bad for people with MS?
How do you handle gluten in your own diet?
What are some of the interactions gluten has with the body that may not be great if you have MS?
Is there a growing body of scientific research into gluten and MS that you can tell us more about?
How does someone with MS determine if they should avoid gluten?
Many gluten-free foods are full of other bad ingredients, like loads of sugar. Since someone following a diet like OMS recommends is already cutting many things out in the interest of improving their health, how do you find gluten-free substitutes to replace some of your favorite glutinous foods but which don’t raise other dietary red flags?
Is there a need to re-evaluate dietary recommendations like the ones OMS offers and give more due consideration to the question of gluten?
Before we sign off, any final thoughts or recommendations on the topic of gluten and MS?
Thanks so much for being our guest on Living Well with MS, Colin. Your insights on gluten and MS have been incredibly useful and enlightening. And I encourage everyone to learn more about this important topic, and Dr. Colin Bannon, by checking out the information and links in our show notes for this episode. Thanks again, Colin, and we hope you tune in next time for another all new episode of Living Well with MS, and our sister podcasts, Ask Jack and Living Well with MS Coffee Break.

Coming up next:

On the next (and 34th) edition of our Coffee Break series, meet Leah Tsirigotis, contributor to the Overcoming Multiple Sclerosis Handbook chapter on Prevention and wife of OMSer Alex Tsirigotis. Premieres July 25.

Don’t miss out:

S4E54 Transcript

Demystifying Gluten

Geoff Allix (00:01):

Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode’s show notes for more information and useful links. You can find these on our website at www.overcomingMS.org/podcast or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org. Or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. And now, let's meet our guest for this episode.

Welcome to the latest edition of the Living Well With MS podcast. This edition is on demystifying gluten with Dr. Colin Bannon. Dr. Bannon is a retired medical doctor or GP, who was diagnosed with MS at the age of 58. He was born in London and after early years working in farming and factories, he studied medicine in Sheffield, qualifying in 1985. He was a GP in Devon, England for over 20 years. Colin realized that smoking, the Western diet, and stress were the main reasons for the development of the chronic diseases filling appointment lists and hospital wards.

As a result, he developed an interest in preventative medicine, focusing on the impact that our diet, high in sugar and fat, had on the health of his patients. Since his own diagnosis, he has followed the OMS program and remains in good health, relapse free, and with scans unchanged since diagnosis. He leads the local OMS discussion group and is working with the local OMS team to help promote the benefits of a healthy lifestyle to people recently diagnosed with MS. Colin was also one of the presenters at the Amex 2017 7 Steps to Overcoming MS event. Colin's hobbies are politics, growing food, writing, and contemplating the future while having fun with his grandson.

So welcome to the program, Colin, and thanks so much for joining us on Living Well with MS.

Colin Bannon (02:22):

Hello, good to be here.

Geoff Allix (02:24):

And before we dig into the topic, and we talk about [inaudible 00:02:29] to MS. Could you share with us a bit about your personal/professional backgrounds, your medical experience, and also your history with MS and OMS?

Colin Bannon (02:41):

Oh, well, I left school rather early and started working on farms, which gave me an early interest in food and its production.

Geoff Allix (02:48):

That's fantastic. If you want to become a doctor, I think that's always the advice is leave school early.

Colin Bannon (02:54):

It was in my case, but I went into medicine at the age of 25 and worked in the NHS for 25 years, as a GP for 20 years. And then developed MS. I was diagnosed with MS at the age of 55, but of course, like so many of us, once you get the diagnosis, you realize soon as if you develop the illness there; I think I developed the illness when I was 18 after infectious mononucleosis glandular fever, and had various little symptoms through my life till it finally got to the point where with all the modern technology of scanning and so on and so forth, I was able to get to the point where I realized I had MS, which came to me as a bit of a shock as it does for us all, because up to then I've been relatively healthy. But it did, for me, explain a lot of very strange phenomena in my life, which was good. In a way, it was a relief to have the diagnosis because a lot of things became very clear.

I'm also a food grower with a bit of a farming background. I've got enough space where I live to grow my own food, and I've become acutely aware of how good food is good for us. Fresh food is just unbelievably good. And I think the combination of being a GP, appreciating the health-promoting benefits of food and having MS myself. So, we want somebody like us all who need to tighten up on our diets and make sure we do our best, puts me in a position where I find myself knowing quite a lot about this topic.

Geoff Allix (04:32):

And actually, you are very good at sharing as well because we are in the same OMS Circle. So actually you share a lot of information there on all sorts of things, like COVID and, yeah, you're very happy to share what you know, aren't you?

Colin Bannon (04:51):

Well, I always thought I'd like to write a blog, but never quite got around to it because when the pandemic came along with lockdown, I thought, "Wow, we've got, we've all got more time." So I started writing the blog about COVID and very much along the same lines, really, because the healthier you are, the better chance you have of doing well with COVID, which it seems like we were all going to come across at one point or another, or most of us anyway, and many of the same messages that applied to people with MS applies to the population at large to look after your health. So I started writing a blog and doing a bit of research every day to back it up. So that became another little facet to my obsession with food and health and the relationship between lifestyle, and how we feel and how we enjoy life.

Geoff Allix (05:41):

So we're going to be talking about gluten. And just before we get into specific questions, just on a general point, what is gluten?

Colin Bannon (05:51):

We can think of gluten as the scaffolding, which holds grains together in a way. I mean, the Latin for gluten, the place where it comes from is for glue. And it's literally the protein structure that holds wheat together. And for humanity, it's had a huge impact because it gives bread, and gives flour and thus bread, or it gives dough. I should say more specifically, this sort of elastic, gluey property. Also, you can make bread out of it, which can be preserved to a degree. And we've been doing that for 30,000 years now, and it's had a big impact on human development because it's been one of those staple foods, which can be relatively easily grown, critically important. It can be stored. So populations could get through the winter and it can be processed into bread relatively simply in what was historically most people's own kitchens. So it's had a huge impact on humanity for the better, mainly because it's a highly nutritious food, but there are as we will come to shortly some issues with it, which we all need to be aware of. It's the scaffolding in a way that holds the whole thing up.

Geoff Allix (07:03):

Yeah. And actually, the portability is one of those sorts of things. You mentioned that just think where we live, that pasta is a sort of go to staple. And, I make my own pastas, which are very OMS friendly pastas. I always found quite handy if I get [inaudible 00:07:24] because I used before the pandemic, I traveled a lot and I'd always go with several pastas because they were like a big solid full meal. And so I could then sort out where I could eat when I got to a place in the world, but I had my sort of couple of pastas. [inaudible 00:07:43], but that is... Yeah, how do you do that with that? But anyway, that's sort of more of a question for someone like Jack. How do you make something transfer if you're not gluten?

Colin Bannon (07:55):

We'll come to that.

Geoff Allix (07:56):

So straight to the sort of heart of it then is gluten bad for people with MS?

Colin Bannon (08:08):

No, generally speaking, it's not, that's the first thing to say, but people with MS are human beings like anybody else. And about two in a thousand people with MS will have a proper wheat allergy. Come out with rashes and all sorts of symptoms when they're exposed to wheat.

Geoff Allix (08:24):

So like someone with celiac or something like that?

Colin Bannon (08:27):

Well, celiacs the next thing. 1% of the population now have celiac disease.

Geoff Allix (08:32):

Right.

Colin Bannon (08:32):

And I think it's like about 1% of the population with MS will also have celiac disease, which in the UK would be about 1,300 people. Some of those would've been undiagnosed. I mean, most people with celiac have it... Severe celiac, have it diagnosed in childhood, it causes really significant symptoms, but for a lot of people, it scrambles on and it's not quite bad enough to get you to the doctor, but it interferes with life. But when you get diagnosed with MS and you try and improve your health, then unwanted gut symptoms start to become more important. So for anybody with MS who thinks they may have gluten problems, it's important to see a doctor again, there's blood tests.

There are various things that can be done to diagnose that. As I say, there's 1,300 people in the UK out there who would have a formal diagnosis of MS and celiac disease. And it's important to get on top of both of them. Underneath that, there's about one in 10 people in the country who report symptoms of intolerance to gluten. As you mentioned a moment ago, who have trouble with wheat and all its products. And there's irritable bowel syndrome with which it shares an overlap. And there's something called nonspecific gluten sensitivity, also gray areas, fairly poorly defined conditions. But the common feature of which is people who eat bread or bread products, maybe above a certain dose and then have symptoms of bloating too much, mild abdominal pain and not feeling very well. And for the one in 10 people who experience those things, it's very important to take certain measures to define your relationship with gluten.

I guess the first thing to do in those situations, unless you feel sufficiently unwell to need a doctor, in which case that's the thing to do. But if it's just one of those background grumbling issues, it's fair enough to try a gluten-free diet, which involves giving up grain cereals, basically, which can sometimes be a good thing in itself because the average Western diet of course includes breakfast cereals, which to me are often long-acting metabolic poisons. They're largely low-quality grains, lots of sugar, lots of processed chemicals. And they're pretty bad for you, anyway.

But if you give up gluten, you give up a lot of good food, but you also give up a lot of bad food. So I guess just taking a step back, the first thing to do, if you are worried about gluten sensitivity, is to get bad processed food out of your diet. And just if you're going to buy bread, buy really good stuff and see if that makes a difference. And if that doesn't make a difference, giving gluten up altogether is a bit more of a challenge, but it needs doing and then waiting for six weeks to see how you are. Now, if after six weeks you feel a lot better and you think right, I'm sensitive to gluten, I would suggest the thing to do then is to reintroduce it into your diet, not the processed stuff, but high-quality grains and high-quality bread. Just to see if your symptoms come back, because if your symptoms don't come back, you could think, well, it's probably not the gluten and it may be something else you can placebo effect from taking positive action in your life. You may have given up the low-quality stuff, which is very bad for your stomach.

Geoff Allix (12:12):

So let's say the good [inaudible 00:12:14]. So I've periodically sort of made my own sourdough and stuff because of lockdown, with time on my hands. And also there was no bread in supermarkets. So is it to the extent of making your own sourdough, or if you are in the supermarket and rather than buying the stuff that's in plastic bag, you go to the back and buy the stuff that they've sort of baked. Well, I think they sort of part bake it, don't they? In store, but there's sort of stuff that's the fancier stuff at the back of the store, that's not in a plastic bag. Is that acceptable? Or are you saying you really need to be making your own sourdough type situation?

Colin Bannon (12:56):

I think it's a halfway house. The quality in supermarkets, there's a lot of stuff wrapped up in plastic, which is highly processed. And incredibly, when you talk about supermarkets, 60% of the calories we eat in this country now come from ultra-processed foods. And many of the breads are in that category. And that they're a real issue for anybody with MS or any human being on the planet, I think. I'm lucky here, because I've got a bakery up the road, which is a small enterprise run by a family. They get their grains from an organic farm in Somerset and including spelt wheat, which they can make for me. And it has no effect on me at all. And, in fact, has a positive effect because it was very healthy food that cost three pound 50 a loaf for two kilo loaf and the two kilo loaf of white standard off-the-shelf bread costs what, 60 P or something?

So there's an issue there for people who are struggling with finances, but real locally made bread that, you know it's provenance. You make it yourself from grains that you may know where they come from, is the ideal. Anything less than that in a way is less than ideal. But again, you got to take a step back and think, well look, is it bothering you? We're all different. If you've been eating the same bread for years and you're really not having a problem, well, then you just needn't worry. You just carry on doing what you're doing. It's that 10% of people who are having trouble with bloating and tiredness who are concerned about a connection between what they're doing and their MS symptoms who need to take a step back and think, right, let's make sure I haven't got a serious problem by seeing a doctor. Let's try and exclude gluten by going first, as I said, just try only finding a source of high-quality bread and sticking with that to see if that makes a difference. And if you're still not getting symptoms for six weeks, two months, reintroduce it and see if your symptoms come back. And at that point, you'll pretty much know where you are.

Geoff Allix (14:57):

And how do you handle gluten in your own diet?

Colin Bannon (15:01):

Well, I've never really had much of a problem with gluten. So I think I'm one of the 90% who are just okay with it. But in terms of the OMS philosophy and my own philosophy to food, I like, as I said, I'm lucky to have a baker up the road who can provide me with high-quality product. I wouldn't, I don't think, buy bread on a regular basis from vast majority of supermarkets, because it's just not the quality I want and I can afford to pay three pound 50 for something which I think is about the price for high-quality product. And that's what I do. I also don't eat biscuits, buns, cakes, bagels, any of that processed food. As a little aside, my grandson's five, he just started school. He came home one day with some bagels from school or white bread bagels, which they didn't eat. It ended up coming to me because I put all the waste food into my wormery and I put these bagels there. These bagels were sitting in the middle of my wormery and the worms wouldn't eat them.

Geoff Allix (16:07):

Wow.

Colin Bannon (16:09):

They actually upset the whole ecology of my wormery which actually went to putrefaction, and it caused terrible trouble. And it turned into this horrible gloopy white stuff that honestly, bacteria, fungi, moles, mice, and worms wouldn't touch with a barge pole. Now, if those organisms aren't going to eat this stuff, nor should we.

Geoff Allix (16:31):

That's what made me realize about tea bags, actually. That tea bags are not biodegradable or I think they are now actually in the UK, but they weren't a few years back because that would go into the wormery and all the tea bits would be gone, but the tea bag remained and you're like, okay, that's not biodegradable, is it? You think it was you think it's just made of paper, but it's not.

Colin Bannon (16:54):

No, that's right. I think there's a pervasive thing going on where as a population we've gotten used to doing certain things like eating, drinking tea out or plastic tea bags. I mean, most of us didn't even know that was going on.

Geoff Allix (17:05):

Well it looks like paper, doesn't it? So [inaudible 00:17:09].

Colin Bannon (17:08):

Exactly. And then, there's a food thing where you get used to the food you're eating when you carry on eating it and you get used to feeling a certain way. And my experience as a GP, helping people improve their diet is transformative. So if you move away from bagels and buns and cakes and biscuits and confections and wheaty confectionary and move to a healthy wheat-based bread or whatever other products you want to get that are high quality, you can start feeling a lot better. And for a lot of my patients and I've seen it with people with MS, you start eating a healthy diet with good quality stuff in it, not the sort of stuff the worms won't touch. And you suddenly think, my God, I feel so much better.

And I've had patients say to me for 20 years I have felt rubbish compared to how I feel now on this diet. And it's a wonderful thing to do, and it gives us a certain power over our own lives to improve how we feel. But I guess one of the traps with gluten is I think there's about 3% of the population now who are on the gluten-free diet. The industry's worth 17 billion a year producing gluten-free foods, which are often not very high quality. And there are quite a few people out there who are not sensitive to gluten who are eating restrictive gluten-free diets, who would actually probably benefit from the nutrients available in well produced, organically farmed wheat.

Geoff Allix (18:42):

And I think that's a big thing with food production generally that you can be vegan and really unhealthy because there's loads of vegan stuff in the supermarkets now, but generally it's massively processed. And equally I went down the gluten-free aisle the other day because I've just started to try cutting down gluten slightly like you're saying there's loads of gluten-free stuff, but you look at the ingredient list, and it's like half the packet long. And you think that's for something like... a loaf of bread or something that's massively processed.

Colin Bannon (19:19):

Well, the food industry is well advised by their food technologists and their advertising agencies and they know how to get people to eat their stuff. And it's another feature of our age, which is I'm certain has something to do with the increasing prevalence of [inaudible 00:19:35] as well as other various diseases that some of us are eating the worst diets ever consumed by human beings. When you look at some of the products you experience in the free from aisle and you go to supermarkets and look around, you think, well, 50 years ago, a 100 years ago and all the time that human beings walked this earth prior to that, we never had the sort of food we're eating now. And when you look at those products, we really shouldn't...

Like the worms, we shouldn't touch them with a barge pole. And I think one of the issues with gluten is before you go to the nuances of gluten and the gluten-free diet you've got to remove the really bad stuff the highly processed sugary foods full of all sorts of preservatives and chemicals, which may be upsetting your microbiome, which of course is the focus really of where gluten has an impact on many people.

Geoff Allix (20:32):

Yeah. And so what interactions can gluten have for people with MS?

Colin Bannon (20:39):

Well, I guess in a way the same interactions it has with anybody else in that if it's low-quality wheat in low quality food, which contains gluten, then it's going to make you feel worse. If you have a high sugar product, if you have two donuts with a coating of sugar made out of white bread, I actually think an hour later, you're feeling worse, your metabolism's been upset, your blood sugar's gone up and peaked, your insulins come up to try and get it out of your blood. It’s ideal for the food industry, leaving you feeling hungry a couple hours later. So you'll have another donut. There are these traps that we all get into with poor food when it comes to gluten specifically. I'll go back to what I said earlier in that if you're having real problems with gluten, you may well have already been diagnosed celiac, but if you really get terrible bloating, loose motions, feeling tired after you've had a wheaty meal, then it's worth seeing your doctor. There are blood tests you can do to screen for celiac disease. And if they're positive, it's worth going on to more sophisticated tests to make sure that's what you've got. Because if you've got celiac disease, then you need to avoid gluten totally for life.

But again, for a lot of people, it's just you mentioned earlier on that if you have a sandwich, have a breakfast cereal in the morning and a sandwich for lunch and donut halfway through the afternoon or pizza for the evening, that is an incredible dose of wheat. And you could take a step back and think, well perhaps just have a sandwich for lunch and leave the rest, just get the balance right between what is a very nutritious food and the volume of this stuff you can just get through. And, in a way, if you're eating the wrong foods, the key to people MS is it causes inflammation. And that's exactly what we want to avoid in MS. And that's probably mediated through the microbiome.

Geoff Allix (22:40):

So if someone is trying to cut down their gluten, what's the best way of finding good gluten-free substitutes?

Colin Bannon (22:52):

Well, looking at the label for one thing to find out what its provenance is, where it's come from. And indeed, if a food has a label, I'd already be suspicious because the bread I buy up from a trusted bakery up the road comes in a paper bag. It doesn't have any labeling attached to it at all. So if you're already reading a label, you should be suspicious. Gluten-free products I'm not a big fan of, as you said earlier on, that they've got a list of ingredients, as long as your arm. I don't think my experience of them is that they're as tasty. And I don't think they're as nutritious as the real thing. So I would personally avoid gluten-free products. And if you genuinely want to get gluten out of your life, then I would get grains and cereals out of your life and concentrate on the whole range of other foods, which will provide you with the nutrition you need.

Geoff Allix (23:45):

So when you say grains, just to be sort of specific, we're talking mostly wheat. I mean, sort of rice is fine, presumably.

Colin Bannon (23:55):

Yeah. Rice is fine. Quinoa is fine. A lot of others... Yeah.

Geoff Allix (23:55):

Oats. Oat milk and things like that.

Colin Bannon (24:02):

Oats are variable. But again, you're getting into a gray area there where you've got to say, look, we're all individual. We all react in different ways. Try things. If things make you feel bad, then have a good think. If they don't make you feel bad, you're probably fine. And you can carry on with them because, especially with OMS, if you're missing dairy, so you have something like oat milk you're going to eat. So you've got to be careful at this point, not to say, right, no bread, no wheat, no rye, no oats. Because each time you get rid of one of those, you're getting rid of potentially very highly nutritious foods. So then you've got to look at the rest of your diet very, very carefully. So if you're eating a truly gluten-free diet, and you're also having processed food, you can end up in trouble.

Geoff Allix (24:56):

So is it, you sort of maybe keep a food diary and experimenting is okay? If I'm like you sort of switching to spelt or I'm still having oats but I've got rid of the packet bread.

Colin Bannon (25:11):

Yeah.

Geoff Allix (25:12):

And try seeing-

Colin Bannon (25:13):

... Do one thing at a time. If you're going to make a change, then make that change. Don't make a load of changes together because then you'll be confused as to which aspects of the changes is actually making the difference. If you don't want to see the doctor, if your symptoms aren't that bad, then completely removing gluten from your diet is quite doable and oat milk, rye, barley, beer, as you said earlier on, and all wheat products is doable for a month or six weeks. And if you feel a lot better, then it raises the issue of whether it was gluten or not, because there's a big placebo effect attached to actually positively doing something. So reintroduce it. And if all those horrible symptoms come back, then you know that you've probably got an issue with gluten that you need to deal with. And again, it may be dose related. It is amazing how much wheat we can eat. And it may just be something you need to take care of.

Geoff Allix (26:15):

So, from what you've been saying, one of the things is... And this has come up with a lot of other people. So actually the over processing of food. I mean, do we have to accept that we need to spend more time cooking? Because I think the modern diet, essentially, in the last 30, 40 years, we have got to a point where we get home, we've put something in the micro or the oven and 20 minutes, half an hour later eat a meal. And we are not really willing to accept anything beyond 20 minutes or half an hour to cook a meal. And also the other thing you mentioned about the price, we expect food to be really cheap now. And certainly in the UK and I think probably a lot of the world, partly due to situation in Ukraine and other things, prices are going up and people are saying, oh, this is ridiculous. But it's like, hang on. You could go in a supermarket and you could buy a chicken for like two pounds. And as you're saying, like a loaf of bread for 60 P and things like this, the prices were... And there's a lot of competition in that market. The price was being driven incredibly low. So is it a point we need to accept that we need to pay a bit more for food and we need to accept that we need to spend a bit longer making our meals.

Colin Bannon (27:35):

I think so. One of the big changes, I mean, the situation's been transformed in my lifetime. I remember, I think I was about 15 when the first supermarket in north London was opened. Prior to that, my mom would do the rounds every day, going to the fruiter, the veggie shop, they were separate in those days, the butcher, the baker and all the other shops you needed to get the food she needed and she'd get them every day. And my father worked, my mother looked after the home. That was the format that we've got that persisted for God knows how long. Over a period of our lifetime, everything's changed. Women are often working now. And as you say, you get home at the end of the day, you don't want to spend an hour and a half in the kitchen preparing meals the way we used to.

So fast food, convenience food is something that has crept into our lives, and now has dominates. 60% of the calories we eat come from ultra-processed food. But I'd say two things. One is yes, we do need to pay more for food in a way because farmers are struggling in this country. The average income for farmers is less than 25,000. The average age of farmers in this country is 64. So we need to reward farmers properly for what they do, which is give us urban dwellers the chance to live. We absolutely rely on farmers here and around the world and we need to make sure they get a better deal. And, of course, a high quality loaf bread costs three pound 50, a low quality loaf costs 50 P for 50% of the people in this country worry about their finances on a day-by-day basis, which to me is one of the markers of poverty.

If you spend every day anxious, worried about how the next shopping bill's going to hit you. Then you're always crimping, always saving and buying a pretty low-quality diet. And when it comes to MS, neurologists I speak to are increasingly saying that it's becoming a disease of poverty. They're seeing more and more people come to the clinics who are overweight, eating a poor diet and are struggling financially. These are wider issues than OMS can address in a way. But the reality of the world we're facing is an intrinsically unhealthy one. At some level, this has to be addressed for those of us who have a choice. I'd say, yes, we need to spend more on our food. We need to buy quality. There are ways, of course, for busy couples to do this, to have one cook a week where you cook something that can last you a week. We have freezers now, which is very good. And also maybe trying to create a format where cooking becomes something pleasurable, which is an art that is gradually being lost for many households in the country.

These are tough times. These are tough times. Money is tight, time is tight, people are stressed and there's an absolute flood of some of the worst food that humanity has ever eaten, cheaply and readily available in supermarkets, which you can usually get to within a minute or two of your front door.

Geoff Allix (30:53):

Well, do you have any final thoughts or recommendations for people thinking about gluten and MS?

Colin Bannon (31:05):

Yeah, I would say define your relationship with gluten by taking a number of steps. One, make sure you've not got a serious problem by seeing your doctor if your symptoms are severe. If you're worried about intolerance, maybe consider getting it out of your diet entirely for six weeks and then restarting, and if the symptoms recur, you know where you are, but for 90% of us, we'll be absolutely fine with gluten. As long as it comes with high-quality food, because the low-quality food that you buy, white bread, highly processed bread and bread products, biscuits, buns, cakes, and confectionary is pretty damaging to our health. Everybody suffers from that who eats poor quality food. And then you can know where you are rather like the OMS program.

Once you define where you are, find your new way in life, you can just carry on with it and won't have to worry about gluten anymore, whether you are enjoying it because it does you good or whether you've left it out of your life, because you know it upsets those hundreds of trillions of organisms in our microbiome, which depend on what we eat to give us the health we've co-evolved with them.

Geoff Allix (32:19):

With that, thank you so much for being our guest on Living Well with MS, Colin. The insights on gluten and MS have been incredibly useful, I think, and I think everyone will find a useful perspective to have a look at, and I encourage everyone to learn more about this topic and have a look at the show notes where we've got links to Dr. Bannon's pages and more information. So thank you again, and we hope you tune in next time for another new episode of Living Well with MS. And also the sister podcasts, Ask Jack for cooking related questions and Living Well with MS Coffee Break. So thanks again for joining us.

Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS family of podcasts is for private non-commercial use and exist to educate and inspire our community of listeners. We do not offer medical advice. For medical advice please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates or staff.

View Details

Welcome to your next “plating” of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. Check out the show notes below that dig deeper into this episode’s topic. You can submit your questions for Jack anytime by emailing them to podcast@overcomingms.org.

Introduction

Welcome back for another deep dive into OMS-friendly eating and cooking on Ask Jack. Our last episode was more of a “meaty” variety, discussing all things to do with meat replacements. What do meat replacements generally contain a lot of? Salt. So, it’s only quite natural that we follow up on that with…

…this episode’s topic: salt and salt replacements.

So why are we devoting a whole episode to simple seasoning? Firstly, let’s follow the science. HOLISM as well as broader research suggest that it’s healthier to reduce your sodium intake, especially if you have MS. Then, there’s the reality of our lives. Particularly when first adopting the OMS program, most people opt for the path of least resistance, which involves using more processed foods rather than cooking from scratch. When we use processed foods, we often don’t dive into the ingredients as carefully, and some of these foods contain excessive amounts of sodium. And finally, there’s the obvious – salt is probably the most common food seasoning out there, and it does play a key role in making food taste better. So it’s essential to understand the role salt plays in our food and our health, but also to explore alternatives which might be better for us.

Jack has carefully curated several questions around this topic, and we have solicited some directly from the OMS community. Thanks to Jack McNulty, we are about to get some answers. Happy to chat with you again, Jack. This topic is getting me and our audience salivating, so let’s dig right into our first question.

Questions

So Jack, the question that’s probably at the forefront of most people's minds is how much salt can we use within the OMS diet? Does too much salt affect MS?
If someone is looking to replace salt, for example perhaps they also have high blood pressure, what are some suggestions for replacing it in cooking, or using substitutions to reduce salt intake?
On that note, a member of our community, Sarah Barnett, wanted to know your thoughts on potassium chloride as a salt substitute? And what about liquid aminos? It’s a lower sodium product than soy salt yet Sarah feels it adds that dimension of umami to dishes.
Interstitial announcement: just a quick update before getting to our next question about salt. The Big Picnic is happening this July, and it’s an OMS tradition for encouraging our community to prepare delicious OMS-friendly foods to share with others as a way of raising awareness about the OMS diet. The Ask Jack podcast has already exposed you to loads of new cooking and recipe ideas, and in case you need a refresher, you can find many tasty, healthy, and OMS-friendly recipes on our website, as well as on Jack’s website, myfreshattitude.com. Hopefully these recipes have will inspire you for your OMS Big Picnic! You can get more info on the Big Picnic on our website, or please check the show notes for this episode.
Jack, there are so many salts out there. Can you explain the differences between the different types, such as sea salt, rock salt, kosher salt, fleur de sel, colored salts, and kala namak?
And what about certain health claims made about products like Himalayan salt? Are they better for you?
When selecting salt, what are the main things one should consider or look for?
What about iodine in salt? Should this always be included in the salt I purchase?

And with that, thanks for yet another fascinating episode, Jack. I look forward to your return for the next Ask Jack this Fall, which will premiere on September 28th. Till then, have a great low-salt summer!

About Jack McNulty:

Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack operated his own catering business and cooking school for 15 years, while also finding time to write about cooking. Jack’s current activities include operating myfreshattitude.com – a website dedicated to providing healthy vegan recipes and useful vegan cooking instruction and techniques, writing and distributing a weekly international newsletter - VeganWeekly – to inspire people to cook healthy vegan food. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the OMS Cookbook, and authored the Eat Well chapter in the latest Overcoming Multiple Sclerosis Handbook.

A Deeper Dive into Salty Waters:

For those who may be interested in taking a deep dive into the topic of salt, Jack recommends reading Salt – A World History by Mark Kurlansky and Salted by Mark Bitterman. Both books are available through all major book distributors.

Here are Jack’s favorite salt substitution herb and spice mixtures:

From the Sea

Combine 2 tablespoons dried dulse, 2 tablespoons dried wakame, ½ nori sheet and ½ teaspoon lovage. Blend well and keep in sealed jar for 3-6 months.

Middle Eastern

Combine 2 tablespoons ground sumac, ½ teaspoon ground fenugreek, ½ teaspoon ground ginger, ½ teaspoon ground cumin, ¼ teaspoon cayenne. Blend well and keep in sealed jar for 3-6 months.

Italian

Combine 2 tablespoons dried oregano, 1 teaspoon ground coriander seeds, 1 teaspoon ground fennel seeds, ½ teaspoon lovage, ½ teaspoon dried mushroom powder.

Jack’s Links:

For more info on the OMS Big Picnic, click here.
Be sure to check out Jack’s weekly international newsletter – VeganWeekly– written with the aim to inspire people to cook healthy vegan food.
Visit Jack’s website comfor mouth-watering healthy vegan recipes and to learn useful vegan cooking techniques.
Jack’s social media links are all here: https://linktr.ee/jackmcn.

Coming up on our next episode:

Gluten is a sticky topic in the MS community, so on the next episode of Living Well with MS, premiering July 20, we demystify it by tapping the expertise of our guest, Dr. Colin Bannon. Tune and learn more about what that loaf of bread may (or may not) be doing to you.

Don’t miss out:

S4E53c Transcript

Ask Jack #8

Geoff Allix (00:02):

Hi, I'm Geoff Allix. Host of Living Well with MS family of podcasts from Overcoming MS.

Jack McNulty (00:07):

Hey everyone, Jack McNulty here. Welcome to another new and exciting season of Ask Jack, a special Living Well with MS podcast series. I'm excited and honored to answer food and cooking related questions from you. The overcoming MS community

Geoff Allix (00:22):

To submit a question for future episodes of Ask Jack, please email us at podcast@overcomingms.org, that's podcast@overcomingms.org. Please check out this episode's show notes at www.overcomingms.org/podcast, and dig into additional information and links on what we'll cover. And now let's rev up our culinary curiosity and Ask Jack.

Geoff Allix (00:45):

Our last episode was more of a meaty variety discussing all things to do with meat replacements. What do meat replacements generally contain a lot of? Salt. So it's only quite natural that we follow up with an episode on that. This episode is salt and salt replacements. So why do we devote a whole episode to a simple seasoning? Firstly, let's follow the science. HOLISM, as well as broader research suggests that it's healthier to reduce your sodium intake, especially if you have MS. Then there's the reality of our lives, particularly when first adopting the OMS program. Most people opt for the path of least resistance, which involves using more processed foods rather than cooking from scratch.

Geoff Allix (01:23):

When we use processed foods, we often don't dive into the ingredients as carefully and some of these foods contain excessive amounts of sodium. And finally, there's the obvious: salt is probably the most common food seasoning out there. And it does play a key role in making food taste better. So it's essential to understand the role salt plays in our food and our health. But also to explore alternatives, some of which might be better for us. Jack has carefully created several questions around this topic. We've solicited some directly from the OMS community. Thanks to Jack McNulty, we are about to get some answers. So Jack, welcome to the latest episode of Ask Jack.

Jack McNulty (02:02):

Thanks, Geoff. It's great to be back for another episode, really looking forward to today's discussion.

Geoff Allix (02:07):

And so we're talking about salt and it's something that's not necessarily at the forefront of the OMS program. I think people are thinking about meat, they're thinking about fat, they're thinking about dairy. So salt is an important consideration though. So, how much salt can we use within the OMS diet, and does too much salt affect MS?

Jack McNulty (02:35):

Hmm. Yeah. Two excellent questions to get started on our discussion today with respect to salt. Salt, with respect to OMS, yeah not even just with OMS, just in general terms, it's really kind of a confusing topic I think these days. And it's interesting to me because salt has been widely used in the human diet, really for thousands of years. It's had a reputation as one of the most important elements for humans. And there's no doubt that salt, perhaps more than anything else, has contributed more to human development that really than any other element. Yet today, for some reason, salt has taken on a new role. It's sort of a villain out there in the internet space. And there's just a lot of confusing information that portrays salt in a negative manner. And so maybe we can just start with that.

Jack McNulty (03:41):

Most people require about 1500 to 2000 milligrams of sodium per day. So let's just break that down. That's about five to seven grams or less than two teaspoons per day of salt. So we're talking about generally a small amount. But because most people eat, at least the average person eats out a lot, they eat a lot of processed foods, eat a lot of bread, maybe some snacks, nuts, things like that. The average intake these days of sodium is actually about 10 to 15 times more than it should be, which is enormous. So is it really the sodium that's playing a part and should be the villain, or is it really the diet? And I suspect it's the latter, as opposed to the former. Really, if you cut back on those foods, then the intake levels will automatically go down and there's no reason then to limit sodium further unless you have some other underlying health issue issues.

Geoff Allix (05:03):

Yeah. Because you said two teaspoons, and I thought that's quite a lot. I don't think I'm putting two teaspoons of salt into my food, but it's actually not coming from me adding salt. It's coming from the processed foods, which are high in salt.

Jack McNulty (05:13):

Yeah, that's right. And you know, salt is basically in everything. And so yeah, maybe we don't necessarily salt our food so much. And in fact, I suspect that most people when they cook for themselves at home, they're actually under salting in my opinion, just from a seasoning perspective. So I don't have any great worries that people are going to just over consume salt. If they cut back on restaurant food, processed food, snacks, and bread is one of the biggest culprits of salt intake. Then it gets into a nice level. Too much salt of course could lead to other types of health issues, like cardiovascular disease, high blood pressure, cancer, kidney issues, all kinds of things. There are important reasons to keep your sodium intake low. But before you get too crazy about dropping all your sodium, I think it's important to understand that salt is a requirement or sodium is required in our diet.

Jack McNulty (06:29):

We need it to regulate and balance the fluid levels in our blood and around our cells. And it plays a key role in nerve and muscle function. So it's really important to have sodium in your diet. Plus it actually makes food taste better, but we'll go into that a little bit later. Yeah, so it's really important I think to include sodium, but just be cautious as to how much you're actually putting into your system. With respect to OMS, the latest evidence really indicates that sodium intake has no bearing whatsoever on MS. It won't cause flares, or relapses, or anything like that. That's according to the latest evidence. Of course, I'm not a doctor, I'm just a cook. So I follow it closely, but I encourage people to do their own research in that area. But according to the latest information and I do talk a lot about it. Yeah, sodium isn't a big player with respect to MS.

Geoff Allix (07:42):

But in terms of MS, we should always be wary of comorbidities. So the last thing you want to have, if you've got MS, is high blood pressure, heart disease.

Jack McNulty (07:58):

That's exactly right. All good reasons to limit sodium intake to where it should be on a daily basis. And again, that should be no problem for most people, if you're really reducing some of the major causes. Processed foods are a big contributor, also restaurant food, and bread.

Geoff Allix (08:22):

Okay. So you said that actually it does make food taste good. So what in what role does salt play in that sort of area? Because I've often heard that actually on cooking programs, they say, "Oh, this is under seasoned."

Jack McNulty (08:42):

Yeah. Don't ever cut the chef when they say that though, some chefs tend to go a little bit too far.

Geoff Allix (08:52):

But what does it bring to food?

Jack McNulty (08:55):

Yeah. Well, salt has a number of different culinary uses. Let's just back up for a second and just kind of go into what salt is. First of all, salt is just sodium chloride. It's a simple inorganic material. And it all comes originally from the oceans. These days there's about 50% coming from the ocean, and about 50% coming from rock mines. So from the rock salt, that's basically a residual salt from the rock that was once an ocean, but now is perhaps part of a mountain or something of this nature. And that's how that rock got into those particular mines. It is important to add flavor to food, but it's also important to understand that salt itself doesn't add flavor, it enhances flavor. It's really the only natural source that we have that contributes to one of our basic tastes.

Jack McNulty (10:06):

And of course that's salt. So we have salt, we have acid, we have bitter and we have sweet. Those are the four basic ones of course; umami is the fifth one that's recognized these days. But salt plays some other roles. It's not just contributing to enhancing flavor. It enhances aroma in our mouth also. So the presence of salt will enhance aroma sensations in our mouths. It balances bitter sensations, so you can imagine eating a piece of bitter lettuce or something like this. Try it at home, it's really fascinating. You eat it you go, "Oh, that's pretty bitter." You sprinkle just a tiny amount of salt on it. And you'll be amazed at how that balances and almost brings out a sweet characteristic in the lettuce.

Geoff Allix (10:59):

So the classic salt and vinegar flavor combination.

Jack McNulty (11:01):

Exactly. Just creating that balance in your mouth. That's what you're driving towards with salt. And that's why people tend when they under season, that's what a chef is going to look for. And that's why they say, "Oh, that doesn't have enough salt." Because they're looking for that balance in their mouths. If there's one of those elements that plays too prominent of a role, for instance, it's too acidic or often times it's too bitter, a little pinch of salt will bring that balance in the mouth and you'll immediately notice it.

Jack McNulty (11:38):

I'll give you an example. I was just traveling in Italy. One of the regions I visited was Tuscany, and Tuscany is renowned for baking their bread without salt, which is really fascinating. And it's quite shocking if you weren't aware of that going into the game. You eat a piece of bread and go, "Whoa, that tastes different." There's no aroma. It tastes very flat and you go, "What is that?" And it's because there's no salt in the bread. And then there's a reason for that. It's kind of an interesting history.

Jack McNulty (12:12):

It has to go back to the Roman days and salt taxes and whatnot, and then Tuscans decided not to pay any salt tax. So they started making their bread without salt. And to this day, it's still done. Interesting little side note there. But salt also plays some other roles. So it helps draw a liquid out of food through a process called osmosis. So to give an example, when I'm sauteing onions for instance, the beginning of most recipes. Just in a dry pan, I usually will add a pinch of salt to those onions as they hit the pan. And what that does is it draws the moisture out of the onions and they begin stewing in their own juices. So I don't add any water to the pan. I just allow that natural process to occur. And that seasoning goes into the onions, penetrates the cell walls, softens them quicker and drives flavor directly into the onion or whatever I happen to be cooking.

Jack McNulty (13:22):

It's a very useful ingredient or element to use in that particular process. But of course, salt also discourages the growth of bacteria. Very important when you're talking about pickling and fermenting. Which is one of the main culinary roles of salt. And so it will change flavor, think of how a cucumber gets changed into a pickle for instance. And that's just done with the cucumber in a brine solution of water and salt. And that's generally a basic pickling that will completely change the structure of the cucumber and turn it into something completely different, with a little bit of an acidic punch to it. So salt as a seasoner, you're looking at flavor enhancers, you're looking at aroma enhancers, and balancing bitter components. From the perspective of drawing out liquid, something like sweating onions, you can replace some of that salt just by using a lower heat and increasing the time element. In terms of pickling and fermentation, that's the other role for salt and of course there are alternatives to that as well.

Geoff Allix (14:54):

So what if someone is looking to reduce their salt intake in their own cooking. What are some suggestions that you'd have to replace salt in cooking? Are there salt substitutions that they can use?

Jack McNulty (15:11):

Yeah, well, let's break that down. From a flavor perspective or enhancing aroma, there are things that you can do by adding herbs and spices for instance, creating a lot more flavor that way. Of course, when you do that, recognize that herbs and spices are going to add in most cases, even more bitterness. So taking the salt out, adding that it's going to provide a little bit more bitter flavor in your food and some people need to get used to that. Acids would be another thing to add to food, to enhance flavors and aroma. Things like lemon, vinegar, tamarind, which is very nice. I use pomegranate molasses a lot and that will increase the acid amount in the food and sometimes create a situation where you don't necessarily need a more salt. It just adds a flavor punch.

Jack McNulty (16:10):

You can use brines, which will have some naturally occurring salts still in the brine. So brine from sauerkraut, or kimchi, or something like this, just a teaspoon of that functions the same as adding some salt. But your sodium content will be less. And one of my favorite ways also is just using seaweed. Things like dulse, and kelp, or even just nori sheets broken up, because that will have some natural sodium. Or introducing naturally sodium rich products such as sunflower or other ingredients that grow in sodium rich soil.

Geoff Allix (16:55):

So if you are... So we're talking about sodium, but if you're cooking with something like sunflower, or people who eat fish, there's a natural saltiness to some fish. To certainly sunflowers or vegetables that grow, there's seaweeds as you mentioned, is that not the same as adding salt to something?

Jack McNulty (17:22):

It is, but it will occur in lower concentrations.

Geoff Allix (17:25):

Okay.

Jack McNulty (17:26):

So you're not going to have the same amount as if put in a one or two teaspoons of salt into your soup or something like that. So it's going to be much more diluted.

Geoff Allix (17:37):

Okay. So it's worth saying, "Okay, I really can't eat sunflower or I can't eat mackerel or something those sort of things that might have natural salt in them."

Jack McNulty (17:48):

Yeah. I mean there are other ingredients too, capers for instance, which are either salt or vinegar cured. Those are going to give you a little bit of a salt punch as well. Things like that you can use to increase the amount of salt. And again, that's just for flavor enhancement or adding aromas and things like that.

Jack McNulty (18:10):

If you're doing something that you want to draw liquid, the only thing that you really can do there is really slowing down the process. So just use lower heat, longer cooking times. Because really what you're trying to do there is just break down the food element that you're cooking a little bit more. And that just requires a little bit of time. You want to use a lower temperature to prevent it from really burning, but you can still do that with onions for instance, you can soften them easily without adding salt to them. I do that because I like adding the flavor and it speeds the process up a little bit more.

Jack McNulty (18:46):

If you're doing something with pickling or fermentation, you have to look for alternatives. So some alternatives would be using the starter culture, something like a yogurt base or something of that nature. Or a kefir or some other kind of brine that you've successfully used. And just adding a little bit of that will stimulate the fermentation or pickling process.

Geoff Allix (19:10):

Could you, so I make sauerkraut. And so you could start with salt of that, but could I use the liquid from the previous week’s sauerkraut to start the next week’s?

Jack McNulty (19:22):

Yes you could, yeah.

Geoff Allix (19:23):

Okay.

Jack McNulty (19:25):

You might need to still... Sauerkraut I mean, this is where salt really comes in to play an important role when it has to do with bacteria and things like that. So one of the reasons why sauerkraut has a fairly high salt amount is to protect that bacteria from forming. It eliminates harmful bacteria but creates good bacteria in the food itself. And that's why it's important to always keep that underwater, not allow the air to come in and whatnot. If you're just using the brine from the last time, you have to just really ensure that just stays in a cool place and it's submerged all the time. But it may take a little bit longer because there won't be quite as much salt in there just from that, but you could do that.

Geoff Allix (20:18):

And we had a question from a member of our community, Sarah Bennett, who wanted to know your thoughts on these salt alternatives they're marketing, sort of low salt or low sodium salts. And I believe they're potassium chloride. So what are your thoughts on using those instead of traditional salt?

Jack McNulty (20:43):

Yeah, it's mostly potassium chloride, which is often used in those low salt or so-called light foods, like light soy sauce or something like that. It is basically replacing the sodium with potassium. So potassium in this case would be odorless, it's weak in its flavor, and the one drawback can leave a sort of bitter or metallic aftertaste. It's mostly used in products, like low sodium salt, when it's combined with the sodium. So it's basically just diluting the sodium that's there and reducing the amount of sodium, but still functions a little bit like salt would. But again, you're going to have that little bit of an aftertaste. For me personally, I'm not a big fan of that because I place a lot of importance on the actual flavors and things of that nature.

Geoff Allix (21:46):

And would it work to do the actual sort of process of breaking down the onion or the cabbage in sauerkraut? Does it do that?

Jack McNulty (21:58):

Yeah. So lower sodium alternatives can enhance the taste and flavor just like salt. It can also help in preserves and ferments, so you can use it in that particular environment as well. Just be aware that little flavor amount and it's often also quite fine. There are two other considerations, it's quite fine so people tend to overuse it. So it's very easy to sprinkle too much on. And then you're sort of defeating the purpose because you're trying to create that flavor enhancement. And so you put a little bit too much.

Jack McNulty (22:38):

So it's almost like the seatbelt thing, when seatbelt laws came in to affect, people wore the seatbelt. But then they felt like they can drive faster or crazier and get into more wrecks. It's a little bit like that in the sense that it gives you the safeguard, "Well I'm using low sodium." But then you use too much, and so you're defeating the purpose. And it also tends to have more preservatives or additives in lower salt solutions. So, I would prefer using something pure.

Geoff Allix (23:13):

Yes. And there's another mentioned I've never heard of called liquid aminos.

Jack McNulty (23:17):

Yeah. Liquid aminos. Well first of all, there are two kinds of liquid aminos, two major kinds. So the first is made with coconut product and it's basically just fermenting coconut sap with salt and water. And it creates something very similar to soy sauce, but with roughly 60% less sodium. So you have a product that you can use similar to soy sauce, but with far less sodium in a natural way. And just because it says coconut aminos, I know we have a big thing in the OMS world about coconut. It has nothing to do with coconut fat. And so coconut aminos are perfectly fine within the OMS lifestyle.

Jack McNulty (24:09):

The other kind of amino is generally made with soya beans and is treating the soybeans with sort of an acidic solution and salt. And the soya based aminos function the same way as a coconut amino. But rather than having less salt, it actually has higher amounts of salt than soya sauce or tamari. So if you want to use aminos, I think it's pretty important to understand which one you're using, and how you want to use that. So they're not created equally. And in this particular case, I would say that the coconut amino would probably function a little bit better than the other type when just considering sodium. Also, aminos tend not to have a lot of preservatives, which is another plus when you're looking at that.

Geoff Allix (25:08):

I'd like to just make a quick update before getting to our next question about salt. The Big Picnic is happening this July, and it's an OMS tradition for encouraging our community to prepare delicious OMS friendly foods to share with others as a way of raising awareness about the OMS diet. And the Ask Jack podcast already exposed you to loads of new cooking recipes and recipe ideas. And in case you need a refresher, you can find many tasty, healthy and OMS friendly recipes on the OMS website. As well as on Jack's website, myfreshattitude.com. Hopefully these recipes will inspire you for your OMS Big Picnic. And you can get more info on the Big Picnic on the OMS website, or please check the show notes for this episode, which will have more info.

Geoff Allix (25:53):

So back to the questions about salt though. So when I was young, there was salt. And it came in a plastic tub and that was what was available. Now, there are loads of types of salts. So there's sea salt, there's rock salt, kosher salt, fleur de sel, colored salts, kala namak, so there's lots and lots of different types of salts. So firstly is there much difference? Where I grew up actually is a big sea salt area, there is Maldon sea salt, which is sort of well-known in the area. Is there a difference between sea salt and rock salt? Are these different things or is it basically the same thing?

Jack McNulty (26:40):

Let's break it down. We just kind of do a salt 101 here. So the first thing to recognize is salt is salt, period. Meaning it's all sodium chloride, no matter the color, moisture content, crystal size, any marketing health claims that are out there, salt is salt. It's just sodium chloride. Doesn't matter if it's coming from the sea or coming from a rock mine. There is no regulation worldwide on how salt is packaged or any health claims made that may be made stating for instance, that this particular salt has some amazing health benefit. Throw all of that out the window. And what you're left with is sodium chloride, which is where it should be. But there are differences to consider, and those would be crystal size and shape. That's important in seasoning and dissolving. It's also important when reading a recipe. And most cookbooks aren't going to tell you these sorts of things, but salt changes in terms of its mass or volume, the type of salt that's being used.

Jack McNulty (28:00):

So don't trust cookbooks. When they say you need a teaspoon of salt here, but what a teaspoon of sea salt is going to be is considerably different than a teaspoon of say, table salt. And we'll go into the differences in a minute. There's also, the other considerations are, are additives. Does it have any sort of anti-caking additives added to it? I think regulations state that up to 2% of table salt, for instance, can be an additive. Some kind of chemical or element that's going to prevent the salt from clumping or caking up. Then there's the whole iodine question. Does it have iodine added to it or not? Then some salts have different flavors added to it. So those are not naturally occurring and they're basically just added flavor, rosemary salt, lemon salt, that sort of stuff.

Jack McNulty (28:57):

So the other thing you want to look at is what's left in the salt. So in some salts that are gray, for instance, they're unwashed, and they may have some organic or mineral impurities that are left in the salt intentionally. And those would be certain kinds of sea salts. So let's start there for a minute Geoff.

Jack McNulty (29:21):

Sea salt, that's the first one that I'm going to talk about. There's refined and unrefined sea salt, and that's what is the big difference. The refined sea salts are mostly going to be removing the bitter minerals that are left behind after the harvesting. And that's usually done by dissolving and adding sodium hydroxide and carbon dioxide to the brine. That's going to remove any natural magnesium and calcium that's in the salt, and then allowed to just sort of naturally evaporate. And then it becomes harvested and dried and packaged in that particular sense.

Jack McNulty (30:04):

So an unrefined salt is going to be much slower than a refined salt. It's basically just made through a progressive concentration of sea water that is just naturally evaporated. So it's moved from basically one pond to another, the concentration of salt increases as it's moved from one to another. And then as evaporation takes place, it just concentrates more until the salt is basically left at the top. So at the very, very top you'll have some natural flakes that are formed, and that's called the flower of the salt, and that's fleur de sel. And so as that's raked off or harvested before it has a chance to sink and mix in with other elements. It's a kind of a pure flake form of sea salt.

Jack McNulty (31:02):

Unwashed sea salts may have a little bit of algae, clay, magnesium, and calcium in them. Sometimes they have a gray color. That's very common in France, for instance. With French types of sea salt, that sea salt is allowed to just sort of sink to the bottom. And then as it's mixed a little bit with the clay in the bottom of the seabed, wherever it is, it takes on this particular color. And it takes on some of the attributes of that clay. So it actually may have little lumps of clay in it. And of course, we talked about the fleur de sel just now. So that's sea salt.

Jack McNulty (31:49):

Table salt is basically either processed rock or sea salt. There's no regulation. So if you come across something that just says table salt, you don't really know what it is unless it's stated on the package. And it's basically those small cubic sort of uniform crystals that you might see in any restaurant saltshaker. The really fine kind of salt, that's a table salt. It dissolves well, but as a seasoning it's not the best in the world because it doesn't evenly cover the food. It doesn't just stick on the food; it basically can go in different clumps depending on how you put it on the food. So it's a little bit tricky to season with and most...

Geoff Allix (32:37):

Because it's fine, would it work quite well for say baking? Something where it needs to be mixed in really well? Because I personally wouldn't use something like a salt grinder for making bread. Because the bits of salt are too big.

Jack McNulty (32:54):

Yeah, I tend to use a finer salt in baking recipes or something of that nature. Or dissolving in pasta water, for instance, I will go with a finer kind of salt. Whether that's technically a table salt or not is probably up for argument in terms of how you want to label it. I tend not to buy the really fine table salts because they generally have a lot of additives in them, which I'm not a big fan of in terms of anti-clumping material, and things like that.

Jack McNulty (33:39):

So kosher salt would be the next one. So kosher salt is mostly available in the United States. It's really hard to find kosher salt throughout Europe or perhaps in Australia. I'm not 100% sure, but I doubt it. It's a salt that's used during the kosher process. It has nothing really to do with being kosher at all.

Geoff Allix (34:01):

I was going to say, because I'm not Jewish, but I would've thought salt was kosher. But it's not the kosherness of the salt, it's the use of it in the...

Jack McNulty (34:12):

Exactly, so traditionally it was used by butchers that cleaned the meat of all the blood. And then they would have a fine layer of salt over the meat to enhance drawing out of more blood and liquid from whatever they're making as kosher. So that's really the traditional use and that's why it's called kosher salt. But the nice aspect about it is it’s generally a coarse salt with flaky crystals that cover the food evenly. And that's why it was favored by these butchers. But it's also one reason why it's very much favored, especially in America with chefs, because it's very easy to season with it. You can grab it easily, then you can season food just by sprinkling it on. And a lot of people like using it that particular way, that's a very popular salt. So there are no regulations, sometimes it has iodine added to it and sometimes not. Generally kosher salt has no other kind of additive in it, no anti-clumping stuff, that sort of thing.

Jack McNulty (35:28):

I think it's probably the number one salt that's used in most households in America. Although I could be wrong on that. I know growing up, I also had the same thing as you, it was always Morton salt and a little blue container that was very fine. I remember that completely.

Jack McNulty (35:48):

So rock salt would be the next one. And rock salt mostly refers to just larger chunks of salt with both culinary and non-culinary uses. It's often used to make ice cream or recipes requiring some kind of crunchy salt on top of a baked good or pretzels, something like that. And it's often sold for grinders as if putting salt in a grinder is going to create some sort of mystery benefit. All it does really is just make the salt smaller, that's it. It does nothing else other than that.

Geoff Allix (36:30):

I mean, so well you have... Well so my wife's got, she likes Himalayan rock salt, which we'll go into, there's no benefits to it. But we do get a choice of how big the grains are. So because it's in a grinder you can actually, you can have fine or coarse. So there is a benefit to that. To be fair…

Jack McNulty (36:56):

Sure. And you can hold the grinder over food like a pepper mill. You can control how much and where it goes on food and that sort of thing. It would be generally sort of a post-seasoning. I don't know if it would be really good as you're cooking to use a grinder, but that's just my own personal opinion on that.

Jack McNulty (37:19):

Pickling salt is another common salt that you, that might be out there. And it's very fine grained. It's always without iodine or any anti-caking ingredient added to it. Those tend to create cloudy brines, and that's why it's always sold without that. So it's always going to dissolve well, and it's always going to keep liquids clean. So if you come across a pickling salt, that would be what that is. And it's generally just rock salt that's really fine. Or it could be sea salt that's also very fine.

Jack McNulty (37:55):

Flaky salts, which I think you talked about Maldon earlier is the most, and that's the most famous of the flaky salt.

Geoff Allix (38:02):

So is it actually heard of internationally, isn't it? I’ve heard if it because that’s where I grew up.

Jack McNulty (38:11):

I'm sure it's available in America, it's definitely available here. I can get my hands on it pretty easily. But it's like of all flaky salts, Maldon just happens to be really famous, but it's just salt crystals with large surface area. And they're often brittle and quite crunchy. So they're excellent finishing salts. Most people don't cook with Maldon salt. They crumble a little if you will, on top of the food and it gives you that little crunchy salt hit, which some people find quite appealing, me included. Kala namak of course, most of us have heard of that. And if you're cooking vegan at all, you probably come across it.

Geoff Allix (39:00):

I would say I'd never heard of it prior to cooking. But now that I do things like a scrambled tofu, then it's essential.

Jack McNulty (39:11):

Exactly. So it's a black salt that's mined in Himalayas, but it's only mined in India. And it's the reason why it has its color, and it's sort of sulfur property is, it's after the rock salt is mined, it's cooked in a kiln. And this changes the trace elements to create sort of this sulfur compound. And that's why it has that particular lovely aroma of rotten eggs. Some people actually like that quite a bit, but it worked well towards the end of the cooking process. In a tofu scramble, as you alluded to. It doesn't hold the flavor very long in cooking. So if you start with it in the cooking process, you're going to be disappointed in the actual aroma. If you use it towards the end of the cooking process, it's much more effective. So if I'm making a tofu scramble, I would add a little bit of normal salt first and then just season at the end with it to give that sort of boost of egginess.

Jack McNulty (40:26):

So the other salt that you alluded to of course, is the Himalayan pink salt. And let's just put it out there, despite the claims there's absolutely no evidence of any health promoting aspect of Himalayan pink salt. So the reason why it's special is it's excavated by hand, no machinery involved, in mines in Pakistan. So it's only coming from Pakistan. The color comes from trace elements found in the mine. So it can range from light pink to almost a bright red. It can come in different sizes. But unfortunately, people just seem to be eager for untapped sources of health benefits. And I think it's easy to fall for the marketing claims that were made about Himalayan pink salt, and dissolving it as aroma therapy in spas, or using it in food, and things like this. It's still sodium chloride bottom line, and there's nothing immensely special about it other than it's a pretty cool color.

Geoff Allix (41:43):

Right, so it looks nice in a glass grinder you can see, looks nice on the table.

Jack McNulty (41:52):

Totally agree with that, Geoff. But is it worth the extra price? I think that's a decision that we all have to come to terms with ultimately.

Geoff Allix (42:01):

And when you get these big, huge, great big pieces of salt, which are a lovely color, and they suppose you have psychic abilities, then that's probably beyond either of our knowledge.

Jack McNulty (42:14):

I've not heard of the psychic abilities.

Geoff Allix (42:15):

Oh yeah. There’s big pieces, large and they're quite often lit and they apparently are good for, I'm not sure what chakras are.

Jack McNulty (42:26):

The other thing just to be aware of is, contrary to health benefits there's actually something detrimental found in a lot of Himalayan pink salts. They can have fairly high levels of lead as a trace element. And so that's just something to be aware of when deciding to include or not include a pink salt in your diet.

Geoff Allix (42:55):

And you wouldn't know this, it wouldn't say?

Jack McNulty (42:57):

No, right.

Geoff Allix (42:58):

No, okay.

Jack McNulty (43:01):

No. But now we're getting into sort of edgy territory because when you think about it, the majority of salt these days, or at least 50% is coming from the sea. And unfortunately most of those salts these days are going to be contaminated with microplastics. Which of course aren't going to be mentioned either, but that's just a fact of life with anything coming out the seas these days. You're going to be exposing yourselves to microplastic, which is an unfortunate byproduct of the human condition these days.

Geoff Allix (43:37):

Yeah. I was thinking of Maldon sea salt, I'd absolutely promote it because it's from where I grew up. But it is quite near to the Thames Estuary, which is the river that flows out of London. Which might have some trace elements of things in it. And it's also on the North Sea, which just has a number of major industrial areas flow into it.

Geoff Allix (44:00):

So if we could sort of wrap up, what I take from this is actually the biggest takeaway that I've got is the best thing we could do is reduce our consumption of processed food. And if we're, if someone's eating out on every meal, then they might be getting a lot of salt, I'm assuming. If we're having the occasional meal out, you can probably have an idea of what's likely to be. Sort of think, "Well okay, if I can see what the ingredients are and then they might be cooked in something salty. But there's not going to be a huge amount of salt." So basically we're looking at that processed food and bread as sort of big areas it's coming from. Not to worry too much about actually using salt in cooking. Would that be...

Jack McNulty (45:01):

Yeah, I think that's a good place to land with respect to salt and sodium intake. Sodium is not as much of a villain as most people want to make it out to be. Of course too much is going to create problems. As we talked about earlier, too much of most anything is going to eventually create problems. But too much sodium clearly is a problem within the human diet. And it's easy to cut back just by cutting back on some of the lifestyle choices that most people make. And that of course is a major element of the OMS program anyway. So if you're sticking to that, I mean not going out to eat all the time, really watching your processed foods, not having a lot of snacks that are littered with salt, then you're probably not going to have to worry too much about over salting your food when you're cooking at home.

Jack McNulty (46:06):

As long as you're buying products that are generally low in salt to begin with. And that usually means whole foods, so that's a great place to start. I think that there are some other factors to consider when you're looking at what salt to purchase. The dissolving aspect, how easily does it dissolve in liquids? Often salt is needed in soups or pasta water or something like this. And so dissolving becomes a consideration. Iodine would be another consideration. Let's face it, iodine, I'll just say my own perspective on iodine.

Jack McNulty (46:55):

So this is my view, I eat very few processed foods. I eat out rarely, I often bake my own bread. I live in Europe and I know that the soil here is iodine poor. And so if I'm not using iodine salt to some degree, I'm probably not getting enough iodine in my diet. Which is actually the fact according to some of the blood tests that I've taken over the years. And so I will use at times iodine salt just for this particular reason. And so that's a personal decision that everybody has to come to and understand what's your own situation like. But having iodine in the salt, that’s no big thing in my opinion. And that's something maybe we should encourage a little bit more.

Jack McNulty (47:55):

I think the other thing to consider is seasoning before or after, as a flavor enhancer. How am I going to use that particular salt? I'll run it down so what I have always in my kitchen is, I have a fine iodized sea or rock salt on hand that I use when I'm putting salt in pasta water or baking, or if I'm creating some kind of brine or something of that nature, that's the salt I would use. When I'm just using a primary seasoning salt, I always have on hand a fine sea salt or something like a gray sea salt. That's going to be milled a little bit finer so it spreads out rather evenly. As a finishing salt, I will always have some kind of flaky salt or fleur de sel. I usually have two or three different kinds depending on my mood. And I always have some kala namak on hand. I don't tend to have any pink salt on hand. And so that's basically my opinion as a cook. And that's what I tend to have. I usually have in my pantry have about six or seven different kinds of salts.

Geoff Allix (49:20):

Okay. I think I've learned an awful lot from that. And with that, thank you for yet another fascinating episode, Jack.

Jack McNulty (49:27):

Well, thanks Geoff. It's good, it's really excellent. I could probably talk about salt way longer than most people want to hear about it.

Geoff Allix (49:37):

And so we're looking forward to your return for the next Ask Jack episode, which is in the autumn or fall, as you would call it. And that will premiere on the 28th of September. So if there's any questions anyone would like answered, then do please get in touch. You can email podcast@overcomingms.org, and until then have a great low salt summer.

Jack McNulty (50:02):

Thanks, Geoff. And I'd just like to remind everybody that be sure to check the OMS website under podcast if you want any of the show notes, which we will put up once the podcast appears on the website.

Geoff Allix (50:15):

Okay. Thanks very much.

Geoff Allix (50:20):

Thanks for listening to this episode of Ask Jack. Please check out this episode’s show notes at www.overcomingms.org/podcast, where you'll find all sorts of useful links and bonus information. If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org.

Geoff Allix (50:39):

You can also subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode of any of our podcasts. Ask Jack is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity, and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and it's array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly eNewsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

Geoff Allix (51:34):

The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

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Welcome to Living Well with MS Coffee Break #33, where we are pleased to turn the tables and welcome our very own very own podcast host Geoff Allix as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Welcome to Living Well with MS Coffee Break, and I am NOT Geoff Allix. I’m Alex Twersky, and I am the creator and producer of the Living Well with MS podcast series. And I’ve been proud to work with Geoff Allix from day 1 as our intrepid host since the show’s launch all the way through two spinoffs – Coffee Break and Ask Jack – and now 4 seasons. So why am I the one narrating this episode and not Geoff? Well, let’s find out.

Geoff’s Bio:

Geoff Allix hails from Devon in England and was diagnosed with multiple sclerosis in 2015. Geoff's father also had MS, and sadly died at the age of 54. When he himself was diagnosed, Geoff was determined to do whatever he could to remain well. Once he was told that he "almost certainly" had MS in May 2015, he and his wife launched into action. They Googled as much as they could about the condition. Shortly before Geoff was formally diagnosed in September 2015, they came across Overcoming MS and the 7-Step Recovery Program. He has been on the program since then, and, although his walking has gotten worse, he’s certain that the Overcoming MS program is critical to maintaining his wellbeing. Geoff works as computer consultant and is a dad to two children. Geoff serves as co-ambassador to Overcoming MS’s South West Circle and hosts the Living Well with MS podcast.

Questions:

Geoff, welcome to the other side of Living Well with MS Coffee Break. OMS is celebrating its 10th anniversary this year, and our podcast will mark its 100th episode this August. So this time around, we thought having you in the hot seat would allow some of our fans old and new to get to know more about you. Since the purpose of this series is to better get to know the diverse members of our community from around the world, who better than you to fit that bill. Many of our audience knows you as the podcast host, but there’s so much more to your service to the OMS community, and we’ll get to that, but for the moment, can you tell us a little about your day-to-day life in the UK, in Devon?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
Many of our audience know you as the host of this podcast from its very inception, but you also serve the OMS community in many other ways. Let’s start by learning more about your work as an Ambassador for the OMS Circle in Devon. Tell us a little about that, how you got involved and what this work has meant to you and your local community?
Speaking of local community, you also recently represented OMS at Delamore Art, an exhibition where OMS was one of the featured charities. Can you tell us a bit about that?
You celebrated a birthday recently, and you did something a little outlandish to celebrate life but also raise money for OMS. What death-defying feat was that Geoff?
Just wanted to take a quick pause to make a couple of announcements that may be of interest to our community. The OMS Big Picnic is coming up again in July. This is a great event for members of our global community to organize their own picnics worldwide featuring OMS friendly cuisine. You can learn more about it on our website at overcomingms.org. Also speaking of food, tune into our next webinar featuring nutritionist Sam Josephs presenting on easy and OMS and family-friendly recipes and foods. It’s the perfect kick starter for your own Big Picnic. The webinar streams live on June 29, but you can catch it anytime on replay. Get more info on all of these delicious happenings on our website, overcomingms.org.
OK, back to you Geoff. Let’s shift gears a little bit and talk about what must be scratching the curiosity post in all our listeners’ minds – what’s it like to host a podcast, and for nearly 100 episodes no less? How has this journey been for you?
What’s your favorite thing about hosting the Living Well with MS podcast, apart from working with me, of course?
Did you think when you started that you’d still be going strong 4 seasons on, and nearly 100 episodes under your belt?
I am going to be the last person to ask you if you have any favorite episodes, because I am sure you love them all equally, like your kids. But are there any that stand out for your personally, or hit you close to home?
Final podcast question, and I am particularly curious about this one, but how would you like to see it evolve in its 5th season and beyond?
Apart from the podcast, Geoff, are there any other fixtures of your life, whether related to OMS or not, that would help our community get to know you better?
Geoff, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know its podcast host a little better. One last question before you go, and as you very well know, it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Three Interesting Facts About Geoff:

In May 2022, Geoff completed a tandem skydive.
Geoff’s daughter is currently filming a primetime TV show.
Geoff was a serious rock-climber and once climbed with a world champion.

Geoff’s Links:

Geoff is an active Twitter user, and you can follow him here

Coming up on our next episode:

Starting July 8, check out the next new episode of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. In this instalment, Jack gets a little salty by exploring the world’s most popular seasoning and sharing healthy ideas for salt subtitutes.

Don’t miss out:

View Details

Bio:

Shari Short is a patient advocate, a professional in healthcare communications and naturally, a standup comedian. As Senior Director of Insights and Strategy at Bionical Solutions, she has over 20 years of experience in patient education from behavior change to clinical trial recruitment. A developmental psychologist by training, Shari has held positions with the National Cancer Institute, Centers for Disease Control, Virginia Department of Health, Fox Chase Cancer Center, and various healthcare marketing firms. Shari received her M.A. in developmental psychology from Columbia University Teachers College.

Shari has been living with Multiple Sclerosis for 14 years. As a Patient Advocate, Shari has shared insights from living with Multiple Sclerosis to the New Jersey statewide advocacy committee of the National MS Society as well as written for their national magazine, Momentum. She incorporated her experience with MS into a sold-out one-woman show called “It’s My Mother’s MS, I just Have It” and a satire letter series from “The Crazy Cane Lady”. Shari has been featured on multiple podcasts. She has been performing standup comedy since her teen years (read: the 80s) and has opened for performers such as Shawn Colvin and Sandra Bernhard.

Questions:

Welcome to the program, Shari, and thanks so much for joining us on Living Well with MS.
You have a very eclectic background, from standup comedy to developmental psychology. Can you tell us a bit about how that all ties together and has helped you forge your current path focused on behavior change?
We know humor is important to you, an essential part of your personal and even professional identity. And we’ll dig into that in a moment. But first, I’d like to understand your experience with MS. Can you give us a bit of an intro to that, anything you feel comfortable sharing?
Was there a point when you developed a philosophy or even a methodology for using humor to cope with some of the challenges of MS? Can you tell our audience about that journey?
You’ve produced a lot of humorous output about MS. Some notable things to mention (incidentally links to many of these can be found in the show notes, so I encourage everyone to have a look): a one woman show called “On My Nerves”; a satirical piece for Momentum, the National MS Society magazine; presentations at the University of Pennsylvania; various podcast appearances, including this one. Do any of these stand out for you, and if so, how?
I understand that humor has personally helped you deal with scary situations, reframe your current physical abilities, and not take yourself too seriously. How transferable are these “benefits” to the broader MS community, and how would you advise people who don’t have the same organic relationship with humor that you do tap into them?
How do you overcome the discomfort some people may feel when you apply a humorous or jokey spin to a “serious” topic such as MS?
There’s a principle I understand you have called “laughing on purpose”. Can you tell us a little more about that?
So I’m getting the sense that humor can be many things as applied to MS: a coping tool, a teaching tool, or even a defense mechanism. What’s your best advice for how Joe Q. Public with MS can harness humor to its maximum positive advantage?
Thanks so much for being our guest on Living Well with MS, Shari. We are thrilled to learn about the amazing work you’re doing to help people with MS ease their burdens and get the most out of life using humor. And I encourage everyone to learn more about you and your work by checking out the links and more in our show notes for this episode. Thanks again, Shari.

Links:

Connect with Shari on LinkedIn
Read Shari’s humorous piece in Momentum Magazine, the official magazine of the National MS Society
Check out Shari’s satirical take on pharma marketing
Here’s a collection of Shari’s videos connected to the 2021 Tody Awards
Check out selections from Shari’s 2011 one-woman show, "It's My Mother's MS, I Just Have It" – clip 1 and clip 2

Coming up next:

Starting June 27, please join us for the 33rd installment of our Living Well with MS Coffee Break series. On this journey into the lives of our global OMS community, we have a special surprise for you – a mystery guest. Their location won’t be disclosed until the episode because you’d likely guess who it is it were. But we assure you that you’ll relish some of the behind-the-scenes details of this person’s life and OMS journey.

Don’t miss out:

S4E53 Transcript

Laughter is the Best Medicine

Geoff Allix (00:00):

Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org or you can reach out to me directly on Twitter, @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. And now, let's meet our guest for this episode.

Welcome to the Living Well with MS podcast. This episode is Laughter is the Best Medicine, with guest, Shari Short. Shari is a patient advocate, a professional in healthcare communications, and naturally, a stand-up comedian. As senior director of insights and strategy at Bionical Solutions, she has over 20 years of experience in patient education, from behavior change to clinical trial recruitment. A developmental psychologist by training, Shari has held positions with the National Cancer Institute, Centers for Disease Control, Virginia Department of Health, Fox Chase Cancer Center, and various healthcare marketing firms. Shari received her MA in Developmental Psychology from Columbia University Teacher's College.

Shari has been living with multiple sclerosis for 14 years. As a patient advocate, Shari has shared insights from living with multiple sclerosis to the New Jersey Statewide Advocacy Committee of the National MS Society, as well as written for their national magazine, Momentum. She incorporated her experience with MS into a sold-out one-woman show called, It's My Mother's MS, I Just Have It, and a satire letter series from The Crazy Cane Lady. Shari has been featured on multiple podcasts. She had been performing stand-up comedy since her teen years and has opened for performers such as Shawn Colvin and Sandra Bernhard. Welcome to the program, Shari, and thanks so much for joining us on Living Well with MS.

Shari Short (02:34):

Thank you for having me.

Geoff Allix (02:37):

You have a very eclectic background, from stand-up comedy to developmental psychology. Can you tell us a bit about how that all ties together and has helped you forward your current path focused on behavior change?

Shari Short (02:51):

Sure. I mean, doesn't it sound like such a natural path, from stand-up comedy to developmental psychology. It's like a board game, really, it's like a party game. I basically started out really wanting to be in the arts and especially stand-up, I preferred stand-up to acting. I sing, I act, whatever, but stand-up was my favorite. And I for some reason had the guts to start it at 14 years of age when I had braces and was in high school and was able to go into the comedy clubs and just watch, watch and learn. And the older comics there just, they adopted me and took really good care of me. I read John Belushi's book, a book about John Belushi by Woodward, at a young age, and it scared me to have to depend on my sense of humor for finances.

So I said, "Well, I want to have like a solid degree and a solid job and do stand-up." And of course, when you're a teenager, you think that all works. I was eager to at least get academic credentials behind me, so I went to film school, went to NYU, and there I minored in psychology, spent a lot of time during the summers, working with young kids and parents in theater camps, and just absolutely fell in love with... Excuse me... The way that our lives changed when we become parents. And it wasn't me, I was watching people become parents, and I was helping parents and I wasn't even a parent yet. So when I chose developmental psychology for my graduate work, I felt like that's what I'm going to go into. I want to create resources for parents.

I became concerned with... like we talked about Microsoft earlier, I was like, "Are there books for parents on how to use the computer?" I interned with Sesame Street. I was very focused on being creative within this academic psych setting. But once you go to grad school, nothing's really funny, so I stopped doing comedy. I had opened for Sandra Bernhard, I'd opened for Shawn Colvin, I'd had a wonderful time, but you got to commit. If you want to do stand-up, you have to commit and you have to want it, you have to want that life and I preferred giving lectures.

I preferred making the audience laugh that they had to be there, I had to grade them or they had to be graded, they had to show up. And I tipped my hat off to everybody I know that's successful now, that just put in those hours and put in that amount of travel to live the life of a stand-up comic, especially in the 90s, and the early 2000s, because that was way before MS for me, but something I knew I didn't have the stamina for. And I was so nervous to not get paid and have it all depend on my sense of humor, that was a big thing for me.

Geoff Allix (06:14):

We'll come back to the humor in a bit because it's obviously an essential part of your personal and professional identity. But first, because this is a Living Well with MS Podcast, we want to understand a bit about your experience with MS. Could you give us a bit of an intro, anything that you feel comfortable sharing about your MS journey?

Shari Short (06:35):

Sure. I was diagnosed in the summer of 2008. I had become a runner a year or so before that, and was training pretty intensely for a 10k, and I suddenly had vision loss and pain behind my eye. It presented as the optic neuritis, but I didn't know that. For me it was, "Oh, there's pain, there's my eye, there's my head. Clearly it's a brain tumor." And I panicked and went to the urgent care center and they sent me to the ER, and I got an emergency eye doctor appointment the following morning. And the eye doctor just said, "Oh, this is really classic optic neuritis." And I was like, "Great, give me some eye drops." I didn't know what that meant, and he just kept sitting there and I'm like, "Oh, you have more to tell me, don't you?"

He got me into a pretty quick appointment with a neurologist. And I don't have a slow, drawn-out diagnosis story, like so many. They had a neuroradiologist at my MRI, they saw lesions, I was diagnosed really quickly, all based on that one event with the optic neuritis.

Geoff Allix (07:53):

I think there is a difference in different health care systems around the world, it does seem to me the Americans I've spoken to, do get diagnosed typically quite quickly, whereas in the UK we often get diagnosed quite slowly. But on the flip side, we get lots of free medication.

Shari Short (08:10):

Yes, it's quite the flip side.

Geoff Allix (08:13):

Definitely tradeoffs between the different-

Shari Short (08:13):

It's quite the flip side.

Geoff Allix (08:16):

If someone were to come up with the best of both worlds, it'd be pretty good. But yeah. Yeah, I would never say anything bad about our system, our system is fantastic.

Shari Short (08:24):

I'm a fan of your system.

Geoff Allix (08:25):

But yeah, there are downsides to how quickly things happen occasionally, but anyway, we can live with that.

Shari Short (08:30):

Yeah [inaudible 00:08:33].

Geoff Allix (08:33):

Was there a point when you developed a philosophy or methodology even of using humor to cope with some of the challenges that came up because of MS?

Shari Short (08:45):

It was pretty organic, I think, for me to be using my humor to cope. And I just didn't realize how naturally it would be until I was actually in a situation where I had to really tap into my coping skills. At my very first MRI where they diagnosed me, and the neuroradiologist is literally showing me my scan so I'm seeing my skull, the first thing out of my mouth, Geoff, was, "Do I look fat?" Right? It's like, "What?" Like, "Where'd that come from?" Like okay, I'm nervous and I'm processing, and clearly I'm going to try to lighten the mood. And to just see myself consistently doing that, when I got my first handicap tag and I was very sad about it, I remembered I had a dress the same color and I'm like, "I can finally accessorize."

So things were just coming to me in a way to get me off of the morbid train, to get me off of the "Okay, I could really [inaudible 00:09:53] because of this particular situation, but I'm going to find the humor in it." And the more I did that, the more my friends would say to me, "You've got a collection of stuff here. You've got stories, you've got strangers who've said ridiculous things to you, you've got just funny conversations, you've had funny interactions." People would see me, and I didn't mention this before, but eventually after the optic neuritis, eventually I lost feeling on my left side and now I walk with a cane and two leg braces. And I've had people just approach me, like I'm some sort of former athlete and then they'd be like, "Oh, was it soccer?" They just made up sports and they're strangers, I started telling people it was a Quidditch injury.

Geoff Allix (08:45):

Well Quidditch is very dangerous. I mean, the altitude and...

Shari Short (10:48):

Well, yeah, this is my little PSA. Yeah, so Quidditch causes MS, so yeah. I had a lot of time to not only see how I was using my humor to cope, but also to just see humor in situations. I was watching it unfold and gave myself the project of putting together a one woman show. And in doing so, in writing and in taking every Sunday to just sit and write and write, it was really, it was a deep dive into my own perspective. And from there I did the show, but I also then put together presentations and different types of creative outlets and tools for coping, that could hopefully help other people. Because this is not a mindset that just comes easily to a lot of people.

Geoff Allix (11:39):

You've produced a lot of content, which you've touched on there, and it is mentioned in the show notes, so do have a look, there's links to a lot of that content. Some of the things are shows, like On My Nerves, as well as a satirical piece for Momentum, the National MS Society magazine in the States. Presentations at the University of Pennsylvania, various podcast appearances, including this one. Could you tell us if there's any of those experiences that stand out for you?

Shari Short (12:11):

The one-woman show was phenomenal, and it was called On My Nerves, but the working title for me was, It's My Mother's MS, I Just Have It, because I had so many stories about how mom was dealing with my diagnosis or dealing with my disease, as opposed to me. And then that dovetailed into how everybody else was dealing with my situation, and the stories that I had on that. To have so many people come out and see that, and then be asked, "Do you want to do this for fringe festivals and stuff like that?" And to have to say, "Actually, no, I can't, that took all the energy I have." It was amazing, I'm glad I had it taped, I'm glad I have my binder. I could do it again, but I couldn't do it on a show basis.

To have a night at the theater where 140 people came out and it was sold out, was a really wonderful way to honor how I've used the humor. And also I got just emails and responses from people with other chronic illnesses, and a lot of people with more silent, hidden chronic illness that were like, "Thank you for that, because you just touched on stuff that no one's talking about, and you did it in a way that was safe." And I just realized that the humor can help people and it's not just helping me. Yeah, and then just the Crazy Cane Lady letter series that I started a couple of years ago was just a little creative advocacy project for me, where I would just write letters, fake letters, very real feelings, but fake letters to different entities, like hotels or restaurants, or back to school night, or Broadway theaters, about how they could be more accommodating to people like me.

I definitely honed in on the cane part of my existence because I see that there are tremendous accommodations, and we could still improve for people in wheelchairs, but the cane, it gets a little middle child treatment sometimes. And there's a ramp that it'll take me a year to get up the ramp on the cane when I could just go up the steps and then be there. So I just feel like there's a lot to learn and people have a lot to learn in terms of event planning and in terms of accommodating people with canes. I did this series of letters during MS Week here in the States, it was in March a couple of years ago. And I made those public, and that took off really nicely. People responded really well to that, and I need to write more of them.

I was going to do it again the following year, but the following year was COVID and I just felt like we all had bigger fish to fry than if I can find a bench near a movie theater, right? So I didn't continue with that. I did a video series, like an Oscars version of just thanking different entities within the MS community that have helped me cope. I feel like if I can't perform it or if I can't write it and put it out there in a satirical way, I'm not processing. I don't do the serious stuff and process; it has to be creative for me to feel like it's healing.

Geoff Allix (15:37):

You've mentioned that humor's helped you deal with situations you've had and help with your physical abilities and not take yourself too seriously, so how transferable are those benefits to the broader MS community? And how would you advise people to try to tap into that relationship you have with humor?

Shari Short (16:03):

Yeah, no, that's a great question. I think that it comes down to the lens that you're seeing life through and the lens that you're seeing your mobility issues through, or whatever it is that MS has affected for you. And the lens I used to see my slow gait and my balance issues, I used to just... Well, I went from being a runner to the negative and it was, "Oh, great. This is what I get, and this isn't fair." And all of those very, very normal feelings, to, "All right, I'm going to rock a cane." Or "All right, with these assistant orthotic devices, they make me look like a Jedi." Or not, they made me look like a storm trooper actually, because they were white.

I also, I have to say I had a small child during this time, so I really felt the need to be creative about what was happening to mommy, because he saw me go from a runner to, I can't walk well, and that kind of pushed me along. There might be something for other people, when they consider, "Well, am I looking through it in the glass half full lens, or am I looking through it in the glass half empty? And what lens am I looking at it through? And are there things that I think are funny that, if I tell people I think they're funny, they're going to judge me?" And I'm here to say, embrace all of it. It's your lens, you're seeing it through. I did a lot of acceptance of dark humor. I did a lot of acceptance of the fact that humor is a language and some people will be put off if you're joking about your condition. And some people will feel like, "Oh, okay, good [inaudible 00:17:53]."

Geoff Allix (17:53):

How do you deal with that discomfort if people are not comfortable with you talking in a humorous way about something as serious as MS?

Shari Short (18:03):

Sure. Well, it's always know your audience, right? If I'm talking to other people who have MS, to the best of my ability I gauge where they are, like that talk I gave at Penn here in the States, they knew they were logging on to see a comedian, they knew what they were getting, so I wasn't too scared to read the Crazy Cane Lady letters or whatever. But I mean, to this day... look, last week I dealt with COVID and I knew I had COVID not because of a cold or a cough, but because I collapsed, and my husband had to pick me up off the floor. It triggered something in the MS and I'm like, "Oh, I've got a virus that my body wants me to know about."

And I could tell people and I get the "Oh." You know, I get the face. And I'm like, "Yeah, but I didn't hurt myself." Or "Yeah, my husband was right there." Or "My COVID's more fun than your COVID." I feel the need to keep going with the story instead of letting it halt and let them know I'm okay. And not everybody can do that, and I get that. And that's why, when I do workshops or anything like that, I get personal and talk about, "Okay, what's in your toolbox? What can you grab onto at that moment that is going to help you get either through telling the story or through what you're doing?" Almost in a cognitive behavioral way, "What's a great image you have in your head to just move you through the situation?"

And that's all just been because that's worked for me, and I know from research that humor is healing and laughing is really good for the body. There have definitely been situations in my life where the instinct is to cry, but I know it I've always felt better if I set the situation up so I could laugh at it.

Geoff Allix (20:10):

You've got a principle, I believe, called laughing on purpose, which you've almost touched on there, I think. But could you tell us a bit of more about that?

Shari Short (20:18):

Laughing on purpose?

Geoff Allix (20:19):

Yes.

Shari Short (20:22):

Laughing on purpose, I mean, when I hear that phrase, I mean, I feel like it's making a conscious choice to keep your sense of humor about you when things are challenging. And that looking at things with humor is not a weakness, it's like, if I don't laugh, I'll cry, that phrase that's out there. It's like if you laugh, it's actually going to help the situation a little bit. And it's for you, it's personal for you. It's not like, "Oh, somebody else is suffering, so laugh at them." I'm only talking about when one is dealing with one's own stuff. That would be horrible advice to give to anybody to just laugh at other people's challenges.

Geoff Allix (21:04):

I just think all the best humor is when it's the comedian laughing at themselves, I think that's the funniest humor, isn't it?

Shari Short (21:10):

Of course. Yeah, and I felt like sometimes I had to be jostled into it, I had to be jostled back. And I had this wonderful story in the show whereby I got that handicap tag and I was sad about it. And my boss at the time was like, "Well, can I borrow it? I have Springsteen tickets, and I would love to use your handicap tag." Here I was feeling really bad for myself, and then people were like, "You've got the golden ticket." I have this motto or whatever, or this creed or this way of looking at things, like if I don't try to find the humor in this, then I haven't really processed it, like I mentioned before. And it's not a pressure, it's just how can I help myself?

Occasionally they'll be like, "Oh no, no, no, it's not working yet. It's not working yet." And in my toolbox, I have things that make me laugh. I have old Blackadder episodes, I have the best of Bits of Fry and Laurie, I have comedians like David Mitchell and things on the BBC that make me laugh, or American comedians like Kathleen Madigan. And I just go there, I'm like, "They're going to make me laugh and it's going to reset me." The things that are dark, the things that I've had to deal with with MS, the intimate, discreet ways in which the central nervous system wreaks havoc, MS wreaks havoc on it, I don't want to share with everybody, but I've become a little bit more like, "I've got to advocate for me or no one else will."

So if we're all going into a restaurant, I'm like, "Excuse me, but the seat near the bathroom. Yeah, that would be me. That is mine." Right? Yeah. And it's just like, I'm 51 years old, people might think, "Oh, oh, women do that." No, no, no, it is totally because of the MS. But I've just grown a little bit more comfortable with the uncomfortable because I communicate with my humor. And when you have MS, I mean, everybody's got it differently, but there's uncomfortable things about it.

Geoff Allix (23:33):

Sense of humor can apply to many things in MS. It can be coping tool, teaching tool, defense mechanism, so just for general member of the public who's got MS, how can they harness humor to make a positive benefit to themselves?

Shari Short (23:55):

I think, first of all, you have to ask how you're processing any aspect of where you are in your patient journey, is the term that's used most often. How are you processing? Are you talking about it a lot? Are you thinking about it a lot? Are you down on yourself because of it? Or are you trying to give yourself pep talks? Are you worried about the future? Where are you with it? And then ask yourself in that processing, "Okay, what kind of lens should I look at this through so it's going to help me move forward?"

The toolbox is something I come back to a lot. What makes you laugh, as you, your own person with MS, what makes you laugh is not what makes me laugh, is not what makes everybody else laugh, it's you. So write it down, actually acknowledge your sense of humor. What makes you laugh? And start to collect those things, whether it's books or whether it's links on the internet, whether it's the cat video or the guy who says, "I'm not a cat," to the lawyer, you know those things that went viral last year. There are things that can immediately make you laugh so just be more aware of them because they're tools for you to reset. And I use humor to communicate, not everybody does. You may find in your dealing with MS, that you've got two friends that will get your dark humor, that will get your jokes, or will support you on that, then they're part of your toolbox too.

I've found that I've had, like we talked about earlier, there's people that get uncomfortable or they make faces and I don't stop too long in their party. I just go, "Okay, yeah, yeah, no, I know it sucks." I can't take care of anybody else but me, so I think that's really important, is to just look where you are, what lens are you looking at it through? Where can you find, is there humor in this situation? Do you want to write about it? Do you want to tell a good close friend about it? Do you want to tell your doctor about it? But collect those things, because at other times it's going to make you laugh when no one else knows what you're thinking, and it's going to be part of your own collection of stories that you can go back to and say, "This is how I dealt. This is how I helped myself." Because to find humor in situations, it's not self-defeating, it's empowering.

Geoff Allix (26:26):

With that, I'd like to thank you so much for being our guest on Living Well with MS. We're thrilled to learn about the amazing work you've been doing to help people with MS, to ease their burdens and get the most out of life using humor. And I would absolutely encourage everyone to learn more about you and your work by checking out the links in the show notes, they're available on every platform. Have a look at the show notes of the episode. And thank you much for joining us again, Shari.

Shari Short (26:52):

Thank you so much for having me, this was great.

Geoff Allix (27:01):

Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode.

Living well with MS is kindly supported by a grant from The Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

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Welcome to Living Well with MS Coffee Break #32, where we are pleased to welcome Regina Beach as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. Regina is a very special guest for many reasons, including being an American living in the UK, and being an OMSer who works for the charity as its Trusts and Community Fundraising Manager. We hope you enjoy this episode’s conversation with Regina, coming to you straight from the UK.

Regina’s Bio:

Regina Beach is an American living in the Welsh Valleys with her British husband. She was diagnosed with RRMS in April 2021 and adopted the Overcoming MS program shortly thereafter. She is a yoga teacher and writer who regularly leads workshops and publishes poetry and essays. She enjoys cooking and is writing an oil-free vegan cookbook with her husband. She also works part time as the Trusts and Community Fundraising Manager for Overcoming MS. Prior to diagnosis she was an avid long-distance cycler. Her goal is to feel strong enough and balanced enough to get back in the saddle.

Questions:

Regina, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
I understand that you’re rated as having significant disability on the EDSS scale. Has the OMS Program helped alleviate this, or had no effect?
What are your thoughts on people with MS choosing other types of diets or lifestyle protocols that are not OMS?
Let’s shift gears a little bit and talk about your professional life. You used to be a schoolteacher in the US, but now you live in the UK with your British husband, and you actually work part-time for OMS as its Trusts and Community Fundraising Manager. How did that transition come about?
OMS is celebrating its 10th birthday this year, and there are some special events in the wings. I understand you’re involved in some of these, such as OMS Birthday Trivia in June, and the Big Picnic in July. Can you tell us a little about what to expect?
Since you work in fundraising, what advice would you give to people in our community who want to get involved in this domain to help the charity?
My next question straddles the personal and professional realm: you’re a devout yoga and meditation practitioner, and you also teach it. Can you tell us how that’s helped you, and share some tips on how others can get into the groove of a daily mindfulness practice?
Regina, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Three Interesting Facts About Regina (in her own words):

I’m a yoga teacher and have changed my practice to be gentler and exploratory. I used to teach hot 26+2 (Bikram style).
I used to be a public-school teacher in Chicago where I taught secondary art and design.
I have significant disability, with my neurologist most recently rating my EDSS at 6.5. I have incomplete remission, so my symptoms are always with me.

Regina’s Links:

Check out Regina on Instagram, all about her adventures with whole food plant-based eating.
Read Regina’s newsletter, all about creativity through movement, art, and whole food plant-based cooking.
Have a peek at Regina’s website.

Coming up on our next episode:

On the next episode of Living Well with MS, premiering June 15, 2022, meet Shari Short – MS patient advocate, professional in healthcare communications, and naturally, a standup comedian – and learn from her experience with MS how laughter can be a powerful medicine in itself.

Don’t miss out:

S4E52b Transcript

Coffee Break #32 with Regina Beach

Geoff Allix (00:00):

Welcome to Living Well With MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading Multiple Sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix.

Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys, and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people.

You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform, so you never miss an episode. So, get your favorite beverage ready, and let's meet today's guest on Living Well with MS Coffee Break.

Welcome to Living Well with MS Coffee Break #32, where we are pleased to welcome Regina Beach as our guest. Regina is an American living in the Welsh Valleys with her British husband. She was diagnosed with Relapse-Remitting MS in April 2021 and adopted the Overcoming MS program shortly thereafter. She's a yoga teacher and writer who regularly leads workshops and publishes poetry and essays. She enjoys cooking and is writing an oil-free vegan cookbook with her husband. She also works part-time as the Trusts and Community Fundraising Manager for Overcoming MS. Prior to diagnosis, she was an avid long-distance cycler. Her goal is to feel strong enough and balanced enough to get back in the saddle.

Regina, welcome to Living Well with MS Coffee Break. We're very glad to have you on our program. So the purpose of this series is to get a better understanding of the members of our community from around the world, and today you are in the hot seat. So, could you tell us a bit about your day-to-day life?

Regina Beach (02:12):

Sure. Thanks, Geoff, for having me. I am American, but I do live in the UK. So, my day-to-day life takes place in South Wales where I am a writer, a yoga teacher, and I also work part-time for Overcoming MS as the Trusts and Community Fundraising Manager, which means I help people who want to do a charity bike ride, or a race, or if they want to sell something, or raise funds for OMS. I help in whatever way, sending out swag, helping promote and advertise, and working with some really cool OMSers doing amazing things.

In terms of my day-to-day, I was diagnosed with Relapsing-Remitting MS in April of 2021, so not that long ago, and so I am still in the middle of figuring out what works best for me and how to fully embrace the OMS lifestyle. I jumped in right away about a month after diagnosis, I found the website, devoured it, and soon after got the book, read it, joined the Facebook group. I really feel like this is the pathway back to health, or to living as well as I possibly can, for me.

Geoff Allix (03:40):

So how was it being diagnosed mid-COVID pandemic? I'm guessing that's made a difference.

Regina Beach (03:50):

Yeah, absolutely, because I really put off getting the tingles in my feet checked out for a long time. I wasn't really in pain; I wasn't really having mobility issues. I was just having lots of numbness in my feet. And since I had been extra active in 2019, I did miles of swimming, biking, and running, I thought I was just experiencing some overuse residual something. And I really put it off and put it off, and it wasn't until my acupuncturist was like, "Your cold tingly feet, really, I haven't been able to do anything about this. I really think you should go to your GP and get some blood work done." And I'm really glad that she said that because I think, especially for people who like to tough it out or who are used to doing physical things and maybe having their body have adjust to stuff, I really wasn't thinking that I had something neurologically wrong with me.

And so then, obviously it took a little bit of time to check, I didn't have low B12, I didn't have low iron. My GP thought maybe I had a pinched nerve and just ordered a cervical MRI, and then eventually a full MRI. And then I ended up in the hospital for a week because I was having, I guess, a big relapse where I really had some terrible symptoms, and was losing mobility, and ended up with the diagnosis about a year after I really first started having those tingles. So, I do feel like I'm getting good care now, but I feel like the road to finding that diagnosis and really finding my way was definitely prolonged because of the pandemic.

Geoff Allix (05:38):

And I think MS is a difficult one anyway, because it's not like we have a key symptom. Most things you can say, "Yeah, that's likely to be that because you've got this key symptom." We're like, "Well, actually it could be anything." Your nerves do everything in your body, and we've got a problem with our nerves, so it could be, people have got eye problems, walking problems, bladder problems, temperature problems, pins and needles problems, and they're all MS. So yeah, it is really difficult.

Regina Beach (06:07):

Yeah, exactly, and you don't necessarily think of, "Oh, I need to pee all the time," as being connected to this idea that the grip in my left hand is not as strong as it used to be. You don't make that connection naturally, I think, because MS symptoms can run the gamut.

Geoff Allix (06:25):

So, when did you come across OMS? How did you find out about OMS? And how did that go for you?

Regina Beach (06:33):

My whole life, I have said, "If I ever get really sick," kind of jokingly, "I'm just going to become a monk and be a vegan and live in the woods." And so obviously, one of the first things I Googled was, what's the best diet for MS, because I understand that what we put into our body is the molecules that we become. And so I thought, okay, someone has got to have been doing research on this, and so I came across Swank, and then came across Jelinek, and then the evidence was just so compelling to me. I spent a month researching recipes, getting rid of stuff in the fridge, overhauling things.

My husband's been really wonderful and has changed his diet too, so we cook together. We're writing down our recipes and compiling a cookbook. We have an Instagram where we post recipes. It's been really fun, and it's been a huge change because I used to really love cheese and dairy, and my husband used to be big into smoking meats and grilling meats, and so we've just done a 180 with our meals, and it's really helpful to have somebody to co-plan with and cook with.

Like last night, we had some smoked fish and veg, and it's actually really amazing what you can do, cooking without oil, that I had no idea was possible. So I'm actually really happy that we found this. He's a triathlete and has found a lot of benefits from the diet portion of Overcoming MS as well, and I've always been a meditator of sorts, but now I feel like it's really key, and I definitely carve out the time more than I used to for that component.

And yeah, I do take a DMT, and I'm hopeful that with everything together, I'll get some more mobility back because I walk currently with two sticks, and I'm really hoping to one day be able to walk without a mobility aid.

Geoff Allix (08:42):

Yeah. That was the next thing I was going to ask actually, so you are listed as having significant disability on the EDSS scale. So what's two sticks? That's somewhere up like four and a half, five, or something on the scale?

Regina Beach (08:55):

Yeah, so I don't leave the house without at least one stick and it really just depends on how my balance is feeling that day. And sometimes, if we're at a museum or if I'm out and about in a big public arena, I've used a wheelchair before, just because walking long distances is really tough for me. And that was really heartbreaking because it was something that, hiking and long-distance trekking are things that have been a really important part of my life up to this point. I did the Camino de Santiago, and I've done a lot of long-distance cycle trips across Europe and Asia and North America, and I feel really lucky that I was able to do those things. But yeah, so being in this new body of mine that doesn't function the same way, and is really slow, and I have foot drop on the left side, and it's really a big adjustment, and I don't think I'm totally there. I dream of running sometimes, or I dream that I can walk.

Geoff Allix (10:08):

Literally in your dreams?

Regina Beach (10:09):

Literally in my dreams.

Geoff Allix (10:10):

I have that as well. Some people say, "Does that make you sad because you've lost it?" And it's actually no, when you half wake up and you're just coming out of a dream, if I'm getting back to sleep, I'm just like, "I'd love to get back into that dream again," the one where I'm running around.

Regina Beach (10:25):

Yes.

Geoff Allix (10:26):

Because it's like memories of what used to be, and very similar stuff I used to do, like do a lot of mountain walking and hiking and cycling and stuff. The things now that I think would be an amazing achievement, whereas before it would be climbing Mont Blanc or something, now it's like, something less daunting. I mean, if I can do something like Snowden, or something that's not a hard mountain, that would be such an achievement for me. I mean, I don't know if it's achievable because I'm not really, I'm similar to you, I always take a stick when I go out, but I'm not ruling out that I can get a bit better.

Regina Beach (11:04):

That's how I feel.

Geoff Allix (11:06):

There are people I've come across, who like me, think those aids, they're not disabling, they're enabling. So, using mobility aids, and certainly, yeah, so I've got an E-Trike that I use partly also as a mobility scooter sometimes because I can just put it a walk mode and just trundle along. Because I just, yeah, the distance is the problem really, whereas I'd love to go on a city break where I just wander around all day. But now I-

Regina Beach (11:39):

I love that, yes, where you're just walking miles and miles and seeing all the things, and now you have to be a little more deliberate about where you're going to go, how long is it going to take, and where can you take a rest? But it doesn't mean you can't do it. So I was really nervous to take my first international trip since having mobility issues, but my husband and I went to Egypt over Christmas and New Year's, and it was amazing how much we were able to do and how accommodating people are when you just explain the situation, and how much people want to help and make things as easy as possible. So, we did a snorkeling trip and everyone on the boat was super helpful because that is, as someone who has balance issues, it’s a nightmare to walk around on a boat.

Geoff Allix (12:27):

Yeah. Well I've been scuba diving twice since I've had MS.

Regina Beach (12:27):

Nice.

Geoff Allix (12:33):

Yeah, I've been scuba diving in Costa Rica and in Thailand, because I used to scuba dive a lot, but actually I thought, well, why not? Because there's not a balance issue.

Regina Beach (12:33):

Yeah. Once you're in the water, it's great.

Geoff Allix (12:44):

Yeah. And actually when you're scuba diving, you don't really, really, it's not a lot of exertion, because otherwise you use up all your air basically. So you are trying to do everything in a very gentle motion, so I still have the skills, and yeah, the problem is getting on and off the boat. On the boat, because it's moving around, there's loads of stuff to hold onto because everyone's got to hold onto stuff, so actually it wasn't that bad. So yeah, I could do that, and that was really cool.

Regina Beach (13:11):

Yeah, and it is just about finding what you can do and leaning into what you can do, and making new goals, like you said. There's a little lake, we live right near the Cwmcarn Forest Drive, and one of my goals is to make it around that whole little lake without taking a break. And that is a very small goal compared to maybe what I used to be doing, but that's fine, that's where I'm at right now, and I'd rather be getting out there and trying for that. And also I just really appreciate my good days because, obviously, I used to take walking and running for granted, and now I'm like, "Oh, I feel great today. I'm definitely going to go out for a walk or for a little hike." So there's the small joys.

Geoff Allix (13:58):

Yeah. And the next question is, what are your thoughts on people with MS choosing other types of diets or lifestyle alternative to OMS?

Regina Beach (14:11):

Yeah, so this is really interesting. Since being diagnosed and disclosing my diagnosis, I've had a lot of people say, "Oh I have MS too," or "I have another autoimmune condition," which I think is really interesting, how much you don't know about your acquaintances. I feel like disclosing brought me really close to some people who I had no idea also had things that they were dealing with. But I also think that it's a really personal decision about how you're going to self-manage your condition, and so I've definitely had to be firm, but kind, in my approach saying, "I'm sticking with OMS. This is what I want to do. If you want to do paleo, you want to do another diet, that's fine."

I think it really comes down to how you feel and what you can stick with. And so anybody who is managing through lifestyle, I think deserves big kudos. Anyone who's making these big changes in their lives, whether it's adding exercise or mindfulness, or taking supplements, or whatever it is. I think we're not really at odds with most of the other diets, they are mostly whole food based, they are mostly much healthier than the standard Western diet, and I think that you want to be encouraging, this idea that we have autonomy to make changes that aren't just dictated from a neurologist or a GP, that we can do something for ourselves.

Geoff Allix (15:46):

Yeah, and I've spoken to people on different protocols, Mathew Embry, Best Bet Diet, talked to him, and the commonality is greater than the differences.

Regina Beach (16:00):

Much more.

Geoff Allix (16:01):

And with the Wahls protocol similarly, basically they're all non-dairy, they're all low saturated fat, they're all whole food based. Now it may be that you have organic grass fed, lean meat occasionally on the Best Bet Diet. It may be that you have, gluten is okay on OMS, which is not on others. So there's little bits on the edges, but the core bits are really the same, low saturated fat, whole food diet with no dairy, is basically common across all of them. And I think-

Regina Beach (16:39):

Yeah, and even Swank had low fat meat after year one on his original diet, which the OMS diet is built on, so there is so much that is in that same vein.

Geoff Allix (16:53):

Yeah. I think some people, as well, because there's a lot of stuff with fasting now as well, and I think there's a lot of interest in fasting. And the paleo diet, if you cut out all your carbs, then you put your body into a fasting state, but when you talk to the neurologist about this, when you are proposing this, they're saying, "Oh yeah, we're not actually encouraging you to just go on an Atkins diet because that would put you into a fasting state, but that's not actually healthy. What you want to be doing is going to fasting state by reducing the time window you eat, or not eating for a day, a week," these different ways of doing it, and then eating a healthy lifestyle. So there's sort of like-

Regina Beach (17:35):

Yes, and not just putting yourself into ketosis for the sake of it by not consuming carbs, which are really in everything, and as long as you're eating whole grains, is very, very healthy. That's what so many cultures and indigenous people's whole diets are based on, potatoes, or rice, or other grains. And I think cutting them out is, like you're saying, it's not healthy for the long haul.

Geoff Allix (18:06):

So, to change a little bit and talk about your professional life, you were a schoolteacher in the US, moved to the UK and live with your British husband, and now work part-time for OMS as the Trusts and Community Fundraising Manager, as you mentioned. So how did that transition come about?

Regina Beach (18:27):

Oh my gosh, I feel that life in Chicago, when I was teaching in public schools there, is a lifetime ago. I was really burnt out, it's a really tough job. I really give a lot of praise to all of the schoolteachers out there, especially in these strange times. But I was really at a point in my career where I was turning into the type of teacher I didn't want to be and needed to pivot, and so I decided to take a year to do a Fulbright Fellowship in Laos in Southeast Asia, and that was my last full year of teaching. I taught teacher candidates there, and that's actually where I met my now husband, who was on a motorcycle adventure through Southeast Asia, and came back to visit me a couple times.

And so, through that process, I was really thinking, okay, what is it that I really like? What is it that I really want to do? I did yoga teacher training. I became a lot more interested in mindfulness and moving meditation, and pivoted back to my first love, which was writing. I studied journalism in university, and really decided, okay, I want to pursue writing. And so some of my work with Overcoming MS is grant writing, and blog writing, and press releases, and I also write essays and poetry in my own time. And so, I'm just trying to carve out a life that's more reflective of my values and what I really enjoy and what I want to spend my time doing. And I was kind of already in that mode when I was diagnosed, but since diagnosis, it's been even more acute that, the time I have, I want to spend it focusing on the things that I really enjoy, and the things where I feel like I can make a big difference.

Geoff Allix (20:31):

So OMS is celebrating its 10th birthday this year, and you've got some special events upcoming, there's various OMS birthday trivia, OMS big picnics, and other events. So could you tell us a bit about the events upcoming?

Regina Beach (20:45):

Yeah, so we're really excited to celebrate a decade of the charity promoting the OMS program for people worldwide. And so, yes, the big picnic is a great way to get family, friends, your OMS Circle, involved in some outdoor fun, a barbecue, maybe, bringing OMS compliant foods, teaching people about what the diet pillar is about and why, and possibly even doing some fundraising for the charity. And we are going to do a big birthday quiz on Zoom this year, so that will be really fun, having people answer questions both about the program and also just fun trivia stuff.

And so, this year is really important because 10 years ago, Linda Bloom decided that the OMS program needed a cheerleader. I feel the organization is a mouthpiece to help deliver the content and help people who have MS understand that there are thousands of us who are living better because we're self-managing through the program. So, yeah, if you would like to get involved, email fundraising@overcomingms.org. We're really excited to celebrate. We're celebrating the launch of the new brand, we're celebrating what we're moving towards in the future, and hopefully it will be another 10 years of growth and expansion, and yeah, great food and great fun.

Geoff Allix (22:28):

So my next question straddles personal and professional, so you're a devout yoga and meditation practitioner, which you also teach, so could you tell us a bit about how that's helped you? How that yoga and meditation side of things has helped you, and share some tips to others about how they could get into a daily meditation practice?

Regina Beach (22:50):

Yeah, for sure, so I used to teach a very yang, very physical style of yoga, the 26+2 Bikram series, which is done in a 40-degree Celsius hot room, which I can't do anymore because heat really exacerbates my symptoms, and a lot of the standing series involves so much balance that it is just out of reach for me right now. So I really have had to adjust my practice and my teaching from this really intense [inaudible 00:23:24] to a much gentler, more yin, more long hold, more floor-based yoga.

And so that was really tough for me at first, because obviously this is something I've been doing, I took my first yoga class when I was in university, I was 18 years old, it's been with me for a long time. I'm trying to see it as, I have all of these years of experience, but now I have a beginner's body where I can't necessarily do all of the things that I used to do, and I'm now reteaching myself.

And so, coming at it from that perspective, I feel has been really helpful because it's just being curious about, what can I do today? Being curious about, how does my body feel today? And leaning into that, and saying, "Okay, this is how I feel. This is what I can do. This is how much I can do." And just letting the rest go, and that's where the mindfulness and meditation come in because we cannot force ourselves to do something that we're not able to, and that doesn't necessarily have to lead to frustration. I think that piece is so crucial, when you are able to accept where you are at today, then everything just floats a little better and we're a little more at ease.

I think you can do meditation no matter what you're doing, whether you're doing yoga, whether you're just sitting mindfully, whether you're drinking tea mindfully, whether you're just taking a nice walk and observing the birds and the trees. I think all of that is just, what can I do? Where am I now? How am I feeling in my body? All of that is mindfulness.

And I'm just appreciating where I'm at, and what I can do, and moving towards little goals to improve my balance, to improve my flexibility, and not necessarily treating my old body as the goal, because I might not be able to do all of those yoga asanas in the future, and that's fine, that doesn't mean I can't deepen my practice. And for a while I was thinking, well, does this make me a terrible yoga teacher if I can't do all of these poses? And I've come to the realization that people don't actually care if their yoga teacher can do fancy arm balances, what they care about is if their yoga teacher can meet them where they're at, and help them find comfort and ease, and a little bit of stretch and relaxation in their own body. And so that's also been just a new version of my yoga practice and my yoga teaching.

Geoff Allix (26:03):

Yeah. I mean, Usain Bolt's coach is not a world record runner, so you can teach without being at that level, can't you?

Regina Beach (26:13):

Exactly.

Geoff Allix (26:14):

So, thank you so much for joining us on the Living Well with MS Coffee Break, and allowing the community to get to know you a bit better. So there's one last question that we have that we tend to always ask people, which is, if you could tap into your experience with MS generally, and OMS specifically, for a nugget of wisdom to help people, particularly if they're new to the OMS program, what would that be?

Regina Beach (26:39):

I think, really planning out who you'll tell, and how, and what you need from those people you tell is really important because, for as strong as we all are, you need a community behind you. So whether you're going to lean on your OMS Circle, or your family, or your friends, I think having a plan and knowing how you're going to react when someone doubts that what you're doing is helpful. Because I think as a newly diagnosed person, it can be really crushing to hear someone say, "Oh, there's no proof for that," or "Why are you doing that? That's pseudoscience," or whatever the negative, we always remember the negative more than the positive. And so building a community of trusted people, of people who are supporting what you're doing, and having ways to deflect any naysayers, would just go a long way because the mental health aspect of having MS is no joke and it takes a village to keep people moving forward and living well, and taking care of all of these different components of the lifestyle.

But we can do it, and we can do it together, and I think things like the podcast, and the OMS Circles, and all of the wonderful OMSers really do support one another. I think that's the best part of this program, is the community.

Geoff Allix (28:03):

Thank you. And thank you very much for joining us, Regina Beach, and thank you for all your work that you do with OMS as well.

Regina Beach (28:11):

Thanks, Geoff, it was great to talk to you today.

Geoff Allix (28:13):

Do you have questions about this episode, or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-Newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

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Bio:

Arlene Faulk has had a passion for writing from a young age beginning in the 8th grade when she wrote and published her class newsletter, The Tattler. She earned a BA in Journalism from the University of Iowa, reporting on everything from Led Zeppelin concerts to protests of the Vietnam War. She went on to receive an MA in Speech Communication from the University of Kansas.

At 22 years old, Arlene lost all feeling below her waist. She regained mobility, but it was years before she received an accurate diagnosis of MS. Arlene endured years of undiagnosed chronic pain, concealing her debilitating symptoms while climbing the corporate ladder, where she managed human resource departments in a major airline until her body stopped her.

In her illuminating journey of determination and self-discovery, she explores how practicing Tai Chi and modifying her lifestyle and mindset helped her retake control and move her life in the direction of possibility. She has been teaching Tai Chi for over 20 years in Chicago and Evanston, Illinois.

Questions:

Welcome to the program, Arlene, and thanks so much for joining us on Living Well with MS.
Congratulations on the recent release of your book, ‘Walking on Pins and Needles’. It’s all about how you discovered how Tai Chi can help people, yourself included, manage chronic pain. We’ll get more into that shortly. But before we do, let’s dive a little bit into your background…
You were diagnosed with MS in your early 20s, and that spiraled into a series of debilitating symptoms and pain. Can you tell us a little bit about those initial experiences coping with your new reality?
Despite all of this, you still went on to build a successful career in the corporate world, until your condition forced you to stop. How did you deal with all of this while working in high pressure jobs?
When did you discover Tai Chi? And perhaps for our listeners who aren’t familiar with it, can you describe what Tai Chi is in layman’s terms?
How did the practice of Tai Chi help you deal with some of your chronic symptoms?
Tai Chi seems to be yet another way to practice mindfulness, which is core to the OMS program. Can you speak about its impact on reducing stress in the body and mind?
There’s something about our mindsets that compels us to try to control as much as we can, and at the same time letting go seems to be a healthier path. How do you use Tai Chi to make that lane change?
When did you transition to teaching Tai Chi, and how did you develop your approach to using it as a tool for managing chronic pain?
What sorts of people do you teach? Is your approach effective for a range of conditions, including MS?
You’ve done on to write a book about this, and incidentally, more information about the book and where to purchase it is available in this episode’s show notes. How did the book come about?
I know this is a bit of an unfair question, but I will ask it anyway… if you can distill your experience with Tai Chi into one core lesson learned that you’d like to impart to our global community of people with MS and their supporters, what would that be?
Thanks so much for being our guest on Living Well with MS, Arlene. We are thrilled to learn about the amazing work you’re doing to help ease chronic pain through a Tai Chi practice. And I encourage everyone to learn more about it by checking out your book, and you can find all those links and more in our show notes for this episode. Thanks again, Arlene.

Links:

Learn more about and buy Arlene’s book, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis(River Grove Books, Feb 22, 2022)
Dig deeper into Arlene’s story on her website
Check out Arlene’s Tai Chi website and blog
Connect with Arlene on Facebook, Instagram, YouTube, and LinkedIn

Coming up next:

Tune in starting June 6 for the 32nd installment of Living Well with MS Coffee Break, and get to know Regina Beach, an American member of the OMS community living in the UK who serves as Overcoming MS’s Trusts and Community Fundraising Manager.

Don’t miss out:

S4E52 Transcript

Walking on Pins and Needles - Managing Chronic Pain with Tai Chi

Geoff Allix (00:01):

Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast, or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org. Or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well With MS on your favorite podcast platform, so you never miss an episode.

And now, let's meet our guest for this episode. In today's Living Well with MS podcast, we have an interview with Arlene Faulk. Arlene Faulk had a passion for writing from a young age, beginning in the eighth grade, when she wrote and published her class newsletter, The Tattler. She earned a BA in Journalism from the University of Iowa, reporting on everything from Led Zeppelin concerts to protests against the Vietnam war. She went on to receive an MA in Speech Communication from the University of Kansas. At 22 years old, Arlene lost all feeling below her waist.

She regained mobility, but it was years before she received an accurate diagnosis of MS. Arlene endured years of undiagnosed chronic pain. Considering her debilitating symptoms, while climbing the corporate ladder, where she managed Human Resources Departments in a major airline, until her body stopped her. In her illuminating journey of determination and self-discovery, she explores how practicing Tai Chi and modifying her lifestyle and mindset, helped her retake control and move her life in the direction of possibility. She has been teaching Tai Chi for over 20 years in Chicago and Evanston, Illinois. Welcome to the program, Arlene. And thanks so much for joining us on Living Well with MS.

Arlene Faulk (02:16):

So glad to be with you today, thanks for asking me.

Geoff Allix (02:19):

And congratulations on the recent release of your book, Walking On Pins And Needles. It's all about how you discovered how Thai Chi can help people, yourself included, manage chronic pain. And we'll get more into that shortly. But, before we do, let's talk a little bit about your background. So, you were diagnosed with MS in your early 20s, which then spawned a series of debilitating symptoms and pain as well. So, could you tell us a little bit about your initial experiences of coping with the realities of having MS?

Arlene Faulk (02:54):

Sure. Actually, it was in 1970. So, a while back, I had just graduated from college and was in my first job as a management trainee, so very excited, very busy. And in one afternoon, I lost all the feeling from my waist down, so that was pretty scary. And there was no diagnosis, it was inconclusive. Went away, I was young, I kept going. And then, it was some years later, that the symptoms returned, and it progressively got worse. I lost my ability to walk. I was having a lot of pain and still did not have a specific diagnosis. Just for your listeners, who might not have been around at that period of time, there was at least, in our country, the MRI was not a common test. So, there were CT scans, there were spinal taps. It was 21 years after that first episode of losing my feeling from the waist down that I got an official diagnosis of MS and that's when I had the MRI.

So, without going through the specifics, in terms of all that happened between the time it first occurred, and then when I got the diagnosis, it was basically, a series of fatigue, of losing my balance, not knowing if I could get across the street. Pain, I felt that my legs felt like they had needles just plugged into them. It was really like being plugged into an electric socket, is what it felt like sometimes. And then, my arms would feel like needles, just very sharp, prickly pain. So, it was scary, but I kept on going. I just thought, it was mind over matter, and it would figure out what it was. And as long as I could keep going, I would do that. And I was ascending the career ladder in a major corporation and was able to continue to do that, until one day my body stopped me and it stopped me completely, and said, "No more." And I laid on my couch for two years.

Geoff Allix (05:03):

So, yeah. So, you went on to have a successful corporate career, but how did you deal with the stress of the high pressure? Or is that what ultimately stopped you, do you think?

Arlene Faulk (05:16):

It's a very good question. I just kept barreling through it. I think I have a pretty high tolerance for stress and well, I thought so, higher than, we all have our limitations and we have to listen to our body, because if we don't, our body will stop us. I thought I was listening to my body. I exercised, I walked, I went to a gym, so I thought I was doing it, but I really didn't learn until later, that I was not really listening to my body until it stopped me. So, that's what I did. I did social things; I went to the gym. In terms of doing exercise, I did do that. I thought that was relieving the stress, as well as social functions. As far as figuring out what was going on, I, at times, pushed that to the side and said, "Well, the doctors can't figure out, what is really going on, and I don't know. So, I'll have to keep going, until they can figure it out."

There was a lot of frustration, a lot of frustration, because didn't know what it was. And it became scarier and scarier, because the symptoms started getting worse and worse, in terms of, I was living in New York City and didn't know if I could cross the street and all the traffic and busyness there. And so, I thought, "I have got to find out what this is." And I had a good team of doctors. They thought it was neurological, thought it might be MS, but they didn't have the tools to say specifically, that's what it was. They treated me as though it was MS. At the time, the best treatment was oral prednisone. There were no injectable drugs at the time. So, it was really, oral prednisone, and I had lots of doses of that over the years.

Geoff Allix (07:01):

And that's a steroid, isn't it?

Arlene Faulk (07:05):

Yes. It is a steroid and-

Geoff Allix (07:05):

It's a short-term treatment to get you through relapse of-

Arlene Faulk (07:07):

It's short-term treatment-

Geoff Allix (07:08):

Yeah.

Arlene Faulk (07:09):

Yes. And then, the times when I was very close to losing my balance and losing my ability to walk, which I did three times, completely lost it, I would go into the hospital and they'd do an intravenous treatment. That also was a steroid, a stronger steroid, for three days. And then, hopefully it would stop the inflammation. And it did, I think in every case, it stopped it. But then, I felt all drugged and for many years, did feel foggy and drugged and it took a while then, for that to decrease and my symptoms to decrease. It didn't make it better, it stopped the progression, is what it did.

Geoff Allix (07:59):

Mmm-hmm. Well, the core reason we've got you on, talking to us, is about Tai Chi. So, could you say a bit about when you discovered Tai Chi and tell... I mean, listeners might not be familiar with what Tai Chi is. So, could you describe it and your discovery of Tai Chi?

Arlene Faulk (08:16):

Sure. I will describe it. I mentioned that I was on my couch for two years, not knowing what to do. And all my leadership skills, decision making, that had served me so well, weren't working. I couldn't figure out what to do. Through a series of events, I was led to a healer, a practitioner of Chinese medicine and an acupuncturist. And I started seeing her. Did not know what I was doing, or what it was really about, but I thought, "Okay, I don't know what to do. So, I'm going to try it." And had success with her, she cared a lot. I really felt that she might be able to help me. And she was the one who recommended Tai Chi. So, when I started Tai Chi, I started with a group of seniors. I thought, "Well, why not?" What I knew about it was, it was from China and it was developed as a martial art.

So, I started and for the first year and a half, I sat in a chair and I did the breathing. I did a lot of visualization, in terms of the moves, of what they were doing. And in each class, the teacher had the students do walking, a Tai Chi walk, where you focus on the standing leg. You pick up the leg and you set it down and we call it being rooted into the ground. So, the middle of the foot is rooted and you can focus then on your alignment. And then, you pick up the other leg and set it down. So, it's an up and down motion. You go forward a little bit, but it's more up and down. So, what Tai Chi does, just in general, overall principles, it looks to people like it's a dance. When people see in the park, see people doing it, and it's very beautiful, in terms of flowing and beautiful.

What it is, is the focusing on the moment. There are weight shifts, three major weight shifts, and turning from the waist and the hips, the arms will follow keeping the body together as much as possible, as a single unit, working in harmony together. That helps you focus on the moment. When you focus on the moment, then it helps you relax. It helps stress go away because you can't be thinking about other things. So, that's one of the things that even helping me with my MS and my own story forward, that was one of the things that Tai Chi did. Because, the fear, the uncertainty, the pain can be hard to deal with. And sometimes, it's easy just to focus on those things. So, I really wanted to get out of that mode and do something positive. For a while, I didn't know if it was doing anything. I thought, "Okay, I'm going to keep doing it."

And I did. And slowly, I regained my ability to walk. I owe that and attribute that to Tai Chi, in terms of my walking. And in my classes today, I do walking, have the students do walking in every class, because I know how helpful it is, regardless of where your starting point is. And then, focus on the principles of being what we call again, rooted like a tree, nice alignment, and moving the body in preset sequence of movements, to balance is called balancing our yin and yang. And Tai Chi is based on the fundamental principles of nature, that everything relates to each other, and it's in harmony and it's in flow. And that's what Tai Chi is and some of the names of the moves in Tai Chi are named after animals, or water, or mountains to really reinforce that point.

Geoff Allix (11:53):

And you can literally go from starting with a seated... If you're not able to walk, you started in a seated pose, and then getting ultimately, to the point where now, you can walk. Amazing.

Arlene Faulk (12:08):

Yes, yes. That's why, and I have taught people in chairs, classes where everybody's in a chair and I've taught mixed classes. And what I say, is to visualize, because I had it happen myself, that you're around this nice energy, it is a very good, flowing energy that's relaxing. And then, if you visualize your foot taking a step, whether it is or not, or bending at the ankle, whether you can or not, then over time for me, I was able to do it. Now, I can only tell my story, but I have taught others that have made progress from where they are, in somewhat the same way that I have.

Geoff Allix (12:49):

And would you say that mindfulness is a core component as well? You mentioned that you're in the moment, you are concentrating on what you're doing. [crosstalk 00:12:58].

Arlene Faulk (12:58):

Mindfulness is a huge component. In fact, Tai Chi is often called Mindfulness In Motion. So, you think about it and people are familiar with and do yoga, which is another excellent, internal energy discipline. It really creates stillness through stillness and poses. What Tai Chi does, it creates stillness through motion. Still, you'll hear mindfulness in motion and sometimes, medication in motion. Because, it could be a medication, for people, in and of itself. So, it is a key component.

Geoff Allix (13:33):

It also came up, about our mindsets, compelling us to try and control things as much as we can. And there's also an element that we need to let go, which might be a healthier path. Now, there's two things that occurred to me when this question came up. Because, partly I think, some of the people who are doing better with MS, are ones who've decided to do something themselves, to not be someone that things are done to, so that they would just receive whatever the neurologist tells them. They'll take that drug and it is what it is, and they will just carry on with their life. And then, they'll just-

Arlene Faulk (13:33):

Right.

Geoff Allix (14:18):

Do what they're told. I think, to me, the number of people I've spoken to, people who are proactive in their journey and they say, "No, I will actually do something." Which may be taking up Tai Chi, it might be taking up yoga, it might be eating a more whole food based diet, doing more mindfulness. That actually, those people who are more proactive, tend to do better, from what I've found, just personal experience. So, there's two sides to this. There's controlling as much as we can, which I think it could be a positive, in that we're actually proactive, but equally, maybe we take that too far and that we are trying to control our lives. I mean, you mentioned the start of your condition, that you were just trying to push through this. And I can understand that. Before I was diagnosed, traditionally, I did a lot of sport and I would just train harder. I do this rock [crosstalk 00:15:16] climb, I need to train harder to do that rock climb. I can't run fast enough; I need to do a bit more running.

And suddenly, it wasn't working, because I was [crosstalk 00:15:25] tripping still and I was thinking, "Well, I need to run more then. To stop tripping when I run, I need to run more." And that wasn't working at all. And that was alien to me, that never happened in my life. So, clearly that way of doing things wasn't working. So, how do you make that lane change to say, that actually, "We need to let go of that." And can Tai Chi help with that shift in our way of thinking?

Arlene Faulk (15:57):

It's an excellent question, because I think, a lot of us do what you're talking about. I certainly did, in terms of trying harder. If it worked before, why isn't it working, if I just do more of it? So, it's a huge shift and it starts with a mental shift. A mental shift of, "I really can't control everything." It's not that we don't have any control, because we can do some things to help ourselves. But it is that things are going to happen and life happens and letting go is a major part of Tai Chi. Letting go of tension, letting go of preconceived ideas. And that has to do with first, learning, to be in the moment. So, I really did make a huge shift from living from my head, pushing through, to living in my body, in terms of letting go.

And that is a main principle of Tai Chi. We have to keep working at it, because our mind will drift towards, this to do, or this worry. And so, fear can creep in and it is a matter of focusing on this breath, or this particular move. You have a move called, Part the Wild Horse's Mane. And I tell my students in class, if Part the Wild Horse's Mane is the best thing you've learned today, isn't that wonderful? It's wonderful. You don't have any preconceived ideas of what that should be because you don't know. And so, Tai Chi is really nice that way, to have terms that we don't use in regular life, in a regular day-to-day life, I should say. And it is energy, learning to relax the muscles, relax the mind and move the energy through our body.

And you can feel that individually, as well as feel that in a class. And doing some teaching, still doing some teaching online since COVID, and I can feel the energy coming through the screen, sometimes. I tell my students that, that when we're doing it together, that really can happen. And I start before, even my [inaudible 00:18:14] starts in my book, I use a quote by an ancient Chinese philosopher, Lao Tzu, that says, "When I let go of what I am, I become what I might be." And that's my journey. And I think, maybe many people's journey. Whether they're in that right now, is that there's fear of the unknown. And what I've learned by letting go, is that's where the possibilities are, in the unknown. When I jumped into work with Nancy, that's her name, the acupuncturist, I was fearful. I didn't know what it was, I had no experience and I did it anyway.

So, sometimes we have to do that with good sense and good recommendation. I think that's probably important also, but we've got to try. And I think that we fear the uncertainty and particularly, those are principles with MS and any chronic pain that people deal with. There can be a tendency to say, "Well, I just can't do it." Or "I don't feel like it." And taking one step forward, regardless of what it is, not just thinking about it, but actually taking a step forward, even in the midst of uncertainty and even in the midst of pain. I see others doing that, not only MS, but in arthritis, both osteoarthritis and rheumatoid arthritis, fibromyalgia, lupus comes to my mind, even I have a man right now, who's dealing with spinal stenosis and he was not sure about Tai Chi and he's been doing it about eight weeks. And he said, "He feels pressure off his spine doing the Tai Chi moves." And he does some of it sitting down and some standing.

Geoff Allix (19:57):

So yeah, that's very... And I think that idea that, you are being proactive in your wellness, but you are also being accepting. So, you can be both. You can be-

Arlene Faulk (20:10):

Yup, you can be both.

Geoff Allix (20:11):

Accepting, but you can also be proactive and do something about your wellness.

Arlene Faulk (20:15):

Right, I don't think it's an either/or-

Geoff Allix (20:16):

No.

Arlene Faulk (20:16):

It's not either/or.

Geoff Allix (20:17):

No. No, no. They sound similar, but they're not. No, it's not. So, when did you move into teaching Tai Chi? And how have you developed that approach to tackling chronic pain?

Arlene Faulk (20:34):

When I started teaching Tai Chi, I had been studying it maybe five years. Usually, with people starting to teach, it's a lot longer practice, before they start teaching. But, the acupuncturist was going to open a new, holistic health center and said, "I want you to teach here." And I said, "I'm not sure that I'm ready. I'll ask my teacher." And he said, "No, I want your energy here." And I did it and started. So, the teaching of the principles, you have to take it up another level when you're teaching others, because you have to explain it, in terms that they might understand. And they don't always understand, like I didn't understand when I first started. Just said, "Okay, well, relax with it and give it time, and you will understand." And you don't always have to understand in your head. Your body might pick it up before your head does.

And then, it's been helpful. And to this day, I don't have the chronic pain now, but if I do have some pain, Tai Chi is the most helpful thing to me. There's something about the motion and the movement, that I can put myself in that moment and the movement itself, there's something that really speaks to my body after all these years, that is still helpful. So, that's basically it and other people are at different points. And I have seen some remarkable stories of people. I have a lot of people who do have chronic pain situations.

And so, I give it to them for trying, and we can always adapt. I always say, "When we start, the main thing is showing up." It's like, what you were talking about before, in terms of, "It's not an either/or, but being proactive." I think, even with the pain and not knowing what to do, it can be difficult. Days can be hard. And so, taking a step forward to do something, saying that you deserve to do something, that it might make a difference, is really the first step. And it can be a really long time and space, between thinking you should do something and actually doing it. You might have mentioned that similarly before, but that taking one step, people feel so good about themselves. Say, "I did it," showing up. So, I reinforce people for showing up.

Geoff Allix (22:59):

Yeah. I've heard that from other people, that just taking... You don't have to run a marathon. If you can walk-

Arlene Faulk (22:59):

No.

Geoff Allix (23:07):

To the end of the street, or if you can walk to the end of your drive. If you take one more step, then you got a bit further than you did yesterday. And if the next day you get another step, that first step, that's the start of the path. That's-

Arlene Faulk (23:21):

Yes.

Geoff Allix (23:21):

Each time, you go a little bit further and at the end of that path, then you can do great things. But all of those things start with one step.

Arlene Faulk (23:30):

They start with one step. I have a woman who contacted me. She was interested in Tai Chi. She has a degenerative health condition and they haven't diagnosed what it is, but she's losing not only muscle tone, but muscle strength. And it is scary to her. She's been very active and not only walking, but in sports. And so, it feels like her livelihood is slowly being taken away from her. So, she was asking about Tai Chi. She's not able to do a class right now, but I told her about, on YouTube, I do have some videos. That, if she sat in a chair and maybe that would be helpful. And I talked to her, she actually contacted me. And she said, "I want to tell you how excited I am. I went from being able to do one of your videos from two minutes to five minutes." She said, "I haven't felt this good in a long time."

I mentioned that because that's huge. To some people, that might not seem like a lot, but I give her all the credit in the world, because she's doing something and it's helping her and she's excited about it.

Geoff Allix (24:32):

Yeah. And I think you need to reset as well. Because I sometimes-

Arlene Faulk (24:36):

And reset.

Geoff Allix (24:37):

I'm not going to do the things that I did 20 years ago. That's not an achievable goal. Actually, if I can walk for two miles, then that would be an achievement, not running 26 miles. If I set-

Arlene Faulk (24:37):

Right.

Geoff Allix (24:59):

That as a target, that's something I did before. That was a different time. So, me without MS and me with MS are different people. And I think, again, someone said this to me, "You can't judge yourself on what you used to do. That was a different person." So, you with MS, there's achievements now that would've been nothing to you before, but they are still an achievement now. And getting a bit better now is a positive thing. So, don't [crosstalk 00:25:22] judge yourself, what you could do for-

Arlene Faulk (25:26):

Exactly. And not to judge yourself. And you're not a lesser person now than you were then because you can't run your 26 miles. And some people might compare themselves and say, "Oh, I can't do that. And I can't do that." And we don't want to get into that mindset. It is, "Look at what you can do, where you are now." Given your state of life and what's been thrown your way.

Geoff Allix (25:48):

Yeah.

Arlene Faulk (25:49):

We all have things thrown our way that we don't expect.

Geoff Allix (25:51):

And we mentioned earlier on, right at the beginning, that you've got a book. So, you've gone to write a book about Tai Chi and there is information about the book and where you purchase it and so on in the show notes. So, have a look in the show notes. But how did it come about, writing a book?

Arlene Faulk (26:14):

Excellent question. And the main thing I can say, is that my Tai Chi students were the ones who really encouraged me to write a book. I'm one who has kept some diaries, I've kept some notes. Certainly, when I was first seeing an acupuncturist, I'd come home and I'd write down what she said, because I really didn't understand when she said, "Really listen to your body. You got to start letting go. You have to take your body with you" what all those things meant. So, students would say, "I've been thinking about taking a class. I've been thinking about doing this a long time. Your story was very inspiring to me. And it got me to the point that I actually did something. You should write it for others." Excuse me? So my hope in writing the book is that it will inspire people to take one step to say, "Maybe, I can do something that's really going to be good for my health." Regardless of what their situation is.

It doesn't have to be MS. We all have things that we could do to help improve our life. But so many people think about it and don't do anything about it and lose momentum. So, hope that my story is inspiring and the perseverance, and I did have a discipline in moving through what I moved through. And yet, anybody can take from where they are right now, and make a step to start to improve. It could be exercise; I think that is important. Diet, you mentioned those earlier, in terms of improvements in diet, different parts of our life that really could help make our health and our daily life more pleasant.

Geoff Allix (27:58):

Yeah. And I think as well, a lot of these things, people don't necessarily get told about them by their healthcare professionals, because-

Arlene Faulk (28:06):

Right.

Geoff Allix (28:06):

They're very much connected with what medication you should be taking. But I think-

Arlene Faulk (28:06):

Right.

Geoff Allix (28:10):

As well, it's not rocket science. It's if you eat a healthy diet, and people know what a healthy diet is. I mean, we talk about levels of saturated fat, and we talk about-

Arlene Faulk (28:22):

Right.

Geoff Allix (28:22):

Processing and most people know what's healthy. Your parents told you 30 years ago.

Arlene Faulk (28:28):

Exactly.

Geoff Allix (28:30):

Yeah, "Eat your fruits and vegetables." [crosstalk 00:28:32].

Arlene Faulk (28:33):

Vegetables, right. Yeah.

Geoff Allix (28:35):

That massively processed candy bar is not health food. I think, everyone knows this, they know it themselves. They know that if they do a bit of exercise, that's good for them. They know that if they're not too stressed, that's good for them. I think, yeah, it may not be our healthcare providers that are putting it front the center. But I think a lot of these things are fairly obvious as well. But I would like to ask you a question that we ask most people in some form, or other, and which is that if you were to distill your experience, specifically for you with Tai Chi, into a few core lessons that you've learned, that you give to our community of people with MS and the supporters of those people, what would these be? What would be the lesson, or lessons that you would say would be a core thing to take away?

Arlene Faulk (29:26):

Okay. The first thing that comes to my mind, is focus on what you can do, not what you can't do. And you might make that a mantra for each day, or put it up on the refrigerator, or put it on your desk. Because it's easy to forget, not just to forget, but not believe it, from day to day. So, that is what we can do, rather than what we can't do. Think about somebody. It could be a family member, it could be a professional, it could be a friend, who can be a cheerleader and support for you. That if you take a step and it's scary, that they'll be there to say, "Keep going, keep going." I think that support, for me, it was a woman named Nancy, my acupuncturist. I talked about her being a cheerleader for my body.

I think, that's really important. The third thing I would say, is to take a step forward, even if it's very small and work on not being so hard on yourself. That it's okay, it's a small step and victories come in little packages and they can be monumental. And the last thing I would say, is breathe. When people ask me, "What's the one thing I could do, that could really make a difference?" I say, breathing. And that sounds simple, but it's not. I even see that in class, and people will say that "Oh, I'm glad you're reminding us to breathe, because I'm concentrating. I'm not breathing." I mean, intentional breathing, so that when we get stressed, even in pain, when there's fear, when there's anxiety, our shoulders tense up.

The best thing we can do is breathe, intentionally breathing to be in the moment and take deep breaths in and out. So, I think that there are some apps out there that have... I looked at one, at one point, that had breathing. It was for, I think it had this big, looked like a sun, a ball that was yellow, looking like the sun. And it was to stop and breathe, breathe in for about one minute. So, that I would say is important also.

Geoff Allix (31:40):

I think, I've seen that, it might be Fitbit, or something like that.

Arlene Faulk (31:44):

I don't know what it's called. Yes- [crosstalk 00:31:44].

Geoff Allix (31:44):

It's bigger, isn't it?

Arlene Faulk (31:46):

Yeah, the ball gets bigger, yeah.

Geoff Allix (31:46):

It's smaller when you read that.

Arlene Faulk (31:46):

Yeah.

Geoff Allix (31:48):

Yeah, I've seen that [inaudible 00:31:49]. So, thank you very much for joining us on Living Well With MS, Arlene. So, we're thrilled to learn about the amazing work you're doing to help ease chronic pain through your Tai Chi practice. And I would encourage everyone to learn more about it by checking out your book, and you can find all of the links to connect to you and about your book in the show notes for this episode. So, thank you very much for joining us, Arlene.

Arlene Faulk (32:14):

Well, thank you, Geoff. I really enjoyed talking with you.

Geoff Allix (32:23):

Thank you.

Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from The Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website www.overcomingms.org. While you are there, don't forget to register for our monthly e-Newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS family of podcasts is for private, non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor, or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis

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Welcome to Living Well with MS Coffee Break #31, where we are pleased to welcome Nigel Bartram as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Nigel is a special member of our community – a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We’ll dive more into that shortly, plus we have a very special surprise for you, so stay tuned. We hope you enjoy this episode’s conversation with Nigel, coming to you straight from Paris, France.

Nigel’s Bio (in his own words):

I was born in London but moved around the UK as a child. After a 1st degree in History and then an MBA, my career landed mostly in marketing in the financial sector. In my last job in the UK, as Sales & Marketing Director of a retail stockbroker, following spectacular growth from start-up, I helped lead the company through a heavily oversubscribed IPO onto the London Stock Exchange.

Aged 43 I upped sticks to follow Caroline, my wife, in what was planned to be a temporary career move for her to France, along with our two young children, and my rubbish French. I became a house husband, looking after the kids, improving my ‘null’ French, and helping build a house in our Paris suburb (with stunning views towards the city. Temporary morphed into permanent. A joyful adventure, imbibing the beauty of our surrounds and French gastronomy became altogether more serious. Settling in France permanently meant I had to find a job. I retrained as a teacher of English, set up a language school, and taught part-time as a university Associate Professor.

All that was a breeze compared to a body which inexplicably started to go haywire. Overnight, out of nowhere, I lost 90% of the hearing in one ear (which happily came back of its own accord, more or less). In my long-gone student holidays, I worked as a tree surgeon, so heights held no fear for me. So how come I found myself sick with panic driving very slowly along the magnificent Gorge du Verdun with Caroline and the kids on board in 2003? I was petrified by the sheer drop into the ravine, something I’d have relished the challenge of scaling up in yesteryear. I suffered in silence of course.

I wasn’t diagnosed with MS for another six years, time enough for my ‘flappy foot’ and drunken sailor swagger to become my trademark walk. Bit by bit, bucket loads of other symptoms intruded into my daily life. Time enough also for MS to land me in plenty of challenging situations, some of which, even though they may have been difficult at the time, were clearly comic book stuff.

The idea of the book crystalised a few years later when I was on an OMS retreat. To my great surprise and delight, I realised that MS hadn’t robbed any of us MS suffers of our senses of humour. Indeed, it had given us a rich new vein of experiences to mine and chortle over, so important when up to half of people with MS experience depression at some point.

The deal was sealed when the retreat facilitators, Dr Keryn Taylor and Dr Craig Hassed, a world-renowned expert on mindfulness, warmly embraced the idea of such a book for the morale boost it would bring to people with MS, and those close to them, by presenting an altogether lighter side of the condition. Off I went to write down a few of my own stories and harvest those of other people with MS. What a job the latter proved to be!

Questions:

Nigel, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
You mention in one of the 3 key things to know about you, which can be found in the show notes, that OMS may have saved your life. That’s powerful. Can you speak a bit about that?
Let’s shift gears a little bit and talk about a very exciting project you’ve just completed and are about to launch. You’ve written a book called ‘MS A Funny Thing’, which is an illustrated collection of humorous essays you’ve written through the years about your experience with MS. Can you tell us a bit about it?
How has humor helped you deal with the challenges of MS?
Another special thing about this book is that you’ve dedicated all the proceeds to several nominated MS charities. What compelled you to model the project this way?
This book is illustrated, and I understand there is an interesting backstory to how you came to collaborate with the illustrator. Can you share a little about that?
Since we have whet everyone’s appetite about this book, we have a very special treat for you. Nigel is going to read one of his essays from the book! This is very exciting, Nigel. It’s the first author reading on this podcast. Please take it away and perhaps share its title and a little context on the piece you’re going to read for the next few minutes.
Wow, that was fantastic. Thanks so much, Nigel. How can people get their hands on your book?
Before we ask Nigel one final question, I want to remind our listeners that May is Mindfulness and Meditation month at OMS. To mark that, tune into a special webinar on May 17, featuring a live meditation session with Phil Startin. If you’re listening to this episode after May 17, don’t worry, you can view a replay of this or any of our webinars at any time. Details on registering for this free webinar, as well as a link to replays of past webinars, can be found in our show notes. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day.
Nigel, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Praise for Nigel’s Book:

“There are three things I'd like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you! Second, all proceeds go to worthy MS charities. Win-win! Third… now what was that third thing? I need to take Nigel's sage advice and stop nominating how many points I am about to make, don't I?”

Professor George Jelinek MD, Honorary Professor, Melbourne School of Population and Global Health and Founder of Overcoming Multiple Sclerosis

Three Interesting Facts About Nigel (in his own words):

I’m physically pretty handicapped, with an EDSS of 7, but still live a fulfilled life. I haven’t given up hope of getting some lost physical function back and am working hard to do that and making some early progress.
I’m certain but can’t prove that the OMS regime saved my life, getting me through a flirtation with the grim reaper three years ago.
Until fairly recently, we who’ve continued deteriorate physically despite following the programme religiously, have been a real OMS Cinderella, as though somehow, we're an aberration and should be ignored. This view is shared by quite a lot of my OMS friends who have similarly failed to experience any recovery. We nonetheless continue to adhere to the programme believing it to be a force for good even if it doesn't do what it says on the tin for us.

Nigel’s Links:

Nigel’s book MS A Funny Thing (well sometimes) is available on Amazon
Check out the blogs Nigel has written on the Overcoming MS website
Check out Nigel’s website, where you can get a taste of his writings
Register here for the OMS meditation webinar with live meditation session, taking place on May 17; if you’ve missed the live webinar, catch the replay here

Coming up on our next episode:

On the next episode of Living Well with MS, premiering May 25, 2022, meet Arlene Faulk, Tai Chi instructor, storyteller, and author of the new book, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis. Learn how Arlene deploys the ancient practice of Tai Chi to help manage chronic pain associated with MS.

Don’t miss out:

S4E51c Transcript

Coffee Break #31 with Nigel Bartram

Geoff Allix (00:01):

Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast.

If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So get your favorite beverage ready, and let's meet today's guest on Living Well with MS Coffee Break.

Welcome to Living Well with MS Coffee Break #31, where we're pleased to welcome Nigel Bartram as our guest. Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you'll join me for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org. That's podcast@overcomingms.org.

Nigel is a special member of our community, a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We'll dive more into that shortly; plus, we have a very special surprise for you, so stay tuned. We hope you enjoy this episode's conversation with Nigel, coming to you straight from Paris, France.

So Nigel, welcome to Living Well with MS Coffee Break. We're very pleased to have you on the program, and the purpose of this series is to get to know a bit better the diverse members of our community from around the world, and today you're joining us from Paris, France. So could you tell us a little bit about your day-to-day life?

Nigel Bartram (02:27):

Yeah, thanks very much for having me. It's a great pleasure. First of all, a little correction. It's not your fault, but we actually don't live in the center of Paris, or actually in Paris itself, but in a very leafy suburb, with a forest on one side and the river Seine, you can see the barges going past from our bed in the morning, we're about 20 kilometers outside the center of Paris.

Geoff Allix (02:51):

That actually makes it sound more idyllic than living in Paris now.

Nigel Bartram (02:55):

Well, it is. And I think in common with what's happened in the UK and many countries post-COVID, people are beating a path out of big towns and cities to go to places where there are spaces which during confinement, as they called it here, are a bit more pleasurable than being cooped up in a rabbit hutch, which is many people's place in Paris.

But yeah, so my everyday life, it's I think largely unexciting. I'm fairly handicapped, so I don't get around very much, but I spend quite a lot of time writing on my computer and doing blogs for OMS and for other MS charities, and it's one of the reasons I had time to create the book. One of the great delights of living here is the gastronomy, which is a reason why we stayed and not went back. So lots of delicious meals, all conforming to the OMS guidelines, or as we called it on my retreat, legal food. And incidentally it's easier, I think, in the UK to eat out than it is here. People, with the exception where they get to know you very well, look incomprehensibly at you when you say, "Well, I can't have this, I can't have that, can't have that," and the rest of it. So they give you a plate of mushy green beans or something quite often. I exaggerate, but anyway.

Geoff Allix (04:34):

No, I've been to France a number of times since following OMS diet, and I would say it's one of the more challenging places I've been to. We did eat a fair amount of pizza, because anywhere that does freshly made pizza, it's fine. Have pizza without cheese. But yes-

Nigel Bartram (04:56):

I think that one of the saving graces actually is fish, because the French eat far, far more fish and seafood than in places in the UK. So even in a brasserie, you'll find fish on the menu, and they'll deign to not fry it or whatever, then you're okay.

Geoff Allix (05:19):

And so when were you diagnosed with MS, and could you tell us a bit about that diagnosis and how that went?

Nigel Bartram (05:23):

Yeah, I was diagnosed in 2009, but the first symptoms started appearing in 2003. And the reason for the delay was, I guess, twofold in the diagnosis. Firstly, that my GP, while I wouldn't expect him to have been able to diagnose MS, really ignored things that were happening to me, and just sent me for more and more physio, which of course did nothing at all. At the time, one of the big symptoms was what I call the floppy foot, drop foot. And so that was one cause of the delay. The other was that courtesy of SNCF, the French train company, I had a big accident so I was laid up for over a year and ended up suing the rail company. So that totally disrupted life, including getting on the trail of whatever it was that was causing the problem.

So I was diagnosed in 2009, as I said. Immediately after diagnosis, I had to go back to the UK for a week and left my wife, and the neurologist sent the results through. And in French, MS or multiple sclerosis is called sclérose en plaques, SEP they call it, for MS. And my wife is really, really bilingual, but you can only ever be totally bilingual, or you can only be bilingual to the extent you've lived in the two languages through the same life experiences. So of course, she's never had any cause to know what SEP or MS in French was, so she immediately Googled and was appalled to find out what it was that was wrong with me.

And I think it's a fairly common phenomenon that it's often tougher for the partner, for the wife or for whoever it is that's the bystander in this, than it is for the person themselves. Because I mean, we're helpless to some degree, although if you haven't got primary progressive MS then there are meds now available. They just haven't the faintest clue. And for me, it was actually a welcome relief, because I'd had this bag full of things happening over the preceding six years and I now had an explanation for it. That wasn't good news, obviously, but at least I had some rationale to explain what had been happening to me.

Geoff Allix (08:12):

That's true. And for me personally it was like, I haven't got a tumor in my brain, or something. You start thinking, "What else could it be? It's something going on neurologically." And so it could have been worse, there is that.

Nigel Bartram (08:28):

Yeah. Well, I think your imagination is better than mine. I didn't even think... What on Earth is causing the incontinence, whatever's causing my foot to drop and me trip up everywhere.

Geoff Allix (08:43):

And when did you come across OMS, and how did that go?

Nigel Bartram (08:49):

Yes, I came across OMS courtesy of... I don't know if you know the magazine New Pathways.

Geoff Allix (08:54):

Mm-hmm.

Nigel Bartram (08:57):

I can't remember how this happened, but anyway, I was in contact with the editor of New Pathways, and he told me about an event which was taking place in Brighton, where [inaudible 00:09:11] and Craig Hassed was there as well and was giving a conference in the Amex center there. So I went along, that was in 2014, and I absolutely bought what I was hearing.

And I was nowhere near on the OMS program, but I found over the course of the preceding years that I probably did the shopping most of all, more than my wife. And I found I'd gone off red meat almost totally. And so the family are complaining, "Why are you giving us all this chicken?" None of them liked fish, so I didn't stick my neck out that far, but the things my body was telling me that it no longer wanted. So actually the food side of it really didn't give me a big, big problem, because I was mentally and physiologically unconsciously heading that way in any case. So that's how I came across OMS, and then the following year I was lucky enough to go on a retreat, a weeklong retreat in Ammerdown. So that's my OMS story.

Geoff Allix (10:25):

And you mentioned in one of the three things to know about you in the show notes that OMS may have saved your life. So that's quite a powerful statement, so could you tell us about that?

Nigel Bartram (10:43):

Well, a powerful statement made by a non-medic, non-scientist. You have to take it with the caveat. Yeah, it was coming up on three years ago, I was admitted into A&E well, twice actually, so they bundled me out the door at two o'clock in the morning the first time. And it turned out to be pancreatitis, which is probably caused by a gallstone escaping the gallbladder. I got septicemia, and I got a couple of other things. So I was six weeks in intensive care. And it's my honest belief, but I say it's an untestable thing to say, but that my body wouldn't have been strong to withstand all that.

The surgeon who subsequently took out my gallbladder to avoid any repetition with gall stones, he said... Because I was questioning whether, because it was the first time anything like this ever happened, whether it was necessary. And he said, "Well, about 50% of people who get pancreatitis like you die. So you're lucky to have escaped that. And then you had septicemia on top of it." And so that's my belief that it was some inner strength that really got me through it. It was very challenging to keep to the diet, to keep to the food regime in hospital, with hospital food. [inaudible 00:12:30].

Geoff Allix (12:30):

Yes. I've had some infusions, and I found that staying in hospitals can be somewhat problematic, but yeah. Thankfully not for as long as you, so I could manage it for a few days, things being brought-

Nigel Bartram (12:45):

They allowed my wife to come in with meals stuck in the fridge for a couple of days’ worth. So a mixture of starvation and brought in meals got me through it.

Geoff Allix (12:59):

So you've touched on your book, so if we could change a little bit and talk about this, so it's a hugely exciting project you just completed, about to launch. And the book is called MS A Funny Thing, which is an illustrated collection of humorous essays that you've written through the years about your experience with MS. So could you tell us a bit about the book?

Nigel Bartram (13:20):

Yeah. Sorry, just to slightly correct what you said. Well, first of all, the full title is MS A Funny Thing (well sometimes!), not always. And secondly, that I mean, I've got two or three stories in there, but I didn't want a book about my experiences. I want a book about lots of people with MS experience, and therefore it's a collection of the stories and a couple of poems by people that I've garnered over the years. So yeah, it's an illustrated book, each story or poem is illustrated by a funny drawing or painting done by professional artists.

The genesis actually came about on the OMS retreat because I was really surprised, agreeably so, by the real positivity that I found amongst my fellow retreatees. I don't know what I was really expecting, but plenty of laughter, lots of bonhomie, and so on and so forth. And so I thought, well, this is good. People with a sentence of MS don't necessarily throw away their humorous side at all. And the two facilitators, one's Dr. Craig Hassed, the mindfulness guru, and Dr. Keren Taylor, who's a consultant psychiatrist and works under the OMS umbrella. I bounced the idea off them of a book exactly as it's turned out and asked them what they thought. And they thought it was a very, very good idea. So I floated it to the group, who all liked it as well. So I was then able to tap a few members in the group for stories. And that was really the start of it.

Geoff Allix (15:29):

And has humor helped you deal with some of the challenges of MS?

Nigel Bartram (15:35):

I guess so. I never really thought about it in those terms, because looking for the funny side of things, and not in a desperate search, but through difficulty, often in retrospect, you do find something to laugh about, something that wouldn't have happened to somebody else if they'd been able bodied or not been in that particular situation because of the MS symptoms causing that. And through the book, being able to talk to other people about their experiences and helping them write up in some cases their experiences, and they're genuinely funny.

Geoff Allix (16:26):

And another special thing about the book is that you've dedicated all the proceeds to several nominated MS charities. So what compelled you to make that decision? Why did you decide to model the project this way?

Nigel Bartram (16:42):

Because I don't need the money. We don't need the money, particularly. I thought that... Choosing the charities, that they have given me a lot. So it's a way of paying that back, hopefully with dividends. So it was pretty much a no brainer to do it for those two reasons.

Geoff Allix (17:10):

And I've heard that there's an interesting backstory with how you came to work with the illustrator for the book, so could you tell us a little bit about that?

Nigel Bartram (17:22):

Yes. The idea for having illustrations came from a friend in London, and at the time one of her brothers was doing an art course, and I said, "Yeah, it's a great idea, but where do I find somebody to do the illustrations?" And as I said, her brother was doing an art course at the time, so she said, "Well, I'll get my brother to post something on the notice board," which he did, and there were a couple of responses, one of which turned out to be the person that did probably about the first 12, 15 illustrations, was an Italian student studying in London at the time.

And who she termed her favorite auntie; it wasn't actually an aunt, a blood relation, but her favorite family friend; had MS and quite severely disabled. And so it obviously chimed with her as a cause. But I think what also within that struck a chord was that despite I did have a Zoom with her so-called auntie one occasion, who was in a wheelchair, unable to use a mouse so using eye movement to control the cursor, but was nonetheless chirpy. And I think that that probably resonated a lot with the illustrator. And so for a pittance, she did the illustrations, and exercised a lot of patience in dealing with somebody who is completely unartistic, and on a good day can do a half sensible brief and on a bad day nobody can understand what I'm thinking about.

Geoff Allix (19:12):

And since we've whet everyone's appetite about the book, we have a special treat for our listeners, and Nigel's going to read one of his essays from the book. So it's the first author reading we've had on the podcast, so please take it away. And could you share the title and a little context on the piece that you're going to read for the next few minutes?

Nigel Bartram (19:34):

Yeah. Well, this isn't one of my stories, because I wouldn't lay claim to having the best stories in the book at all. This is one I selected it because it's quite punchy and not too long. So I thought I didn't want to send your listeners off to sleep, but if I did, with a smile on their face perhaps. But anyway, so the title of this, it's by somebody called Ian Daly, and the title is MS, Walking Sticks, Waterboarding, and Much More.

Multiple sclerosis is an insidious disease. The changes that it brings about can seriously affect your life, without you immediately realizing. For me, the first and possibly hardest change to come to terms with was needing assistance to be able to get around. For context, I was a reasonably fit 50-year-old man who would walk approximately five miles a day. I loved to walk. I've always tried to preserve some sense of humor when dealing with MS and its sackful of issues. I probably laugh at things that I shouldn't, say things that cause friends to look at me, and I suspect silently tut. Consultants and nurses roll their eyes, but I usually get a laugh, and that's what matters. It's my chronic illness, and I'll take whatever pleasure I can from it.

Anyhow, jump ahead a couple of years, and I'd started to find walking difficult and falls were becoming more frequent. My legs had stiffened up; controlling them was becoming ever more wearisome. The usual test, two consultants plus an MRI, and I'm awarded a title of MAM with PPMS, middle aged man with primary progressive MS. Hooray! I remain disappointed that there isn't a badge, some form of certificate, and media recognition. With legs that were always tired, I elected to use a stick to help keep mobile and hopefully more stable. Rather than burden the NHS in innumerable physiotherapist and occupational therapists, who I suspected have better things to do, I ordered an adjustable stick through the internet. It arrived and it was reasonably successful in enabling me to walk short distances.

Accepting I was now MAM with PPMS who needed a stick was slightly harder to come to terms with. I needed to shake off this pride thing. It seems this is a common experience and is the subject of many "do whatever you need to do to get by and stay strong" articles over the internet. Due to a rapidly wasting left leg, I soon became MAM with PPMS who needs two sticks. Isn't life grand? Walking short distances was now possible, although my mean-minded MS probably reasoned that I was getting around too well with my two sticks; with cushioned hand grips, no less; elected to introduce severe vertigo for good measure. So I now find I'm walking with two sticks across the deck of a ship during high seas wearing roller skates. Superb.

Incidentally, I was once visiting a doctor with my two sticks and severe vertigo for a series of blood tests. I was discussing weight gain with the nurse, and the fact it's hard to exercise when you have two sticks, weak legs, and vertigo, as you do when someone is sucking bucket loads of blood out of your arm. "Have you tried a treadmill?" says the nurse. Fortunately, she finished extracting blood and was concentrating on filling buckets and applying the useless cotton wool bandage to each of my shoulders, so didn't see my wide-eyed stare, and although I do say myself, magnificent eye roll, combined with my mutter of "Jesus" under my breath. Some people have very little idea of how lucky they are not to go home without having been hit by an office chair.

So MAM with PPMS who needs two sticks now has a further issue: stairs. I've come to detest stairs. They have the ability to hurt my knee in a uniquely painful manner. I attempt to minimize this by using my arms on the banisters to take some of my weight. This only really works on the way down. On the way up, it's a matter of hauling myself along while trying to lessen the weight on my leg and the searing pain in my knee joint which it causes. I can't use my sticks, as I need to hold onto something. Remember the vertigo? I suppose I could try a treadmill. "You need a stair lift." "What is it I now need?" "A stair lift." So MAM with PPMS who needs two sticks becomes MAM with PPMS who needs two sticks and a stair lift. Excellent. To be fair, I rate the stair lift as one of the best inventions of mankind. Okay, there's the wheel, the car, sliced bread, gin, and the internet, but really, I can now get up and down stairs.

It does however come with a few tiny issues. Issue one. The stair lifts are generally designed for the elderly and even more infirm than I; their operation reflects this. Incidentally, I have nothing against the elderly. Some of my oldest friends are elderly, and I hope to survive to join their ranks one day, PPMS permitting. Anyway, I press a button and go upstairs. Pause to count grains of sand. Nothing happens for what I'm told is five seconds. It seems infinitely longer. Nothing apart from a very loud screech from the unit, no doubt to warn any other parking elderly person in the vicinity that something's about to happen and that they should dive for cover. The screech is loud enough to hurt my ears. Dogs run down our road to get away from the sound, whilst bats, no doubt attracted by the high frequency, try to get in the window. Being of a practical nature, I've removed the cover, voided the warranty, and unceremoniously jammed an ear plug into the speaker. It dulled the screech a bit, but I can still hear it, as I suspect all the dogs in the neighborhood can.

Issue two. After a five second delay and the eardrums have perforated, we're moving. As far as I can detect, there are three speeds: very slow, slow, and a bit slow, like my walking these days. When the engineer came to fit and program the unit, I was watching it as it made its leisurely way up and down the stairs, configuring the motor all the climb and corners. "Can you make it go a bit quicker?" "No. Sorry. That's it." I'm in no position to argue. Without it I'm confined to one floor. Admittedly, it'd be one of my choosing.

Third issue. Speaking to the company which makes the stair lift. Again, don't get me wrong, I know they have a specific demographic they target for sale, and that's grand. What they do not appear to acknowledge is that everyone who needs a stair lift is stone deaf and has a man with a red flag to walk in front of their car. Indeed, I have the hearing of a bat, and until recently owned an extremely large and very fast motorcycle. That was another casualty of the MS progression. Anyway, I digress. An example will be the call to let me know when the engineer was arriving to install the lift. "Hello? Is that Mr. Daly?" The lady speaking clearly and louder than I would generally have expected. "It is," I find myself shouting a little, as if trying to join in. "Mr. Daly, we're arranging for our engineer, Adam," not his real name, "to attend tomorrow. Would you prefer AM or a PM visit?" "AM, please." "Great. Would 11 o'clock be a good time? That should give you plenty of times to get washed and dressed and have your breakfast." "Er, okay. That'll be fine."

I'm not used to this level of interest or consideration. Like most people, I normally have to endure the "We're unable to give you a time. AM or PM is best I can do." Appointment fixed; I wonder if I have time to nip out to get the engineer a gift. Nothing extravagant, you understand, just a token. "When Adam arrives, he'll show you his identification badge. If you're not completely happy, please give us a ring to confirm his ID is genuine. He won't mind waiting." "If I'm not happy, I'll bounce Adam down the drive." "I beg your pardon?" "Nothing. 11 o'clock tomorrow then. Yep." You see, everyone must be elderly if they have a stair lift. I've done the thing where you ask for a note that you put on your account, you know the sort of thing, "Please do not treat Ian as an elderly gentleman. He's not elderly, neither is he a gentleman." This makes not a blind bit of difference. It is extremely annoying, until there's a problem or you need something.

About a year ago, I was cruising up to the first floor, coffee in one hand, motorcycle helmet on in order to deaden the sound, and my finger on the requisite button. I arrived upstairs, where I spent some time playing with the internet and drinking coffee. On attempting my return journey, nothing. The whole thing was dead as a dodo. So I telephoned the company to advise them of my dilemma. "I'm trapped outside." I thought I'd go straight for the dramatic introduction, as it would raise a level of medium to high panic.

An entirely reasonable and professional sounding lady began slowly to talk me through a list of resolutions that must have previously worked. Not today though. "Are you able to get downstairs, Ian?" "Of course," my sarcasm nerve had now kicked in, "that's why we spent four and a half grand on a stair lift." "I beg your pardon?" "Nothing. Just thinking out loud. Not really, I'm pretty stuck here." "Okay. Then there's something we can try." The fix turned out to be opening the footrest and then slamming it closed. "As hard as you can." "Really?" "Yes, really." This I did. Everything lit up like a Christmas tree and the warning bleep felt compelled to join in. All sorted. Well, almost. Adam, not his real name, turned up the next day to replace the main circuit board, and at a prearranged time.

After a lot of inane rambling, my message here is if there's something, anything, which can make your life a little easier, then for the love of God, go for it. Walking stick, crutches, stair lift, car adaptations, grab rails, false limbs, parachutes; they're all there to enable you to, or at least some semblance of you. Use them. Walk or shuffle to the park. Point at pigeons with your stick. Make sarcastic comments to call center staff. The possibilities are endless. Life with MS is hard enough.

I was showering the other morning and dropped the soap, such a trivial thing for a non-MAM with PPMS. It's only a small shower cubicle, so I bent double to pick up the soap, slipped, and became wedged in the corner, and to all intents and purposes upside down. It was like being waterboarded. If it wasn't for the grab rail, I'd probably have drowned. How my partner and I laughed. Ian Daly, a middle-aged man with PPMS, who needs two sticks and a stair lift, and a non-slip mat in the shower, and grab rails in the said shower, plus a grab rail to [inaudible 00:32:39] and a stool for the shower.

Geoff Allix (32:43):

Thank you very much for that. That was fantastic. So now that you've whet our appetite with that, how can people get hold of the book?

Nigel Bartram (32:54):

Right, it'll be sold on Amazon in print form and also as an eBook. It's due come out on the 30th of May, which is World MS Day. I believe we chose the date in order hopefully to get a higher profile for it. So it'll be coming out shortly after, I think this podcast is released, won't it?

Geoff Allix (33:23):

Yeah. Yeah. This is coming out May. So you mentioned at the end of May is World MS Day, and also I want to remind our listeners that May is Mindfulness and Meditation Month at OMS. And to mark that, you can tune into a special webinar on May the 17th featuring a live meditation session with Phil Startin. And if you're listening to this episode after May 17th, don't worry, you can view a replay of this or any webinars at any time. And details of registering for the free webinar as well as a link to replays of past webinars can be found in the show notes for this episode. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day. So Nigel, thank you so much for being our guest on Living Well with MS Coffee Break.

Nigel Bartram (33:23):

Could I just interrupt you a second?

Geoff Allix (33:23):

Yep, sorry.

Nigel Bartram (34:16):

Your plug was instantly longer than mine.

Geoff Allix (34:16):

I know.

Nigel Bartram (34:19):

I must just add that just if you go onto Amazon and Google, put the search MS A Funny Thing, there won't be anything like it, so you don't need to remember the full title of the book.

Geoff Allix (34:35):

And we will have links in the show notes as well actually, so you'd be able to get to the book no problem.

Nigel Bartram (34:35):

Okay. Fantastic.

Geoff Allix (34:41):

So one final thing that we normally ask our guests, which is a bit of a tradition that we have, which is that if you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that could help people, particularly new people, adopt the OMS program, what would that advice be?

Nigel Bartram (35:04):

One particular aspect or just one thing-

Geoff Allix (35:06):

No, just anything that you think could help people who are maybe newly diagnosed or maybe new to the OMS program.

Nigel Bartram (35:16):

I think I'd say two things, if I may.

Geoff Allix (35:18):

Yeah.

Nigel Bartram (35:19):

One is that although some people may find the diet difficult to come to terms with, there are so many great recipes that you can get through OMS. You won't be depriving yourself of an enjoyable gastronomy at all. And it is so utterly healthy that whether you had MS or not, it's such a good thing to do. The second thing I would say, and obviously I don't mean to plug your plug, but mindfulness is a real, real blessing because there are tough times. And being able to, I was going to use the word retreat, perhaps that's not the best verb to use; but anyway, to find a place to go to when you're in difficulty which you can emerge from tranquil and at ease with the world, having cured nothing other than maybe anxiety or stress, which is important in its own right, I'd highly recommend that.

Geoff Allix (36:29):

With that, thank you very much for joining us, Nigel Bartram.

Nigel Bartram (36:34):

A great, great pleasure. And do buy the book. And it comes complete with a testimonial from George Jelinek. Can I just read out what he says?

Geoff Allix (36:43):

Absolutely. Yeah.

Nigel Bartram (36:45):

Because he's got a bit of a teaser in there. "There are three things I like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you. Secondly, all proceeds go to worthy MS charities. Win-win. Third, now, what was it, that third thing? I need to take Nigel's sage advice and stop nominating how many points I'm about to make, don't I?" In order to unpack and understand that last comment of George's, you'll need to buy the book and read the preface.

Geoff Allix (37:27):

Okay. With that, thank you very much. And I would encourage everyone, search out the book on Amazon. Actually, I should say that you can do this thing called Smile at Amazon and you can nominate a charity. So not only does the money go to charity from the book, but actually everything that you buy from Amazon, you can nominate a charity, and OMS is one of the charities you can nominate, and a small amount of any shopping at Amazon would actually go to charity.

Nigel Bartram (37:55):

So it's a win-win-win-win.

Geoff Allix (37:55):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode, or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in, and see you next time.

The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

View Details

Welcome to the second season premiere of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. Check out the show notes below that dig deeper into this episode’s topic. You can submit your questions for Jack anytime by emailing them to podcast@overcomingms.org.

Introduction

Welcome back for this season’s second installment of Ask Jack, and have we got a ‘meaty’ topic for you today.

This episode’s topic: meat replacements.

Jack has carefully curated several questions around this topic, and we have solicited some directly from the OMS community. With summer around the corner, at least for those in the northern hemisphere, we expect people will be cleaning off their grills and readying them for action. But since research shows meat is a no-fly zone for people with MS, how do you capture that texture and flavor without the negative health consequences?

Thanks to Jack McNulty, we are about to get some answers. Happy to chat with you again, Jack. We’ve got an audience hungry for advice on this episode’s topic, so let’s dig right into our first question.

Questions

Jack, some people can give up meat itself, but not the taste or texture of it. Are meat placements OK in general within the OMS program? Also, if one does choose to use meat replacements, what should they be on the lookout for in the ingredients? Are there specific ones to avoid?
Do you have any fun ideas for creating meat-like yet OMS friendly foods with ingredients like seitan and tofu?
Jack, what is your absolute favorite type of veggie burger, and how can our audience source your favorite recipe for it?
Switching gears to hear from some specific members of our global OMS community, Linda from Germany has taken to using soy crumbles which have to be rehydrated, making them like chicken or meat. Are they OK to use or are they too processed? And jumping continents but on a related note, Vickie from the US has another soy question. She’s curious about your take on soy curls. She’s not sure if you can access them everywhere, but her understanding is they are extruded and dehydrated soybeans. Can you explain the differences between Soy Curls and TVP?
Here’s a question from Leissa: there are so many different types of vegan meat alternatives. It’s often easy to use these alternatives when cooking for a mixed crowd or for the family when you’re tired and need a quick meal. Can you recommend specific options for a quick, easy, OMS friendly, meat alternative meal?
Nicola from Canterbury in the UK had a saucy question… about Bolognese. She wanted your best advice for a good ragu. She’s used red, green and brown lentils, but others suggest finely-chopped mushrooms or crumbled tofu. What are your thoughts, Jack?
Finally, Jack, I know you’ve been vegan for a long while, so meat has been nowhere near your radar. When one makes a health-based or ethical choice to forgo meat, do you think it’s a good idea to even find substitutes that taste similar, or just leave it behind and explore the bountiful world of other delicious options that are nowhere near the same flavor profile?

Thanks for another illuminating episode, Jack. And I look forward to having you back in the thick soup of more questions on the next episode of Ask Jack, which will premiere on July 6th!

About Jack McNulty:

Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack has operated his own catering business and cooking school, while also finding time to write about cooking. He is currently operating his own subscription-based website providing instruction and recipes supporting a vegan lifestyle. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the OMS Cookbook, and authored the Eat Well chapter in the Overcoming Multiple Sclerosis Handbook.

Jack’s Links:

To get the veggie burger and grilled tofu recipes Jack mention in this episode, click here.
Visit Jack’s website com for mouth-watering OMS-compliant vegan recipes, ingredient information, and to learn useful vegan cooking techniques.
Be sure to check out Jack’s weekly international newsletter – VeganWeekly – written with the aim to inspire people to cook healthy plant-based food.
Jack’s social media links are all here: https://linktr.ee/jackmcn.

Coming up on our next episode:

On May 16, “travel” to Paris to meet Nigel Bartram on Living Well with MS Coffee Break #31. Nigel is from the UK and has been a member of the OMS community since 2014. His latest project – publishing a book of humorous essays on his experiences with MS. You’ll want to smile after hearing his tongue-in-cheek impressions of life with MS, so please tune in!

Don’t miss out:

S4E51b Transcript

Ask Jack #7

Geoff Allix (00:00:02):

Hi, I'm Geoff Allix, host of Living Well with MS family of podcasts from Overcoming MS.

Jack McNulty (00:00:07):

Hey everyone, Jack McNulty here. Welcome to another exciting new season of Ask Jack, a special Living Well with MS Podcast series. I'm excited and honored to answer food and cooking related questions from you, the Overcoming MS Community.

Geoff Allix (00:00:22):

To submit a question for future episodes of Ask Jack, please email us at podcast@overcomingms.org, that's podcast@overcomingms.org. Please check out this episode’s show notes at www.overcomingms.org/podcast and dig into additional information and links on what we'll cover.

Geoff Allix (00:00:41):

And now let's rev up our culinary curiosity and Ask Jack. And have we got a meaty topic for you today? The episode's topic is Meat Replacements. Jack has carefully crafted some questions around this topic and we've solicited some directly from the OMS community. With summer around the corner, at least for those in the Northern Hemisphere, we expect people will be cleaning off their grills and readying them for action. But since research shows that meat is a no-fly zone for people with MS, how do you capture that texture and flavor without the negative health consequences? So thanks to Jack McNulty, we're about to get some answers. Happy to chat with you again, Jack. And how are you?

Jack McNulty (00:01:21):

I'm doing great, Geoff. Thanks. It's certainly good to be back. I'm really looking forward to our conversation today and to answer as many questions as we possibly can get to about meat replacements.

Geoff Allix (00:01:32):

And I think this does come up a lot, doesn't it? I think on other topics we've touched on it because these are questions that do arise very often.

Jack McNulty (00:01:42):

Yeah. I was just reading some studies earlier today as the billions of dollars that are just being poured into the industry worldwide in terms of creating these vegan meat replacements. It's really astounding how much money is going into it.

Geoff Allix (00:02:01):

And even if it's not a meat replacement as such, synthetic meat is coming up now?

Jack McNulty (00:02:07):

Yeah, exactly.

Geoff Allix (00:02:08):

It’s more than just our health on the line here. We're also talking about climate; we're talking about deforestation.

Jack McNulty (00:02:20):

Yeah. Animal rights, those sorts of things.

Geoff Allix (00:02:22):

So yes, absolutely. And so yeah, if people are going to eat meat, then if that can at least not affect the planet, then that's another benefit. We're not talking about that. We're being selfish and talking about ourselves.

Jack McNulty (00:02:35):

That's right.

Geoff Allix (00:02:35):

The health benefits. But yes, I don't want to say it is an evil thing, there's certainly benefits to not chopping down huge amounts of Amazon rainforest.

Geoff Allix (00:02:46):

So we've got audience hungry for some advice on this episode's topic. So we'll dig right in.

Jack McNulty (00:02:52):

Mm-hmm (affirmative).

Geoff Allix (00:02:53):

So Jack, some people can give up meat, but they really want the taste or the texture of meat. So are these meat replacements okay in general with people following the OMS program and if someone does choose to use meat replacements, what should they be looking for in the ingredients? Are there specific ones they should avoid? Are there good go-to meat replacements they could use?

Jack McNulty (00:03:21):

Yeah. I think meat replacements can have a positive role in an otherwise healthy OMS lifestyle and diet. Obviously and pretty much like most everything else, there's a certain degree of personal responsibility involved. And that begins with a thorough understanding of a few things, ingredients, serving size, that sort of thing when you're purchasing something off the shelf in a supermarket. And I think that there are some reasonable factors to consider, for instance if you're looking at the nutritional content in the labeling, I think one of the first places to look is the sodium content. Like any processed or convenient type food, sodium is a big problem. And as we know from the HOLISM studies that have been done, high salt intake is not necessarily a good thing for people with MS, it should be a lower sodium intake. And so I always look at the sodium amount if I'm considering buying something off the shelf.

Jack McNulty (00:04:34):

I like to aim for on a per serving basis, anything that's certainly less than 400 milligrams per serving. Now that's taking into consideration, otherwise healthy lifestyle, and diet, which I do follow. And generally I have a very low sodium intake anyway, and so that's my top amount there. Per serving would be about 400 milligrams.

Jack McNulty (00:05:04):

I take a look at the saturated fat, obviously that's a big consideration for anybody following the OMS program. And so for me again, if anything is less than say two grams per serving, I'm generally okay with that. And that's again with the caveat that, that's for someone that's following an otherwise healthy lifestyle and diet where your saturated fat intake is relatively low.

Jack McNulty (00:05:33):

Fiber is another thing to consider. Most of these products are pretty low in fiber. A lot of that's been stripped out. Some of them are better than others. I like to try to find something that's going to be greater than four grams. I think it's also important to understand that a lot of times, because this is a protein replacement in the diet, and a lot of times you're replacing fiber rich foods in your diet with something like a meat replacer. You're not eating your tempeh or legumes or lentils or something of this nature and replacing it with something else that's going to be much lower in fiber. And so I take that into consideration. So if I do that I either combine it with something that's fiber rich, or I choose a product that's going to have a higher amount of fiber in the first place. That's just something to consider.

Jack McNulty (00:06:27):

I also take a look at binders and emulsifiers. Now these are common ingredients in any meat replacer, or any sort of convenient product. The problem is there's not a lot of information that's been done, not a whole lot on the scientific side anyway that I can find that states whether these products that are being used are, "What's the long-term ramification for human health?" That question is still out there. So while that's dangling, I tend to say, maybe my intake should be a little bit less in those particular areas, so that's certainly a driving force in any decision I'm going to make. The lower the amounts of those binders and emulsifiers the better.

Jack McNulty (00:07:17):

I think it's also important to understand that meat replacements can work as a pretty good transition for some. So, some people that are new to the lifestyle, they're going to be coming basically to the program or possibly with a meat centric, dairy centric, convenience food centric, kind of diet. And to change that from that, to going into something full-blown plant-based that's going to be fiber rich, that's going to create some problems. That's going to create some digestive problems, that's going to create some bloating in the system and that sort of thing. And it's really recommended that the transition to help your microbiome should be three to six months, that sort of timeframe, and smaller portions as you ramp up as far as the information I've been able to find. And so, during this phase, sometimes these meat replacements really work as a nice transitional product to help get you on the right path towards plant-based.

Jack McNulty (00:08:37):

When you do have a lot of problems and you switch over to a plant-based diet and you have this bloating and discomfort, that is a put-off to a lot of people and they walk away from the diet and say, "I don't want to do this sort of thing because it makes me uncomfortable." Understandably so, but maybe it's just you need to allow for a little bit of time into transition into it.

Jack McNulty (00:09:02):

I think the bottom line really Geoff, it's not a meat replacement diet we're talking about, you have to look at this more in micro terms. It's more of a single use replacement. It works sometimes, especially if you're looking at products that have acceptable levels of sodium, saturated fat, fiber, use minimal amounts of binders and emulsifiers, that's probably going to be okay when viewed in context of an otherwise healthy diet.

Geoff Allix (00:09:37):

When we say meat replacements here, we're talking about things that use the trade names, like Beyond Meat.

Jack McNulty (00:09:45):

Exactly.

Geoff Allix (00:09:47):

We're not talking about soy, seitan, those sort of single-

Jack McNulty (00:09:52):

No, not necessarily although, some of those products used for convenience matter.

Geoff Allix (00:09:59):

Yes.

Jack McNulty (00:10:00):

You have to just imagine walking into a grocery store and every time I go into a grocery store, I look at the expanding array of offerings in the vegan section, which once used to be in the corner of the supermarket, now is pretty prominent and it's growing.

Geoff Allix (00:10:18):

Mm-hmm (affirmative).

Jack McNulty (00:10:18):

And so if you look at those things and you see sausages, you see schnitzel, you see the Beyond Meat products, the cheeses, the vegan butters and on and on. It's basically all kinds of foods that are being replaced just more on the convenient side. That's what I'm talking about.

Geoff Allix (00:10:40):

And I would say actually from looking through those fairly extensively, the majority are not healthy on the OMS diet. They're-

Jack McNulty (00:10:50):

That's right. If you look at the sodium, saturated fat, and fiber, that's going to eliminate 75, 80% of the products available today anyway.

Geoff Allix (00:11:02):

Yeah.

Jack McNulty (00:11:02):

So that's a very good way to just sort of weed out all the things that aren't going to work for us. Just look at those three things, that's usually going to be enough.

Geoff Allix (00:11:15):

And it is possible to find some things. I mean, I have to say there was one recently I found it was actually in the frozen vegan section. They had veggie burgers, really if you think the original vegan burger from back in the 60s, 70s, mostly those contain huge amounts of ingredients, probably a lot of oils, but actually there was one that I found, which was really good, it was basically vegetables and because it was frozen, they weren't worried about things to prolong its life. And actually it was sort of held together because it was frozen. So you could grill it from frozen and the numbers were all good. And actually I thought, okay, there's a number of ingredients, they're all vegetables so if I'm going to eat a fast-food burger, that would be a convenient food that I think actually there's not too much wrong with that one.

Jack McNulty (00:12:22):

That's right. And as a chef, I'm just naturally curious about a lot of things anyway. I'm curious about making things myself, but I'm also curious about what's going on in this space, are some of these things really worth it? And as an example, just a couple of days ago, I was in there and I saw a new product that was basically a schnitzel that was made out of pea protein and that sort of thing. It fits within the guidelines of OMS, right? And the sodium content was relatively low. And all these factors I considered, and I thought, what the heck, I'm going to just try it and see how it is. And I came home and I prepared it and ate it. And I was just highly disappointed. I mean the breading fell off, the texture wasn't right, the flavor wasn't there. And so I thought, I can do this better myself using a kohlrabi schnitzel or a celeriac schnitzel or something like this, that's way better than something that's purchased off the shelf. So many times that's going to occur as well.

Geoff Allix (00:13:34):

And I think we [crosstalk 00:13:36], we mentioned taste and texture, and I think that's important as well, because if you were to eat a burger from McDonald's, Burger King, Wendy's, Five Guys, wherever, certainly the basic burger from a McDonald's or Burger King, I don't think it'll be very pleasant on its own well, not unpleasant. It just wouldn't taste of an awful lot. The flavor is coming from the other stuff that's in with the burger, their sauce, the vegetables, the salad, that's where the flavor comes from.

Jack McNulty (00:14:09):

[inaudible 00:14:09] also, yeah.

Geoff Allix (00:14:10):

Yeah. So actually we can still do the elements that make a burger nice. We can add a nice sauce, we can add tomato, we can add lettuce, we can add all these things and some pickles and whatever, all fine. And then it's the texture. So, it's not just taste, it's actually a lot of things like a burger may not have much taste, there's not an awful lot of taste of chicken. There's not an awful lot of taste of a basic burger. A lot of these things don't have a lot of taste and they're just vehicles really, but it's got that chew. And that's really what we're aiming for is the chew-

Jack McNulty (00:14:46):

That's right. We've become very used to the idea of meat in our food that has a certain mouth feel, has a certain texture, that has a sort of umami-type taste that comes from the cooking of the meat, which is the teenager proteins. So these are the things that if you just break it down and look at that, you can think of ways, "Can I replace that in a healthier way without having to turn to that meat or without having to turn to some factory produced product?"

Jack McNulty (00:15:30):

And that really becomes the key or the crux. And I think that it's far more important to develop this excellent eating and cooking habit or this understanding of ingredients, than it is to worry much about, how am I going to replace meat in this recipe that's calling for ground beef or something like that? There are tons of ways to do that. It's just that we have to get beyond that barrier. We have to move beyond that mindset of it needs to taste a certain way, the texture has to be exactly like this and et cetera. We can get it close in a plant-based world, it's never going to be a 100% the same, but my question is, does it really need to be? It's all part of an expanding viewpoint or way of looking at how we eat.

Geoff Allix (00:16:34):

Yeah. And one thing I wanted to bring up is to get that texture sometimes just not overcooking vegetables is one of them, because there's a meal that I've recently... Which I was mentioning to you earlier. Actually I think the Indonesian meal is nasi goreng, it's rice-based. So basically a rice-based meal, it's got a lot of flavor from chili and a nut butter, I think originally it would be peanut butter, but I use almond butter, which is actually quite easy to make yourself from almonds and nothing else but almonds. So it's relatively high saturated fat, because nuts are, but the small amount of that, and then not overcooking vegetables.

Geoff Allix (00:17:19):

So asparagus goes in there, tender stem broccoli, but they literally go in at the end of the cooking process. So there's a lot of chewiness, there's crunchiness from that. And there's flavor from the chilies and the almond butter and soy sauce and so on. But it has everything you need really; it doesn't lack suggest don't think this would be nicer with some chicken. [crosstalk 00:17:44]. It's a meal of itself that doesn't think, actually you've just given me a meal without the meat.

Jack McNulty (00:17:52):

Yeah. And if you can look at eating as a way to just please multiple senses, then you can be quite happy having something that has just many different flavors and tastes and something that's crunchy. So you get that feel of different texture and something that has a lot of aromas, and you are just playing with all of these different senses to create a wonderful experience. And it doesn't necessarily need to have meat to do that. And it certainly doesn't need to have a meat replacer to do that as well.

Geoff Allix (00:18:30):

And so you mentioned, so we've talking about meat replacements on the commercial side of it, but they are also closer to natural ingredients. So do you have any good ideas for creating meat-like OMS-friendly food with things like tofu and seitan?

Jack McNulty (00:18:51):

Yeah. I think the most important thing to consider when you're creating meat, like preparations using various ingredients, such as tofu, seitan, I'd throw tempeh into that mix or ground up mushrooms or these sorts of things. Jackfruit is another, a very good meat substitute. I think the keys here are to create umami and to create texture, and there's some tricks to doing this sort of stuff. So let me just give you some ideas.

Jack McNulty (00:19:25):

To create umami, the ingredients I like to use to create this sort of taste is things like yeast extract, which a lot of people would call Marmite. It's very similar to that. The yeast extract that I would get here in Switzerland is a German product, that's just basically a yeast extract. I know Marmite has some other things that go into it, but basically it works the same.

Jack McNulty (00:19:55):

I think soya sauce, tamari and liquid aminos are fantastic to use. And if you use those in combination with a vinegar, specifically a brown rice vinegar, or a Chinese black rice vinegar, which is fantastic, or even a balsamic vinegar, if you use the soya sauce tamari mixture and a vinegar in combination, it creates a lot of umami and it works wonderfully when you're working it into ingredients.

Jack McNulty (00:20:31):

Powdered mushrooms are another thing that I like to use quite a lot. And so you can buy powdered mushrooms, but I think it's just really simple to just go buy some dried mushrooms. I like shiitake or porcini, are the two that I would use the most. You just bring them home. I have a coffee grinder, so I pop them in the coffee grinder and I just grind them. And then I use that powdered mushroom as a seasoning. So I cut back on sodium and I'm increasing the umami by doing that. It's a wonderful way to bring additional flavor in. And of course, white and yellow miso also worked wonderfully to bring that sort of umami, that meatiness into a dish.

Jack McNulty (00:21:14):

And liquid smoke, which I think we've talked about on the podcast before. And again, liquid smoke will introduce a sort of a hickory or charred flavor to food. You do have to be a little bit careful, not all liquid smokes are healthy, but there are some that are quite good that basically just have water and the aroma that's been extracted. So it's perfectly healthy. There's nothing unhealthy about it. And you're just using a couple of drops to create a big punch of flavor.

Jack McNulty (00:21:52):

In terms of texture, so tofu and seitan come to mind as things that you can play around with, with texture. So tofu I find is excellent. And especially you can do a couple of things with tofu. So I'm talking about firm tofu, not something that's going to be really soft, but a really firm tofu.

Jack McNulty (00:22:19):

And so you unpack it, you drain it, you can pat it dry, cut it up in little chunks. And one thing that I found that works really great is, bring a little pot of water to a boil and then salt it and give it a good amount of salt. It should taste a little bit like the sea. And once it comes to a boil and you've salted the water, put your tofu in there and boil it for about three minutes and then just let that cool in the liquid for about 15 minutes off the heat, drain it, take those tofu pieces, put it out on a towel and just let it come to room temperature. Ideally, you'd want to do this a day in advance and put it in the refrigerator. And it turns into sort of a spongy consistency, that's very similar to paneer and it works great in curry dishes. So it's going to give you a really fantastic sort of experience in a curry dish.

Geoff Allix (00:23:19):

So I just wanted to go into a bit more about what these things actually are. So tofu is entirely made of soya beans, yeah?

Jack McNulty (00:23:30):

That's correct, yeah. So basically it comes from soya milk, so it's made from soya milk.

Geoff Allix (00:23:35):

I was going to get on to it. So is there a concern, because I know that some soya beans are very genetically engineered, genetically modified, and there are risks with soy, aren’t there? So are you careful with, or do you worry about having too much tofu because of too much soy that might have, there's all sorts of things aren’t there, like potential hormones?

Jack McNulty (00:24:03):

Yeah, there's a lot of discussion about this. And without having to go into too much detail, maybe we just talk about soya as a whole on another podcast. But a lot of people do have concerns about it, but then on the other hand, there's a lot of well-respected doctors, nutritionist, et cetera, that are out there that really put that those concerns to [inaudible 00:24:24]. I think the most important thing with soya and soya products is to make sure that you're purchasing something that's not from genetically altered soya beans.

Geoff Allix (00:24:34):

Right.

Jack McNulty (00:24:35):

Which is increasingly difficult to do, but not impossible. And you can find that relatively simple.

Geoff Allix (00:24:42):

Like you said, I think there is a whole episode on soy because I've got load of questions. So tempeh, is that still soy, but has some beans-

Jack McNulty (00:24:55):

Tempeh can be made with a number of different whole beans, but typical typically made from soya. So it originates from Indonesia and basically, it's just the whole bean that's been cooked and then it's inoculated with a mold. It sounds great at this point. And then it's just allowed to age, that's why when you have it it’s compressed and it has that sort of whiteness around it, that's actually just the mold and-

Geoff Allix (00:25:21):

And seitan then is-

Jack McNulty (00:25:24):

Yeah, so seitan is basically 100% gluten. So it's the gluten that's been removed from a wheat kernel and the starch has been washed away from it. And what you're left with is just pretty much a 100% protein and that can be utilized to create meat-like substances by combining the dry ingredient, the gluten itself, sometimes with another kind of flour, like a chickpea flour with an umami rich liquid, or sometimes even ground-up tofu. But basically, you're going to have a lot of soya in it, soya sauce or tamari, that sort of thing. Aminos work well and a lot of heavy flavoring. And then what's critical then is to think about it in terms of making a bread. So as you're kneading the seitan, the more you knead it, the firmer it becomes as an end product. So if you want to create something relatively soft, you just basically mix those ingredients together and don't knead it at all.

Geoff Allix (00:26:44):

So seitan is something you [crosstalk 00:26:46] you would typically make it yourself rather?

Jack McNulty (00:26:49):

No, not necessarily. You can buy a lot of seitan products. Personally, I find that it's really simple to work with. It's really not difficult to make it. And we can put some instructions up in the show notes on how to do that, but there's lots of variables. And so, once you get everything mixed together, then you have to pre-cook it. And so you can steam it, you can cook it in the oven, you can boil it. All of these things have an influence on how the end product or the texture is going to be. And of course, however much flavor you put into it and whatever liquid you're cooking it into, the more flavorful, the better. And that's going to have an influence on how it tastes in the end.

Jack McNulty (00:27:32):

But you can literally prepare a roast, prepare something that looks like a sliced turkey breast or something like this. You can prepare meatballs; you can make burgers with it. There's just so many different ways to think about it. And it's an ancient technique and this goes back thousands of years to the ancient Chinese and Japanese that figured out how to do this.

Geoff Allix (00:27:59):

But would that have gluten in it presumably?

Jack McNulty (00:28:03):

It's quite a lot. [crosstalk 00:28:05].

Geoff Allix (00:28:11):

Good for protein?

Jack McNulty (00:28:11):

Excellent for protein. Not so good if you're watching your gluten intake.

Geoff Allix (00:28:16):

Right. So that's [inaudible 00:28:16], but not gluten. Tofu we're avoiding genetically modified, but good for protein?

Jack McNulty (00:28:25):

Yeah, excellent for protein. Exactly. And I was mentioning, you can boil it. There's another technique to change the texture and that's freezing it. So if you freeze a block of tofu and then defrost that, and let it come to room temperature, you'll find that the texture has completely changed. That has firmed up and in the internal bit, if you cut into it, it is very spongy. And so it's going to readily absorb flavor. But what's interesting is if you cook it, especially if you cook it in a liquid, it will hold its shape much better than if you didn't freeze it beforehand. And so that's just a technique to change a little bit the texture of using something like tofu.

Geoff Allix (00:29:10):

And is it worth getting a tofu press? Do you think to remove what, I see a lot of these things where they say, try and remove as much water. You can certainly buy it now in lots of different forms. [crosstalk 00:29:21].

Jack McNulty (00:29:21):

I don't know, I use double paper towel in the palms of my hand.

Geoff Allix (00:29:25):

Okay. That works.

Jack McNulty (00:29:29):

I don't get too... I know a lot of recipes say, "You got to get out as much water as possible." But I've found that if you get out the surface bits and especially then if you cut it and then press it again, once it's cut, you're going to get out enough and it's not going to have a huge impact. That's my experience as a cook discussing that.

Geoff Allix (00:29:52):

And just to mention you touched on jackfruit as well. That one it's just a single vegetable product, but that's low protein, isn't it?

Jack McNulty (00:30:05):

I believe so, I'd have to check the nutritional info.

Geoff Allix (00:30:07):

I'm pretty sure that one doesn't tick the protein box, but it does tick the other boxes.

Jack McNulty (00:30:12):

Yeah. And people have made a lot of different things with jackfruit, like taco filling, burrito filling that sort of stuff, mixing it with barbecue sauce and you can come up with some really interesting... I use it to make a Bolognese which is fantastic and it works great in that environment.

Jack McNulty (00:30:31):

Another thing you can do is just take an oyster mushroom, just a normal, raw oyster mushroom. If you can envision this, take a fork and just run the fork along the oyster mushroom, and it will break up into strands. And then if you cook that in some tomato-based sauce or barbecue sauce or something like that, once it's cooked and then working it into the sauce, you can really create something that's going to be like a pulled pork or something of that nature. It's really fascinating what you can do with mushrooms.

Geoff Allix (00:31:07):

In the vegan area of my local supermarket, they do a pulled mushroom. I didn't realize you could do it easily with a fork.

Jack McNulty (00:31:16):

Yeah, give that a try. It's really fascinating. It just pulls apart in strands. You don't even need to use a fork, sometimes I just peel it with my hand. It's pretty easy to do.

Geoff Allix (00:31:26):

So we've talked quite a bit about burgers. What would be your absolute go-to recipe for a veggie burger? What would you do if we are getting into hopefully, a summer season in the Northern Hemisphere, and you want something to stick on a barbecue or you want to create a burger, what would be your-

Jack McNulty (00:31:45):

Well, as I like to say, as a good American would always say, "There is no season for a burger, that's all year long." Well, let me give you two ideas. So the very simple idea, you can get like a portobello mushroom, which is in essence a giant chestnut kind of mushroom. You can cut off the stem, just work it in and marinate it in a little mixture of soya sauce and vinegar, like I said earlier, and then just wipe it off on a nice oil grate of a grill and just grill it and just use that as your burger. So there's no need to really form anything else. It itself has the shape of a burger. And then just put it between two slices of some nice whole wheat bun or something like that. I usually do that with a guacamole and a slice of tomato in there, and maybe some chili to spice things up a bit. And that's delicious. That's just a really simple way to do something that tastes quite meaty, surprisingly meaty.

Jack McNulty (00:32:56):

But if I were to make my own and I'll put this recipe up in the show notes, I use a combination of ingredients. So it seems at first like, oh my goodness, this is a lot of ingredients, but they're all doing something.

Jack McNulty (00:33:09):

And so I use cooked black beans, black rice, and chopped brown mushrooms, so that's the protein base. The chopped brown mushrooms are just like chestnut mushrooms, black rice, and the cooked black beans. I get all of that and puree it together. Then to give it a little bit of texture, I'm using ground walnuts and a half a beetroot that's just graded up. Then I start working in my umami flavors now.

Jack McNulty (00:33:36):

And so I use in addition to herbs and spices, I'm going to use a little bit of miso, usually I go white or a yellow miso, which is a little bit milder. I use soya sauce and balsamic vinegar, and to bind it all together I would just use chickpea flour, which works great as a binder. And then sometimes I do add a little bit of liquid smoke into the mixture. I just formulate it into burgers. And then what's really important is I refrigerate it and I refrigerate it for at least a couple of hours. So this is something you can actually do a day in advance, and then you can put it directly on the grill. It functions exactly like a burger would function. And the texture is surprisingly close to a burger.

Geoff Allix (00:34:22):

And chickpea flour, you mentioned that's that same as wheat flour, isn't it?

Jack McNulty (00:34:27):

Yes, exactly. I think that's about as far as I go with burgers. I mean, once I came up with that particular idea and recipe, I just thought, well there's no reason to develop further, I'm quite happy with that one. And the combination of the portobello mushroom with a guacamole or something, which is my wife's favorite, so that's usually the one that we go with.

Geoff Allix (00:34:55):

And you're saying, putting it in the fridge, I actually quite like freezing them as well, because first thing they hold together if they're frozen, but also just because then it becomes a fast food. It's as easy to make six as it is to make one.

Jack McNulty (00:35:10):

That's right. And you can use that same mixture because everything's already cooked, so you can use it. And instead of creating a burger, you can create little meatballs and throw it into your favorite pasta dish or something of that nature. So you're right, freezing is a great way to go.

Geoff Allix (00:35:30):

I think a lot of whole food cooking is more labor intensive, and so I think freezing is a good way rather than making every single meal from scratch, it is more labor intensive than buying ready prepared meals. But if we can make them and then freeze 50%, then suddenly we've got an easy-to-cook meal for next week that we don't have to cook everything from scratch and freezing for a couple of weeks, if not a month or more, it does retain a lot of the nutrition, doesn't it? You said actually things like tofu can actually be improved in some ways form freezing?

Jack McNulty (00:36:14):

Yeah, that's exactly right.

Geoff Allix (00:36:15):

And I think obviously things that sometimes are chili or something like that can actually taste better reheated. I don't know why.

Jack McNulty (00:36:21):

Oh yeah, definitely.

Geoff Allix (00:36:22):

I don't know what's happening there.

Jack McNulty (00:36:23):

I totally agree. Totally agree on that.

Geoff Allix (00:36:25):

So to move on to some of the specific questions from members of the global OMS community, there's two questions and I'm going to ask both of them because they're related. So Linda from Germany has taken to using soy crumbles, which have to be rehydrated, to sub for chicken or meat. And so she wants to know if they're okay or are they too processed?

Geoff Allix (00:36:49):

But also Vicky from the US, has another soy question. She's curious about your take on soy curls. She's not sure if you can access them everywhere. I've certainly not come across them, but her understanding that they're extruded and dehydrated soybeans. So she was asking, could you explain the difference between soy curls and TVP or texture vegetable protein. So both these things sound quite similar, so soy crumbles, soy curls, are they similar things and are they-

Jack McNulty (00:37:19):

Similar in the sense that they generally use soya and that's about where-

Geoff Allix (00:37:23):

Okay. They are quite different. Okay.

Jack McNulty (00:37:25):

So soya curls. Did you say you came across those already?

Geoff Allix (00:37:29):

No, I haven't come across soy curls, but-

Jack McNulty (00:37:31):

I think it's more of an American thing at this point. It's a company in America, that's developed it and it's basically using the whole soya bean. And so the soya bean is cooked, it's dried and then it gets cut up and extruded into these little pieces. And so it needs to be rehydrated to use it. You'd have to soak it in water usually about 10, 15 minutes or so. And then you can start adding all your flavors and then cook it as if you were cooking some meat or something in a frying pan or whatever. You can use it in various products, lasagna, tacos, that sort of stuff. So because it's soya, it's going to be very high in protein. It's going to taste very bland unless you put a lot of flavoring into it, and this is where the ingredients that we talked about earlier, the umami ingredients really come into play.

Jack McNulty (00:38:31):

Now TVP, textured vegetable protein, I think is what that stands for, is generally made from soya. So it's a byproduct of the vegetable oil industry. And so the oil, once it's extracted from whatever bean it is, let's talk about soya. So it's extracted from soya and basically then you're just left with really soya flour at that point. And soya, so that's the fat that's been denatured or taken out of the soya flour, most of the fat.

Jack McNulty (00:39:12):

So then that fat by the way, gets mostly removed using solvents and high temperatures. Just to be aware of that, that's how that gets extruded. But you're left with the soya flour, in that soya flour is very little impact from the solvents that were used. So there are lots of tests that have gone on about that. And there's no real risk there from the human health perspective. But basically, you're left with this processed bit of soya, which then gets formulated in heat into chunks. And then it gets extruded into pieces.

Jack McNulty (00:40:00):

So the pieces themselves are going to be very light and spongy inside once they go through their extruder, which heats them and then they're immediately exposed to colder air, which creates this puffing up, but usually around three times the size and that's what creates that sort of sponginess inside. So they function almost identical to a soya curl in that you have to rehydrate them and then cook them. And if you don't add any flavoring to them, you're going to be really disappointed in the flavor because there won't be much flavor. It'll be very bland and you'll wonder why did I do this? But if you do add a lot of umami to it, they certainly aren't bad in certain isolated situations.

Jack McNulty (00:40:52):

I would say overall, I have used them. I'm not hugely impressed with TVP, I think there's other things that you can use that are better. For instance, okara comes to mind. Okara is what's left over from soya milk pressing. So the soya beans that are pressed to create soya milk, what's left behind, that meaty substance left behind is called okara. It's very common, you can buy it in almost any Japanese store and you can just cook that the same way that you would cook these TVP products and you would have a lot more protein in that particular product than you would using something that's TVP.

Geoff Allix (00:41:41):

Would you say this goes the same for soya crumbles as well?

Jack McNulty (00:41:45):

Yeah. Soy crumbles are in essence TVP.

Geoff Allix (00:41:48):

Right. Okay.

Jack McNulty (00:41:49):

So basically, it's just different names for them depending on where you are in the world. So I forget what they're even called here in the German side, but it's very easy to find them in any sort of health food store. And I use that term health food rather liberally.

Geoff Allix (00:42:14):

So you wouldn't say it's whole food, certainly these things aren't on that, they're not making us healthier, but they're not necessarily-

Jack McNulty (00:42:26):

I try to stay away from that term whole food-

Geoff Allix (00:42:29):

Okay.

Jack McNulty (00:42:29):

Because really, the only thing that's whole food is an apple. There's nothing that's going to get done to it. And so I like to look at these products and say, okay, which one is going to be better? So soya curls have nothing added to them and nothing taken away from them. So in essence, that's going to be closer to the concept of whole food than TVP, which has gone through a process where the fat has been removed from the soya. And then it's processed into flour before it's extruded. So that's going to have something added to it in the sense of solvents and something taken out in the sense of fats. And so, there the alarm bells would go off and I'd want to look into that product a little bit more before saying whether I would use it or not.

Geoff Allix (00:43:24):

Okay.

Jack McNulty (00:43:24):

But people talk about whole food, non-processed whole foods all the time in terms of diets, but it's very rare. The minute you cut into an onion, you've already processed the onion to some degree. So it’s very rare to come across anything that hasn't had some degree of processing, but it's also very difficult to find something that's really a 100% whole food, unless of course you're eating something raw in its natural state.

Geoff Allix (00:44:01):

But these things aren't necessarily bad for you, but just keep an eye on the ingredients, some of them may be over processed, but in general?

Jack McNulty (00:44:09):

Yeah. I would say the soya curls are better than the other products, but it's the thing that everybody's got to decide for themselves. But from my perspective, I would say minimal amounts is probably better than a mainstay of your diet, I wouldn't use them every day.

Geoff Allix (00:44:30):

Okay. And we've got another question from Lisa asking, "There are so many different types of vegan meat alternatives, and it's often easy to use these alternatives when cooking for a mixed crowd or for a family when you're tired and need a quick meal. So could you recommend specific options for a quick and easy OMS-friendly meat alternative meal?"

Jack McNulty (00:44:52):

Are we talking about stuff that you buy that's convenient?

Geoff Allix (00:44:55):

I think it's the convenience. I think she's saying if she's tired, needs a quick meal, feeding the family, what would be a good meat alternative to put in?

Jack McNulty (00:45:08):

Yeah. And I really sympathize with someone that finds themselves in this position. That's not me, but I certainly understand that's not a simple situation to be in. You're working all day, you're tired. Maybe you have a little bit of an MS flare, you have kids to feed and you come home and you have to make something, what do you do? It is tempting to go to the supermarket and to buy something off the shelf and put it on the stove and heat it up or put it in the oven and heat it up and there you go, that is terribly convenient. And that's exactly what the food industry wants us to do.

Jack McNulty (00:45:49):

So I think rather than taking that approach, I think it's much better to invest a little bit more time earlier in the week and make a plan, to sort of plan out a little bit, what am I going to do about food this next week? Get some help in the kitchen. If you have kids, get them to start chopping vegetables, get them involved, to help put things together on the weekend or towards the end of the week that you can freeze or that will keep in the refrigerator for a little bit of time. And so those are the things that I would tend to go with.

Jack McNulty (00:46:21):

You can certainly make vegetable curries that are delicious and incorporate things like tofu or some of the other things that we had talked about today that go in and create this sort of meatiness in a curry. Something served with rice or something, that's going to please anybody, whether you're vegan or not, you're going to be happy with that kind of dish.

Jack McNulty (00:46:44):

I think making something like a big bowl of beans, like a chili or something like this, you can make it in large portions. And like you said earlier, it doesn't cost anything to make 12 portions and it doesn't cost more than making four portions or something. So you might as well make enough that you can either freeze a portion for later or just eat during the week, maybe change it up a little bit and just add some different vegetables in it.

Jack McNulty (00:47:16):

Lasagna is another thing, it's so easy to make a lasagna. And really all you need is a good tomato sauce, you need some good vegetables, prepare those ahead of time. You just go buy the pasta sheets, dried pasta sheets that don't have an egg in them are very easy to buy. You don't need to pre-cook the pasta, which is great. And you just build a large lasagna adding some of the things that we talked about earlier in terms of building those flavors, using vegetables that are going be median in nature, like eggplant or mushrooms or something of this nature, putting something together and boy that lasagna well, I guarantee you it'll be hard to keep it around much more than a couple of days, because it's going to taste really good.

Jack McNulty (00:48:03):

You do need to know how to make a very good bechamel, that's key because a lasagna is very creamy, but that's very simple to learn. I think things like a shepherd's pie is very simple to do using mashed potatoes and a whole host of different vegetables. You can, if you want to incorporate some of these easier meat replacement things like soya curls or okara like we talked about earlier into those vegetables, but don't make it the main star, just have it in addition to a lot of the other vegetables that are there.

Jack McNulty (00:48:40):

You can make a Bolognese, very simple to make a big portion. You can make it very easily so you always have it on hand. Really doesn't take a lot of effort to come home and unscrew a jar of pre-made tomato or Bolognese sauce and make a round of pasta for everybody. That's always going to be a pleaser.

Geoff Allix (00:49:03):

And you mentioned first curry. So if we are looking quick and easy, one thing we mentioned frozen, but I like to have things frozen out, they are sort of for emergency. We just need to eat quickly, low effort meal, but actually curry's really quick that way, so literally we look at onion. So the base is really just starting off with onion. It's going to have curry spices, which are premixed in a tub, but I don't bother. Yes, you could go and say, "Okay, I'm going to grind my own spices and mix them up." Absolutely, you could do. I'm sure you do that. But I buy it pre-made and say, "This is a [inaudible 00:49:51] flavored one, it has the mix already." And it's going to have chickpeas, it's going to have spinach and it's going to have tomato, like soup tomato. I don't think much else goes in there really.

Jack McNulty (00:50:11):

And maybe you can do some roasted eggplant or something. I mean, you can always add different things.

Geoff Allix (00:50:17):

Yeah. You can add different things, but the stuff I've put in there, that's taken me five, 10 minutes maximum. It doesn't take as long as the rice takes to cook. To cook the sauce and the chickpeas, give it a bit of chew to it and some protein. And I mean, I'm talking tin chickpeas here. I mean, obviously, otherwise you have to soak them, but that's a quick meal.

Geoff Allix (00:50:39):

And another one that I like is pasta you mentioned, and [inaudible 00:50:43] type sauce where literally we put in onion, garlic, again tomato, chili. So some fresh chili goes in there and then some vegetables. So we tend to do it with some fresh broccoli and then just with spaghetti. And again, it really doesn't take much longer to cook than the spaghetti takes.

Jack McNulty (00:51:10):

That's right.

Geoff Allix (00:51:10):

And that's a quick and easy meal. So a third point, I personally find the effort from an OMS standpoint is the chopping. So because of cooking more with fresh ingredients, there's more chopping involved. And a lot of chopping, I start to find my hands get really tired.

Geoff Allix (00:51:30):

And so there's two things I like to do. One is to do that at lunchtime and put it in the fridge. So I've got my chopped stuff already to go. And the second thing is there's these things, I don't know what the proper term with it, we call it a [choppy-chop 00:51:45], but I know that's not his proper term. It's, it's a cylindrical sort of device with blades inside it, which has a pull cord, which causes the blades inside to spin very quickly. And it's very easy to use it to chop up things like onions. It's not something where you really want to get that precise, or I need these things to be an inch long, that's not going to do that. It's going to finely chop wherever you put in. It works very well with onions, works very well for mushrooms. So anything that takes a lot of chopping, you can reduce the effort with devices.

Jack McNulty (00:52:17):

That's right. I mean, in any soup or stew or even a pasta sauce or something, you're always going to be starting with something, I'll use the Italian term, like a sofrito, which is basically carrots, onion, celery, and needs to be chopped up. There's no rule that says you have to use a knife. I mean, you can chuck it all into a food processor and just pulse it a few times and chop it up a little bit, that's perfectly okay and that's going to work great. And it'll take literally seconds to make that as opposed to working on your knife skills.

Geoff Allix (00:53:02):

Although I would say from that-

Jack McNulty (00:53:03):

I've got nothing against that-

Geoff Allix (00:53:05):

No, my brother was a chef. And so I would say he bought us a set of proper chef's knives as a wedding present. And I would say a high-quality knife that's kept sharp is so much better and so much easier to use. Yes, you can cut yourself, but yeah.

Jack McNulty (00:53:24):

It's much safer. I have high-quality Japanese knives that are just razor sharp. The test that we always like to do is holding up a piece of paper in front of you and just actually slicing it without any effort.

Geoff Allix (00:53:37):

Yeah.

Jack McNulty (00:53:37):

And goes right through the paper, which is great because it requires no effort to cut anything.

Geoff Allix (00:53:43):

And another question you've mentioned Bolognese, so Nicola from Canterbury in the UK has a question about Bolognese. She wants your best advice for a good ragu. She uses red, green and brown lentils, but I suggest finely chopped mushrooms or crumble tofu. What are your thoughts on that?

Jack McNulty (00:54:02):

My thoughts are it sounds good, what time is dinner? It doesn't need to be much more than that. I think that sounds fantastic. So a real true Bolognese is basically going to be the classic Bolognese, is going to be carrots, onions, garlic, celery, all sweated a little bit, by sweating that means basically just in a pan over relatively low heat and just stewing in their own juices until they get soft. So the traditional one then will have chunks of meat, not ground beef or ground meat, it'll have chunks of meat. And then it's cooked in a meat broth. And it's basically at the end, sometimes it's finished with a little bit of butter or cream, but also that's an optional thing. What people find fascinating, a true Bolognese actually doesn't have tomato in it.

Geoff Allix (00:54:55):

I was going to say you didn't mention that.

Jack McNulty (00:54:56):

Yeah. A true one doesn't have tomato in it. If you go to Bologna and you're in Italy now I recognize most of the world doesn't know that. And most of the world thinks that a Bolognese or a ragu has tomato in it, which is fine you can do that. It's just a different kind of sauce, but that's fine. You can use the same sort of technique. So instead of meat, in this particular case, you do these vegetables, but then you can work in some of the things that we talked about, the jackfruit, lentils, mushrooms, okara, soya curls, if you want to, those sorts of things, what I would suggest is cooking that protein element separate and introducing a good amount of these umami type flavors we discussed earlier into those elements. Once they're cooked, then putting them into the sauce and just finishing it.

Jack McNulty (00:55:51):

I think that that gives you a better overall finish than if you tried to cook it all together and add soya sauce into the tomato-based sauce. It just doesn't come out the same. I think you can control the flavors much more if you cook that element separately and then work it into the sauce. And make a big portion because you can freeze it or can it later.

Geoff Allix (00:56:15):

So finally, I know you've been a vegan for a long while. So meat has not been anywhere near your radar, when one makes a health-based or ethical choice to meat, do you think it's a good idea to even find substitutes that taste similar or just leave it behind and explore the world of other delicious options that are nowhere near the same flavor profiles? So do you actually think, ultimately, we shouldn't be looking to replace the meat, we should actually just be looking for a whole range of different delicious foods and not even think about a meat alternative?

Jack McNulty (00:56:54):

Yeah, it's an excellent question to ponder, Geoff. There are many approaches I've heard that people take when first starting out on a plant-based diet or within the OMS community, personally I think it could be a mistake to rely too much on the meat replacement options at the outset. I think it's important to understand the role that meat played in your life previously, review maybe some of your favorite recipes from that timeframe and figure out ways to replicate the flavor profile without relying on meat replacers. So that's putting the onus right back onto everybody out there, all our listeners. It's really up to everybody to just say, “I don't really need these meat replacers in my life.” There are plenty of other ingredients that are out there that I can explore. And as long as I learn a few things, how to season something, how to put some additional flavor in, how to change textures, then I can really move a great deal further and I can get beyond some of the meat replacers.

Jack McNulty (00:58:14):

I just think and I've seen this so much. I think people tend to take the path of least resistance. And for example, in the vegan baking world, I just get so frustrated when I just look at these recipes that are developed and almost everybody is using just the easiest solution to figure out how to replace butter in a pastry dough, right? And so they turn to coconut fat or they turn to vegan butter, which is essentially just margarine and they just go from there and there are just other ways to do it. And it just requires a little bit more effort to figure that out. And I think the same thing applies in replacing meats. I think it's extremely simple to heat something up that is basically a convenience food, that's not a problem. It may even taste amazing with exactly the same texture as meat. And unfortunately it just doesn't do anything to benefit your health. And for us, I think that should be a primary consideration.

Jack McNulty (00:59:22):

But having said that, I also think there's some room for people to just work slowly into transition. I think there's some room out there to utilize some of these ingredients, especially if they're lower in sodium, lower in saturated fat, don't have a lot of binders or emulsifiers. And I think you can use them wisely at specific times, not necessarily even for convenience, but to please other people.

Jack McNulty (00:59:56):

Maybe you're having a dinner party, not everybody there is going to be following the same diet as you, but you want to serve something that's going to be generally familiar to most people. And I think that's a good place to begin to think about that, to do it every day, I would recommend staying away from that. I think I mentioned this earlier, it's not a meat replacement diet we're on, it's using strategically some meat replacers that are generally healthy or to use these meat replacers strategically to create meals that are familiar and comforting to other people, but also to ourselves sometimes. And I think that, that's okay as long as it's done minimally and as long as it's done with using ingredients that are not necessarily going to be unhealthy.

Geoff Allix (01:00:56):

Okay with that, thank you very much for another illuminating episode, Jack. And I look forward to having you back in the hot seat for more questions on the next episode of Ask Jack, which will premiere on July 6th.

Jack McNulty (01:01:08):

Thanks, Geoff. Just a sort in closing, I just encourage people to maybe think about breaking the reliance on commercially prepared and heavily processed foods, as much as possible. In other words, just encourage people to learn how to cook for themselves a little bit more and certainly how to purchase more ingredients. The world is very large and broad when it comes to the options that are available. And I think it just requires just a little bit of effort there.

Jack McNulty (01:01:41):

It's also, this whole meat replacement business is a very [fluid 01:01:47] environment right now, there's just billions of dollars being poured into creating new foods in essence. And I think it's worth keeping an eye on for sure, but a wary eye. And I think it's important to not necessarily just jump right back into the same sort of habits that maybe got us into a health situation in the first place, meaning too much reliance on things that are convenient and unhealthy for us.

Geoff Allix (01:02:25):

Thanks for listening to this episode of Ask Jack. Please check out this episode's show notes at www.overcomingms.org/podcast, where you'll find all sorts of useful links and bonus information.

Geoff Allix (01:02:36):

If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org. You can also subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode of any of our podcasts.

Geoff Allix (01:02:52):

Ask Jack is kindly supported by grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly eNewsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

Geoff Allix (01:03:38):

The Living Well with MS family of podcasts is for the private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

View Details

Bio:

Mathew Embry is an internationally recognized documentary filmmaker and advocate for people and families dealing with multiple sclerosis. After being diagnosed with MS in 1995, Mathew is currently symptom-free of MS and freely shares the science-based strategies he uses to control his MS on MS Hope.

Questions:

What are the core principles of the MS Hope approach?
How does that align with Overcoming MS?
What does a typical Matthew Embry day look like?
How often should you exercise?
I’ve heard you say, “No cheat days”. Does this apply to exercise?
How do you measure progress?
What type of exercise is best for people with MS?
What about people with mobility problems?
What about people with heat issues?
More weight or more reps?
One last question. For someone newly diagnosed with MS what would be your key piece of advice?

Links:

Learn more about Mathew’s nonprofit organization, MS Hope
Check out MS Hope on Facebook
Follow Mathew on Twitter
Follow Mathew on Instagram
Watch MS Hope videos on YouTube
Watch Mathew’s documentary, Living Proof

Coming up next:

Tune in on May 4, 2022 for the next new episode of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. In this instalment, Jack devours a topic many of us grill-loving folks are hungering to learn more about – meat replacements.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within about 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E51 Transcript

MS Hope: A Conversation with Mathew Embry

Geoff Allix (00:01):

Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast or in whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org, or you can reach out to me directly on Twitter, @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode.

Geoff Allix (01:05):

And now let's meet our guest for this episode. Welcome to today's episode of the Living Well with MS podcast. On today's episode, I'm joined by Mathew Embry. Mathew Embry was diagnosed with MS in 1995 and is now living relapse free, which he attributes to lifestyle modification, following recommendations from his father, a research scientist. He created the documentary Living Proof, available worldwide on Amazon Prime, to discuss his life story. He also has the MS Hope website, which includes resources about his recommendations for lifestyle modification. Although there are some differences between the MS Hope approach and OMS, there are many more similarities. So welcome to the Living Well with MS podcast, Mathew Embry.

Mathew Embry (01:51):

Thank you for having me on the podcast. I really appreciate it.

Geoff Allix (01:55):

And for any of our listeners who aren't aware of who you are, and it is in the show notes about your documentary, Living Proof on Amazon Prime, which I'd definitely recommend. But if they are unaware of you, could you just tell us a little bit about yourself? Where you're from, your life, and MS in your life as well.

Mathew Embry (02:17):

Yeah, sure. I mean, again, my name's Mathew. I live in Calgary, in Canada. I'm 46 years old now... Or sorry, 45. I'm turning 46 this year.

Geoff Allix (02:29):

It's my birthday next week and I'm 51 next week.

Mathew Embry (02:33):

Yeah. And I was diagnosed with MS in 1995, when I was 19. And what I've done is, over the years and over the past decade, I guess, I really tried to share my journey with people all over the world, and how I've implemented science-based nutrition, exercise, and vitamin D and just different strategies to be able to control my MS. And it's been really interesting because my job is, I'm a filmmaker. That's what I do. I'm a director, producer. So I've been able to integrate both my journey with multiple sclerosis and my craft as a filmmaker to be able to share information with people that will hopefully make their lives better.

Geoff Allix (03:21):

What's the main name of the approach? MS Hope approach, would you call it? I know you sort of have the name of the diet and you have the…

Mathew Embry (03:30):

Yeah. Well, the diet's actually called the Best Bet Diet, and that was created by my father, my dad, Ashton Embry. He is actually Dr. Ashton Embry but he's a research scientist... He's not a medical doctor, he's a research PhD. He created that diet back in 1995. And the diet is... You can find it on MS Hope.com. And MS Hope.com is kind of an outreach website. It's one that we tried, I tried my absolute best to distill the information to make it as easy for people as possible to learn about it and to be able to implement it into their lives.

Geoff Allix (04:09):

What would you say are the core principles then of your approach?

Mathew Embry (04:14):

The core diet principles are dairy free, gluten free, low saturated fat, low sugar. We don't have beans in the diet either. Eggs are limited. And for sure, we ask people, make sure people get their... If they're allergic to eggs checked, things like that. And lots of vegetables, lean meat, fish, lots of fish, if you can get it. And then we have a whole list of supplements, high dose vitamin D and then regular vigorous exercise is part of the program.

Geoff Allix (04:54):

Okay. So I think, yeah, there is a lot of overlap between your, the diet, and the whole MS Hope approach and Overcoming MS, certainly. And I would say to people who are new to these programs, I think those overlaps, and I hope you'd agree... Those overlaps, things like dairy, they're the big hitters, really. Well, exercise is one, you really... And that's a classic thing. My father who had MS, he was told not to exercise. So the approach has drastically changed. I'm trying to think of other things because there's so many overlaps really. And the diet's quite similar, low saturated fat, low process or no processed food. Definitely no dairy. Vitamin D's in both of them. Exercise, both of them. What's your thoughts on smoking? That's one didn't come [crosstalk 00:05:47].

Mathew Embry (05:46):

No, no, no, not at all. Smoking's not... A no go.

Geoff Allix (05:48):

I kind of assumed that because it's just bad for you, but you don't mention that. Yeah. Overcoming MS, they do say no smoking, straightaway. Definitely. Not just on the fact that it's a really bad idea for everyone, but actually specifically for people with MS. So what does a typical Mathew Embry day look like?

Mathew Embry (06:10):

I get asked that question quite a bit and it's... I don't want to come across like it's boring, but it's certainly routine. And I think, yeah. I've got two children, I've got two dogs and I manage a career as well. And for me, I try to... It's very routine. I get up, I have a breakfast that's in line with the Best Bet Diet. And then 90% plus of the time, I exercise right away. And if you get ahold of me and if you want to work with me, you'll often get an email from me saying, "Well, I'll meet you after 10:30 or I'm available after 10:30 in the morning." Because that time for me is work too. It's getting to the gym, it's doing runs. It's getting some activity. And it's a huge part of my process. Just, it's major. And it's somewhat non-negotiable. If I can't get that workout in the morning, sometimes you'll find me on the... Downstairs, on our elliptical trainer at 10 o'clock at night. It's so, such part of the fundamentals of my program.

Geoff Allix (07:14):

So it doesn't have to be morning? It's flexible around lifestyle?

Mathew Embry (07:19):

It is. And I really try to share with people, if you follow me on social media, things like that, I try to share with people how to do that because it's not easy to be able to find that time. So I try to share tips and strategies that I've learned to be able to make that time daily. And that's about eliminating things in your life, but it's also, to be able to add it. Because that can be really hard for people. And then the remainder of my day is, like most other people, I work. I have to do my job. You know, I have to have my responsibilities with my family, family responsibilities.

Mathew Embry (07:52):

I try to make time for prayer and meditation, these mindful pieces. And that can be walking too. But definitely time to be in my own head, and training that mind to control negative thoughts, which is... That is not an easy process.

Geoff Allix (08:10):

Yeah. We are recording this a few weeks before it actually goes out, but we're right in the middle of the Ukraine war, really. Which I mean, especially over here, it's very easy to start doom scrolling through news and that's another thing. I mean, it's a core part of OMS. One of the pillars is meditation and mindfulness, which you just touched on there. But I know that's... It's not, again, it's not really mentioned, but would you say that's an important aspect? Whether that be traditional mindfulness or meditation, like audio, or it could be prayer, you mentioned. It could be... I mean, I think walking. Why we say mindfulness rather than meditation I think is, you can be mindfully walking. You can be mindfully riding your bike.

Mathew Embry (09:02):

Yeah. I agree.

Geoff Allix (09:03):

You don't have to be sitting there with your fingers in the right pose and doing some yoga mantra.

Mathew Embry (09:10):

Yeah. I totally agree with you. And I think that those practices are really personal. I don't feel like I should, that I have the right or anything to tell someone how to do that. I just think that there's a lot of ways that you can access that. Well, it's tough because you have to make the time. Right? So once you make the time, then it's about implementing a practice. And I agree with you. Going for a long walk in nature or even just finding that space mentally to be able, just to stop. Try to tune out the negativity, and just... It's training the mind. And that's how I see it. I see it like it's a discipline thing. Diet's discipline. Exercise is discipline. And the mindfulness is being disciplined with what thoughts you're going to entertain and how you're going to learn to control those two streams, almost. Like the good and the bad thoughts coming at us. It seems to be a little uncontrollable.

Geoff Allix (10:01):

Yeah. I think it was someone, it might have been Jon Kabat-Zinn or someone like that who said, "If you can't find half an hour for mindfulness every day, you need to find an hour for mindfulness every day." Which I think is a pretty good quote.

Geoff Allix (10:15):

So, talking about exercise then. You're sort of saying you exercise every day. I mean, I've seen things where they've said actually... I've looked through loads of exercise programs really just to sort of advise people. I've tried to sort of dip into most of the big ones, whether that be the MS Gym, Gretchen Hawley. You know Gretchen and-

Mathew Embry (10:41):

Yeah.

Geoff Allix (10:41):

... Gretchen does a lot of stuff with us, and a lot of those MS specific exercise things, and some of them are very much like, oh, no more than five times a week. Some of them seven, some of them even down to three, I think. But I think you say every day you do some exercise, is that right?

Mathew Embry (11:02):

Yeah. Yeah. I do. And again, I'm not an expert or a doctor, so I'm not giving advice for people to do this.

Geoff Allix (11:12):

This is the advice of a filmmaker.

Mathew Embry (11:13):

I don't want to come across... Yeah. This is what I do. And I think that I share that journey where this is what I do every day. I try my best to exercise every single day. And I think people have posted on my thing, "Oh, you need a rest day," or "You got to give your body a break." And I just don't buy that. I just don't, because there's been too many times in my history and the last 20 years where I've been, let's just say fatigued, where I'm just super tired, and mentally I get some brain fog. If I would've taken a rest day, I would've sat down, but I have gone to the gym or gone for a run and I feel a hundred percent better afterwards. I've like restarted my day. And so I had to learn that in my process, but I mean, there's just too many times that that's happened.

Geoff Allix (11:54):

But can you adapt what you do? So, I mean, like... So personally, today I have a weekly session with my, we have this neuroactive thing, which is we have a neurophysio and she does a weekly session with us. It was quite a muscle workout. You know, I was doing a lot of dead lifts and my legs are feeling it definitely. But then tomorrow I would be like, okay, tomorrow's going to be more of a cardio day. I'll probably go on the bike. I'm not going to work the same muscles. I'm going to be looking at... So.

Mathew Embry (12:32):

Sure. Yeah. That makes sense.

Geoff Allix (12:34):

Does that work? Is it like, okay, well, if I've done a lot of cardio today, I could do a lot of strength tomorrow or swimming or something different?

Mathew Embry (12:46):

Well, yeah. I mean, again, I'm not an expert in this, but one thing I have learned over the years is I just kind of listen to my body. And my body will give me cues for what it almost wants to do. And I just kind of listen. I'm like, all right, you want to do this today? Let's go do this. So people post, "Can you set up a regimented workout plan?" I'm like, "Well, I can't really, because I don't really know what I'm going to do."

Mathew Embry (13:04):

I know I'm going to the gym. I know I'm going out to nature, but once I get there, I kind of change it up. And that's also part of my process that I share. Sometimes that changing it up is an internal dialogue that's happening while I'm doing it. And I think that's another part of the process. Where, I get to the gym, I'm only going to be here for 20 minutes, but then 15 minutes in, I'm renegotiating with myself to go a little bit further.

Geoff Allix (13:30):

Yeah.

Mathew Embry (13:32):

And if I'm too structured, then I find, I can't have that same, listening to what the body wants. But I wouldn't overdo anything if that makes sense.

Geoff Allix (13:42):

Yeah. So you're not going to injure yourself.

Mathew Embry (13:44):

No.

Geoff Allix (13:45):

Yeah. There was an interesting... A guy in the UK, Scotland, I think, called Graeme Obree, who was a cyclist. And he had the one-hour record for a while and he was quite an in interesting character because he made his own bikes. And they made really weird, structured bikes and they ended up banning all of those because you have to use a normal bike eventually. But one of the things he said was that he would go out, he'd get fully in his cycling gear and he'd go out, get on his bike and be on the road before he'd allow himself to say that he ate too much to go cycling. He'd go through all the prep. So you wouldn't have that excuse of... He'd be there, he'd be on his bike and then say, "No, my legs are really sore. I really shouldn't be doing it, and I'll get off." But he had to make himself, even if he knew he was [crosstalk 00:14:31].

Mathew Embry (14:30):

I understand.

Geoff Allix (14:31):

And I thought, "Yeah, okay, I get that." You've kind of... And then once you take that first step, you're like, "Yeah, actually it's nice. It's outside and it's yeah." Or make yourself run in the rain. You know? If it's raining, I'm still going to go out running. I'm just... Because once you do it, it's okay. It's all right.

Mathew Embry (14:47):

Once you do it. And then the question is that conversation is daily and that's... I also try to share with the people, I've been in this for over 20 years. I still get it. I get it. You know, yesterday morning I woke up and it was minus whatever, here in Canada. I don't want to run outside. But as soon as I get going, then I'm like, let's go.

Geoff Allix (15:04):

Yeah. And so one of the things I've seen, sort of hashtags and things, and the saying you have is, "No cheat days." So does that apply? Is that for everything? Or is that for exercise, for diet? What do you mean by... When I see your hashtag, "No cheat days," what does that mean?

Mathew Embry (15:25):

Again, this is in response to so many people asking me if I've had a cheat day. That used to be one of the most often asked questions. So I'm like, "Well, no, I don't." And I think that's... The part of this program is the vigilance and the discipline. And I try to really share that with people that there's no kind of off switch here. Let's say when it comes to dairy, there's been recent science that's come out to demonstrate how problematic dairy could possibly be. Well, if you're going to have that once a week, I think that works out to about 15% of your life. You're going to be having dairy. Well, don't expect to be at a hundred percent if 15% of your life you're eating things that are detrimental to you.

Mathew Embry (16:07):

So then, well, and if that's your level, if 85% is as high as you want to get, okay, then that's as high as you want to go. But you're only going down from there, in my opinion. So then the question is, okay, with no cheat days, well, every single day is an opportunity to reach and pursue optimal health. And it's up to you. As each choice comes in, each meal you have, each time you exercise, each opportunity you take to be positive and do these types of things, how high you want to take your life?

Geoff Allix (16:35):

And how would you measure progress for people? Let's say specifically with exercise, how would you measure someone's progress? Because it's, we're not typical of the general population. I've got MS, you've got MS. So how do you measure your progress with exercise? Because I've come from a background where I ran, I did marathons. I did a lot of sports and stuff and my kids are crazily sporty. So it's all about times, it's all about distances, all about weights. But how do you measure progress now?

Mathew Embry (17:11):

For me it's still, it's incremental. And I try to share that with people. I mean, I'm doing things too that are quite, whatever that would mean, at a level where they're competitive, but for me it's still... It's incremental shift. So if someone's struggling with disability, like with disabilities, okay, can you walk to the end of your driveway today? Well then, can you walk to the end of your driveway plus a little bit down the block and get back? And it's like, you've got to be able to find those. And I think your point to make, to find those measurables is really important because how do you know if you're getting better?

Mathew Embry (17:48):

I don't know.

Geoff Allix (17:48):

Yeah.

Mathew Embry (17:49):

And so in someone's journey, maybe it's walking around the block, in one year, is a big thing. Well, that's fantastic. That's the goal. Measure every single day, how you are going to get there. And that's one thing I talked about too, is hard accounting. And that hard accounting is when are you going to, when do you decide to do that? Are you going to do that weekly? Are you going to do that monthly? Where you're just accounting for your time and you're holding yourself accountable for what you've done. So for me, it's a little bit of a blur right now because it's races that I'm going for, I'm trying to achieve. But I'm still trying to figure it out, can I do this? Can I do that? What is this going to take? And then trying to measure how I feel on a... Almost on a daily basis.

Geoff Allix (18:33):

Yeah. And I think the smart watch is quite a handy thing to have, because that's the thing I use. I'm like, "Okay, I've got to do as many steps as I did yesterday." Try and just... Because I know, yeah. I'm not going to increase it. If I increased it by a thousand steps every day, then before I knew it that'd be, I'd be running constantly. But if I could just get... Yeah, that's my benchmark. Just like, okay. Just a little bit further. If we could just get a little bit further.

Mathew Embry (18:59):

Yeah.

Geoff Allix (19:01):

Because yeah, I mean, and we are middle aged men, so ultimately, we're not maybe at our athletic peak. I know I'm not going to hit the physical things that I did before I had MS, and certainly when I was 20, but yeah. But if I'm improving a little bit each time.

Mathew Embry (19:21):

Yeah. But you're bringing up a really interesting idea that I've been giving a lot of thought to lately about sports systems. Because you said something interesting. And just what you said. You said, "I'm not at the peak of my life." Well, you're not at the peak of your life in regard to where you were in a certain system. So when you were 25, that may have been peak athleticism for you at... For 25 to say 28-year-olds.

Mathew Embry (19:44):

Okay. But at 50 or 45, whatever I am, what's peak athleticism at where I should be?

Geoff Allix (19:50):

Yes. That's a very good point. Yeah.

Mathew Embry (19:54):

And I think it's about... What I think, where our society globally maybe has gone wrong, is we stop. Once you're through college sports and maybe you played semi-pro or something or whatever the case, then it's just like, "Well, that's as far as you go." And like, that's the peak. Well, for me, I redefine that. Where I'm like, no, no, no. I need to find out where my peak is now at 45, and how am I competing there? Because no one cares what I did yesterday, but people still care what I do today. So am I still at the peak? Or can I... Am I finding the peak of where I should be today?

Geoff Allix (20:27):

That's a really good... Yeah. A good way of looking at it, I think for, yeah. Because a lot of people I think, who are not necessarily diagnosed, but certainly coming around to lifestyle modification. A lot of the people I come across are in that age range of certainly thirties, forties, fifties. And so yeah, maybe they shouldn't be judging... And it's very difficult to judge yourself against who you were before. Before I had MS. My balance is a bit shot now. It's like, I'm not going to be doing some of the things I was doing then. So. But yeah, I'm a nearly 51-year-old guy with MS, so I'm doing well for that.

Mathew Embry (21:10):

Yeah, exactly.

Geoff Allix (21:11):

Yeah.

Mathew Embry (21:12):

Yeah. I get it.

Geoff Allix (21:14):

And what would you say is the best type of exercise for people with MS?

Mathew Embry (21:19):

Well, this is a good question. I mean, I actually met Dr. Jelinek in Australia years ago. It was one of the... Well, one of the peak experiences of my life, probably. He's such a hero to me and we were able to talk and he said something that really stuck with me. He said the two words, "Vigorous exercise." And I was like, that's it. That's exactly it. That's what I've been doing. It's vigorous. And it's getting the blood flow and it's... So the question becomes, okay, well then it doesn't really matter what you do as long as it's vigorous. As long as you're getting the blood flowing and you're getting that, the prosody out of the brain, whether that be the blood, or I don't know how the lymph system works, but all those types of things are just kind of flow. Like the blood flow. So that's where I share with people. And I do Q and A's, I'm like, "I don't care what you do. Just do something."

Geoff Allix (22:14):

But you're actually... So when you say that blood flow, you're getting out of breath, you're getting like-

Mathew Embry (22:19):

Yeah, I'm getting out of breath, I'm sweating, I'm turning red.

Geoff Allix (22:25):

Yeah.

Mathew Embry (22:25):

You know, I'm doing all those things. And that's what I remember Dr. Jelinek said that he did too. It made total sense to me. I'm like, that's so... That's what I've been doing as well.

Geoff Allix (22:32):

He also lives near to an outdoor swimming pool, which I'm really jealous of, but.

Mathew Embry (22:36):

Yeah, right.

Geoff Allix (22:37):

Yeah. If I had a 50-meter outdoor swimming pool and lived in a country which was warm enough to use it every day, that'd be fantastic. So, yeah. So I think that's a key point there. So you, so it's really that sort of getting out of breath, not just like doing bicep curls and getting big guns, is not necessarily going to do everything for your health in that respect then.

Mathew Embry (23:06):

I don't know. I can't necessarily speak to that because I didn't, that's not what I've done. It's been 26 years now of vigorous exercise. And whether that's running, swimming, sports, all sorts of different things. And I think that blood flow component has been major for me. And I think if you are lifting weights and you're doing that thing and you are getting the blood flow, then maybe that does it too. But I don't, I just don't know. I've also looked online and seen like apparatus that they're creating to create that type of blood flow for people who maybe can't stand up. They pump the legs and they pump the arms, they just... To get that blood flowing. And I'm really interested in that for people. And I just think that blood flow and that circulation is just so important for good health.

Geoff Allix (23:53):

So that comes on to the point I was going to make. People with mobility problems. So what would you suggest if someone's, maybe they're in a wheelchair, maybe they're bed bound, can they still do exercise in that way?

Mathew Embry (24:09):

That's a tough question. I mean, I think that's where experts like Dr. Gretchen Hawley come in, where they can offer people solutions to that. And then again, I also look at these other apparatuses or these medical devices. Can these be... I don't know if they're helpful, but I think we should look at them. And if they are creating additional blood flow for people who are immobile, then that seems really important. But the one thing I do share over and over too is just, do what you can, whatever stage you're in. Just from my perspective, you got to keep moving.

Geoff Allix (24:46):

Yeah. There was, I can't remember. It was one of the MS exercise specialists was just showing that people could do essentially running in a chair. Doing the upper body bit of running, you can get really out of breath. And there's a guy I interviewed, Marc Webb, who... He plays wheelchair rugby.

Mathew Embry (25:05):

Right. Wow.

Geoff Allix (25:05):

And I think, yeah, that, I mean... Yeah, he's not got the balance and everything to use, for his legs, but that looks like a pretty full-on workout. And it mentioned something else that I've seen you bring up as well about team sports. So what do you think the benefit of team sports is?

Mathew Embry (25:25):

Again, that's a complicated question. I think that there's... Like for team sports, I think they're, it's so important to learn how to get along with people. You know, that's one thing for sure. The other aspect is I think it also holds you accountable. And I think that's also important in this journey. You know, the accountability mirror for me is literally looking at myself, but I also... Just because I've gone public, I'm now accountable to all these people.

Geoff Allix (25:56):

Yeah.

Mathew Embry (25:56):

So, if I say, "No cheat days," well, I better live it. And if I haven't worked out, whatever the case, I have a sense of accountability. And then also too, I think for people... I mean the one thing with people I worry about sometimes with MS is they may feel, "Because I have MS I can't participate at a certain level." And that's where I think a team sport could be really important. Where, you go swim with people who don't have MS, or don't talk about this type of stuff. Well, that's good too. I think that's all really great to integrate it, to be able to integrate into other populations and not feel less than, or those types of things that I think something people can struggle with. Maybe I have at times wondered, you know.

Mathew Embry (26:40):

Actually, that's not true. I've always been pretty, "I have MS, I'm coming for you."

Geoff Allix (26:46):

And how about if people have heat issues? Do you have anything to deal with that side of things? Because I mean, I think it goes both ways actually as well. Because I mean, I have heat issues and I don't deal with heat well, like high temperatures well, since I've had MS. But I've been snowboarding a few times with MS, and I just, I go snowboarding now. I don't have a whole load of thermal stuff on. Really quite limited amount, compared to what I used to have, when I was younger. Because when it's cold, I'm great. But when it's hot, much less so.

Mathew Embry (27:20):

Interesting. Yeah. Interesting.

Geoff Allix (27:23):

[crosstalk 00:27:23] The other way around, where they go, "Oh I know, heat's great. I'm fine with heat, but no to cold. I'm terrible."

Mathew Embry (27:27):

Yeah. I'm that. I'm that person. [crosstalk 00:27:30].

Geoff Allix (27:29):

You live in the wrong place.

Mathew Embry (27:32):

Even before doing this interview, I had to get a sweater because I'm like, I'm going to get cold here. I've had to find ways to stay warm. And I think that's... It's no different than with the cooling. And it's interesting you bring it up because someone just wrote me, they're going to send me a cooling vest. And for me, I don't really, I don't necessarily need it, but I'm like, "Okay, great." And I actually thought, "Maybe I'll go on social media and see who needs it?" And then I'll give it away and then see how they do. Like if they write me back and say, "This has been fantastic, maybe I'll send it to you."

Mathew Embry (28:00):

Like, if this has really helped me, then go for it. It's about finding environments that you're able to do it. Like you said, in the snow, that sounds great. And it's about finding the gear. I mean, if you see me at the gym, I come in with a tank. I have another layer on. I wear these types of wool shirts to the gym because I know I've got to be able to heat up. And once I can heat up, then I'm good to go. But getting there is challenging for me, but you can put me in a sauna for a long time.

Geoff Allix (28:33):

Oh I see that. Yeah. I mean, it is funny, isn't it? I don't know if there's much research we've done on this because it does seem to affect everyone with MS, one way or the other. But I've literally, I've been in the sauna once since I've been diagnosed with MS.

Mathew Embry (28:48):

Really?

Geoff Allix (28:49):

And that was at Glastonbury Festival. Glastonbury's not so far from me so I go quite a lot and there's a sauna there and you can... It's a place where you can get a shower, which is an important thing at Glastonbury Festival. But it was terrible. I literally, I thought I'm not going to get out of here. This is so... It was like, I just couldn't walk.

Mathew Embry (29:15):

Wow.

Geoff Allix (29:15):

Really. And then I basically laid down on the grass for about half an hour because I was just in terrible state. But yeah. I just, yeah. Be interesting if there's some research done. I'm sure there... Maybe there is. But just avoid it, basically, is what you're saying. You want to go for warm? I'll go for cold.

Mathew Embry (29:30):

Yeah.

Geoff Allix (29:31):

[crosstalk 00:29:31] look at each other. So I look through your outside window, I can see there in front of the... Nice and cold outside.

Mathew Embry (29:36):

Yeah. It's cold.

Geoff Allix (29:39):

The way you looked at that was with worry. I'd look at that as, yeah, I quite fancy [inaudible 00:29:45]. So one more exercise question. More weight or more reps, would you say is good for you with exercise?

Mathew Embry (29:55):

Again, this is from a personal experience, I'm a rep kind of person. For me, it's all about reps. I got weights downstairs, nothing more than 25 pounds. That's been part of my process. Again, I'm not an expert in this, so maybe there's someone who knows more, but my process has been endurance running, low weight, high reps. And that's been over 25 years now.

Geoff Allix (30:26):

I was thinking this today because I was doing some reasonable weight for me, now, but I'm kind of still going with what I did when I was younger, which was, let's start out with three sets of eight. Then you do three sets of 10. Then you do three sets of 12. Once you can do three sets of 12, you go up a weight, you go back to three sets of eight.

Mathew Embry (30:49):

Yeah, I remember that. Yeah.

Geoff Allix (30:52):

And I was doing that today and I thought, "I don't know if this is the best way of doing it." I don't know whether I should be [inaudible 00:30:58]. Why am I stopping at 12? I've seen some exercise stuff with you and you seem to be actually almost like you're not really doing reps. You're like, "Actually no, I'm going to do a lower weight and I'm just going to keep doing it for a lot longer."

Mathew Embry (31:14):

Keep doing it. Yeah. For a lot longer. And I don't use things like weight benches and that type of stuff. I try to do a lot of balance as well. If I'm doing weights, I'm lifting my legs at the same time and trying to figure out, not like jumping jacks, but always moving.

Geoff Allix (31:30):

Yeah.

Mathew Embry (31:31):

That kind of thing. So I don't really use those traditional machines either that much.

Geoff Allix (31:36):

And that's-

Mathew Embry (31:39):

I see it like a... I have a really paleolithic kind of perspective of my body. So I just think, "What would a cave person do?" You know, they'd lift a rock and they'd... What would they need to do?

Geoff Allix (31:55):

And that applies to so many things as well. Vitamin D. We would've lived somewhere sunny and we might have worn a rabbit pelt round our waist or something. Yeah.

Mathew Embry (32:07):

Sure.

Geoff Allix (32:07):

We'd have got loads of vitamin D. We wouldn't have had dairy because we didn't have a farm full of cows, let alone cheese. We just ate what we could find. And we did loads of exercise. We got loads of vitamin D. We ate natural food that we could forage and find. And basically, we're almost saying, I mean, I don't... This paleo is sort of like almost tagline now, isn't it? And that's not necessarily... Sometimes you think, "Really? They actually eat that?" Like Bulletproof coffees and things, but yeah, if you sort of think, yeah, it does make sense. A lot of that stuff, that's kind of how we're made, isn't it?

Geoff Allix (32:50):

It's really interesting to speak to you. I think there's a lot of stuff. There's certainly... I mean, I don't like this idea of Overcoming MS or MS Hope being in competition because I've certainly heard that sort of thing in the past. I just think we need to look at the overlaps between all these things, and there's so many similarities. And in fact, the more I speak to you, some of the things which may be that are not necessarily highlighted by your website, like, "Yeah, don't smoke. Do something mindful."

Geoff Allix (33:15):

And all those things like vitamin D, we mentioned, exercise, whole food diet is... I just think, yeah. For everyone really. So could I ask you one last question though? Something we often ask people. If someone's newly diagnosed with MS, what would be your key, best piece of advice to them?

Mathew Embry (33:41):

Change their diet right now.

Geoff Allix (33:43):

And go-

Mathew Embry (33:45):

... Right now.

Geoff Allix (33:45):

Full on? Like you have to do it a hundred percent?

Mathew Embry (33:49):

Yeah.

Geoff Allix (33:49):

Yeah.

Mathew Embry (33:50):

Yeah. Because I think that it's... I mean, I don't want to get too kind of out there, but illness is... For me, now I've had this over 25 years. Okay? So I have a very different maybe perspective now. I almost see sometimes, not all the time, but sometimes illness can be a call to adventure and it can be... It can change your whole journey. For you to go, "Okay, here I am today. And here's where I want to go, to opt towards optimal health." Well, going towards optimal health is going to... You're going to have to transform your life radically. Because your life to that point, got you there. "Okay. Got it. Now, what do I have to change to not have this outcome, which is illness or disease?" The key component to that, one of the keys, is nutrition. And that is very hard to shift. It's very hard to change.

Geoff Allix (34:45):

And one of the things that George [inaudible 00:34:49] says, it's like turning around an oil tanker as well. So yeah, it's not a quick fix. You're going to have to... And like you're saying, start day one. Because if you don't start turning the oil tanker, it's not going to turn. It's going to take a long time to turn it around. You need to turn, keep it going in another direction is a difficult thing.

Mathew Embry (35:06):

Yeah. And then I think that... but it can start right now. If you're listening to this podcast, you can go to your fridge and change. And that's where I try to tell people, "It's you. You have the power to have incredible transformation in your life right now. You just need to decide." And then I also tell people too, "Find the outcomes you're looking for. Find the people who you look at and you think, hey, that's what I want to be." And then go learn what they did. You know? And the thing is people who normally succeed in something, they want to tell you all about it because they've enjoyed it, and they enjoy where they are. And so they... Why would you not want to share it? And so you're in luck. Not only can you find the person you want to aspire to, that person's very likely going to want to help you get there.

Geoff Allix (35:57):

Okay. With that, thank you very much, Mat Embry, and I'd encourage everyone to have a look. The links are all on the show notes. Mathew is... I call you Mat again. Sorry. I keep saying-

Mathew Embry (36:08):

That's okay.

Geoff Allix (36:09):

I want to call you Mat. So Mathew's all over social media. You'll find links to all his different social media outlets, but yeah. Check out the MS Hope website as well.

Mathew Embry (36:19):

All right. Thank you very much.

Geoff Allix (36:27):

Geoff Allix (36:55):

Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

Geoff Allix (37:38):

The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

View Details

Welcome to Living Well with MS Coffee Break #30, where we are pleased to welcome Tessa Jane Miles as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. Tessa Jane will paint your day in colors galore discussing how she uses art to raise awareness about MS. We hope you enjoy this episode’s conversation with her, coming to you straight from Devon in the UK.

Tessa Jane’s Bio (in her own words):

My name is Tessa Jane, and I am an artist. My best days are the ones when I forget I have MS. My body tingles with the joy nature bestows – the birdsong, the warm light, or fresh wind on my face. I have an inner glow of happiness and capturing that and applying it to paper, cloth, or any surface continues that delight, taking me to a world of imagination and beauty. It’s a release. I don’t focus on fear or anxiety.

My body is clear of pain, words trip off my tongue elegantly. I can balance and am full of energy. I have clear, present thoughts which spur me on, and I am happy. The only trembling or shaking is because of excitement and laughter. My body is light, and spirit lifted.

Following the Overcoming Multiple Sclerosis (OMS) program has brought me more of these days. Learning to be mindful, present, and to meditate has reduced stress and lightened a heavy heart. I do not sit cross-legged, humming. I walk amongst trees, or around my garden. I float in water, or I draw and create. Gardening, writing, sewing, and knitting are all mindful activities which help to reduce stress and lower life’s adrenaline. I watch and listen to birds, taste my food, and listen to the rhythms of the day.

I look for small joys on the bad days. A steaming coffee cup. The light on a golden leaf. Or frost patterns on a car roof. A warm fire or a bowl of tasty soup.

Being part of OMS and belonging to an OMS Circle is a comfort blanket. They have become my family and will help shoulder the weight, give good advice, and make me laugh about the detritus that living with multiple sclerosis brings. My walks, creativity, and time in nature is my mindfulness. I’d like to encourage you to find your ways of being present. I’ve pledged to raise £10,000 for 10 years. I can’t do it alone but can with help and support from friends and family. Not all of us can run, but many can write, whittle, knit, sew, crochet, or paint. Join my 10 for 10 campaign and get in touch to find out how (see links below).

Questions:

Tessa Jane, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. You and I are neighbors in Devon, and part of the same OMS Circle, so a very special welcome indeed! Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
How do you feel the OMS program connects with people of varying abilities? For example, how might someone who faces more physical challenges relate to the program?
Can you share any insights from obstacles you may have faced in adopting the OMS program, how you overcame them, and how this experience might help others?
Let’s shift gears a little bit and talk about your art. Can you tell us a little bit about your background as an artist, and your relationship to art?
You’re a big proponent of using art to raise awareness about MS, and moreover people with MS using creativity as one of the tools to boost mindfulness and manage their condition and their health. Can you share a bit about how you see that working?
Putting that theory to work, you’re involved in a very special event happening in May, I believe – the Delamore Arts exhibition. Overcoming MS is a charity partner for this event as well. Can you share what this is all about, and how it represents your philosophy about art as healing in practice?
Going a bit deeper into the creative rabbit hole, I understand you’re quite interested in brain scan-based AR. That sounds futuristic! What is that all about and how does it relate to your linked interests in art and MS?
Tessa Jane, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Tessa Jane’s Links:

Check out Tessa Jane on Instagram here and here, all about raising MS awareness through art.
You can follow Tessa Jane on Twitter here.
Have a look at Tessa Jane’s art on Facebook here and here.
Learn more about Delamore Arts.

Coming up on our next episode:

On the next episode of Living Well with MS, premiering April 27, 2022, please join us for a very special conversation with Mathew Embry, an internationally recognized documentary filmmaker and advocate for people and families dealing with MS. After being diagnosed with MS in 1995, Mathew is currently symptom-free of MS and freely shares the science-based strategies he uses to control his MS through MS Hope. You won’t want to miss this inspirational interview!

Don’t miss out:

S4E50b Transcript

Coffee Break #30 with Tessa Jane Miles

Geoff Allix (00:01):

Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people.

You can check out our show notes for more information and useful links. You can find these on our website, at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast.

Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So, get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break.

Welcome to Living well with MS Coffee Break #30, where we are pleased to welcome Tessa Jane Miles as our guest. As always, your comments and suggestions are welcome, by emailing podcast@overcomingms.org. Tessa Jane will paint your day in colors galore, discussing how she uses art to raise awareness about MS. We hope you enjoy this episode's conversation with her, coming to you straight from Devon in the UK.

Tessa, welcome to Living Well with MS Coffee Break. We're so pleased to have you on our program. The purpose of this series, to explain, is to get to know some of the diverse members of the community from around the world and today, you are in the hot seat.

You're effectively neighbors with me, because I'm in North Devon in the UK and you're in South Devon. We're part of the same broader Southwest UK OMS circle. So, a very special welcome from the Southwest of the UK. Could you tell us a bit about your day-to-day life?

Tessa Jane Miles (02:11):

Hi, Geoff, thank you. Yeah, hotspot. Well, I'm sat here with my coffee and my day-to-day life has changed slightly with the new addition of a dog. I tend to get up and take him out, which I'm finding quite exhausting, because I'll often have a slow start. I find that if I get up when I wake and my body is ready, I have a better day than if I try to force things.

So, I've been falling asleep in the afternoons and evenings, much to my husband Adrian's amusement. I don't get to see the end of any program because I'm asleep before it happens. I try not to have fixed days, but that's kind of the key thing. It usually revolves around art or my garden or being outside.

Geoff Allix (03:03):

About MS, when were you diagnosed with MS and how was that?

Tessa Jane Miles (03:10):

Oh, it was really terrifying actually. I'd separated from my previous husband and I was on my own with the girls. We'd had an amazing time getting ourselves resettled and then suddenly, I started to have problems with my sight and it was deteriorating.

It reminds me of The Matrix with Keanu Reeves, where it all started to pixelate and do strange things. By November 2008, I wasn't safe to drive. I couldn't see properly and I ended up having to stop teaching, because I wasn't safe in the classroom.

I'd been to Royal Eye Infirmary and they’d said, "Well, there's three possibilities. There's a brain tumor, you could have an infection which we can't treat or it might be multiple sclerosis." I'm thinking, "I don't really want any of them, thanks. Is there not a fourth option?"

So, I went through a very difficult six months, which I know now, from experience, I was lucky. Because many people are what we call no man's land, in that they've had one relapse or they've had one sclerosis and you are called CIS or it's just one incident, but then it happened again in April 2009.

Then, I got the full diagnosis and I'd learned that it was optical neuritis. There was nothing wrong with my eyes. Started to learn and understand what was happening with MS. Life changed dramatically. I stopped teaching and I found myself alone and scared and bored, with no focus.

I was playing Farmville and my sleeping hours were all over the place. I was harvesting my crops at two o'clock in the morning because I couldn't sleep. It was all pretty rubbish, to be honest. I didn't really know who to turn to or who to talk about it with. So, yeah.

Geoff Allix (05:37):

I think there is, because we live in the same county, I mean, I've felt that there really aren’t people around, are there? We live in quite a rural county. I mean, the OMS Circle has meant that I've met people. Until the OMS Circle, I hadn't met anyone with MS. They're few and far between, just geographically. Yeah, you don't really feel connected, do you?

Tessa Jane Miles (06:10):

No, and people have very different ideas of what MS is. I mean, I'd come out of one relationship and I met Adrian. How do you explain to somebody that you've got MS? I can remember someone saying, "Well, yeah. If you were married, you'd just get on with it. But who might want to commit to somebody who, do they need all that? What's their experience of it?" Yeah, it was tough.

I liked to dance. I was doing salsa dancing and I found that that helped keep me fit. I had quite a good diet before, but I didn't know anything about it really. I'm an artist and a designer and I make fabrics. One of my real joys is to take something that's been discarded and make it precious again. Which is a bit of a metaphor, really, for myself, in that I felt discarded.

Whereas OMS has helped me to feel precious again, but we'll come to that a bit more later. But the important link is that I needed to make was buttons. I went to meet an upholsterer who had a machine to do them. His name is Bruce, Bruce Jacks, and he's in our OMS Circle.

He's not fully OMS, but he values being able to feel connected, which is something else that we are aware of as ambassadors. That there is a degree of difference between purists and people trying to build up or trying to find a balance that they're comfortable with.

Then suddenly, he just blurted out about having MS and I was gobsmacked. He said, "Oh, I haven't told you that before, have I?" I said, "Well, no. I'm gobsmacked because I have it too." It created a bond instantly, and this is something else that we find on our Circles.

That, because you have this commonality and you have this understanding, this innate understanding of what it is like to have MS, that you don't have to explain that, because we all get it. That's really, really important. But it was him that took me to The Merlin Center at St. Austell, which is one of the specialist centers we have in Devon and the Southwest.

I met Jeremy Hobart, or he was Dr. Hobart then, and I learned about the OMS program. I met Colin Bannon and he said, "Well, we've got a group in Plymouth. You can come." But also, very importantly, this lovely lady stood up holding the book, saying how she couldn't walk and now she was walking with sticks. How it had changed her life. Her name was Angela and she's also in our Circle. So, it's kind of drawn all these threads together and tied knots and helped…

Geoff Allix (09:19):

What was the key thing that tipped you into thinking, "I'm going to follow this program"? Because I mean, there's some doctors fully supporting of it. But generally, there's a, "Well, yeah, healthy diet's good for you." But, full-on support of OMS is unusual, to say the least.

Tessa Jane Miles (09:46):

Yeah, it is, isn't it? I just thought it was a no brainer, in that it's good for you. There's nothing in it that suggests that it would be bad for you in any way, shape, or form. It's a lifestyle choice, it's not a quick fad thing that's going to fix you. You do it and you're on it and that's for life.

Yeah, I just thought, "I'm not going to lose out here. It could help me." The scientific evidence was obviously incredibly important because it felt like that there was real substance behind it. As I say to anybody that asks me about it, I say, "Well, it's not hard to give up something which might mean that you have a better life. Longevity, physicality, mental, all of it."

I was really struggling with fatigue and energy and strength. I thought, "Well, if this helps those things alone, that's going to be good." So, I had a big last supper. I had my roast chicken and my potatoes and everything that, at the time, I thought I wouldn't be able to have. But, as you get better with the diet, you learn ways around it.

Yeah, and then I started, cold turkey. Within the first week, I was in tears, missing so many things. Had the wrong attitude in my head about what I could have. I didn't chuck everything out. One of the things that the book suggests is you chuck everything out that's not OMS friendly. I couldn't afford to do that, it wasn't practical. So, we've sort of used things up a bit, but overall, I embraced it.

Geoff Allix (11:45):

We are actually quite lucky, in that we do have a neurologist in Devon. Professor Hobart actually does give out the Overcoming MS books.

Tessa Jane Miles (11:54):

Yeah.

Geoff Allix (11:54):

So, there are some neurologists out there who are very, very positive for that. I mean, he's not my neurologist, but I'm very aware that he's very pro Overcoming MS. This may be somewhat ageist, which I shouldn't say as someone in their fifties, but the older neurologists might be more set in their ways sometimes. [inaudible 00:12:16] that a newer generation is coming through that's accepting of lifestyle factors. They seem to get more and more press these days.

Tessa Jane Miles (12:25):

Yeah, and I think also that they're beginning to realize that the medical profession as a whole is far more positive about holistic medicine and combined medicine. At no point do they ever say, "Don't have your meds." It's a combination of things and that's very powerful too.

Although obviously, we've got examples of people who've been able to give up their meds. Because they've been on it long enough and they feel that they've got control of it and they are living a very different life. I know, probably six years now I've been doing OMS, that I am stronger. I am fitter. My fatigue is improved.

I mean, we all have bad days, don't get me wrong. There are days when I don't want to step out the door and can't face the world, because I feel that you tend to put up this facade. People will say, "Oh, how are you?" I once stupidly told them exactly how I was. I watched their face completely go blank and drain of color.

I thought, "Ah, right. This is one of those British things." Like you say about the weather, "Oh, weather's good, isn't it?" "Oh, I'm fine." We've got a bit of a joke in our family that fine means Freaked out, Insecure, Nervous and Emotional. It comes from The Italian Job, with the Minis. She'll say, "I'm fine." I'm thinking, "Yeah, I am fine." And that…

Geoff Allix (13:52):

Yeah. For people who are not from the UK, probably the most common greeting is, "How are you?" It's almost not intended as a question.

Tessa Jane Miles (14:02):

No, they don't actually want to know how you are.

Geoff Allix (14:06):

Yeah, it's just a greeting. It's just almost like saying hello. Yeah, you're constantly being asked that. I always think that "Are you actually asking how I am or are you just saying that?" Because sometimes they are asking how you are, because you say, "Oh, yeah." Or just not even really answer it and they go, "No, but, how are you?" [inaudible 00:14:23]

Tessa Jane Miles (14:24):

Sometimes I'll say to people, "Is that a real how am I, or do you just want to check that I'm okay?" Then, some of my closer friends will say, "How are you? No, really, how are you?" Then it can become a more involved conversation, but it's not very often that happens. It's usually, "Yeah, I'm fine."

Geoff Allix (14:43):

One thing I wanted to ask is how you feel the OMS program connects with people with differing abilities. For example, how might someone who has more of a physical challenge relate to the OMS program? They maybe have difficulty walking, for example.

Tessa Jane Miles (15:01):

Well, this is my big project, my big thing at the moment. I realized, through listening to Alison Potts, and mindfulness, it's the thing that, after the diet, I found the most difficult to do. So, I've really been focusing on mindful activities and I'm aware that, or I feel that people with more physical disabilities could feel more on the outside.

As we see lots of things about being strong, MS fighter. Anything on social media, it's about, "Oh, I've done this and I'm beating that." I've watched various TED Talks and I'm focused much more on mindfulness and understanding the power of that.

I'm just doing an amazing painting course with an artist at the moment and it's so mindful and it's so meditative. Today, we were doing taste and color, so it's something that's very, very important to me, that we are all inclusive. Whatever your ability and however physically or mentally taxed you are, I feel OMS can help.

I've talked to people who can't run, who struggle with walking and they feel better. So, I'm trying to raise money for OMS. I've set myself a 10 for 10 project and I'm in inviting anybody to join me with this this year. We've got a 10 for 10 JustGiving page.

If you knit, if you sew, if you whittle, as we have Sean in our group who whittles spoons, beautiful they are. That you can find your way of doing 10, your fantastic beach rides on your trike, let's do 10 laps, or maybe you can swim better than you can run if your weight is taken off you, then do 10 minutes.

We can all set ourselves goals that can be positive and enhancing, but they're real. They're smart, as I would say, SMART targets. Small, Measurable, Achievable, Realistic Targets. I really feel that you can find part of the OMS program that is most comfortable with you.

You'll know, Geoff, I've had a lot of problems with my feet and actually, walking is incredibly difficult. So, I've now got an electric bike and I can cycle better. There are ways around it. I would encourage anybody who's struggling to contact anybody. Contact us, contact OMS. Find their own Circle because it could be you do 10 stitches.

I certainly find, in the winter when I'm lower, that if I'm sitting and sewing and doing little things like that, that it keeps me active. It keeps my fine motor skills going. So, I think there is an answer to everyone's challenges. My pet project is to try and help those people find their way through.

Geoff Allix (18:26):

Could you tell us about areas where you might have had problems adopting OMS? Did it all go smoothly or were there bits that were hard to adopt?

Tessa Jane Miles (18:36):

Well, definitely the diet challenged me for the first couple of months, in that I was a meat eater. My passion for cheese, I still struggle. Sometimes I have to pass that block of cheese over, say, "You grate it, because I will just devour it if you leave it under my nose." Yes, there are areas that are difficult. I've lost the thread because of my good old MS. Ask me the question again.

Geoff Allix (19:03):

It was just about [crosstalk 00:19:06] also, I want to apologize to listeners because outside our house, the gas mains are being replaced. So, there's lots of drilling noises that you might be able to hear in the background.

Tessa Jane Miles (19:15):

No problem.

Geoff Allix (19:17):

Apologies for that. It was just about, yeah, things that you've had trouble adopting in OMS. I mean you mentioned [crosstalk 00:19:23] How did you overcome those diet issues?

Tessa Jane Miles (19:27):

Got the book, started looking more carefully at the book. Having met other people and sharing recipes, sharing ideas. It takes me twice as long to shop now, because I'm reading all the labels and because I've got glasses, it takes longer. Practice, basically. Good old, simple practice. That, the more you do it, the easier it gets and the better it is.

By reinforcing things, I can shop now, most of the time, and I know which things I can and can't have. Where I need to go. I've got particular shops that I go to for different things. I absolutely love vegan mayonnaise, which I can only get in Sainsbury's, for example. I've just found some new baked olive oil crisps in Tesco's, which were a bit of a win-win for a naughty treat.

Persevere, talk to others, that's what's got me through. Being part of a family, being part of the OMS Circle and sharing those things has made a huge difference. But also, the mindfulness has been a real problem, and meditating. I have to confess that when I first started to do it, I was asleep within 10 minutes every time.

When I came up to Edinburgh and heard Craig's voice and I had to smile to myself because I thought, "Oh, bless. He's the one that's been sending me them." [inaudible 00:20:54] But, listening to Alison Potts about finding different ways to be mindful, and that we are not designed to sit like Buddhist monks and that has just been brilliant.

That's what I'm actually starting tomorrow. So, today is the last day of February, this podcast won't go out until later, but Mindful March. I'm trying to show different ways of meditating. When you go out, find 10 things. If you can't walk, then, like our dear Angela does, goes out in her little motor scooter. Listen for 10 birds. Listen and you'll be in the moment, you'll be present.

This painting course that I've just been doing, again, it's about how you apply the paint and being mindful of the direction. Today, we ate fruit. Well, I ate fruit, somebody else had chocolate and I was like, "No, don't go there Tess." Yeah, just being much more alive, now, in the moment. But it's taken me a long time to start to get this. It's about repetition, about practice.

Geoff Allix (22:14):

You mentioned art there. Could you tell us a bit about your background as an artist and relationship to art?

Tessa Jane Miles (22:22):

It's the thing that really keeps me going, to be honest. I trained as a fine art textiler, I trained as a weaver and a craftsperson. I ended up teaching because of my family and children, but I've always done my own work and continued to do my own work.

Then, through teaching and through studies, I realized that it wasn't enough to just make work that looks nice. It had to have an underlying meaning, a story. It had to have a conceptual element to it. There was a lovely quote today where it said, "You just end up pushing pretty paint colors around the page." That's not enough for me.

My work at the moment is about being mindful, it's about what it's like to have MS and to try and get those feelings, those emotions across. But, still in a way that is positive, uplifting, to tell the story. It will be part of this work that I'm doing in May with Delamore Arts. Where they are supporting OMS as their charity. I've got a £10,000 target…

Geoff Allix (23:40):

We'll go onto that in a minute, but can I just ask, before we go on to that, about people with MS using creativity. Not, well, art, but broader creative arts as one of the tools to boost mindfulness and manage their MS condition. Could you share a bit about that?

Tessa Jane Miles (24:05):

Yeah, absolutely. Basically, you are sitting predominantly. I mean, some people stand when they paint and what have you. But, because you are focusing on what you are doing right now, the marks that you are making on paper or the stitches that you are doing, your breath slows, your mind calms.

You can find that you are in a very meditative state. Even if you're just mixing colors, you are focusing on what's happening right there, right now. So, you are therefore meditating. You are therefore being mindful and you are practicing mindfulness.

I can start with music on, which again, is another way of listening. Listening to music is another mindful thing. It takes you to a different place. It takes you to somewhere outside of your overthinking, your worrying. It will lower those stress levels and it will reduce those things.

Yeah, you can get your knickers in a twist about not being able to do something, but that, again, it comes with practice and getting better. Picasso said, "I practice the things I can't do until I can." That's the key element about mindfulness. Find a way.

As Alison says, "If you are angry, how can you expect to sit calmly?" You need to do something energetic. So, going out for a walk or putting some really loud music on. During COVID, when I was really struggling, I was listening to Music by Humans, Gary Barlow. It was just full of percussion and saxophones and joyful.

It would knock those blues out and help bring back the joy of living. That's what I would recommend. Anything that's creative, writing, music, involved in any of the senses. If you cook and you love to bake, then take time in thinking about those ingredients that you're putting in. The taste and the flavors and the feel of the mixing. Anything that we do in that form.

Geoff Allix (26:24):

Back to the Delamore Arts exhibition. You've been instrumental in setting up Overcoming MS being the charity partner for this event in May.

Tessa Jane Miles (26:24):

Yeah.

Geoff Allix (26:37):

Could you tell us a bit about it and how that connects with your art as healing?

Tessa Jane Miles (26:46):

They're celebrating 20 years, we're celebrating 10. So, I pitched to say, "Would you consider us?" And they said yes. The reason I did it was because World MS day is the 30th of May, Delamore Arts runs throughout May. It seemed serendipitous that they be together.

It's about sculptures and a trail in the gardens, which is about being outside. Gardening is another mindful thing. It's about a community, they bring a lot of different people together and that's one of the World MS Day focuses, is community. How being in outside spaces helps calm and heal us. It's about being creative.

I mean, Delamore Arts, there's literally something for everyone. They have so many diverse styles, artists, things coming in. I would challenge anyone who said that they didn't like anything there, because there's crazy things to really profound things. To really beautiful landscapes, to portraits. There's literally something for everyone.

I just thought, "How perfect is this match? It's ticking all of our mindful boxes, it's ticking all of the community boxes. It's a great place to gather and it's a great place to talk and sit gently." So, we are creating or I'm creating a space where people can come and talk. They can learn about MS, they can ask questions.

They can be with people with MS. We can sit and sew. I've got artists going to come in to do demonstrations, or little workshops for people to come and join in with so they can learn. They can see and they can be immersed in something mindful and beautiful. Hopefully, the weather won't be too rubbish so that we can enjoy the outside space as well and raise money for OMS.

Geoff Allix (28:48):

Is there anything for people who can't physically get to South Devon?

Tessa Jane Miles (28:55):

Yes, there is. We're going to do a postcard auction. It's a silent auction, many of the artists that are taking part, and even George Jelinek is doing me something. I have a lovely card from Grazina. These cards will be online and they'll be at the show and they can be bought.

What we are asking is that you propose a fee, amount, a donation. As the month goes through, if you're outbid by somebody else, you might have to raise it. You can buy these postcards; I can post them out to anywhere in the world. So, everybody can be part of this thing.

I'm looking for people to knit squares for me, to do bunting and things like that. Again, they can be knitted wherever you like and they can come in. Everyone can take part. The other thing is, if you can't take part, then if you're on social media in any form, Twitter, Facebook, or Instagram, share it. Get it out there, because the more people that see, the more people that bid for these postcards.

Also, I don't know if you can buy online, but you can certainly phone up afterwards if you see something that you really love in the show. Or you see it on the Instagram because I'll be covering all of it throughout May. Yeah, and we will ship it to you. If you want it, we'll get it to you somehow.

Geoff Allix (30:24):

It could end up being a famous artist.

Tessa Jane Miles (30:26):

It could, yes. There are some international and really big names that I'm hoping will contribute. I can't say exactly who and what yet, but I have lots of promises. There's some sculpture being donated for me to sell. Yeah, I'm really excited. Join in, spread the word, and help hit that target.

Geoff Allix (30:50):

A bit more about the creative side, and this is something that I hadn't heard before, but that you are quite interested in brain scan-based AR.

Tessa Jane Miles (31:01):

Yeah.

Geoff Allix (31:04):

I work in IT, so I'm aware of AR, but this, yeah, for an art space, it sounds very futuristic. Tell us a bit about that.

Tessa Jane Miles (31:16):

Well, I'm very lucky to have worked with Plymouth University's [inaudible 00:31:21] team a project to do with balance. I said to them, "Oh, if you want an artist to illustrate any of it and all your findings, just say." It was a total off-my-head type comment. Didn't really think anything of it. But, several months later, they took it up.

I've been working with them and I've been using my MRI scans to create screen print slides. I'm putting them together and creating artwork that's a combination of my scientific brain scans and imagery. It looks like, I mean, for instance, trees, to me, look like the nervous system.

Obviously, trees are all connected and they have their nervous system. So, that goes brilliantly with the fact that all of us OMS people are connected and our nervous system is attacked by ourselves. There's this conceptual story and that's why I'm saying it's not enough for me to just paint pretty pictures.

I'm totally absorbed in this body of work that's to do with that. I've created an MS Chair. It's all my brains and scans and imagery and it's on an upholstered chair. That will be there. That's why we're encouraging people to come and visit and to join in and see what it's all about.

So, they will be present and they're going to be part of the show too. They're developing an app, which is another trial that I'm doing. Yeah, so we're trying to get all of these different things together and use the art to illustrate and tell the story. That's what my work is all about.

Geoff Allix (33:07):

With that, Tess, thank you so much for being on the Living Well with MS Coffee Break and allowing the community to get to know one of its own a bit better. But we do have one last question, which is a tradition that we tend to ask people. If you tapped into your experience with MS, and specifically OMS, for a nugget of wisdom that might help new people adopt the OMS program, what would that advice be?

Tessa Jane Miles (33:32):

Ooh, to realize that it's not necessarily a cloud, it could be a silver lining. It's because of my art I've found that living with MS has enriched that. It's added to it. Being part of a community and joining with the Circles has given me a safety net and a support system.

To not be afraid to reach out. Any question is not a daft question. If it's bothering you and it's worrying you, ask it. Someone, somewhere, will try and help you find the answer.

Geoff Allix (34:21):

That's what we say in IT. I remember someone saying that the only daft question is the one you didn't ask before you crashed the entire system.

Tessa Jane Miles (34:30):

Absolutely.

Geoff Allix (34:32):

Which kind of applies to this as well.

Tessa Jane Miles (34:35):

Yeah.

Geoff Allix (34:36):

With that, thank you very much for joining us.

Tessa Jane Miles (34:39):

Oh, you're very welcome. Thank you for having me. Yeah, join my 10 for 10. Get involved.

Geoff Allix (34:44):

Yeah. All the links are in the show notes, have a look and you'll find links to everything there. Tessa's Instagram, Twitter, Facebook, and Delamore Arts are all listed in the show notes.

Tessa Jane Miles (34:55):

Thank you.

Geoff Allix (34:56):

You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS family of podcasts is for private, non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

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Bio:

Mitzi Joi Williams is a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who serves as the Founder & CEO of the Joi Life Wellness Group Multiple Sclerosis Center in Newnan, GA.

Dr. Williams is considered a subject matter expert in Neurology, Multiple Sclerosis and Health Disparities. She has over 15 years of experience in the field of Multiple Sclerosis. She received her undergraduate degree in Neuroscience and Behavioral Biology from Emory University in Atlanta, GA, and received her Doctor of Medicine Degree from Morehouse School of Medicine also in Atlanta, Georgia. She completed her Internal Medicine Internship, Neurology Residency, and Multiple Sclerosis Fellowship at Georgia Health Sciences University (formerly MCG) in Augusta, GA, where she received numerous accolades and served as Chief Resident of the Neurology Residency Program.

Dr. Williams has spearheaded and participated in multiple steering committees and work groups to further research in underserved populations with MS with a focus on the African American population. She has recently joined efforts to increase diversity in clinical trials and educate the community about the importance of research participation. Through collaborations with national and international committees, she advocates for people living with MS to share in the decision-making process with their healthcare teams to combat this disease. Dr. Williams is the author of “MS Made Simple: The Essential Guide to Understanding Your Multiple Sclerosis Diagnosis.” She continues to live out her mission to provide personalized Multiple Sclerosis Care delivered with expertise, compassion, and joy.

Questions:

Welcome to the program Dr. Williams, and thanks so much for joining us on Living Well with MS.
Let’s dive right in. Your background is stellar. You have established quite a prestigious career as a neurologist and MS specialist. Can you share a little about your background as a medical professional?
What inspired you to focus on MS in your training and practice?
Let’s chat about Joi Life Wellness Group. That’s the MS center you founded and lead in Georgia. What are your core principles in this practice?
Given that you see a steady stream of people with MS, you must encounter certain common obstacles people have in dealing with their diagnosis all the way to sound MS management and treatment. What are these in your view, and what’s your take on overcoming them?
As you may know, the organization behind this podcast – Overcoming MS – promotes evidence-based lifestyle modification for better health and MS management. What’s your take on how lifestyle factors fit into treating MS?
Our content theme for April is ‘advocacy’, so in that spirit, and in your experience as a neurologist specializing in MS, what are some key strategies people with MS can use to discuss lifestyle factors and effective lifestyle modification with their healthcare professionals?
What if someone encounters resistance from a doctor or other healthcare professional – how should a patient approach that, or handle that?
Do you have any essential tips for people who are newly diagnosed and just entering the complex world of treating their MS in the medical arena?
On another note, you’re also quite involved in researching MS’s impact on the African American community. There is much to learn about the prevalence and penetration of MS in different communities. Do you have any insights to share about your work to date?
Finally, what is your vision for how you’d like your practice and work in the MS field to evolve and grow?
Thanks so much for being our guest on Living Well with MS, Dr. Williams. We are excited about and grateful for the amazing work you’re doing in the MS community.

Links:

Learn more about Dr. Williams’ practice, Joi Life Wellness Group
Check out Dr. Williams’ Facebook alter ego, The Nerdy Neurologist
Follow Dr. Williams on Twitter
Learn more about Dr. Williams’ professional background on LinkedIn
Watch some of Dr. Williams’ informative videos on her YouTube channel

Coming up next:

On April 18, unpack your curiosity about our diverse global OMS community for the premiere of Living Well with MS Coffee Break #30, where we travel to Devon, England to meet Tessa Jane Miles, an artist who raises awareness of MS through her creative oeuvre. You’ll also learn about Tessa’s involvement in the Delamore Arts exhibition, for which OMS is a charity partner.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within about 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E50 Transcript

Introducing Lifestyle Change to Your Healthcare Practitioner

Geoff Allix (00:01):

Welcome to Living Well With MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingMS.org/podcast or in whichever podcast platform you use to tune into our program.

Geoff Allix (00:39):

If you enjoy the show, please spread the about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingMS.org, or you can reach out to me directly on Twitter @Geoff Allix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode.

Geoff Allix (01:05):

Now let's meet our guest for this episode. Joining me this week on the Living Well with MS podcast is Dr. Mitzi Joi Williams. Dr. Williams is a board-certified neurologist and fellowship-trained multiple sclerosis specialist who serves as the founder and CEO of the Joi Life Wellness Group Multiple Sclerosis Center in Union, Georgia, USA.

Geoff Allix (01:30):

Through collaborations with national and international committees, she advocates for people living with MS to share in the decision-making process with our healthcare teams to combat this disease. Dr. Williams is the author of MS Made Simple, The Essential Guide to Understanding Your Multiple Sclerosis Diagnosis. She continues to live out her mission to provide personalized multiple sclerosis care delivered with expertise, compassion, and joy. Welcome to the program Dr. Williams, and thank you so much for joining us on Living Well with MS.

Dr. Williams (02:01):

It is my absolute pleasure to be here with you.

Geoff Allix (02:05):

To dive right in, you've got a very impressive background and listeners can get more detail of that in the show notes. You've established a prestigious career as a neurologist and MS specialist. Could you share a bit about your background as a medical professional?

Dr. Williams (02:22):

Absolutely. I've been an MS specialist for upwards of 15 years, really because I have a passion for helping people to kind of navigate this journey. I like the fact that I have close contact with my patients, so that I grow to know them and their family, so almost like I'm a part of their family. I like that and that was one of the reasons that I chose MS as a subspecialty within neurology.

Dr. Williams (02:48):

As my career has evolved, I've really found that there needs to be a focus on education. I began to focus on teaching people about the disease process, because I found that many people would come to see me and they still wouldn't know what MS was, even after they had it for like 10 years. They couldn't really articulate what they thought it was and what it was doing to their body and why they were on the medications they were on. That really started my passion for educating about the disease process, and also in empowering people to do the things that they can, to help their brain health and help their overall health as well.

Geoff Allix (03:26):

Why MS as a specialization? What got you to particularly pick MS?

Dr. Williams (03:32):

I get that question a lot. I think for me, it's the challenge that I like. It's the challenge as well as my fascination with the neurologic process. In many other aspects of neurology, people would have damage to the brain or to the spine, and there was really nothing that we could do to modify that disease.

Dr. Williams (03:54):

The thing that I loved about MS is that every person was different, which made it a bit challenging, but that there also were things that I could do to potentially modify the disease or affect change. Since I started my career, those options have grown exponentially. It's a whole different ballgame now than it was when I started practicing. The other thing that I like is that I really felt like this was a full focus of medicine that was really on the frontier of the scientific exchange.

Dr. Williams (04:26):

Meaning, it wasn't something where everybody had it figured out down to the receptor, like diabetes or high blood pressure, that there was still a lot more to discover. That's also what attracted me to the field of neuroscience, but specifically to MS. I love the patients. I love spending time with them and getting to know them.

Geoff Allix (04:43):

I think it is quite an exciting time now. My father had MS and there wasn't very much treatment, but now it's just every month, there's another treatment. There's some more research being done. There's something found out about causes. It is a highly active area, isn't it, of research and change?

Dr. Williams (05:05):

Absolutely. Our meetings, when I first started practicing, our big neurology meetings would have maybe two or three classes about MS. You start on a Saturday with one class and stay until the next Thursday for one more class, but now, much of the conference has MS classes every day. That just really goes to show how much the science has advanced and how much we're trying to improve our understanding to help treat people with MS.

Geoff Allix (05:34):

To get a bit of an understanding about the Joi Wellness Group. You founded this MS center in Georgia in the USA. What are the core principles of your practice?

Dr. Williams (05:47):

Yeah, so really, my core principles are, I love to engage, educate, and empower my patients to make them active participants in their treatment process. By doing that and starting my own center, I'm really able to spend the time with my patients, educating them about their disease process, helping them understand, and also empowering them with tools to adjust lifestyle or to make lifestyle changes, to improve their overall health.

Dr. Williams (06:17):

We talk a lot about things like mindfulness, diet, exercise, yoga. I'm a huge yoga advocate. It really affords me that ability to treat people how I see fit to really spend and invest that time so that people understand what's going on and know what they can do to improve their health.

Geoff Allix (06:36):

With all these people that you see with MS, you must see certain common obstacles that people have in dealing with MS, all the way from their diagnosis through to the management and treatment of MS. What obstacles do you think that you see most commonly and how would they overcome those?

Dr. Williams (06:57):

Yeah, so some of the most common obstacles are number one, just kind of wrapping your mind around the diagnosis and looking at, kind of thinking about what the future will look like. That part is difficult because I can't predict how someone will do in five years or 10 years.

Dr. Williams (07:15):

But I think that oftentimes through education, and for many, through things like mental health services, counseling, et cetera. As they begin to kind of adapt to that diagnosis and maybe what that new normal is, then we can move forward with looking at treatment options and trying to make the best of the time that we have, and the function that we have.

Dr. Williams (07:40):

For some people it's difficult because they don't have any symptoms. They're like, well, why should I do treatment because I'm fine? Then for some people, it's just kind of the devastation of maybe having some type of impairment where they didn't recover from that first symptom, and now they're having to adjust their lifestyle or career, et cetera. Lots of psychological issues are difficult in the beginning, and at transition periods during the journey with MS.

Dr. Williams (08:07):

I focus a lot on mental health, stress reduction, and psychological services for those that need them. If some need medication, then we talk about that as well. I think the other obstacle, especially in a global pandemic or endemic or whatever we are calling it at the moment is isolation. That part is very difficult. For some of my patients who maybe have mobility problems or mobility impairment, and maybe different types of meetings and functions in the MS community, where it was their way of interacting with the world and now we're not able to do that.

Dr. Williams (08:44):

The isolation has been difficult. We deal, again, a lot with mental health services, looking at ways people can get involved virtually. Trying to troubleshoot to find ways to bring people back into the community, even though they can't physically be there.

Geoff Allix (09:02):

Okay. Overcoming MS, as you might know, is an evidence-based lifestyle modification charity. The tagline is whatever it takes, but with an evidence basis. It's looking at what evidence is out there scientifically, founded by a professor. Yeah, it's very much looking at that evidence base and bringing lifestyle into that. Trying to have better health and MS management through every available method. What's your take on how lifestyle factors fit into MS treatment?

Dr. Williams (09:41):

It's huge. Lifestyle factors play a huge part in an MS treatment plan. When we talk about, or when I talk with my patients about things like medications, I don't talk about those on an island without talking about the other things that they need to do. My motto is that medication plays a part, but you play a part. There's no medication that gets rid of the part you play in improving your overall health.

Dr. Williams (10:11):

There are studies that suggest, for instance, exercise can do things like boost mood, also can help with multiple MS symptoms like spasticity, like depression, like constipation. We talk about the evidence, and we talk about all the different ways that these things like exercise and diet can help aside from just helping your cardiovascular health.

Dr. Williams (10:38):

I think the other thing that there's a lot of attention being brought to is really the effects of stress. There's not a lot of research that we have that directly links stress to MS exacerbations like brain lesions, but certainly we know intuitively that stress can worsen a person's function overall, whether it's with MS or any other chronic disease.

Dr. Williams (11:00):

We spend a lot of time also focused on stress reduction, mindfulness, meditation, things that increase their overall health practices that will help people to live a less stressed life overall. I think there is more evidence emerging, but we still have a lot of work to do where lifestyle modification is concerned in terms of having hard scientific evidence that supports it.

Geoff Allix (11:28):

I think if you ask anyone with MS about stress, then we all know that stress is a factor because some things are really slow to make changes. I remember early on George Jelinek, who's behind Overcoming MS, said, it's like turning around an oil tanker. Making some of these changes is very slow to have an effect. You may not notice say anything for six months, but it's slow. But stress is the one I think anyone with MS will tell you, if you get stressed, then those symptoms come back really fast, but they go away fast if you can calm yourself down, and you feel better.

Geoff Allix (12:12):

There is a definite ... All these things, it's like, oh, have we done double blind placebo trials and all these things? But actually people with MS say, yeah, they know that stress is-

Dr. Williams (12:23):

Absolutely.

Geoff Allix (12:23):

... Is one of those factors. Really quickly ... If I get really stressed out, then suddenly I'm limping all over the place. I know. I can tell I'm stressed because my body doesn't work fully.

Dr. Williams (12:37):

Yeah. I have a lot of patients that report that as well. Again, that's why it's so important for us to continue to discuss lifestyle modification, to talk to people about it. But also for those of us in the scientific community to really kind of put our money where our mouth is and look at some of this research so we can better understand it on a biologic basis as well.

Geoff Allix (12:56):

Yeah, because that's the thing. I'm saying it affects me instantly, but I can solve it instantly by calming down, but equally, is it causing long-term damage or is it literally instant and it's gone? There is obviously ...

Dr. Williams (13:10):

There's a lot we need to understand.

Geoff Allix (13:12):

Yeah. The content theme for the month is advocacy. A lot about patient advocacy and so on. In that spirit, in your experience as an MS specialist, what strategies could people with MS use to discuss lifestyle factors specifically, and lifestyle modification with their healthcare professionals, because it's a very different thing depending on who your MS specialist is, and it depends where you are geographically.

Geoff Allix (13:45):

I think certainly in the UK, you probably have less choice about who the person is, but having said that, then it's based on how much you could afford. Different healthcare regimes are going to be different in different places. I'd say actually in the UK as well, we have less specialists. It's unusual to have an MS specialist. You would normally have a general neurologist. Maybe only if you're in a really big city. I know in London they have a few, but it's rare in the UK to have that specialist.

Geoff Allix (14:20):

Some of them are very old-fashioned. I know that there are some people, and they literally are told, take the pill, have the injection, whatever it might be. Nothing else you can do. Then there are more forward-thinking people who are saying, actually no, a healthy diet and lifestyle will benefit you. How would you suggest people discuss introducing lifestyle factors, whether that be diet, exercise, or mindfulness with their healthcare professional?

Dr. Williams (14:53):

I think the first thing is to recognize that it is okay to have an agenda of things that you'd like to discuss when you see your neurologist, whether it's an MS specialist or general neurologist, because oftentimes you get in that visit, the doctor has things they want to cover. I very much encourage people to write down the things that are very important to you to discuss at that visit. Maybe write down like your top two, because if you have 20, you're probably not going to get through 20.

Dr. Williams (15:23):

But if lifestyle modification is at the top of that list and they say, hello, Mr. so-and-so, how are you doing? You can tell them how you're doing in terms of your MS, but today I really am interested in hearing about what things I can do lifestyle-wise that would help me. Opening the conversation with that often can get that provider thinking about how to answer that question.

Dr. Williams (15:48):

Also, in this day of technology, if you don't have a specialist, there are resources that you can find that talk about lifestyle management. Of course, you have your podcast, you have your educational resources. There are other specialists in different parts of the world who are kind of talking on these topics. Unfortunately, sometimes you have to educate yourself.

Dr. Williams (16:12):

In a perfect world, your neurologist would be knowledgeable about everything, but very much like your experience in the UK and the US, many people with MS are cared for by general neurologists. Some of those general neurologists have a special interest in MS and learn about it. Some of them not so much. You may not always have that specialist who has a lot of knowledge of the latest research on these types of things, but it's okay to have an agenda. It's okay to have a list of questions that you want to ask. If that's at the top of your list, just saying, I want to know what I can do to improve my health, and that's a great way to lead in talking to your specialist about lifestyle modification.

Geoff Allix (16:58):

Are there any tips to anyone getting resistance to managing things themselves?

Dr. Williams (17:06):

Yeah. Again, in some cases you have choices about who you can see. We certainly do have a little bit more leeway or some leeway in terms of choices in the US. I have not necessarily encouraged my patients to fire their doctors, but I've had some where I said, well, it's kind of like with any relationship. If it's not working or you don't feel like you're being heard, explore if there are other options.

Dr. Williams (17:37):

For some people, it may be a matter of maybe seeing a specialist once a year. What if you could see a specialist once a year, and then go to your general doctor the other times? Or see a specialist and have this list of questions and say, okay, I'm going to try to get as many of these questions answered that my general person can't, and make a special visit to see a specialist just for that purpose.

Dr. Williams (18:02):

There are some ways to work around it. Some are not quite as ideal, but I think that it is okay to have an agenda. If your questions are not answered, it's okay to circle back and say, okay, well can we get back to this question that I had to better understand how I can help myself?

Dr. Williams (18:22):

The other thing is that bringing it up from a topic of brain health. Lifestyle modification for MS is something that is becoming more frequently talked about, but brain health is also something that's globally talked about by neurologists. It may be a question of bringing up, well, what can I do to help my brain health? That may elicit the same type of information, but maybe not specifically what lifestyle modification can I do to help MS. Helping MS and improving brain health kind of go hand in hand.

Geoff Allix (18:55):

I think there's another thing that's come to me is litigation can be an issue. Certainly in this country, neurologists or any doctors are very reluctant to say things which are not proven because they are then potentially at risk of saying something that's not, in our case, the NHS line. They will only tell you the absolute ... And that tends to be quite a long way behind the evidence. It takes a long ... They are now ... I mean, I've already seen this in the sort of five or six years I've had MS, that they're sort of catching up with you should increase your vitamin D levels. You should do more exercise. It's sort of like catching up with things that I thought, well, there's loads of evidence for that five years ago.

Geoff Allix (19:45):

They're like, well, yeah ... But they're sort of very slow to change. One of the questions I found that was really useful for my neurologist is what would you do? Because then I've sort of turned it around to another question. It's like, well, I'm not saying what's the official advice, but if you were in my situation, what would you do? That really changed the conversation. He said, well, in that situation, then I'd eat whole foods diet and I'd exercise. I was like, all right.

Geoff Allix (20:15):

He said the official advice ... He said, that's not proven, and the official advice is to take your medication, do these official NHS guidelines. But yet if I was in your situation, I can't see there's a risk in having a healthy lifestyle, at least as much as anything, it would probably lower your chance of having heart disease and other comorbidities that aren't a good idea if you've got MS anyway.

Dr. Williams (20:44):

Absolutely. I do often get that question. I usually get it from a family member. If this were your family member, how would you approach this? That's a way often people will say, well, what would you do if you were me? Or their family member will say, well, what would you do if this was your family member?

Dr. Williams (21:04):

Again, that'll get you a different perspective. I think everyone's going to say, well, we don't have a lot of scientific evidence to back this up, but this is the general thought, or there's some research that suggests this. But the goal ultimately is to try to help people. We definitely don't want to give anybody bad advice, but we do have to be clear about what's not necessarily supported by a lot of research and what areas still have some work that needs to be done.

Geoff Allix (21:35):

This is a bit of a can of worms question, but it's, do you have any essential tips for people who are newly diagnosed for treating their MS in the medical arena? That could be something that goes on for weeks, that question. Tips for the newly diagnosed though.

Dr. Williams (21:57):

The first thing is to work with your healthcare provider to establish a plan that works for you, because everybody with MS is different. Everybody's plan will look a little bit different. The treatment that may work for you may not work for somebody else. I think also it's important to think about what your goals are. There are multiple studies that have been done looking at what healthcare providers' top goals are with treatment and patients' top goals of treatment, and sometimes they don't match up.

Dr. Williams (22:30):

Thinking about what you want to accomplish if the way that the medication is given is important to you, if how frequent it's done is important to you. Just kind of writing down those priorities. It may not be where we're able to meet every one of those, but certainly that gives your healthcare team an idea of kind of what the top things are that are important to you.

Dr. Williams (22:54):

I think the other piece is connecting with the community because support is extremely important. As much as I try to empathize with my patients, I don't understand what it feels like to have MS. I think it's very important to connect with others in the MS community who know exactly what you're going through. Maybe not exactly, but who maybe has overcome some of the challenges that you have, and kind of help you walk through that process. Connection to the community is extremely important, setting those goals, what you would like to accomplish, and then as much as feasible, communicating with your healthcare team to come up with that plan that works best for you.

Geoff Allix (23:38):

Just to change tack a little bit, on another note, you are involved in researching MS's impact on the black and African American community. There's a huge amount to learn about prevalence and penetration of MS in different communities. Going back to, I think a lot of people with MS will have seen maps of where the prevalence of MS is and saying, well, there's obviously a connection with vitamin D and sunlight.

Geoff Allix (24:03):

But then equally, that could be an aspect of the ethnicity of the people. It could be that the diets are different. It could be that it tends to be the more developed world is further away from the equator in most areas of the world, so that could be a factor. There are so many variables, I think. However, having said this, almost impossible to work out, do you have any insights to share about your work on MS in the black and African American communities?

Dr. Williams (24:41):

Absolutely. MS is traditionally ... Globally, MS is still a disease that's considered most prevalent in people of Northern European descent. However, I live in the southern part of the United States where a large portion of the black and African American community lives. When I would go out in my waiting room at my various practices, I was in academic practice and I was in a large eight partner multiple sclerosis center, now to my own practice. A majority of the people that I see were black. It didn't match up with what I had learned in my training.

Dr. Williams (25:14):

Then also we began to see that maybe some of the outcomes were a little bit different. People had a little bit more walking disability. Some people had more aggressive disease, not across the board. That really led me to begin to look at the literature and the research to see what I could find out. Unsurprisingly, there wasn't very much to look at. I was able to participate in a review article when we looked at the black and Hispanic Latino populations here in the US.

Dr. Williams (25:44):

When you looked at the amount of literature back in 2014 at least, out of 50,000 articles written in English, there were only about a hundred about black people with MS. There were 20, less than 20 for people who were Hispanic Latino. That really was what spurred me on to try to do more research focused on this population, to better learn and understand.

Dr. Williams (26:10):

Also, if there were some people who were doing worse, what could that teach us about the whole MS population? How could we take this knowledge and apply it to the broader population? We've learned so far that there are some people who tend to do a little bit worse, but we don't know what parts of that are related to things like social determinants of health, ability to access a doctor, ability to access better food choices, things like that, and what part of that may or may not be biologic.

Dr. Williams (26:41):

We still have a long way to go, but there are many of us that are working on trying to better understand, and also increase the diversity in our clinical trials so that people have access to cutting edge medicine, which is often the case with our trials, but also so that we better understand MS so we can treat everyone better and help to make treatments more specific for everyone.

Geoff Allix (27:03):

Just to put it out there then, if you have someone who is born in, let's say Nigeria and lives their whole life in Nigeria, would you think that they would have a different outcome to someone who is born in the United States with Nigerian parents? They are genetically the same, but one person lives their life in the United States and one person lives their life in Nigeria.

Dr. Williams (27:35):

That's the very question we're trying to answer. If you look at older studies that suggest that if you move from a low-risk area to a high-risk area before the age of 15, that you take on the risk of the high-risk area. But we haven't really identified what environmental factors may be related to that. Is it things like Epstein-Barr virus, which is a really hot topic with MS right now? Is it some other environmental factor? Is this some dietary factor? Everyone's talking about the gut microbiome. These are very complex associations.

Dr. Williams (28:10):

The other issue when you look at the continent of Africa, there's been very little research about MS that has come out of that area. We see more NMOSD or neuromyelitis optical spectrum disorder in people who are considered African. However, some of that could be potentially because of access to care. I'm fortunate to be involved in a very large clinical trial that's looking at black and Hispanic Latino populations here in the US. We also have a cohort in Africa of 10 patients, which is the largest cohort that's ever been reported.

Dr. Williams (28:50):

Again, we may be finding out more and more as we are getting access to different resources and learning more about MS in different parts of the world. The honest answer is, I don't know. That was a long way to say, I don't know. But certainly, we are trying to figure out some of the answers to these questions as we get more data on a variety of populations.

Geoff Allix (29:15):

Okay. It is fascinating the amount of research that’s going on, I think. Finally, what's your vision on how you'd like your practice and work in the MS field to evolve and grow? What do you see as a positive future?

Dr. Williams (29:29):

What I would really love to see is the holistic management of multiple sclerosis. I think that as a scientific community, we've been so focused on treatments because our treatments in the past have been very limited. When I first began practicing, we had the platform therapies and we had maybe one or two IV therapies, one of which we don't really use anymore. I think that now that we have over 20 different options, it's not that we give up on trying to find new ways to treat MS medically, but now I think it's time to kind of take a step back and say, how do we look at this holistically?

Dr. Williams (30:10):

We know that there's a part that medications can play in modifying the disease, but what are the other pieces that lead to someone living well with MS? Because I think all of us have seen people who are on medication, but still not doing well. How do we begin to look at these things that really affect the people that we get to serve on a day-to-day basis? Like their diet, like their ability to exercise, like stress, which can potentially exacerbate or make symptoms worse. How do we begin to work on these things so that we're not just looking at one piece of the puzzle, and instead looking at the whole person and how we can really treat them and make their everyday life better with MS?

Geoff Allix (30:50):

With that, thank you so much for joining us and being our guest on Living Well With MS, Dr. Williams, and we're excited and grateful for the amazing work that you are doing with the MS community.

Dr. Williams (31:02):

Absolutely. Thank you so much. It's been my pleasure.

Geoff Allix (31:11):

Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingMS.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingMS.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode.

Geoff Allix (31:40):

Geoff Allix (32:11):

While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

Geoff Allix (32:28):

The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

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Welcome to Living Well with MS Coffee Break #29, where we are pleased to welcome Linda Boueke as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Linda, coming to you straight from Hamburg, Germany.

Linda’s Bio:

Linda is from Hamburg, Germany, and she was diagnosed with RRMS in 2014. She immediately changed her diet and after attending an OMS seminar in 2016, she started to adopt the OMS Program completely. Since 2017, she has served as an Ambassador for the OMS Circle in Hamburg, and she sometimes holds seminars in Germany to help inform others about OMS. In 2019, she has started a second career as a solo-singer and performer. Following her dreams has become easier because OMS has helped her regain strength and focus, so she is incredibly thankful to have found OMS so early.

Questions:

Linda, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS Program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you faced at first in adopting the OMS Program, and how did you overcome them?
When did you first start to see any kind of positive results in following the OMS Program, and what were these?
You’re currently very involved in the OMS community, particularly as the ambassador of the OMS Circle in Hamburg. Can you talk to us about the OMS Circles experience, and what that’s meant to you?
I also understand that you conduct seminars about OMS principles in Germany, trying to raise awareness about the positive aspects of lifestyle change for people with MS. How’s that going and what motivated you to start that endeavor?
One of your guiding principles is the concept of flow. Can you tell us a little about that and what it means to you?
That’s a good segue into things in your life in which you find “flow”, such as singing and dancing. Can you share a little more insight into your creative passions?
Linda, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Three Interesting Facts About Linda (in her own words):

I find it so important to spread the word about the importance of lifestyle and the OMS Program to enable others to live a full and healthy life even with the diagnosis. Hope is a crucial thing to fight the mental challenges of such a diagnosis, and OMS provides evidence-based hope. I wish for many others to find the strength in themselves to change their lives for the better by adopting the OMS lifestyle and to live a full and healthy life for many years.
To prevent depression, which is common in people with MS, I find it most important to listen to your inner voice. Find out what you really want to do and with whom and try to get rid of energy-draining things and people in your life. I write a journal every few days, and I rigidly stick to the habits of at least 30 minutes of exercise (about 6 days a week) and daily meditation. I love my new eating habits though it was hard to change my diet at the beginning. Even if got rid of MS today, I would not go back to the way I used to eat.
I was thrilled to learn about the Concept of Flow, which I encountered during my singing studies. Stimulating the ventral vagus nerve helps to counteract the stress response of the body and may enable you to reach peak performance and allow your body to heal. For my life, that means that I try to do what I love as much as possible – sing, dance, meet easygoing people, paint, and write. When you don’t feel time passing, and you are neither bored nor stressed, then you are probably enjoying “flow”.

Linda’s Links:

Linda loves this healthy vegan brownie recipe.
Linda also loves these two vegan pasta recipes from Deliciously Ella and The Happy Pear.
Check out Linda’s artwork on her website.
Hear Linda’s vocal talents on her Facebook and YouTube You can also check out her Instagram.
Linda does Zumba at home for exercise by watching these uplifting YouTube videos by Euge Carro.

Coming up on our next episode:

On the next episode of Living Well with MS, premiering April 6, 2022, meet Dr. Mitzi Joi Williams, a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who serves as the Founder & CEO of the Joi Life Wellness Group Multiple Sclerosis Center outside of Atlanta, Georgia. She’ll tap into her deep well of medical experience to provide a practical roadmap on introducing lifestyle change to your healthcare professional.

Don’t miss out:

S4E49b Transcript

Coffee Break #29 with Linda Boueke

Geoff Allix (00:01):

I'm your host, Geoff Allix. Today, you'll meet someone living with MS, from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast.

Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break.

Welcome to Living Well with MS Coffee Break #29, where we are pleased to welcome Linda Boueke as our guest. As always, your comments and suggestions are welcomed by emailing podcast@overcomingms.org. We hope you enjoy this episode's conversation with Linda from Hamburg, Germany.

Linda was diagnosed with relapsing-remitting MS in 2014. She immediately changed her diet and after attending an OMS seminar in 2016, she started to adopt the OMS program completely. Since 2017, she has served as an ambassador for the OMS Circle in Hamburg, and she sometimes holds seminars in Germany to help inform others about OMS. In 2019, she has started a second career as a solo singer and performer. Following her dreams has become easier because OMS has helped her regain strength and focus. So she's incredibly thankful to have found OMS so early.

So Linda, welcome to Living Well with MS Coffee Break. We're very pleased to have you on our program. And just to explain the purpose of this series is to get a better understanding of the members of the OMS community from around the world. And today you're in the hot seat. So could you tell us a bit about your day-to-day life?

Linda Boueke (02:24):

Well, thank you, Geoff, for having me, and yes, I'm honored to be guest of your show today. About my day-to-day life, I've spent many years at home raising four boys and after working in marketing for a time, but then I got my diagnosis and I struggled to find some new balance really because obviously sort of a midlife crisis was culminating with the empty nest syndrome and with a diagnosis. And what happened was I had to walk a long way of reflecting and orientation, what I wish for in my life now and putting myself first after many years to remain as independent and healthy as possible for myself. Yeah.

Geoff Allix (03:18):

And was it an easy diagnosis? Was it obvious you had MS? And did the doctors diagnose you quickly?

Linda Boueke (03:25):

Well, it was a bit tricky really. In 2010, I had swine flu, which is a virus which happened to be here in Germany. And I had stomach problems and fatigue, even had to have household help for some time because I couldn't cope. And I had many lesions in my brain really and took lots of tests, but I didn't get the diagnosis then. I had speech problems and couldn't write on the keyboard properly. And still the neurologist said it could be different things and sent me home like that.

And in 2014, I had another relapse probably with tingling in the body, probably known to our audience. And I got the diagnosis from the radiologist really. It was quite a shock because he said, "Well, what else should it be if not MS?”

And yeah, well then, I tried to find a way to cope with that. And I had the immediate feeling. I had to do something about that myself and got the impression this illness picked the wrong person to surrender to some future of doom really. And I got a feeling like Hermione in Harry Potter, she always goes to the library. So I turned to reading lots and lots of things and found out all I could, because I didn't want to be out with it by others and let alone doctors just here to tell me what I had to do and wanted to become an expert for this condition and to be able to make the right choices for myself.

Geoff Allix (05:21):

So when did you come across the OMS program?

Linda Boueke (05:25):

Actually, I took a little detour. I first found Sven Becher, who's a journalist in Germany, who has MS as well. And he wrote the book, which I had read in the spring of that year. And on the backside of the book [inaudible 00:05:45] there was a message, like he has MS and now he's, yeah, getting along fine with it. And I wrote emails with him. So I tried to find out what he had done and what he had found out. And he was very helpful and sent me his, yeah, sort of script. And later on, I bought his book as well. And there were many hints to OMS. Because he has many, yeah, sort of similarities to OMS in his approach.

And six weeks after my diagnosis, I read the OMS book obviously. And I changed lots of things. Yeah. I like the approach, do whatever it takes to stop the progression. And still I struggled because the quality of life you think you have in your life, you have to sort of find a way to, yeah, optimize your quality of life, even though you will change your diet and do a lot of for your health, you know that.

Geoff Allix (06:55):

Are you in an area of Germany where there's very much dairy consumption? And I mean, honestly, I haven't been to Hamburg. I've been to Munich. I've been to Berlin, but it does seem to be the German diet does seem to be quite heavily meat based, dairy based. Is that the case where you are, is it difficult to make a transition further?

Linda Boueke (07:19):

Yes, definitely. I had some help for my stomach, really, because in that year I had so many stomach problems before so when the diagnosis came, and I realized it was better for my stomach problems because it was for really like a chronic inflammation of the stomach at the time. And so I had already decided to cut out dairy a lot. Yeah, it was really hard in the beginning, I think.

And I think the main problem is you never individually know, which sort of measures lead to which outcome. And you cannot know for sure if the lifestyle or medication choices you make are definitely the cause for your wellbeing or for possible relapses. And it's a marathon. And so you have to sort of jump on the train someday to decide if you are going with the lifestyle choices or not. And you can never be sure if it's this measure or that measure [inaudible 00:08:32]

Geoff Allix (08:32):

No, it's like medications. If there was one medication that we could take and it would cure us and everyone took it and it would be fine, but there's so many because they affect different people in different ways. And yeah, it's a very varied condition. Isn't it?

Linda Boueke (08:46):

I had read something about happiness from a German author and he talked about seven areas which can lead to more happiness or not. And I realized eating is not one of them. So that was sort of, yeah, a relaxing moment because I thought, well, if that's what studies say, eating is not part of it, then it's only really family and friends, which is a part of being happy, which makes it so difficult because you have to sort of yeah, communicate with your family, with friends when you change eating that much. And that's what's really hard in the beginning, but it's not eating itself that's causing so much trouble for your happiness.

Geoff Allix (09:31):

So going for a meal can make you happy. But the actual eating part, it's the social part rather than the eating the food. That makes sense.

Linda Boueke (09:38):

Yeah, and what I found out is that I can be very happy with this diet, and I wouldn't change it back really, even if they got a pill against MS, because I'm so happy with my new lifestyle at this time that really this struggle was life changing. [crosstalk 00:09:56]

Geoff Allix (09:56):

So was that the biggest challenge you had in adopting OMS? In other words, were there other parts of the program that were difficult to adopt?

Linda Boueke (10:07):

Yeah. I struggle a little with meditation really. I rigidly stick to it. I do my 30 minutes of meditation each and every day, but I must admit, even after seven years now, I'm not an expert. I realize that some days I'm getting there, I'm getting calmer. And I come to a state where I think my brain's relaxing, and perhaps healing is possible or something, but many days I can't, I think my brain is overactive. I always have these many thoughts and it's just, yeah, I can't.

Geoff Allix (10:47):

Yeah. I mean, I do know some people who like yoga instruction and things like that, and they can just do it without listening to any soundtrack. They just go, well, I just sit and meditate, but I still need to have some sort of guidance, but even though some of them actually have quite long periods of silence. And so I'm listening to nothing, but so why does, how does that work when actually I can't sit here and just be here, I don't know.

So for me, I tell you sometimes I can kind of get it where I'm doing it without it being guided, but I would hope by now I could do that, but, yeah, I find it a lot easier to be listening to guided mindfulness sessions. There are so many available now, which is brilliant. So at least there’s that, yeah.

Linda Boueke (11:34):

I listen to guided meditation I made up myself because I read so many books about meditation that I thought I bring it all together with visualization and healing meditation, and breathing meditation that probably even there, I wanted too much and put it all in one tape. And so I listen to that every day and [crosstalk 00:11:56] come the way.

Geoff Allix (11:59):

And when did you start to see, or you were saying that it's difficult to really say what's caused changes, but did you see positive results, improvements in your condition after you adopted the OMS program?

Linda Boueke (12:17):

Well, yes, I can say that. I think, I mean, I had late relapses. I had one relapse in 2010 and the next one in 2014. So then in the beginning of 2015, I had one more, a really bad relapse. My right arm went numb, and I was getting really afraid because that's a bad feeling, as you can imagine. But then it got better, and I only have a, yeah, left numb hand a bit, but it's usually usable and so I'm very happy with that. But what was better then was the stomach, which was inflamed. And I have almost no problems with that nowadays.

And I had some eczema and hay fever, which is part of an overreacting immune system as well. And I could really see that subsiding. So I haven't had any problems with that anymore. So that's part of seeing how the body gets less inflamed I think, that's for me what's the sign.

Geoff Allix (13:33):

Yeah. I think when you were saying that you'd carry on with the diet, even if they had a pill which cured MS. I think because there's so many other things, I think it's just healthy for our bodies. And certainly my neurologist said this, he said, "It's going to reduce your risk of heart disease, reduce your risk of cancer, diabetes, or all these things." And so actually, yeah, I agree. I think it's just healthier to live eating a whole food-based diet. It is healthy.

Linda Boueke (14:00):

Yeah. People kept telling me you're looking so very healthy with what you're doing. So something must have changed really. And it's a good feeling in the body. And my doctor, he says, "I've got the best cholesterol reading." Cholesterol?

Geoff Allix (14:18):

Cholesterol, yeah.

Linda Boueke (14:20):

Cholesterol profiles [inaudible 00:14:21] it's more patience.

Geoff Allix (14:21):

I get this all the time. I just had a load of tests, like some annual tests done last week. And they're always saying, they say, "Oh, you're really healthy." I'm like, apart from the obvious reason that I'm here, I mean, clearly, I'm here because I have MS. I go, yeah. Well, apart from that, you're really healthy. So yeah. All my blood pressure and all the tests, everything, so, oh yeah. So that's good anyway, because you don't want to have comorbidities. I mean, if we had diabetes and MS, that would obviously be more problematic.

So as much as anything, I think it is healthier. And if they did cure MS, I agree I'd carry on as much with the program. So you are involved in the OMS community, and you are the ambassador of the OMS Circle in Hamburg. So could you tell us a bit about OMS Circles and your OMS Circle?

Linda Boueke (15:13):

Well, yes. I think it was in 2017 that the OMS Circle program was launched because OMS, the charity, wanted to sort of spread the word worldwide and sort of install a community where peer to peer support is possible. And when I read about that, it certainly hit me and I thought, well, I have to be part of that because I had visited a one-day seminar in [inaudible 00:15:45] in 2016 and was really enchanted by the community I met there, and I was really sad because in Germany nothing was happening in regard to OMS.

And I was feeling really lonely at the time because I hardly knew people with MS and let alone people who followed OMS program and so I was craving to meet people who were on the same journey in a way. And I wanted to pay back somehow and yeah, help spread the word about what OMS has to offer and help people who want to be, yeah, helped.

Geoff Allix (16:33):

And how have you found the Circle with COVID restrictions? Has that continued?

Linda Boueke (16:41):

Yeah, before we had meetings here in real life every four to eight weeks. And when COVID started, obviously that wasn't possible anymore and we changed to online meetings, which is, yeah, partly good thing because my Circle is quite large. As I was the first ambassador in Germany, people from all over the country sort of gathered in my Circle in the beginning. Now we've got, I think, 10 Circles in Germany and some still remain in my Circle. And so we can gather with people from many kilometers away online, which is fine, but it's not the same as meeting in person. I'm really looking forward to being able to host an offline meeting these days. Yeah.

Geoff Allix (17:41):

Yeah. We have just started where we are. We had one, about a month ago we had our first sort of actual face to face meeting, and it was really nice. I mean, yeah, it's nice talking to people, but actually there is something about being there physically and everyone they brought so much food. It was ridiculous. Because I was like can everyone bring something and then we'll have a lunch. And everyone, I think, because it had been so long thought, right, we're going to bring lots of food. And there was just a huge feast, and it was great because we could eat everything. And so they had really gone to town, and it was like amazing. So it was really nice to meet up.

Anyway, you also conduct seminars about OMS principles in Germany to raise awareness about lifestyle changes for people with MS. So how is that? And why did you start doing that?

Linda Boueke (18:32):

Well, as I said, I was in marketing once and I'm probably not a shy person. So when I'm convinced of a cause, I naturally want to share that insight with others to give them the chance to benefit from the evidence and blueprint for good health that others have discovered. Isn't that the point of human development and progress in a way? An idea spreading to change mindsets and realities and lives by interaction. That's sort of, I like this evidence-based, down to earth approach of OMS.

And I like that it doesn't try to antagonize between natural medicine and sort of the academic medicine. And so I think this inclusive and a relatively easily applicable approach that emphasizes the self-management abilities of every single person with MS is so valuable that I felt I have to do whatever is possible for me to reach as many people with this message as possible.

And obviously people are coming to my circle so I can inform them and help them as much as I can. But I sort of wanted to scale it a bit higher and reach more people who haven't heard of it. And so I was able to, yeah, hold some seminars and webinars in the last year to inform the German community about the OMS program, which is not widely known.

Geoff Allix (20:15):

And there's a German version of the OMS book, isn't there?

Linda Boueke (20:19):

Yes. I think it appeared in 2019 or I'm not sure when really, but it was quite late sort of, and then you could go with this book to a neurologist and say, "Have you read this? Please read it. It's important." So I tried that sometimes. Yes.

Geoff Allix (20:40):

And one of your guiding principles is the concept of flows. This is completely new to me. So could you tell us about what flow is and what it means to you?

Linda Boueke (20:51):

Oh yeah. It was new to me as well. During recent years, I visited a course of complete vocal technique really to sort of improve my singing abilities a bit. And we had a seminar within that about flow. And I wondered what it was. And we met with a great teacher, Raby Lahood, who was really a singer and performer. And he's very deep in this flow concept and research. And yeah, to put it briefly, flow is sort of, you can say it's happiness, but you can also say it's a nervous status, which is between boredom and overburdening.

So it's when you feel at ease, when you are doing things you like, when you forget time. Sort of really in the moment, not thinking, just doing what you do and being good at it. So that's a concept which also some in a professional context, sometimes people like to talk about flow because they want their staff to be in flow as much as possible because they reach peak performance when they are.

So when you don't feel overburdened or stressed out and you're not bored, you are in the perfect performance zone of your nervous system really. And when I found this concept, it was about singers and performing on stage without getting sort of too nervous to sing or without getting stuck in your lyrics or something. But it also applies to everyone, not only to singers, because when you get into this flow zone, in the actual nervous system, healing is possible and social interaction is possible. And it's really, it's sort of the basis is the polyvagal theory, which you can look up. It's like, you've got the sympathetic nerves. I don't know if it's sympathetic-

Geoff Allix (23:14):

Yeah. Sympathetic nerves or similar.

Linda Boueke (23:14):

Yeah. And the parasympathetic nerves are its opposite. And the polyvagal theory has found another sort of part of the parasympathetic nerves, it's like three parts. And only if the third part is effective, you are in flow and your system is in a good and balanced state. So what comes out for me is that I try to focus on things that bring me this sort of flow situation that I'm feeling at ease, that I'm feeling the time flow away like nothing. And that's what happened when I sort of yeah, work with my arts.

Geoff Allix (24:00):

Yeah. So I think most people with their MS are aware that stress is not good. Because I think we are physically sensitive to stress. I think most people realize that they're getting stressed, but you also said, boredom is the other thing. So actually, so if we are avoiding stress, but also we want to avoid boredom and we want to be in that middle zone. So we-

Linda Boueke (24:21):

That's right. And I think I always struggled with meditation as well because I am easily bored by that. And so perhaps a different approach would be just sort of to meditate by doing something that really brings you in focus, that you enjoy so much, that you are in the here and now without thinking about anything else. So that might be a sort of meditation as well.

Geoff Allix (24:51):

Yeah. I mean, yeah this has come up with mindfulness experts and they say, that's the difference between mindfulness and meditation. Meditation is actually meditating, but actually you can do so many things, you can go for a mindful walk, so you can go for a walk in the countryside and that can be a completely mindful activity. You don't have to meditate if you find that it bothers you. And then that's obviously in the right flow state, but why not go for walk? Why not go for a cycle ride as these things can be done mindfully?

So then you are still, yeah, you can do everything. It can fit with everything. So talking a bit about how you got to learn about flow, brought up the sort of singing side of it. So could you tell us a bit about your creative passions and singing and dancing and what you got involved with there?

Linda Boueke (25:40):

Yeah. Well, I always enjoyed, yeah, singing, dancing, and painting. I couldn't decide which most really, and yeah, after sort of getting over the shock of the diagnosis and finding my new way with the OMS program and sort of caring for my health, I decided to sing and dance and paint as much as possible. And try to start a second career really, to do it seriously, sort of to go on stage and present a solo program with a pianist and try to write songs.

And now I started with a new band, and I have painted a lot last year because obviously going in stage in COVID times is not so really easy. I had my first show in 2019 and I had some bookings for 2020 and then it all stopped. But I have found a new pianist and the rehearsals with him were definitely a most welcome help against mental stress during the pandemic, because we were able to meet and to perfect the program and yeah, after the vaccination, I also started to do dancing again, as much as possible. And I'm almost looking forward to my next MRI to see if this flow has all solutions, but yeah, I would be happy to see that. At least the MRI in 2020 was stable, so better than nothing. Yeah.

Geoff Allix (27:31):

So Linda, thank you very much for being part of the Living Well with MS Coffee Break series and allowing the community to get to know you a bit better. But one last question before you go, and there's a tradition that we like to ask Coffee Break guests. If you could tap into your experience with MS generally, or OMS specifically, for a piece of wisdom, particularly for people who are new to the program or new to MS, to help them adopt the OMS program, what would that advice be?

Linda Boueke (28:04):

Oh yeah. I've got a big table in the, no, what do you call that? I've got many of these sort of codes on my mind, which I try to remember when I'm getting low. And one of them I read online. I don't know who this was. Stop that silly grieving.

Geoff Allix (28:30):

Okay. Yeah.

Linda Boueke (28:32):

That really hit me at the time because I was grieving a lot for my old life. And just to realize that grieving doesn't help at all, you just have to look forward and try to see what you can find in the future. That helped me a lot because, yeah, it was like a slap in the face stopped that silly grieving. And I am really for that, whenever I get a feeling of despair, I have to try something new, start something new. And I think new beginnings, new projects, joys in life mean a new beginning. Always that's a quote I like. So that would be my advice, just to get out of that stuck feeling when you feel like nothing is in the future that you want to see.

Geoff Allix (29:27):

Okay. Thank you very much for that. And thank you for joining us.

Linda Boueke (29:30):

Yeah. Thank you.

Geoff Allix (29:31):

You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

To learn more about overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for a monthly e-newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS Family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

View Details

Bio:

Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother, who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on his mother. He’s the creator of The MS Warrior Program, which has been completed by over 1,000 people with MS since its launch in 2018.

Questions:

Welcome to the program, Dom Thorpe, and thanks so much for joining us on Living Well with MS.
Let’s dive right in. Your background is quite interesting. Can you tell us a little bit about how you became a fitness trainer? What was that path like?
What are you doing now in the fitness space? Tell us about your online fitness enterprise.
Through Dom Thorpe Online Fitness, you seem to have a target focus on people with limitations in their ability to perform traditional exercise. How did you decide on this focus?
One of your target audiences are people with MS. Do you have any personal connection to MS?
As you may know, the charity behind this podcast – Overcoming MS – promotes evidence-based lifestyle modification for better health and MS management. One of these factors is exercise. What’s your take on how improving lifestyle factors such as exercise and movement may correlate to improvements in the physical symptoms of MS?
Can you break down the key elements of your fitness program and how they apply to people with MS?
Tell us a bit about your MS Warrior Program? And does it suit all levels of ability?
If you could distill your fitness expertise into 3 key tips for people with MS of any ability who want to develop some sort of regular exercise or movement regimen, what might these be?
Thanks so much for being our guest on Living Well with MS, Dom. We are thrilled to learn about the amazing work you’re doing to encourage fitness to people with MS at all levels of ability.

Links:

Learn more about Dom’s fitness training programs, including the MS Warrior Program, here
Access free MS Fitness Essentials here
Check out Dom’s work on Facebook and Instagram

Coming up next:

Join us for the next episode of Living Well with MS Coffee Break, our 29th installment, and travel to Hamburg, Germany, to meet Linda Boueke, the ambassador of its OMS Circle and one of the most dedicated members of the global OMS community.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E49 Transcript

Exercise Tips for All Abilities

Geoff Allix:

Welcome to Living Well with MS. The podcast from Overcoming MS. The world's leading multiple sclerosis, healthy lifestyle charity celebrating its 10th year of serving the MS community. I'm your host, Jeff Alex. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode, show notes for more information and useful links. You can find these on our website@overcomingms.org/podcast or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast, have questions or ideas to share, email us at podcast@overcomingmess.org or you can reach out to me directly on Twitter at Jeff Alex. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform.

Geoff Allix:

So you never miss an episode and now let's meet our guest for this episode. Welcome to the latest episode of the Living Well with MS podcast. This week, we're talking about exercise tips for all abilities with Dom Thorpe. Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on her. He's a creator of the MS Warrior program, which has been completed by over 1,000 people with MS since his launch in 2018. So welcome to the program Dom, and thanks so much for joining us on Living Well with MS.

Dom Thorpe:

Thank you for having me.

Geoff Allix:

So to dive straight in, you've got quite an interesting background. Could you tell us a bit about how you became a fitness trainer and what was your path to becoming a fitness trainer?

Dom Thorpe:

So the fitness thing happened a bit by accident actually, because I came to London, I say came, I'm not there anymore. I've just moved out. But I arrived in London in 2000 to do university where my degree was an engineering design type thing. But my original goal was to design sports footwear. And so like with trainers and things like that, like Nike and those kind of things, but because of that, there were various units in my course that were sports specific. So they lumped us in with the sports science students and occasional lectures here and there. And so I think that was where I started learning a bit about fitness, but one of my jobs to keep me afloat throughout the university days and pay for my beer money, I suppose, was working in the gym.

Dom Thorpe:

And by the end of university, I think I established, I probably wasn't a great designer, but quite enjoyed the fitness industry. And so I moved from a part-time position into a full-time role, and it went from there really, but as a manager, and I don't know, if you want me to expand upon the [inaudible 00:03:21] at this stage in terms of how that went into my career, but there was a leak from gym management to wanting to run a disability specific fitness company.

Geoff Allix:

Okay. We'll get on to that in a bit, but that relates to what you're doing right now. So what are you doing now in the fitness space and what's your online fitness enterprise now?

Dom Thorpe:

Through a massive stroke of luck, I had moved entirely online actually just a few months before coronavirus actually hit or struck. So I'd been doing prior to that face-to-face personal training, just traveling around London, visiting clients with all sorts of disabilities, but the majority of those clients would be people with MS because they could see the backstory of me and my mom having MS, which was what led me into this niche, if you like. So that was where a lot of my experience came from seeing clients face to face, but the knowledge accelerated massively when I started reaching out to an online audience and speaking to a lot more people with MS. And that enabled me to launch what was my first program for people with MS, which is the MS Warrior program.

Dom Thorpe:

And it all coincided as a bit of a fluke, completely random stuff happening, right? I had a client who had no physical limitations at all. He was just somebody that met me from word of mouth. And I trained him for a number of years and then he stopped training. And then he called me back a few years later and said, "Oh, my wife would like to also do a bit of this exercise." And so I was training them both. And I said, "Oh, Jen, what are you up to these days knowing that she'd previously worked in charities." And she said, "Oh, I'm now at the MS society." And I was like, "Oh right, interesting." Because that's what I do with a lot of my clients. And she was like, all right, interesting.

Dom Thorpe:

And again, another massive fluke at that time. They were looking for a fitness instructor to present and deliver their online fitness videos. And she said, let me speak to so and so, and I wonder if we can get you in. And within a couple of weeks, they'd brought me in. We were filming in the same studios as Dragon's Den, or Shark Tank if you are from the US, filming the fitness videos and then they launched them. And I think that again helped expand people's awareness of me. And yeah, everything's online now. I don't do any face-to-face anymore. And the MS Warrior program is one of them, but they also offer a program called the Custom Fit program, which is a more customized one-to-one coaching approach as well. But again, done remotely. So yeah.

Geoff Allix:

Heads up Living Well with MS listeners. This month is movement March at overcoming MS. Keep an eye on our social media channels for tips, videos, and ideas on how to keep your body moving this month. And on a related note, have you joined any of our live movement sessions? Overcoming MS has partnered with Dr. Gretchen Hawley to offer our community live movement classes. Find out more on our social media channels and website, but more importantly, make sure you sign up, so you don't miss out.

Geoff Allix:

And so what is the connection with your mom then? So you said your mom had MS?

Dom Thorpe:

So yeah, my mum had MS as far back as I can remember. And she was one of these invisible illness MS people, if you like initially. Right up from when I was a teenager, I just knew she had MS, but to me, it didn't really look like anything was going on. So I was quite naive in that respect, didn't know a lot about it. Until I came away, left home and at that point, her physical condition declined quite rapidly. And within the space of about six years, she'd gone from walking seemingly fine to being in bed, unable to really move herself very much at all. So, yeah. And that was the point I'd visited her with my granddad and seen her in this state and recommended that the hospital come and collect her.

Dom Thorpe:

Because I thought this was not a way that someone should be able to live, she was just having a carer coming three times a day, taking her to the toilet, feeding her and stuff. And I'd never seen this before. So I just thought this is not acceptable and took her to hospital, left her there that night. And the next morning got a phone call from them saying that they thought she had had a stroke, but after lots of tests over many, many months they established that it was actually a massive relapse, which had caused some brain damage through lack of oxygen to the brain. And from that point on, she spent the next six years in her home, basically motionless being fed through a tube and we didn't really know if you could communicate with her.

Dom Thorpe:

We would visit, we would say, hello, awkwardly try and talk to her and tell her what's going on. But with no idea of can she hear me? Can she understand? There were occasional reflex actions and stuff. And eventually I lost her in 2012, by which point I'd already stumbled across the fitness for disabilities course that I didn't even know existed. I remember thinking at the time when I saw the course, I was thinking, well, disabled people can't exercise, what's this all about? But I went on the course, and it completely opened my eyes. It kind of blew my mind a bit. And I just thought this is something I need to do, need to get into, and that was when I was…

Geoff Allix:

And so she wasn't, your mother wasn't particularly encouraged to exercise when she was [crosstalk 00:09:31].

Dom Thorpe:

No. That was it. As we discussed earlier back then the advice was to save your energy and not do any exercise for people with MS. She'd gone to, I think like a little local aerobics class one time or something. Now you must understand my mum was someone that had never exercised. So for her just a complete lack of understanding of what it feels like to exercise. I don't know, this a hundred percent sure, but I think what she was experiencing was like the typical muscle pain that you get with lactic acid buildup in the muscles. So the burning sensation and stuff, but because it was a numb, familiar feeling, she put it down to MS, which is something that we see quite a lot. And I'm sure you are aware of it, the question, is it MS or is it something else? And it's very easy to say, "Ah, you know, that must be the MS." So she tried it once and never did it again after that. Exercise wasn't something that she was doing.

Geoff Allix:

Yeah, it is a difficult one I am familiar with exercise. I'm not somebody who went to the gym a lot at university. In fact, my son is looking at universities now and is looking at the same. I went to Leeds University and he's asking about the gym there. And I had to admit that I'd never actually been in the gym at Leeds University. I had been rock climbing and running and other things. I'm familiar with exercise, but I have to say if you've got MS and it is different for everyone, but personally, certainly if I work really hard on exercise, then it will affect my balance a bit and my walking a bit more so than prior to that, where I just feel that burn and I'd be fine, but my legs would burn a bit, my arms would burn a bit. It is worse now, but that's not a relapse. That's something that you get over in a couple of hours.

Geoff Allix:

And I think maybe that's where historically my father wasn't encouraged to exercise that they were thinking it was sort of something that was starting out, maybe starting a relapse, but it's not, it's just your recovery is certainly worse.

Dom Thorpe:

Well I think that's probably to do with, you've heard of Utah syndrome?

Geoff Allix:

Yes.

Dom Thorpe:

So when you're exercising, of course the body temperature or the temperature of the core and the neurological system increases, which can exacerbate symptoms, generally legs, and things like that. The thing that I try and remind my clients and anyone that I speak to with MS is that this is, it's temporary and you are not doing any further damage. And I think that's the important thing. When someone tries that and they're like, "Oh, all of a sudden I came in there and I could walk and now I'm trying to leave the gym and I can't walk." And I've spoken to clients that have gone to gym and then had to be carried out by the staff. Because the legs, which I can imagine that must scare the hell out of you if you don't know what to expect or you are going to come away a few hours later and be back to what is your current normal, I suppose. Quite scary.

Geoff Allix:

So OMS promotes evidence-based lifestyle modification for improving health with MS. And one of the pillars of that is exercise. So what's your belief on how increasing exercise and movement might actually correlate to improvements in MS symptoms? Do you see improvements in clients?

Dom Thorpe:

It kind of goes, if I was to do a broad summary, I might say that we see improvements in how people feel symptoms and things like that. I would often put that down more to the nutrition side of things. But one of the things that we know taking MS out of the equation is, we know if exercise is done properly, structured exercise, not just like walking the dog or things like that, structured training sessions with the goal of increasing your physical ability. We know people can improve their balance, get stronger, get more supple, faster, anything like that. And although there's a massive lack of research into the effects of exercise and we're starting to see more of the effects of exercise for people with MS. The way I come from is, we apply logic.

Dom Thorpe:

There's no, we don't have any research suggesting that the typical thing or the common principles of exercise work any different for people with MS. We know you need to modify exercise. We know you need to be aware of things that we've just discussed, like the aftereffects of a training session, which happened for some people, not everybody, but the fundamental principles and this is one of the approaches that I take. We've got to remember that for more or less everybody whatever your condition, disability, chronic illness, the basic principles of fitness remain the same. To increase strength, you have to load the body with increased weights or resistance to improve cardiovascular fitness. You have to get your heart rate up to improve endurance, it's about doing things for longer. And the same principles apply to people with MS. In terms of scientific evidence, I've seen this time to time again with people I've worked with. We see people finishing their programs stronger than when they started or with better balance.

Dom Thorpe:

But personally, I think there needs to be a lot more time, money, or effort put into research in the subject, because there's a lot we don't know about how those methodologies might differ or need to vary.

Geoff Allix:

It's a difficult one, isn't it? Because the drug companies are obviously funding most of the research, because there's a financial benefit.

Dom Thorpe:

They're making some money back there.

Geoff Allix:

If Nike got in involved maybe in MS.

Dom Thorpe:

Well that's it. And the bottom line is what you get is very small studies done by people like me or like if one of the MS charities gets a smaller amount of funding that can be allocated towards this. There is hope for studies, but there are not enough people and probably not done for a long enough duration, so the data's not great and it's difficult or not even ethical to do like a sort of double-blind controlled test where you can say, right, you're not allowed to exercise, and you are. And we think the people that are going to be better off, but [crosstalk 00:16:27].

Geoff Allix:

[inaudible 00:16:27] is it the people who are not exercising.

Dom Thorpe:

You can't exercise without realizing it. I think that to some degree, you're going to get some sort of placebo benefits of, "Oh, I feel so much better." And I think that happens as well, which is no bad thing. If you are doing exercise and you feel better, whether that's placebo effect or genuinely being better, it shouldn't make a huge amount of difference here. If something's making me feel better, it's good. But I know from working with clients that people will get stronger. And I think this is as much down to nutrition is the exercise. They will feel more energy and less fatigued if they apply the right sort of principles.

Geoff Allix:

And could you tell us a bit about the key elements of your MS Warrior program?

Dom Thorpe:

So the MS Warrior program is sort of the lower cost one, which is, it's like a DIY follow along. So it requires you having some element of motivation to stick to it. But what I give people is a series of home workout videos for those people that prefer working out at home, but also gym alternatives for those that do have a gym membership and they will vary throughout. And the idea is that the exercises become more advanced throughout the 12 weeks of the program on the assumption that people will have improved physically, they will be stronger or have better balance and capable of slightly more than they were at the start. So I give them nutrition guidance as well. And lot of that is more, a bit more focused on the weight loss side of thought.

Dom Thorpe:

Because I see a lot of people coming in that have gained weight as a result of their MS, largely due to a drop in activity levels. They don't really know how to address this. So I try and give them tips on that. But again, I think this is where we probably see eye to eye with OMS and my stuff is the kind of the whole foods approach and trying to make sure that you're getting plenty of fruit and vegetables into your diet. Because they are really the things that move the needle in terms of your general health and wellbeing and again a low saturated fat approach. So trying to give people guidelines on that. I want people to finish the program more knowledgeable than when they started. So yes, exercise videos; yes, nutrition guidelines, but also an education component.

Dom Thorpe:

And every day they wake up to find an email that arrives in their inbox at 5:00 AM with a mini lesson. And what I've tried to do every day is a different lesson that covers various subjects, symptom management, mindfulness, principles of exercise. So they finish the program far more knowledgeable and confident in their own ability to maintain their health going forward. And that's part of the motivation package as well. So those daily emails, I think if you read that thing, first thing in the morning, it gives you a boost and should help you sort of adhere to the program throughout.

Geoff Allix:

It's not that I've done all sorts of various programs. It is a strange thing. When you do something that is online and remote, it still makes a difference. I don't know how it may be for different people, but to try and do it completely on my own, I really have to diarize. I know that the person on the Internet's not actually looking at me or I could just lie and say I did it and you'd never know, but there is still something about that daily email or something daily, this is what you're supposed to be doing today. And I was like, okay. So yeah, there's no reason why you couldn't like that motivation, isn't there? And it still works even if it's remote, but yeah, I guess it might be different for different people, but certainly for me, I think it works.

Dom Thorpe:

You do. You get different type of people, don't you, there are some people and I know this, and this is why the custom fit program exists as well.

Geoff Allix:

So custom fit is the level above MS Warrior.

Dom Thorpe:

Yeah. That's the one where if you're not exercising, you're getting a phone call each week from somebody that's going to be saying why, what, what's going on? Why are you not exercising? Whereas with the warrior program, although the daily emails are designed to be enjoyable, entertaining, and educational, and to read the next stage to try and keep them engaged. There are people that will just stop opening them and stop doing it at some point throughout. And the goal is to try and minimize the number of people that do give up. But with the custom fit, it's a bit different. It's quite hard to give up because you've got the accountability of the person. I have a couple of accountability coaches, they're people that have MS and they are personal trainers, they'll be having weekly phone calls with the clients to support them and answer any questions.

Dom Thorpe:

But also, it's the fact that I know I'm going to need, I'm going to be speaking to one of these guys. So I need to make sure I do my workouts and it tends to motivate them. And how some people just.

Geoff Allix:

Sorry, go ahead.

Dom Thorpe:

I was going to say some people just need to be told what to do. With something like MS and exercise, it's such a scary concept. You don't want to make things worse. You don't want to do stuff that's going to damage yourself. So it's very common for people to completely shy away. So if you can just say, look, "I know how you can do this. I've done it with tons of people, just follow these steps, do it this way." That is often just enough to spoon feed people the answers. And if you make it easy for them, they'll follow along. Try and remove all the barriers, the little hurdles that someone would need to overcome to do the exercise. And then it happens a lot more easily.

Geoff Allix:

And how do your programs deal with different ability levels? Because you're getting from wheelchair bound to completely running, even.

Dom Thorpe:

Yeah. So the Warrior program, because it's a template style program, what we've got is three categories, A, B, and C. Category A is for people that will walk, category B is for people that use assistance to walk, and category C is for wheelchair users. So what that means is the exercise is firstly suitable for people in that scenario designed to be safe and effective, someone using a wheelchair or crutches, but also designed to target the specific needs of somebody in that position. So yeah, someone who's walking with assistance, they'll be a bit more focused on kind of balance and mobility stuff there. Then obviously the person who's in the wheelchair and we kind of assume that for them, it's going to be more about core strength, upper body strength, being able to transfer and move yourself, propel yourself in your wheelchair, for example. So without having a completely customized program, which is what the custom fit is, this is kind of the next best [inaudible 00:23:31] if for a condition where the spectrum between different [crosstalk 00:23:35].

Geoff Allix:

But you can still exercise if you are not walking. It's not something where you would say give up on exercise. You should still exercise.

Dom Thorpe:

That's right. That's one of my pet peeves it is when people think, because their legs don’t work well, they can't do exercise anymore. I'll never stop hearing from people that say, "Well, I can't exercise, because, you know, my legs don't work." And I think they're not the only part of your body. I mean, you can even do cardiovascular exercise using your upper body or your core muscles. It's perfectly doable. You just need to adapt things and think outside the box to some degree.

Geoff Allix:

No, I find that certainly having historically run as cardio exercise, I ran a marathon and other things. I ran a lot and now running is very difficult for me. So it's how do you get that cardio? So I've got cycling, but also one I came across was just standing running. So you're not actually running anywhere, your legs, aren't, feet aren't leaving the ground, but you're still doing the running motion with your arms, and you can get your heart rate up quite high. And essentially doing that you can still get cardio. And there's swimming. They are all different things you can do. So if you could give us tips, I mean, so let's say three tips for people with MS of any ability who want to develop regular exercise into their lives, what might those be?

Dom Thorpe:

So my first one is, start with what you can do. And that's an approach I've taken ever since I started working with people with disabilities and chronic illnesses. It's very common for people to focus on I can't run, I can't do this. And I said, "Just say, forget about what you can't do. Just look at you and work out how you can. Get your arms to work. You can stand up out of your chair. These are all things that if you can do them, that will make your exercise [inaudible 00:25:42] first of all. So I'll always start with that, because it's more empowering, if you are trying to work on doing something that you can't do with the goal of eventually being able to do it, it can be demoralizing at the start. But if you start with the cans, then you can build up and perhaps once you've started building your regimen, then you can start to look at, okay, now let's maybe address some of the things that I can't do and work out how we might be able to improve our ability.

Dom Thorpe:

You can get to that. So, point one is, start with the can. Point two is, remember that exercise is specific to the goal and assuming you obviously employ the can principle first and foremost, but then think about what it is you want to achieve, because it's not, we don't just do exercise for the sake of doing exercise. Because your doctors told you that it's good for MS or because the government are telling you need to exercise or whatever. Think about what you want to achieve. Whether that's increased flexibility, increased strength, improved balance, cardiovascular fitness, whatever your goals are that should determine what type of exercise you do. And this is where we see people go a bit wrong with MS. The doctors will say, just do something that you can do. And that person might have really, they might be really focused on improving their lower body strength or their balance to help them walk further.

Dom Thorpe:

Meanwhile, the doctors say, go and swim because you can do that. Okay. And you're absolutely right. Start with what you can, but then think, "Okay, but I want to increase the strength in my legs." What activities are actually going to increase that and improve my balance and then let that shape your regimen so that whatever you are doing has a goal and a purpose to get you to whatever physical improvements you want. So that would be my second point. And the third, I think is start small and build up because what we often see in someone like you, perhaps who has previously been quite active and run and done, rock climbing. We sometimes see people have their first relapse struggle for several months. And when they feel like they're ready to get into it, they want to pick up exactly where they left off.

Dom Thorpe:

And it almost always ends in tears because the body's just not, it's no longer used to doing it at that sort of level or intensity. And that's not to say that you won't be able to in the future, but we do need to build up. You got to remember, you didn't immediately start at that point previously. You'd spent years, years, years building up to it. So it might be that you need to start low again, smaller, smaller duration, smaller intensities, and as your body's tolerance increases, then you can build up over time in a safe fashion. It's less likely to make you feel bad and injure yourself.

Geoff Allix:

Yeah, I think, I mean, I'm certainly someone who used to be a beast at fitness or just like, I've never been skillful at sports, but I always just go for it to the max.

Dom Thorpe:

The hard work and stuff.

Geoff Allix:

Yeah, but you mentioned the Utah phenomenon and I can't do that anymore. And that's where I really, I think one of the things where I didn't, I was not diagnosed with MS, but it was the running, it was sort of like that running further, running faster, doing like [inaudible 00:29:11] where you do lots of short sprints, things like that. My foot would start to catch on the pavement and stuff and so that ability to just like really go for it with exercise, I think you're right. We need to exercise, but we also need to be sensible and stay within our limits as well.

Dom Thorpe:

Absolutely. Yeah. To be safe.

Geoff Allix:

I wanted to call that out as well. Because you mentioned MS Warrior and sorry, I forget the name of the other one. The custom fit?

Dom Thorpe:

Custom fit, custom fit.

Geoff Allix:

But also you've got some free resources. [inaudible 00:29:52] and will link to those in the show notes. So if people want to have a try with you as a fitness coach, there are free resources. As well as MS fitness essentials, so people can try it out first.

Dom Thorpe:

Yeah, definitely. Because one of the things that is apparent when, if you can't work, which often happens as a result of MS, money's short. So I always try to make sure I offer a lot of free content and those MS essentials, there are online workouts on YouTube, access to my YouTube channel videos that I film with the MS Society. But not just me, there is access to others like there's some yoga stuff in there, and some Pilates. So there's plenty of stuff for people to get started and if you're stuck and you're like, "Well, I don't know what to do or I can't find any online videos that suit my physical ability." If you download those resources, there's plenty of stuff in there that will help and offer opportunities to try things.

Geoff Allix:

Okay. And so thank you so much for being our guest on Living Well with MS. And we are thrilled to learn about amazing work you're doing to encourage fitness to people with MS at all levels of ability.

Dom Thorpe:

Thanks for having me. It's been good to chat.

Geoff Allix:

Thank you for listening to this episode of Living Well with MS. Please check out this episode show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode.

Geoff Allix:

Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS circles, our global network of community support groups and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time. The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

View Details

Introduction

The Living Well with MS family of podcasts is happy to welcome back Ask Jack for its second season!

This episode’s topic: Replacing Eggs and Chocolate.

Jack has meticulously curated several questions around this topic, and its one even non-chefs can relate to. I mean, eggs and chocolate are the building blocks of so many yummy foods and recipes.

But we know from our research that they’re not particularly good for people with MS. So, let’s find out about healthy alternatives that can stand in without standing out.

Questions

Jack, do you have any tips on making a Tofu Scramble? I've heard they are simple to make but I've never made one.
How do you replace eggs in cake recipes? Is there a single and simple substitution one can use?
On a related note, one of our listeners wanted to know how much egg white is needed to replace a whole egg. Any thoughts, Jack?
Courtney from Portland, Oregon, wanted to know if there is a healthy substitute for egg replacers like Just Egg, which is the closest thing she’s found to scrambled eggs. However, she’s concerned about some problematic ingredients in it, like a whole bunch of canola oil, and the high temperatures required to cook it. Any ideas, Jack?
Is it possible to make an OMS-friendly custard? I would really love to know how to make a quiche and custard dessert for my family.
Can you explain how to use aquafaba?
I have a lot of chocolate cravings and I'm looking for OMS-friendly ways to satisfy them. Do you have any recommendations?
Can I replace chocolate in a recipe with cacao/cocoa? How?
On a related note, is there a difference, seemingly apart from the price, between cocoa powder and cacao powder? Can both be used for baking?
Are there any interesting chocolate substitutions on the market I can use to make desserts?
And here’s a question from Fran in New Zealand: can we use cacao nibs?
Finally, Jack, our whole community is excited about the imminent launch of the latest OMS book, ‘The Overcoming Multiple Sclerosis Handbook’. In fact, our next Living Well with MS episode is dedicated to it, and features two of the book’s co-editors, Professor George Jelinek and Associate Professor Sandra Neate. But the OMS Handbook has numerous contributing editors, yourself among them. What can you tell us about the project and your role in it?

About Jack McNulty:

Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack has operated his own catering business and cooking school, while also finding time to write about cooking. He is currently operating his own subscription-based website providing instruction and recipes supporting a vegan lifestyle. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the OMS Cookbook, and authored the Eat Well chapter in the Overcoming Multiple Sclerosis Handbook.

Jack’s Links:

Visit Jack’s website com for mouth-watering OMS-compliant vegan recipes, ingredient information, and to learn useful vegan cooking techniques.
Be sure to check out Jack’s weekly international newsletter – VeganWeekly – written with the aim to inspire people to cook healthy plant-based food.
Jack’s social media links are all here: https://linktr.ee/jackmcn.

Coming up on our next episode:

On March 23, meet Dom Thorpe and explore his exercise tips for all abilities. Dom has been helping people with MS to improve their lives through health and fitness coaching since 2008, and he’s the creator of The MS Warrior Program, which has been completed by over 1,000 people with MS since its launch in 2018. So tune in on March 23 and get moving with Dom!

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E48b Transcript

Ask Jack #6

Geoff Allix (Intro): (2s):

Hi, I'm Geoff Allix, host of Living Well with MS family of podcasts from Overcoming MS.

Jack McNulty (Intro): (8s):

Hey everyone, Jack McNulty here. Welcome to another new and exciting season of Ask Jack, a special Living Well with MS podcast Series. I'm excited and honored to answer food and cooking related questions from you, the Overcoming MS community.

Geoff Allix (Intro): (23s):

To submit a question for future episodes of Ask Jack, please email us at podcast@overcomingms.org. That's podcast@overcomingms.org. Please check out this episode show notes at www.overcomingms.org/podcast and dig into additional information and links on what we'll cover. And now let's rev up our culinary curiosity and Ask Jack.

Geoff Allix (46s):

The Living Well with MS podcast family is happy to welcome back Ask Jack for its second season. This episode's topic is replacing eggs and chocolate. Jack has meticulously curated several questions around this topic and it's one even non-chefs can relate to. I mean, eggs and chocolate are the building blocks for so many yummy foods and recipes. But we know from our research, they're not particularly good for people with MS. So, let's find out about healthy alternatives that can stand in without standing out. So welcome back Jack and happy 2022. How's the year started for you?

Jack McNulty (1m 23s):

Great so far, Geoff. It's just fantastic to be back for another year, doing the Ask Jack podcast with you. There's a lot happening in the world of plant-based food and cooking. And as a chef, it's just incredibly exciting. It's a good time to be involved in that aspect of the world. And looking forward to another year.

Geoff Allix (1m 44s):

We have had some changes over the last couple of years with the pandemic. It's become normalized. You know, I live in quite small town, but we still have a choice of restaurants that are plant based. And that certainly wouldn't have been the case five years ago.

Jack McNulty (2m 3s):

Yeah, most definitely. I feel exactly the same way living in Switzerland, where it previously was very difficult to find anything remotely close to plant based. And now there's quite a few choices available. So, that's a good thing.

Geoff Allix (2m 22s):

You are in the home of chocolate.

Jack McNulty (2m 26s):

Chocolate, and cheese, and eggs. And yeah. Everything non-OMS.

Geoff Allix (2m 32s):

So, to go through the questions then. Starting with eggs. Do you have any tips on making a tofu scramble? And the question is I've heard that they are simple to make, but I've never made one. But I'd love to hear your tips on making tofu scramble.

Jack McNulty (2m 55s):

Yeah, well, I definitely have some tips. Like you, I make them fairly regularly myself. It's quite versatile, so you can do a number of different things with it. What I like to do, for the first thing I do is and I think it's really important for successful tofu scramble is beginning with the selecting the right kind of tofu, so that, you know, they can go from really firm tofu to the so called silken tofu. Very soft, almost custardy like. The one that works the best for tofu scramble, there's something in between. Something on the softer side, not a silken tofu but soft, where you can easily crumble it with your fingers.

Jack McNulty (3m 38s):

And so, that's exactly how I started. I just get the tofu out of the package, drain it from all this liquid, crumble it into a bowl, and then I add in the other flavor ingredients right into a bowl and just sort of mix it all together with my fingers. So, what I use is, I tend to use a tablespoon of Dijon style mustard, I use a little bit of Turmeric. I'm careful with not using too much because I don't want the flavor there, but I want the color. It kind of adds to the whole impression of what you're trying to do. I add a little bit of ground cumin as well but just a little tiny bit.

Jack McNulty (4m 18s):

I think it gives a nice background flavor and a good squeeze of lemon juice along with the seasoning, kala namak, a black salt. And a lot of people might be familiar with it already. But it has a sort of sulfur like flavor associated with it. Kind of reminds you of eggs certainly when you smell it, it does, and it works well within a tofu scramble. So, I get out my pan. I use a stainless-steel pan, but you can do this with nonstick as well, and make sure the pan is hot, not scorching hot. There's nothing in the pan, but just over medium heat.

Jack McNulty (5m 1s):

Get it nice and hot. I add a bit of water, say a quarter cup of water, to the pan, it should immediately sizzle up. And then I add all the contents that were in the bowl with the tofu into the pan. And I just begin, I use a silicone sort of spatula, and I just sort of smash everything together as the water mixes in with the tofu. And I cook it over medium heat for about three to five minutes. Now, sometimes I add additional water as I go along. I don't want it dry. I want it a little bit more on the moist side. And that sort of starts to begin to break down and take on a look very much like scrambled eggs at that point.

Jack McNulty (5m 47s):

I just remove it from the heat after that period of time. Now, you can add additional flavoring at this point. Nutritional yeast is something I usually go with and gives it a little bit of a cheesy flavor. But also, you could whip some spinach into it, have cherry tomatoes in there, maybe some sliced spring onions, things like this. You can just sort of let your imagination run free and create sort of a nice little dish. It looks very similar to scrambled eggs.

Geoff Allix (6m 20s):

Yeah, I know very similar. I think the key for me was the kala namak, which wasn't the easiest thing to find. I did find it from a very large online retailer taking over the world. So, it is available if you search for it. And you know you've got the right stuff because it does smell of eggs.

Jack McNulty (6m 40s):

Yeah.

Geoff Allix (6m 38s):

And I, yeah, once -- and you're right. The turmeric, if you overdo it, it takes a turmeric flavor but actually you know scrambled eggs doesn't taste like turmeric it is just that yellow color.

Jack McNulty (6m 47s):

Yeah.

Geoff Allix (6m 47s):

And then really that's just a base and then you can think, “Okay, I'll add some mushrooms, or add some herbs as you would with any scrambled eggs.” One thing I would say actually is that friend like the scramble. They're not people with MS. But they don't really like scrambled eggs. And so, they do it without kala namak. And they like it, but you don't have to. We're trying to make it as similar as possible to scrambled eggs.

Jack McNulty (7m 11s):

Yeah, yeah.

Geoff Allix (7m 12s):

But actually, you could make it for months and some people think it’s better than scrambled eggs because they're not really keen on the eggy flavor. And so, you don't need to. So, okay. Kala namak is a salt so you can use normal regular salt and then use different flavors, and actually make something that you may prefer. And I think once you've got that base and you can start messing about with say, "Okay, what about a bit more kala namak, bit less, or adding herbs? Or you know…”

Jack McNulty (7m 45s):

Yeah. Adding curry for instance.

Geoff Allix (7m 50s):

Yeah.

Jack McNulty (7m 50s):

You know, there's a lot of different ways you can take it at this point. You can make it a little bit more Mexican, and then you have some breakfast tacos or breakfast burritos, things like that that would work really fine. I think the common mistake that most people make is they choose the tofu that's too hard. They don't use enough moisture as they're cooking the tofu until it gets a little bit rubbery if you don't use enough moisture and really break it down with the moisture and go a little bit too light on the seasoning. Tofu is like a sponge. It will take on a lot of flavor. And I think, you know, you shouldn't be afraid to season it well.

Geoff Allix (8m 34s):

Okay, and I think, yeah, with a bit of toasted sourdough. Perfect. Perfect.

Jack McNulty (8m 43s):

Exactly.

Geoff Allix (8m 44s):

And then you can go all sorts of ways with it as well. Like there's recipes for making fake bacon, liquid smoke, and things like slices of aubergine.

Jack McNulty (8m 58s):

Yeah.

Geoff Allix (8m 58s):

And you can make a quick breakfast with tomatoes, mushrooms, tofu, sourdough. You know you can make it really healthy. And because a traditional English Breakfast is pretty much one of the unhealthiest meals you can probably eat once you get to the blood pudding,

Jack McNulty (9m 18s):

Geoff Allix (9m 20s):

The sausages, fried bacon, fried eggs.

Jack McNulty (9m 25s):

Yeah, that’s right.

Geoff Allix (9m 25s):

But you can make it really healthy, nutritious.

Jack McNulty (9m 31s):

You can also have them you know, as a light lunch. Tofu scramble as a light lunch, even an early light dinner in the summer works fine. So, you know, you can experiment quite a lot with that technique and deliver some really powerfully flavorful food.

Geoff Allix (9m 53s):

It kala namak. Is it K-A-L-A-N-A-M-A-K? Is that right?

Jack McNulty (9m 55s):

That’s correct.

Geoff Allix (9m 56s):

Yeah, that's the thing to look for. You search for that. I'd say that's the key ingredient that tips it into something that tastes like egg.

Jack McNulty (10m 7s):

Yeah, I'll make sure I throw a link on the show notes for that so people can just access it from the show notes and on the website.

Geoff Allix (10m 21s):

Okay. And so, talking about eggs, how would you replace eggs in a cake recipe? Is there a simple direct substitution you can use for eggs and cakes?

Jack McNulty (10m 32s):

Um, well, that's an interesting question. I think, let me just start with why I can't think of another ingredient with so many culinary uses as an egg, which is why there really is no single substitution in recipes for eggs. And I think a successful replacement for an egg whether it's in baking or any other kind of cooking, it requires a basic understanding of what role is that egg playing in the recipe? So, before answering that question, let's just review quickly what an egg does in terms of a recipe.

Jack McNulty (11m 15s):

So, an egg will provide structure. So, the protein once heat is applied will start to coagulate. And it works very similar to gluten in that sense, so it gives anything a little bit of structure. And that's what you're looking for, which is a certain chewiness as well as providing structure, especially in high ratio, baked goods, ones that have a lot of sugar or fat, which tend to make the gluten very weak. An egg will strengthen that and bring it back into a little bit more of a structure and give it a little bit more bite. So, that's one thing an egg will do. Second thing is it actually works as a shortening as well, especially if you're just using the egg yolk, which is where all the fat is in an egg.

Jack McNulty (12m 5s):

And that egg yolk, the fat in the egg yolk will shorten the gluten strands and make whatever you're baking a little bit softer or have a sort of a texture similar to a sponge cake and going in that sort of direction. Eggs also emulsify and bind fats and liquids together. So, think in terms of making some kind of custard or something like this. This is where an egg is very useful in certain types of cooking. Leavening, giving a baked good rise. So that's usually done through the egg white, but just a whipped egg will do the same sort of thing.

Jack McNulty (12m 47s):

And it is basically just incorporating bubbles into the mix that expand when it's heated until you get that nice little rise. Eggs also provide moisture. Most of an egg is just water. I think it's around 65 to 70% of the whole egg is just water. And so, it's going to add a lot of moisture within a cake or other baked goods. Of course, flavor. We talked a little bit about that sulfur like flavor from the kala namak. That comes from cooked egg whites, whereas cooked egg yolks are going to give a sort of richness and that sort of smooth texture on the tongue.

Jack McNulty (13m 27s):

It doesn't add a lot of flavor on the egg yolk part, but just more of a texture sort of thing. And then color and glazing. So, eggs are often used to give that sort of shiny look to any sort of bread or baked good, like a pie dough or something of that sense. So back to the original question about replacing eggs and a cake recipe. And I'm afraid the answer is ultimately, you know, what do you want the cake to be once it's baked? So, I'll give the Swiss answer, it depends.

Jack McNulty (14m 12s):

It's not as simple as adding a fruit puree to replace the eggs, or using a flax egg, or using baking soda with an acidified nondairy milk or something of this nature. Each of these kinds of solutions contribute something different. So, it's moisture binding leavening. And so, I think ultimately, the answer is it's combining several techniques to achieve whatever it is you're trying to achieve or recreate in a recipe. And that may involve some experimentation, playing around with different formulas. But it's also fun. It's a great way to learn about ingredients, and how they work in a recipe.

Jack McNulty (14m 57s):

So, I sort of encourage that. The key is understanding what the basic choices for each role are, which I'll include in the show notes so people can refer to that.

Geoff Allix (15m 6s):

So on the OMS diet, egg whites are approved, aren’t they? You can use egg whites?

Jack McNulty (15m 11s):

That's right.

Geoff Allix (15m 12s):

And the egg white sounds like it does quite a lot of the action. And the roles of an egg are a distinct thing. So, there's the egg white and the egg yolk.

Jack McNulty (15m 24s):

That's right.

Geoff Allix (15m 25s):

We're using the egg white. It can actually do a lot of that binding, but it's not going to do the shortening side of it.

Jack McNulty (15m 34s):

That's right. There's no fat in an egg white. And that's why it's ultimately allowed on the OMS diet. There's some conflicting evidence out there in terms of, are there other things in the egg white, that might be harmful. But I think ultimately, the use of egg whites, depending on your view as to whether you want to use animal products at all. But ultimately, you know, using egg whites is fine in small amounts.

Geoff Allix (16m 11s):

And so, the egg, is there something that would replace the egg yolk action, specifically?

Jack McNulty (16m 18s):

Again, that would probably get a little bit more toward, what do you want to try to achieve? So, if we look at the structure of an egg yolk, basically, you're going to be looking at about 70% of it is water. So, I think, it's around, if I get my numbers correct, is around 12% is fat in an egg yolk. And so, a good amount of that is saturated fat as well. And then there are other things within the egg yolk to play an important role. So, it has lecithin in the egg yolk itself, which is an emulsifier.

Jack McNulty (17m 8s):

And it also has minerals and salts and things like that in smaller percentages. So, it emulsifies, and it adds fat. It does two things. So, it's going to bind liquids and fats together, as well as create a texture, especially if it's mixed with some kind of wheat flour, that's going to be very soft and spongy like.

Geoff Allix (17m 28s):

Okay, so if we are, in some situations going to use egg white, and we have an egg in the recipe. And we say, “Okay, well, we know that the egg white is doing the heavy lifting of what's required here.” So, how much egg white would you use to replace an egg? Would you just say, “Oh, well, that one egg white is all I need? Or would you double it or…?”

Jack McNulty (17m 60s):

Yeah, it's not quite that easy. I think, if you go and look at especially a lot of food science books or cooking books and things like that, where this topic comes up, the consensus isn't around how many egg whites will replace one whole egg. So, if you wanted to do that substitution in a recipe, that's basically what you're looking at. However, you have to take into consideration a couple other factors. First of all, if you're just using just the egg white, you're not going to have the fat within the recipe. So, the ultimate texture of, let's say you're making a cake, and you're using just the egg white, it's going to be firmer than something that has the whole egg in it which will be softer.

Jack McNulty (18m 45s):

So, it would be the difference between say, an angel food cake, if you're familiar with that, which is just egg white flour and sugar. It's relatively firm in its texture, quite light but firm versus something like a sponge cake, where it's going to be crumbly, and a little bit softer. And that's going to be using a whole egg in it. So that's the basic difference that's going to come up. So, if you wanted to recreate that sponge like texture, go ahead and use your two egg whites to one egg formula, but add about a teaspoon of fat, your choice, into the formula as well, per egg that you're replacing.

Jack McNulty (19m 34s):

So, if you're using two egg whites to replace one egg, you're only going to need one teaspoon of either oil, or something like a cashew butter, or something like this. It's going to provide that fat that's going to help with creating that soft texture.

Geoff Allix (19m 48s):

Okay, so it doesn't… so it's, the fact you're not using saturated fat won't cause a problem. But we do need to get some fats in there?

Jack McNulty (19m 54s):

Exactly. Of course, you can choose to just eliminate the fat altogether, that's fine.

Geoff Allix (19m 57s):

But that changes sort of...

Jack McNulty (19m 58s):

But for those that want to do that, you can do that. But just understand the texture is going to be fundamentally a little bit different.

Geoff Allix (20m 8s):

Okay, we had a question about egg replacer. So, Courtney from Portland, Oregon, wants to know if there's a healthy substitute for eggs such as Just Egg, which is the closest thing she's found to scrambled eggs, not having tried tofu scramble. But she's concerned about some of the ingredients in it. So, there's a lot of canola oil. And it's supposed to be cooked with a high temperature. So, any ideas or is there any egg replacement or egg substitutes that are out there that would work effectively?

Jack McNulty (20m 42s):

Yeah, I saw that question as it came across. I'm not familiar with Just Egg. Just briefly familiar with some of them that are out there. Hasn't really come to my part of the world yet. But I'm sure it's going to invade the supermarket shelves at some point very soon, or something very similar. So, I had a look. I went into their website and had a quick little peek. So, it's mung bean based instead of soybean. It's made from mung beans. And it's sort of what you would expect from a food company on their website. Which means they do whatever possible to sort of hide the ingredients from you.

Jack McNulty (21m 28s):

You have to dig quite a bit. There's a lot of fluff and marketing terminology on there, and a lot of claims on their website. So, all of those things are reason enough for me to be on my guard. And it's probably a good idea to then try and figure out what the ingredients are. So, I did find them eventually. And basically, it's a lot of stuff that is hard to pronounce. And I'm not sure exactly what they all are. But you can tell they've been sort of carefully constructed.

Jack McNulty (22m 8s):

So, it's water mung bean protein isolate, which means that's a pretty processed version of the mung bean. It does have, they say, expeller pressed canola oil. So that's a nice way of saying that it's not necessarily a healthy canola oil. So, it's going to be something not good in that sense. And then a bunch of other flavoring, and lecithin, and salt, and sugars, and on and on it goes. So it’s probably much better to refer to the beginning of our conversation and make your scrambled eggs with something like tofu and a few ingredients that you have a good control over.

Jack McNulty (22m 49s):

I think the lesson here is a simple reminder that reading labels is absolutely necessary to avoid all the marketing hype, you know. And ultimately, a good reminder that we're 100% responsible for whatever we put in our body.

Geoff Allix (23m 6s):

And tofu scramble is really not hard to make.

Jack McNulty (23m 10s):

No.

Geoff Allix (23m 10s):

That synthesis is easy.

Jack McNulty (23m 12s):

Yeah, yeah.

Geoff Allix (23m 13s):

Unless you get tofu that's too firm, as you mentioned, because that's really difficult to crumble. What if you got the right sort of tofu and you've sourced your kala namak from somewhere, then it's easy.

Jack McNulty (23m 21s):

Exactly.

Geoff Allix (23m 21s):

And there's a couple of other things that came up. So, one was custard. So, can you make an OMS friendly custard? Because that is… is very much egg and milk, in my opinion. I haven't had custard since following OMS. And I think that's, is that a global term? I mean, I think it's

Jack McNulty (23m 43s):

Oh, I was just going to say. I think first thing we need to do is define the term.

Geoff Allix (23m 49s):

Yeah. Okay. So in the UK custard would be a sweet thing you that would have as effectively a sweet sauce on a

Jack McNulty (23m 60s):

No. And I think it has more to do with the actual texture. So, on one side of the world, you're going to define custard as something that's fat, something like a crème brûlée or a flan, or even within a quiche. Something like this where basically it's an egg and milk mixture that's been set. It's been cooked in the oven, and it comes to a firm or semi firm consistency. Custard in another part of the world, probably where they drive on an opposite of the world, it is going to mean more of a sauce that you're going to have with a dessert or cake.

Geoff Allix (24m 32s):

Yeah, we have a custard tart, which would be what you were saying.

Jack McNulty (24m 39s):

Exactly.

Geoff Allix (24m 39s):

Is it pastel de nata or is that the right term? In Lisbon, they have, like a really famous custard tart.

Jack McNulty (24m 46s):

I don't know. I've never been to Lisbon. But as it turns out, I'm going there in a couple of weeks. So, I'll get back to you on that.

Geoff Allix (24m 53s):

Yeah, a separate subject, then you must get to Lisbon. It's amazing place. But you won't be able to have the pastel de nata which is very fantastic.

Jack McNulty (25m 1s):

Yeah, exactly.

Geoff Allix (25m 2s):

And so, yes. So, let's say, I mean, they're essentially the same thing though that the ingredients are really the same, so.

Jack McNulty (25m 10s):

Yeah, kinda. It just depends on the amount of liquid that they use, and then how the heat is applied to it. So, let's talk about two of them. So, in the OMS world, you can recreate both. And so starting with the sauce first, more sauce-based, and that's going to be something like a crème anglaise.

Geoff Allix (25m 32s):

Mm-hmm.

Jack McNulty (25m 33s):

Which I think is the official sort of culinary term for that. Um, now that's mostly going to be, in the plant-based world that's mostly going to be made with cashew nuts. That's what you see the most. And so, it's really simple to do. It doesn't involve any cooking whatsoever. It just involves a high-speed blender, which is very useful, especially for the OMS lifestyle. So, you're just taking soaked cashew nuts, and you're putting them in the blender with a liquid. So, it can be water, it can be some kind of nondairy milk, it can be soya yogurt, or something like that. But that's basically it along with some flavoring. So, I always flavor with a little bit of vanilla, and then some kind of sweetener, if you wish, if it wants to be a sweet sauce in the end.

Jack McNulty (26m 18s):

You can use anything from sugar to some kind of syrup like maple syrup, or agave syrup, or something of this nature. And basically, it's just a matter of blending it all up. And you adjust the consistency with the amount of liquid that you're putting into the blender. It should go around nice and smooth. In the end, it should be anywhere from a really thick kind of cream to something a little bit runnier that you might want to have on the dessert plate. So, it's fantastic with cakes, pies. I like having it with strudel coming from this part of the world. It's a really amazing way to do it.

Jack McNulty (26m 58s):

A set custard, on the other hand is a little bit of a different ballgame. And so that's going to be depending on what you want to actually set, and how you want to do it, and what other ingredients are in there. And so, it's a little bit like the cake discussion that we had earlier, you kind of have to play around a little bit with the various proportions or ingredients that you're doing. So, my favorite, I use a combination. I like using a soft silken tofu at this point. Now, this is the kind that's very soft, the tofu.

Jack McNulty (27m 39s):

That's going to add quite a lot of protein to the mix. And with that, I'm going to sometimes use a flour, or some starch base. Now, I use a lot commercially available egg replacers. But I'm pretty careful about those and I read the ingredients. Most egg replacers on the market, commercially available powdered egg replacers are basically going to be a mixture of starches. And that's really all they are. And sometimes they have a little bit of baking powder in them. Sometimes they have a little bit of turmeric in it to give it a little bit of color. And basically, you're just taking that starch and you're mixing it with a liquid, letting it sit for about five minutes, and then mixing it together with the silken tofu.

Jack McNulty (28m 24s):

And that kind of gets you really close to a blended egg. And what's interesting is when you put that into an oven and combine it with other ingredients, it's going to set up like a custard. So, I have different ratios depending on what I'm doing. So, making something like a quiche. I'm going to use quite a bit more silken tofu. So, I use about 12 ounces or around 350 grams. I use a tablespoon of egg replacer. I do use a little bit of flour in that mix, and I add some starch along with some soya milk just to balance the consistency of it.

Jack McNulty (29m 6s):

And that's it. And I mix it with my vegetables and whatnot, put it in the pie shell and bake it in the oven. If I'm doing something that's going to have a starchier ingredient consistency, something like a Spanish tortilla. For those that aren't familiar with that, that's basically just potatoes that have been set with some kind of custard. And so, in this particular case, I'm using less of the silken tofu, a little bit more of starch. And I'm just using corn starch in this case, and a little bit of soy milk. And of course, I flavor it also, a little bit with the kala namak, like we've discussed earlier.

Jack McNulty (29m 48s):

And that binds together with the starchiness and the proteins within the potatoes to create a really nice tight consistency that's very, very similar to a tortilla that's made with a normal egg. I'll be sure to include a link where you can get free access to a recipe on that in the show notes.

Geoff Allix (30m 9s):

Are you using something?

Jack McNulty (30m 10s):

On the dessert side, just real quick. On the dessert side, if you're using something you mentioned, like a rhubarb custard earlier, that provides, or like creates a different sort of problem because rhubarb is highly acidic. And acids tend to be a problem with starch when you're setting them. And this is why you don't want to use something like a corn starch, or a wheat starch or something of this nature. Tapioca starch in this particular case works the best in an acidic environment. And so, I'm combining the tapioca starch with the silken tofu.

Jack McNulty (30m 52s):

And that sets really nice. And I do that exact same method in creating something like a lemon curd. So, it's possible to create all of these various delicious desserts, custard base using various techniques.

Geoff Allix (31m 3s):

And on a slightly different note, could you tell us a bit about aquafaba? So, what it is? And how you would use it?

Jack McNulty (31m 12s):

Sure. aquafaba, for those that don't know, it's basically just a leftover liquid from mostly cooking chickpeas. So, you can do it with other beans, but it's mostly used with chickpeas. So, there's two ways to get it. Either cook your own chickpeas and save the liquid and reduce it down to the right consistency is a little bit more complicated. Or you just simply get a can of chickpeas from your supermarket. Make sure it's not heavily salted, and basically just drain it but use that liquid and that should be fine. Beginners, if you're not familiar with using aquafaba, that's the place to start.

Jack McNulty (31m 55s):

Just go get a can of chickpeas and go from there. So aquafaba is used in a lot of ways. You can use it basically as a liquid because the protein structure is very similar to egg white. It will also work as a binder when you're using it in a recipe. And so, you can make things sort of like a vegan mayonnaise. So, it's going to bind and emulsify similar to egg whites in combining the oil that you're going to use as well as the aquafaba and create that sort of familiar egg, or egg-based vegan mayonnaise.

Jack McNulty (32m 36s):

So, you can also whip it into peaks, soft peaks, basically. And once you do that, then you can fold it into batter to make a lighter type of batter such as pancakes or even in cakes. I've done it also in cakes, and that sort of thing. Once you whip it in, it will collapse a little bit, that's natural with aquafaba. But it does add a lot more air to whatever you're particularly baking or cooking. Or you can whip it into a stiff peak and actually make merengues from it. Have you ever tried that, Geoff?

Geoff Allix (33m 6s):

With aquafaba? No.

Jack McNulty (33m 7s):

Yeah. It's really fascinating. The merengues are almost identical to an egg white based merengue. And as it turns out, they keep quite long.

Geoff Allix (33m 15s):

I mean, I still use egg whites. So, I would tend to agree, you know.

Jack McNulty (33m 18s):

Yeah.

Geoff Allix (33m 19s):

Yeah, I’m become a bit of an expert separating eggs out using –

Jack McNulty (33m 21s):

Yeah. What do you do, just out of curiosity? What do you do with

Geoff Allix (33m 30s):

I use two halves of the shell. It comes with its own tool to do it. So, I just cracked the egg and then transfer backwards and forwards from the two halves of the shell. Each time you transfer a bit more egg white, drops down, and you keep the egg yolk, and then ultimately just throw away the egg yolk and the shell.

Jack McNulty (33m 47s):

Yeah.

Geoff Allix (33m 48s):

And leave. And then occasionally, you make a mistake, and you cut the egg yolk when you're doing that and have to start again.

Jack McNulty (33m 58s):

Yeah.

Geoff Allix (33m 59s):

Very straightforward.

Jack McNulty (33m 60s):

The thing with egg and aquafaba. The common mistake that people make is they try to whip up either by hand or they don't whip it long enough. So, it takes a little longer to whip it up as opposed to an egg white. And you want to start the aquafaba without anything else. So typically, with egg white, you know a little bit of salt kind of helps strengthen an egg white and when you're whipping it up, and sometimes cream of tartar is an ingredient that goes in and just gives a little bit of acid that sort of helps create a strong sort of meringue with egg whites.

Jack McNulty (34m 49s):

You don't want to do that with aquafaba. You can add those ingredients after it's formed a sort of soft or medium soft peak. And otherwise at the beginning, you're just going to be fruitlessly, whipping, and whipping going, “What is this about all this aquafaba?” But interestingly, it doesn't have any real bean flavor when you cook it which is really fascinating.

Geoff Allix (35m 18s):

So on to chocolate. So, a lot of people have chocolate cravings and looking for OMS friendly ways to satisfy their chocolate craving. So, I mean the chocolate is sort of many things. There's not a problem with the actual cacao part of the chocolate. It's the fats, isn't it, like in the cocoa solids that is the issue.

Jack McNulty (35m 38s):

Yeah.

Geoff Allix (35m 39s):

So, do you have any recommendations to satisfy a chocolate craving and following the OMS diet?

Jack McNulty (35m 48s):

Sure, yeah, cravings are, you know, that's a difficult junction in anybody going through a lifestyle change. Cravings for cheese or chocolate or any other kind of snack, it's not easy to eliminate. Those are really just about changing your behavior, because they usually involve some kind of trigger. So, with chocolate, it's often a reward of some kind. Maybe you've gone through a lot of stress, and you're rewarding yourself that day for saying, “Oh, I made it through the day. I'm going to have a bite of chocolate or something like that.” It's comforting. But it's also potentially quite harmful to do that.

Jack McNulty (36m 27s):

So, with chocolate, cacao powder or cocoa powder, however you want to go with the term there, is the most obvious substitution because it is in essence chocolate at its core. It just doesn't have the majority of the fat that's left in it. And so, that's the best way. And probably the easiest way to sort of transition is to just make things with cacao instead of melted chocolate. Another thing is that people tend to go with chocolate bars or something like that. So, there are alternatives, you know. I've heard people say, “I like to have a naked bar instead of a chocolate bar, or some kind of energy bar, or something like this that has a little cacao in it with dates, or prunes, or any of a number of different ways.” So, there are things that you can do.

Jack McNulty (37m 28s):

I think, interestingly, once you've been on the lifestyle bandwagon for a while, as it were, that these things become less and less influential in your life. You just tend to not necessarily fall to the cravings any longer, you know. You just kind of move on from it a little bit. Or you figured out other ways to satisfy a sweet tooth. For me, I'm an admitted sweet tooth person. But I've noticed that over the years, that's waned considerably. I don't really have the need to just have a lot of sweet things. In fact, now, when I do have something, it’s just almost overwhelmingly sweet and I don't appreciate it any longer. I'd rather have something else.

Jack McNulty (38m 8s):

Give me a bite a carrot instead of a chocolate at that.

Geoff Allix (38m 13s):

but I think the same with cheese, I think I'm just saying in the UK, I know what I like. And I like what I know that you you're just familiar with foods. And once you change your diet, it doesn't take very long, and I don't have any cravings for cheese now. And similarly, chocolate.

Jack McNulty (38m 37s):

Yeah.

Geoff Allix (38m 37s):

I mean, I have cacao powder in the cupboard. I rarely use it. And I think there's a few related questions, actually. But there's a mention of difference between cocoa powder and cacao powder. We've definitely covered this in a previous episode.

Jack McNulty (38m 54s):

Yeah, yeah, just a real quick answer on that. There is no difference. They're identical.

Geoff Allix (39m 5s):

Yeah.

Jack McNulty (39m 5s):

The one thing that you should know about the two is that when, well not the two, but they are the same. But in terms of baking, there is something to know about cocoa powder. And the major differences are that there's the Dutch process, which is mostly European cocoa powder versus non-Dutch process. And that does have a bearing on how you bake. Now, Dutch process means that cocoa has been treated with an alkali. So, it's darker, it's smoother, it dissolves quicker in liquids. Whereas a natural cocoa is somewhat acidic. So, in baking, what that means is, the leavener of choice is going to be different.

Jack McNulty (39m 47s):

So, with something that's non-Dutch, you can get away with just using baking powder. Versus… I'm sorry, with a non-Dutch you can use baking soda, which reacts with the acid, the natural acid in cocoa. Whereas, with a Dutch process, you're not going to have that acidic quality or you're going to need something like a baking powder that doesn't necessarily need acid in the recipe to react. And so that's going to be your big differences deciding which one to go with there.

Geoff Allix (40m 19s):

And there's a question from Fran in New Zealand, about cacao nibs. Are they a fine to use?

Jack McNulty (40m 33s):

Well, yeah, cacao nibs are basically going to be the shelled portion of the cacao bean that's been harvested. Most cacao nibs are going to be roasted. So, it's very unusual to find an unroasted cacao nib. If you can, that's the best to get. But on the other side of the coin, that's going to be the most difficult to eat because it will be very astringent. It won't taste very good. But it's going to have all the nice health qualities of a lot of flavonoid molds in it and all of the antioxidant properties.

Jack McNulty (41m 13s):

As soon as you roast it and start processing that bean, those things are going to start going away. And so, a cacao nib or cocoa nib, however you want to pronounce it is probably fine on the OMS diet in smaller amounts. And the thing to consider is, it still has all the fat in it from the cocoa bean, right? And so the cocoa bean, or cacao bean is going to be about 50% fat, which is a considerable amount and about half of that fat is going to be saturated. So even if you're talking about, you know, 25 grams of cacao nibs sprinkled on your muesli or something, is that you're getting about 12-13 grams of fat in that case in about six or seven grams of saturated fat.

Jack McNulty (42m 4s):

So, it may seem like, oh, that's something that's quite healthy for you. But on the other hand, just be aware, there's still quite a lot of fat in that. Taken in smaller portions and eaten occasionally is probably fine on the OMS diet.

Geoff Allix (42m 22s):

And I think you've mentioned about chocolate substitutions. I mean, you mentioned naked bars. And there are quite a wide range of similar bars. And is it just a matter of checking ingredients or saturated fat levels?

Jack McNulty (42m 40s):

Yeah, it is. One thing that people often turn to is carob. So carob is basically the powder form of Locust bean gum. It's a kind of route, and it's going around the Mediterranean. It's sweeter than cacao and doesn't have all the same properties as heavy caffeine, for instance. It's not going to have this much in terms of antioxidants and all those other things that you might have in cacao powder. It will be high in fiber, high in protein as well. And when used in baking and just substituted in identical amounts with cacao powder, you can get something that's reasonably close and for some people that works, it's something different to try.

Geoff Allix (43m 30s):

And as a final question, the new OMS book, The Overcoming Multiple Sclerosis Handbook, was recently released. And we actually had an episode with the co-editors Professor George Jelinek and Associate Professor Sandra Neate. But there's lots of contributors to the OMS Handbook and contributing editors, and you are one of them. So, could you tell us a bit about the project and your part in it?

Jack McNulty (44m 2s):

Well, yeah, thanks Geoff for bringing that up. It was an incredible experience and honor to work on this important project, and especially with so many knowledgeable professionals worldwide. It's an amazing book. And in my mind, I don't think there's any doubt it offers fabulous advice to anyone with MS or living with someone who has MS. But I also think it's more than just another book about MS. It's a book about how to change existing lifestyles and reap the inevitable benefits that come from healthy lifestyle changes. These experts in various fields from meditation to, well, I can say cooking, if you will, but also on vitamin D and exercise, and on and on.

Jack McNulty (44m 54s):

It does really contribute an amazing amount of information and provide a lot of guidance as well as hope for people. I was almost speechless when I got to go through the book and start reading some of the chapters. It's fantastic.

Geoff Allix (45m 9s):

Brilliant. With that, I'd like to thank you very much for your contribution today talking about egg and chocolate replacements. And I'm certain there's many people out there who are going to be happily baking, and certainly making breakfast with a scrambled tofu using the information from this episode. And we look forward to welcoming you back in May for the next episode of Ask Jack. And we'd be very interested if you've got any questions for Ask Jack, you can submit them to podcast@overcomingms.org. So if you have any cooking questions, we would be very happy to receive them.

Geoff Allix (45m 49s):

And until then, happy OMS cooking and eating. And thank you very much, Jack.

Jack McNulty (45m 54s):

Thanks, Geoff. It was a brilliant conversation. Remember, be sure to check the OMS website to get the show notes from this podcast. And I'll make sure to include links for more in-depth understanding of these topics, as well as a few recipe ideas. I look forward to seeing you again in May for our next episode. Get those questions in, as soon as possible.

Geoff Allix (46m 17s):

Thanks for listening to this episode of Ask Jack. Please check out this episode’s show notes at www.overcomingms.org/podcast where you'll find all sorts of useful links and bonus information. If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org. You can also subscribe to Living Well MS on your favorite podcast platform, so you never miss an episode of any of our podcasts. Ask Jack is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (47m 3s):

To learn more about Overcoming MS and its array of free content and programs including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time. The Living Well with MS family of podcasts is for private noncommercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

View Details

Bio:

Chris was diagnosed with MS in 2017, and that's when she really decided to live her life how she wanted to. It really drove home – with the spectrum of types and prognoses – that anything can truly happen in life… we never know. So soon after this huge upheaval to her life, she began to look at both what she had to do now (like eat healthier and exercise) and what she wanted to do. Chris reevaluated her life in every way, which was incredibly hard but so worth it. She started with the happiness she had suppressed for a long time.

So many things have happened in the past four and a half years after diagnosis that she became a different person. She is still the same in some ways, of course – a crazy cat person and a Special Olympics volunteer for instance – but she has changed fundamentally. The way she views life, with a joy in the day to day and making sure those she loves know it, is now her core. Chris honestly can say that she is glad to be diagnosed with MS. As crazy as that sounds, it is true, because of all the epiphanies it has granted her.

Questions:

Welcome to the program Chris, and thanks so much for joining us on Living Well with MS.
Our content theme for February is ‘sharing your story’, so in that spirit, can you tell us a bit about yourself and your life in Connecticut?
Now let’s get some insight into your MS story: when were you diagnosed and how did you deal with the initial news?
Do you have any tips or perspectives for people who are newly diagnosed?
When did you discover Overcoming MS? And how has it impacted your life with MS?
What were the main obstacles you faced in adopting the OMS lifestyle, and how did you deal with them?
You have some personal experience with dealing with major life decisions and balancing these with their impacts on MS. In your case, your decision to come out about your sexuality. Can you tell us about that and how you balanced what must have been a stressful time with your need to stay calm and healthy?
What advice would you give people with MS who are facing major life decisions or other stressful circumstances?
What kinds of positive changes has your courage in making tough decisions summoned?
How do you define “living life to the fullest”, especially from the perspective of someone with MS?
Is there any other perspective on life and living it to the fullest that you can share with our audience that they may find helpful in giving them the final nudge of encouragement they need to take the leap on something daunting or scary?
What else is on your bucket list for a full life?

Links:

Reach Chris’s blog on living despite the unknown here
Check out Chris on Twitter
Chris recommends finding and joining your local OMS Circle for support
Chris wants anyone in the USA who is LGBTQ+ and struggling to know that they can text or call The Trevor Project (which is a nonprofit and totally free) by texting START to 678-678 or calling 1-866-488-7386

Coming up next:

Tune in on March 9 for the season premiere of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E48 Transcript

Living Life to the Fullest: A First Person POV of Living with MS

Geoff Allix (1s):

Geoff Allix (47s):

Have questions or ideas to share? Email us at podcast@overcomingms.org, or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. Joining us on this episode of the Living Well with the MS podcast is Chris Cerillo. Chris was diagnosed with MS in 2017 and that's when she really decided to live her life how she wanted to. It really drove her home with the spectrum of types and prognoses that anything can truly happen in life. We never know.

Geoff Allix (1m 27s):

Soon after this huge upheaval to her life, she began to look at both what she had to do now like eating healthier and exercising, and what she wanted to do. Chris reevaluated her life in every way, which was incredibly hard, but so worth it. She started with the happiness she had suppressed for a long time. So many things have happened in the past four and a half years after diagnosis that she became a different person. She is still the same in some ways, of course, a crazy cat person and a Special Olympics volunteer for instance, but she has changed fundamentally, the way she views life with joy in the day to day and making sure those she loves know it and it's now her core. Chris honestly can say that she is glad to be diagnosed with MS.

Geoff Allix (2m 9s):

As crazy as that sounds, it's true because of all the epiphanies it has granted her. Welcome to the program, Chris, and thank you so much for joining us on Living Well with MS.

Chris Cerillo (2m 21s):

Thank you for having me.

Geoff Allix (2m 23s):

This month, the content theme is sharing your story. With that in mind, could you tell us a bit about yourself and your life in Connecticut?

Chris Cerillo (2m 35s):

Yes. Just for reference, Connecticut's a super tiny state in the United States. We're about, where I am, an hour and a half from Manhattan, but it's a great state. I really do like it a lot. I'm actually from upstate New York so that's also about an hour and a half from here.

Geoff Allix (2m 53s):

Upstate New York, is that the bit that's not the city of New York?

Chris Cerillo (2m 58s):

Right. Exactly, yes.

Geoff Allix (2m 59s):

Sorry.

Chris Cerillo (3m 0s):

Once you're out of the city, no, it's a huge state. It's complicated. I'm from Hudson Valley. I moved here in 2011 and, except for a stint in Manhattan during the pandemic, unfortunately, came back and I really like it here. It's pretty awesome. I work in fundraising at a nonprofit, and I love my work. A lot of people can't say that. I feel privileged to be able to say that, but, yes, I have a bunch of really awesome friends that are family to me here, which is great because most of my family actually lives down south now. They moved from upstate New York to North Carolina and Florida.

Chris Cerillo (3m 43s):

They text me regularly. It's 15 degrees here right now and they're texting and they're like, "It's 50 degrees where I am," but here, despite the cold, it is a pretty awesome city.

Geoff Allix (3m 53s):

When you say 15 degrees, you're talking Fahrenheit, aren't you?

Chris Cerillo (3m 59s):

Yes, Fahrenheit.

Geoff Allix (3m 60s):

That's way below zero. Okay.

Chris Cerillo (4m 5s):

Okay, yes. Sorry, 15 degrees Fahrenheit. I'm very American-centric. I have to work my way out of that. I volunteer a lot as much as I can around here with the special Olympics and doing dog rescue transports, really anything that I can do to help out and try to give back as much as possible. It's pretty great here.

Geoff Allix (4m 31s):

The Special Olympics, is that like the Paralympics?

Chris Cerillo (4m 35s):

Yes. Folks with special needs, autism, Downs Syndrome, things like that.

Geoff Allix (4m 43s):

Let's get some insight into the MS side of things, so when you were diagnosed, a bit about the diagnosis, and how you dealt with that.

Chris Cerillo (4m 56s):

Yes. I was diagnosed, I had to sit down and think about this actually in 2017, which sounds like so long ago. I guess, technically it was four and a half years. For the summer of 2017, before I was diagnosed, I had a bunch of weird different symptoms that just didn't amount to anything in particular. I had a lot of tests done. They're testing for lupus and this autoimmune disease. I had joint pain and I was just generally not feeling well. I had done it for a couple of years prior to the diagnosis and they just gave up.

Chris Cerillo (5m 40s):

They're like, "We don't know what's wrong with you," which I think happens a lot with autoimmune issues. In 2017, I started to feel like burning sensations in my body. I was like, "This is different and weird." In particular, I was washing the dishes one day and it felt like my hands are burning. I'm like, "Oh my God, like, why is this water so hot all of a sudden?" I stepped back and a few minutes later I'm still burning. I didn't realize it was burning from inside and not outside. I was like, "There's something going on here." To be a hundred percent honest, after so many years of knowing something was wrong and then coming to the realization of like, "This could actually be something.

Chris Cerillo (6m 25s):

This could be MS." Of course, you go on Google. You're going to Google whatever's happening like burning sensation, nerve issues. A few days after the dishwashing incident, I realized that my right eye wasn't seeing as well. I was like, "That's weird," but I have had glasses since I was nine. My eyes just, in general, don't see very well. That's not a huge problem. All of a sudden, it felt like there was a sunglass lens on my right eye. I also couldn't see. I couldn't see red very well and red was my favorite color, so everything was red around me.

Chris Cerillo (7m 6s):

I'm like, "Why is red super dark now? That's odd." I called my eye doctor. It was a weekend, so I left her a message. I think it was Sunday. I was at work Monday morning at 8:00 AM and I get a call. They're panicked and they're like, "You need to come in. You need to come in ASAP, leave work," so I did. I told my boss, and she was like, "Okay, yes. Sounds like an emergency." I go in and there's just a general panic happening, which I didn't realize until afterward that I think they thought that I was having a stroke because it's just suddenly like, "Why is her eye not working?"

Chris Cerillo (7m 55s):

We had a bunch of tests done while I was there. She told me at the end of the visit, "Yes, I think you need to see a neurologist." Because I had been Googling, I was like, "Do you think it's optic neuritis?" She's like, "I think so." I made the neurologist appointment for a week later and went in. He's still my neurologist actually. He's great. Shout out to Dr. Bonnie in New Haven. I went in and then a few days later got my MRI. He interpreted it and he told me, "Look, here are six different lesions on your brain.

Chris Cerillo (8m 36s):

It's pretty safe to say that this is MS." I think, originally, like I said, I was like, "Great, this is the diagnosis." I feel vindicated, so happy to have this answer. Then I did more thinking and more researching and realized that it's seen as one of the worst illnesses to have by the general public. I saw it compared to cancer. Cancer was the number one worst thing to happen, and MS was number two, which is scary when you're first diagnosed to read that.

Geoff Allix (9m 14s):

I didn't come across that and I'm quite glad that I didn't come across that.

Chris Cerillo (9m 22s):

You didn't? Yes. Maybe it's an American thing, I don't know.

Geoff Allix (9m 23s):

Cancer's going to go one, one way or the other, isn't it? I know people who are completely in the clear now and have been for a long time, but then equally, it could kill you very, very quickly. We're in that middle ground, aren't we? Yes, you can have it forever.

Chris Cerillo (9m 42s):

Anything could happen, yes.

Geoff Allix (9m 43s):

There's not going to be any like, "We've cleared you of this but equally, we're not going to give you three months to live."

Chris Cerillo (9m 49s):

Right. I guess if you're primary progressive, you could be in a much quicker timeframe of deterioration, but I think, in general, yes, I just heard a lot of people calling it the "Wheelchair disease" and "You're going to end up super disabled." I think, honestly, people talk about a wheelchair like it's the worst possible thing when in reality, lots of people live full lives in wheelchairs, with canes, or walking sticks. I learned all that later. I learned that perspective later on, but initially, yes, I was freaked out once I got over my happiness of a diagnosis.

Geoff Allix (10m 32s):

If other people are newly diagnosed, do you have any tips for them in how you deal with it?

Chris Cerillo (10m 46s):

Yes. I think you're going to run through a bunch of emotions at first. Maybe not the same way that I did, but it's definitely going to hit you. You have to let it hit you. Don't just hold on to extreme positivity. It's a real disease. It's something you're going to have to live with the rest of your life like you were saying, Geoff. Let that sink in. Feel your feelings, that’s was my therapist would say, but don't panic too much. Make sure that you do some research and look into OMS because honestly, Overcoming MS book has become my bible to live by.

Chris Cerillo (11m 34s):

Whenever I'm not feeling well, I'm like, "Let me check in and see what I should be adjusting here," but reading through it when I was first diagnosed was really, really important for me. I like to have some sort of control over my life, and I didn't feel like I had it until I found OMS. I was like, "I can. I can have power over what happens to me."

Geoff Allix (11m 58s):

Did you come across OMS straight away or was it a while after your diagnosis?

Chris Cerillo (12m 4s):

I was lucky. My partner at the time actually did this research even before I was diagnosed. When I was having burning sensations, he was looking it up and came across OMS, ordered the book, and everything. It was pretty soon after that I was reading it too and looking into it. I did it slowly because I was balancing that with all the millions of pamphlets that your neurologist gives you. I was like, "This medication and that medication." It was just too much information at once. It was great that he purchased that, and he gave me a synopsis of like, "Hey, you can do this to make sure you stay healthy."

Chris Cerillo (12m 48s):

Yes, I think my tip is to probably cut down on the panic. If you have people that are super close to you, you can ask them to do some research for you. Most people that are close to you want to help so if you give them a task, they're probably going to take it on. That'd be my main tip.

Geoff Allix (13m 10s):

Yes. I think if you try to do everything yourself then, and I think that's a natural thing to want to do everything and say, "Okay, I'm not going to let this affect me at all," but sometimes, you need to rely on people. People are happy to help, usually.

Chris Cerillo (13m 34s):

Right, .

Geoff Allix (13m 34s):

I think it's not unusual what you said about your partner actually introducing you to Overcoming MS. That was the case with me, and it has been with other guests as well. I think maybe that's because they want to do something. They're doing research because they can do that. They come across various things and then say, "Have you tried Overcoming MS? Have you heard of this?"

Chris Cerillo (13m 60s):

Yes, right. They want to help you and they don't know how.

Geoff Allix (13m 60s):

Then later on, maybe, like now, my wife knows what is helpful. We've been doing it for years, but first, it's like, "Well, I don't know how I can help you." That was a way she really did help me.

Chris Cerillo (14m 23s):

Yes, and then you learn what kind of things can help you and you can communicate that to your loved ones and be like, "Hey, if I'm overdoing it, if we're out for a hike and I start moving slowly," the cold weather really affects me. I know everybody says the hot weather and hot weather unfortunately affects me, too. If I'm out for a long walk with a friend and I'm like, "Body's not moving as well," they can say like, "Let's cut it off. Let's go home and get you feeling better." I think in the initial stages, you have to figure that out.

Geoff Allix (14m 58s):

Yes, cold weather is good for me. I've always been into outdoor sports. The last one that I stopped doing was snowboarding. Since having MS, I've done two snowboarding trips. I can do that because I can stay cold, whereas a Mediterranean trip in the summer is much harder for me.

Chris Cerillo (15m 25s):

I'm not going to go down south and visit my family in the summer. I'm sorry, I'm not doing that. No July trips to Florida.

Geoff Allix (15m 34s):

The problem is my family loves it. I still have done trips and we've been to Thailand, we've been to Costa Rica, and we're planning to go to Sardinia when they finally let us travel again, but I know I won't be doing much. I'm going to be by the beach, and I'll go to the sea and cool down.

Chris Cerillo (15m 55s):

Yes, don't overdo it. We learn as we go.

Geoff Allix (15m 59s):

Have you found differences since you've been doing Overcoming MS? Has it made a difference?

Chris Cerillo (16m 7s):

It definitely has. I was a vegan when I found out about OMS, so I was already kind of there, but I was a junk food vegan. I had to switch to an actual plant-based diet and eat a lot of greens. When I do that, I feel better than when I eat frozen pizzas, chips, and soda. It's crazy how much of a difference it actually makes, but it is true. It's true. If I exercise, I feel better. It's good for the whole system so it's good for your brain, fighting depression, sleeping better.

Chris Cerillo (16m 47s):

Go exercise, go eat some good food, hang out with friends when it's safe to do so, but OMS is definitely helpful, yes.

Geoff Allix (16m 56s):

There's been a lot of articles because we have a thing, I don't think it's international, called Vegan January, where they try and encourage people to be vegan in January. Is it a thing everywhere?

Chris Cerillo (17m 10s):

It is a thing here too, yes.

Geoff Allix (17m 11s):

There have been some articles about this saying, "Actually, being vegan isn't necessarily healthy." When you read these articles, it's because there is a lot more veganism in this country now. You see a lot of stuff in supermarkets which is vegan fast food really, like processed vegan foods. It's not so much being vegan. It's the plant-based whole food, isn't it?

Chris Cerillo (17m 40s):

There's a difference.

Geoff Allix (17m 41s):

That is more effort because you are going to be chopping up vegetables and cooking them.

Chris Cerillo (17m 47s):

Yes. It's annoying. To be honest, I don't like cooking. I don't enjoy it, but I do it. You figure out workarounds. I make kale chips all the time. I just put nutritional yeast on kale and just put it in the oven until it becomes kale chips or make a salad, super easy.

Geoff Allix (18m 6s):

Actually, there is an element of it being delicious as well because you are cooking freshly made food.

Chris Cerillo (18m 14s):

That's true. I think if you just give up meat, is it really a massive benefit? I think the benefit comes from the, personally, whole food side of it that you’re actually eating proper food. Yes. Yes. Yes. I became a vegan originally for animal welfare reasons. I worked in animal shelters for a really long time and interned on farms and stuff. I was like, "This makes sense for me," but being an animal welfare vegan literally means you could eat anything that's vegan.

Chris Cerillo (18m 58s):

There's a new vegan pizza every week at my store or down the road. It feels like there are just many new options.

Geoff Allix (19m 6s):

In the States. I don't know if I could get it at most places I've been to, trying to order a pizza without cheese on it. Pizza's a real go-to for me because it's just so easy. Actually, in Italy, they do pizza without cheese. There's one . I'm in Seattle at the moment, and there's a place called Mod Pizza, which I don't know if that's Nashville. You basically choose what you want when you are ordering it. You can have the red sauce as I go across it and then you say, "No cheese."

Geoff Allix (19m 45s):

They say, "Are you vegan?" I said, "Yes, I'm a vegan." They say, "No, we have vegan cheese." I said, "No, I just don't want any cheese," and they're like, "But it's pizza." "Whatever that is, that's not food." Pizza without cheese is really nice.

Chris Cerillo (20m 12s):

It is. I have to say, I've learned to like it over the years.

Geoff Allix (20m 22s):

Yes, but I think, in any venue in the US, it's almost like ordering a pizza with no base or something, to say without the cheese. Otherwise, it's not pizza. Did you have any problems adopting OMS? You said you were vegan already, but what were the main obstacles to adopting the lifestyle?

Chris Cerillo (20m 47s):

I would say probably trying to be stress-free or as stress-free as possible. Meditation has never worked for me. I've tried so many times. I tried with the Headspace app, and I tried with all kinds of YouTube videos. I went to a meditation class. It's just my brain can't do it. I think it's just the way I'm wired. My brain just will not calm down. I have learned other ways of dealing with stress. Number one would probably be yoga because I've found that it's like meditation in motion.

Chris Cerillo (21m 29s):

As long as my body's like doing something, I can calm down long enough to slow down and be less stressed. Yoga and running have become huge stress-free things for me. It's just staying in motion.

Geoff Allix (21m 46s):

That's the thing. There's a distinction between mindfulness and meditation that, actually, you can do almost anything mindfully, but you don't. Obviously, meditation is mindful, but equally, you can run mindfully. I used to run a lot and you are literally thinking about what you're doing in running or swimming. I'm certainly always thinking about my technique and am I doing it right? That's essentially a mindful activity.

Chris Cerillo (22m 22s):

You can't think about anything else, right?

Geoff Allix (22m 23s):

Right. I think a lot of sports can actually be quite mindful and actually, the meditation experts say this. They say you can do everything mindfully. You can prepare food mindfully. You don't have to just be thinking, "I've got to do a half an hour meditation." You can live. I think there are people who do it really well, but if you say a Buddhist monk or something, they're living their whole life mindfully and that doesn't mean they're meditating the whole time.

Chris Cerillo (22m 51s):

I definitely tried to do that. I do like trail running and you really can't think about anything else where like, "There's a big rock. How am I going to navigate around that? I need to stay up right." Yes, that's what I would say: being stress-free just in general. Any person who works full time, good luck. You have deadlines. You have things that you have to do. You have to be an adult. You have to take care of your animals or your children if you have them. Life isn't easy, so being stress-free is hard. I know when I'm super stressed. I can feel more burning sensations or more tingling and I'm like, "I need to calm down."

Geoff Allix (23m 36s):

It's the one that you get instantly, don't you? If I get stressed, I can just feel symptoms coming up straight away.

Chris Cerillo (23m 46s):

Yes. Yes, totally. It's almost like a good thing that my body can tell me to slow down.

Geoff Allix (23m 52s):

Yes, because you can then fix it quickly as well. Talking about stress, you've got experience in dealing with big life decisions and how that affects your MS. In your case, you decided to come out about your sexuality publicly. How did you manage to deal with that?

Chris Cerillo (24m 15s):

That's what I like, publicly. It's like I'm a star.

Geoff Allix (24m 22s):

How did you manage the stress of that and stay calm through what had been a traumatic time?

Chris Cerillo (24m 34s):

Yes, that was rough. That was probably the roughest patch of my life. Being diagnosed with MS is really what catapulted everything else. It was within a few months of being diagnosed that I realized I was gay and it was time to come out, end my seven-year relationship, and move out. I'm on my own. It was a lot. How did I learn to deal with stress at that moment? I think I really leaned into just exercise, yoga, talking to friends, and therapy all at once. It was like I have to take care of myself right now because this was a lot.

Chris Cerillo (25m 19s):

Being diagnosed just made me re-evaluate everything in my life because you just don't know what's going to happen in the future. You don't know. You might not be able to run, you might have less vision in the future, or anything. My other eye could get optic neuritis, making me less capable of seeing or reading. You don't know. That's the truth for everybody, but I feel like once you're diagnosed with a big disease, I guess I'll say like MS, it really puts it front and center that you need to live your life now because you don't know.

Chris Cerillo (26m 0s):

With that in mind, I was doing a lot of yoga, a lot of thinking, and journaling, and it actually came to me while I was, I can really remember it vividly, in a yoga class. My brain was just being like, "You're gay. You need to come out," so I did. It was a lot to have to call my close people, my friends, and my family with the MS diagnosis, then a month later, be like, "Hey, I'm also a lesbian, by the way." It was a lot for sure.

Chris Cerillo (26m 41s):

I think, without close friends and a close network, that's also mentioned a lot in OMS with having your support system is so important. It would have been so much harder if I didn't have close friends and family that were like, "Okay. Makes sense," to both of the things that I had to tell them. If I didn't have that, it would have been a lot harder, but I know I'm really lucky for that. Just leaning on social support and being in therapy, I think it helped to already be started on OMS by the time I came out because I had already learned that these are the things I need to do for my health.

Chris Cerillo (27m 28s):

Another stressor, let's keep going, let's keep up.

Geoff Allix (27m 34s):

There are all sorts of different major, stressful things. It may be that it's caused by a major change in career, or you might have bereavement. There are all sorts of big things that happen in life. Dealing with those things, would you say that it is that friendship group, or are there specific things you think are particularly useful to deal with big traumatic decisions and changes?

Chris Cerillo (28m 2s):

I think I mentioned the people, the three therapy, exercise, but I also think it's your perspective on life. That's really what's helped me along and really what makes me enjoy every day. It's just literally doing and saying what I want to do and say. I always think you're going to die either way so why not just do it? I think it's a Lucille Ball quote where she says, "I'd rather regret something I did than something I didn't."

Chris Cerillo (28m 44s):

That's really how I live my life and it's going to suck and it's going to hurt for weeks, months, maybe even years when you decide to change your life, but the other side of it is just so beautiful and so worth living. As hard as it was, I'm glad that I'm on this side of it.

Geoff Allix (29m 10s):

There are obvious positives for you because you're living life as you want, but in terms of your family and friendship group and things like that, have there been positives to that side of things as well? Not the obvious positives, but in your life in general, have there been positives to making those big decisions?

Chris Cerillo (29m 32s):

Positives. I think coming out with both things, MS and being gay, really changed a lot of my relationships and made them closer because I was like, "I need to tell you this difficult thing," and "Oh yes, you're still here. You're still rooting for me and you're a part of my circle." It definitely increased the friendships that I have and family members too. It just encouraged us all to be more honest with ourselves and with each other, which I think is so important.

Geoff Allix (30m 9s):

I think there's an element that’s polarizing. It really shows people to either be really good friends or maybe they're not the friends you thought they were. If they're not prepared to accept the slight changes in me because of MS, then maybe they weren't as good a friend as I thought they were. Then some of the friends, you just think, I didn't realize. I've had infusion in hospital and stuff and it's the other end of the county. It's a long way for the hospital where it is, but some of the friends who came to visit me were not necessarily the ones I thought.

Geoff Allix (30m 52s):

I was like, "Wow, you've actually gone out of your way to do that just to keep me company. We've become much better friends. You've actually shown yourself to be a much kinder person than I necessarily realized." It can be really positive, I think, in some ways.

Chris Cerillo (31m 15s):

Totally, yes. It's taught me to ask for help sometimes too. I'm not good at all about that, like asking for help, but since they know about the MS and know I have limitations, they're sticking around, sometimes I can be like, "Hey, not feeling good." We had snow last night so this is a good example. My friend was out and about. I don't know what she was doing. She lives a couple of streets over and I'm like, "Hey, can you put my windshield wipers up on my car?" She's like, "No problem." I didn't want to go all the way downstairs because I'm so drained. I've been sick lately and my MS has been acting up at the same time.

Chris Cerillo (31m 56s):

Wonderful, but she was like, "No problem," and then texted me like, "All done." It's little things like that. We're not getting IV prednisone for a while there. I had it three times so far when my MS has been flaring. It was earlier on in my diagnosis, not lately, but yes, friends just being totally willing to be there with you and just sit in the room while you're getting an infusion and read a book. That's an incredible support. It really is.

Geoff Allix (32m 30s):

One thing I want to ask is how you live life to the fullest as someone with MS?

Chris Cerillo (32m 39s):

I think it has to do with just not letting MS stop me and almost, in a way, letting it fuel me because like I said, with that diagnosis, I was like, "Oh God, my whole life is changing, but I'm just going to let it change. I'm going to do what I want." It's already scary. It's like a looming threat of MS, but I'm just turning it around and being like, "Oh, well.

Chris Cerillo (33m 19s):

This is not the main focus of my life." If I'm going to describe myself in a paragraph, MS is probably not even going to be in the paragraph at all, maybe a footnote. It's there, but it's not going to hold me back from what I want to do, because if it did, I'm going to have serious regrets in my life. I have a literal bucket list though. It's literally this small book that I have. I don't know where I got it from. It's a real thing. Yes, yes. I add to it all the time and I cross things off it all the time. It just makes me focus on life. We have to do the things we do as adults.

Chris Cerillo (34m 2s):

We have to work, we have to pay bills, but then what comes next for me is like what do I want to do? What cool thing can I do in my life? Because maybe it will "get me" in the future. Anything could get us. We could get hit by a bus, but I'm not going to focus on that. I'm going to focus on enjoying my life while I can.

Geoff Allix (34m 23s):

What would you say to someone who's thinking, "Well, I'm not sure whether I do that, whether I go on that big trip, whether I do this, move house, or make this change?” What would you say to encourage people to make that leap?

Chris Cerillo (34m 40s):

I think it's a calculated decision, right? I always do the pros and cons. I want to go to Italy, but then there's the thought of like, how much is that going to cost? When can I actually do it? It's a nice balancing act. List everything out, and you got to realize. If fear is the only thing holding you back, you have to do it. That's my rule. If it's the only thing that's making me not do this thing, it's because I'm afraid to do it, forget it. I'm just going to do it. I'm going to plow through. That's a good way to live. Ask yourself that question. If I wasn't afraid, what would I do?

Geoff Allix (35m 20s):

You mentioned your bucket list. As a final question, can I ask what else is on your bucket list for a full life? What's a big bucket list thing?

Chris Cerillo (35m 31s):

There are so many things. There are so many pages.

Geoff Allix (35m 33s):

You're not going to win the Super Bowl, I'm sorry.

Chris Cerillo (35m 34s):

There are some things like that. I'm just not going to put that on the list, but you never know. Let's see what is on my bucket list. I think one of the big ones is I want to buy a little house in the woods and adopt an old dog. That's been my long-time plan. I would say just because you never know with MS. Just one floor in my house, but it's a big future plan. Also, like I said, I actually really do want to go to Italy.

Chris Cerillo (36m 15s):

My grandfather's from there so I'm like, "I’d really like to see it post-COVID, I guess," but there's also a bunch of little stuff on there that I can tick off in day-to-day life. It's been great. Yes. What's on your bucket list?

Geoff Allix (36m 32s):

Yes. I don't really think of a bucket list as small things, but maybe I should actually think of having big and little things. The things that I'd like to do are getting back things that I had before, like climbing, I was going to say, a mountain, but our mountains are not as big as your mountains. They’re quite small. These are things that I used to run-up. The highest mountain in Wales used to be between my parents, who are separated, where they lived.

Geoff Allix (37m 19s):

One of the routes was basically Parsons Mountain. Normally, people like to go up and down in a day, but I was doing a lot of mountain running and stuff at the time. I'd think I'm going to do that in a few hours. I'm going to run up and down it. Now, just if I could get up that mountain, that would be such a major achievement. I don't know if it's achievable or not, but it's something I can have out there as something I could possibly do one day if I got a bit better or you know, or even whether it involves help and I did it like an off-road E-trike thing.

Geoff Allix (38m 2s):

Even if I did it with that, that would still be quite an achievement.

Chris Cerillo (38m 10s):

Yes, you can definitely do it.

Geoff Allix (38m 10s):

Could I just push myself a bit further to do these sorts of things?

Chris Cerillo (38m 14s):

Right, that's the question.

Geoff Allix (38m 16s):

Yes, but I liked the idea of having smaller things as well. Could I, next week, do something not a major thing, but yes, just a lot of tight targets I think are a good thing. It's good to do that.

Chris Cerillo (38m 32s):

I put ax-throwing on my list. I crossed it off a few months ago for my friend's birthday, but it was just like a little thing that I always wanted to do. It was a super fun exercise class.

Geoff Allix (38m 46s):

Is ax-throwing you said?

Chris Cerillo (38m 48s):

Ax-throwing, yes.

Geoff Allix (38m 48s):

That's a thing where I live now.

Chris Cerillo (38m 48s):

I didn’t know that it's big there.

Geoff Allix (38m 49s):

It wasn't a year ago, but now there's this ax-throwing place. I've just been tempted to do it.

Chris Cerillo (38m 57s):

You should put it on the list. It's super fun. It's dangerous, kind of, but super fun.

Geoff Allix (39m 2s):

Yes, I bet. Everyone's standing on one side and throwing them the other way.

Chris Cerillo (39m 6s):

Yes. If you do it right, it's not dangerous. Cross it off, that small thing.

Geoff Allix (39m 13s):

Okay. I think that's a good idea. Just having the idea of journaling as well and having a list of things and taking things off the list. That's good.

Chris Cerillo (39m 22s):

Yes, it's a good life.

Geoff Allix (39m 24s):

Excellent. Well with that, I'd like to thank you very much for joining us, Chris Cerillo.

Chris Cerillo (39m 26s):

Yes, thank you so much for having me. It's been fun.

Geoff Allix (40m 11s):

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

View Details

Welcome to Living Well with MS Coffee Break #28, where we are pleased to welcome Claes Nermark as our guest! Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Claes, coming to you straight from Sweden.

Claes’s Bio:

Claes lives in Sweden. He is happily married to Malin, and they have three grown children. At university, Claes trained to become a physical education and biology teacher. In addition to teaching, he has added the following skills to his CV: software trainer, fitness and yoga instructor, event manager, sports club administrator, operations manager, vice principal, and employee wellness manager.

In 2002, during a stressful period as an event manager, Claes was diagnosed with optic neuritis. A scar in the brain where the optic nerve branches to each eye was found, and he was diagnosed with a stroke as the disruption of sight was very similar in both eyes. But was it really a stroke?

In 2010, it was time for a career change from sports club administrator to operating manager at a start-up in holistic health. During the stressful preparations for his new role, he noticed obvious double-vision when driving home one day. The MRI scan showed multiple lesions in the brain, and Claes was diagnosed with MS.

Malin, Claes’s wife, learned about OMS on the internet and this was the first step on an amazing journey to health and recovery. Apart from reading the book and adopting the program, Claes is forever grateful that he got the opportunity to attend the first OMS retreat in the northern hemisphere at Launde Abbey in 2013. The amazing people Claes and Malin met at Launde Abbey have all become their OMS family.

Without any DMDs, Claes has now been relapse free for eight years (and counting). Today he runs his own business, Do Your Thing, as a health creator doing public speaking, teaching, coaching, fitness classes, and personal training.

In 2021, Claes became the first OMS Circle Ambassador in Sweden.

Questions:

Claes, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
I understand that stress was a big factor leading up to your diagnosis. How do you manage it now?
What are some of the challenges you faced at first in adopting the OMS program, and how did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’re currently very involved in the OMS community, particularly as the ambassador of the OMS Circle in Sweden. Can you talk to us about the OMS Circles experience, and what that’s meant to you?
I also understand you’re a contributor to the newly published Overcoming Multiple Sclerosis Handbook. I believe you contributed the chapter on exercise. What do you have to say on the subject?
One of your personal interpretations of MS is Mental Strength. It takes a lot of that as well as physical ability to do triathlons, long distance running and biking, all of which you’ve done since your diagnosis. Now we know not everyone can accomplish these feats, but what advice would you give to our community in general about harnessing their inner strength to make progress on their own paths to improving their health?
Claes, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Three Important Lessons Claes Learned in 2021:

Sweden had a uniquely open Covid strategy.
One supportive call with someone newly diagnosed with MS can make all the difference.
You can use avocado to replace butter/margarine in many recipes for baked goods.

Three Interesting Facts About Claes:

Claes loves travelling and meeting new people and learning about new cultures. He lived for a year in Santa Barbara, California as well as a year in Christchurch, New Zealand. He has circled the globe both east- and west-bound.
Since being diagnosed with MS, Claes has completed in an Olympic triathlon (1500m open water swimming, 40km cycling, and 10km running), a 30km cross-country run and a 300km biking event.
Claes interprets MS as Mental Strength (during gym sessions it occasionally turns into Maximal Strength).

Claes’s Links:

Check out Claes’s profile on LinkedIn, where he posts a weekly video in Swedish (though body language counts for a lot, so you may not even need to speak the language).
Claes likes Brain Tools for Teens on Instagram.
Claes also likes Mind Valley, a global platform for personal development.

Coming up on our next episode:

On the next episode of Living Well with MS, premiering February 23, 2022, meet Chris Cerillo, an OMSer from the United States who discusses living life to the fullest with MS, including the peaks and the valleys. You won’t want to miss this intimate first person POV on life with MS.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing podcast@overcomingms.org.

S4E47b Transcript

Coffee Break #28 with Claes Nermark

Geoff Allix (41s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year anniversary serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our global Overcoming MS community. Our Coffee Break series invites into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break. Welcome to Living Well with MS Coffee Break #28, where we are pleased to welcome Claes Nermark as our guest. Claes lives in Sweden, he is happily married to Malin, and they have three grown children.

Geoff Allix (1m 21s):

At university, Claes trained to become a physical education and biology teacher. In addition to teaching, he has added the following skills to his CV: software trainer, fitness and yoga instructor, event manager, sports club administrator, operations manager, vice-principal, and employee wellness manager. Claes, welcome to Living Well with MS Coffee Break. We're so pleased to have you on our program. The purpose of this series is to better get to know some of the members of the community from around the world, and today you're in the hot seat, so could you tell us a little bit about your day-to-day life?

Claes Nermark (1m 57s):

Well, of course. Great being here. Today, I'm doing the final training to become a personal trainer. Well, it's quite a bit of a study right now and starting up being a public speaker, doing the training at the same time. I have, in my days, been busy, starting up in the new year.

Geoff Allix (2m 22s):

When were you diagnosed with MS? Could you tell us a bit about that and how you initially dealt with it?

Claes Nermark (2m 29s):

Yes. Let's go back to May 2010, a very busy time in my life. I was transitioning from an administrative position at a huge sports club in Sweden into a startup in education about holistic health. For a couple of days, I was simultaneously doing more or less two jobs, commuting like an hour down south for meetings at my old job in Malmo, two hours in the car up north to meetings with my new managers, and an hour back home. Probably did some workout in the evening, and then next morning, down to Malmo and up north again.

Claes Nermark (3m 10s):

When I got into the car, I suddenly had double vision, but if I held my head on the ride, it almost narrowed it to one road. I was just three quarters of the one hour back home and two takeoffs from the freeway almost back home. Sitting at the dinner table, my wife said, "Well, you have to see the doctor. This is no good." I was like, "Well, I'm so busy, not tomorrow," and she said, "Maybe next week, but please call the advice line, at least." I did. I called the advice line and I said, "Hi, my name is Claes and I have this double vision out of nowhere."

Claes Nermark (3m 50s):

My wife reminded me before making the call to tell them you had a stroke eight years ago, so I said, "Okay, and I had a stroke eight years ago so what's your suggestion." They said, "I think you should call an ambulance and come in right away." That was quite different from my view of not having time to see the doctor the next day or the next week, but my wife took me there. They did all sorts of the regular neurological scans and a regular x-ray. I was a fully fit man, and they didn't find anything wrong with me. They said, "Well, you may stay tonight.

Claes Nermark (4m 31s):

You might get a return appointment for an MRI scan during the weekends." With my double vision, I realized I couldn't do much proper job the day after anyway, so I stayed at night. I got an appointment for an MRI scan, and it turned out I have active lesions in my brain. The doctor said, "This is one sign of multiple sclerosis, and we would like to make a number of punctures as well to rule out some other alternatives." I have that one down as well, and I found one out of two indicators for MS.

Claes Nermark (5m 12s):

I got the preliminary diagnosis and, straightaway, got onto intravenous cortisol. I stayed for a few days, got very tired, got back home, and slept for days. I was lucky because I didn't have any experience of knowing anyone with MS, so I didn't have any real picture of what MS really meant because I was so focused on getting into my new job. It was kind of, "Okay, let's fix these so I can get on with my life."

Claes Nermark (5m 52s):

“But my wife had quite another vision because her grandma ended her life in a wheelchair due to MS so that was her picture of having MS. Seeing me going down that route was not a future scenario for our family and things.” She said, "Okay, you're not a good reader with your double vision. I'll scan what I can find, and I'll order some books." She got tons of books and started reading. Well, I was on sick leave as I couldn't do much. It was just tiring walking and doing things.

Claes Nermark (6m 33s):

If I just walked down the path, should I take the right or the left one with my double vision? Once in a while, I used the patch for one eye to ease off the double vision and things like that, but it was very tiresome, but luckily, I never got afraid of getting the MS diagnosis. We've been working a lot with mental training, doing visualization, things for sports events, and doing various things in life. That's one thing I used before, so my diagnosis was then in 2010, but looking in the rearview mirror, the stroke I mentioned from 2002 was another very hectic period in my life when I was working more than full-time as an event manager, trying to be the best dad and husband ever.

Claes Nermark (7m 34s):

At the same time, I ended up with optic neuritis, and back then they did all sorts of examinations, but it took like six or seven weeks until I got to do the MRI scan. When those results came back, they found one score or lesion, probably a score as it was weeks later, that was situated just before the optic nerve divided into each eye. My optic neuritis was very similar to before and they said, "Okay, we diagnose this as a stroke."

Claes Nermark (8m 15s):

But some years ago, I got to read all my old journals. In that journal from 2002, there was a little note, "Multiple Sclerosis?" As they found this scar and my vision was back to normal weeks later with no other symptoms, I got the diagnosis of stroke. Then again, between 2002 and 2010, I had others like numbness starting in my toes, slowly reaching just mid-thigh. Before it was turning back, I went to an acupuncturist to treat this weird thing.

Claes Nermark (8m 60s):

I had tingling in my hands and things like that during these years up to my official diagnosis in 2010. Officially, I was diagnosed in 2010, but probably I had my MS debut in 2002 with the optic neuritis.

Geoff Allix (9m 18s):

Then you probably never had a stroke.

Claes Nermark (9m 20s):

Probably not.

Geoff Allix (9m 21s):

That's fascinating when you say it because you look incredibly fit and I think that you don't look like someone who's had a stroke, but actually, that's amazing.

Claes Nermark (9m 35s):

Yes, I was just 40 years old having a stroke, being a fitness instructor didn't really come along with what I knew about fitness and health even though I now know a lot more. If I haven't got my MS diagnosis in 2010, I would most likely have had the opportunity to have a stroke or something similar later in life due to the lifestyle I had back then. I thought it was healthy, but wow, I've learned a lot since.

Geoff Allix (10m 8s):

Yes, likewise. I thought because I was slim and I could run a long way, I was healthy. I could eat anything as long as I burnt off the calories by doing exercise. That was my thinking. Anyway, when did you come across OMS and why did you decide to follow the OMS program?

Claes Nermark (10m 31s):

Well, luckily, one of the books, Marlin, my wife found when scanning the market was Overcoming MS, the big book by George. She started reading it and, we started it. I actually say "we" because she was on the same journey from the very beginning. We adopted most of it at once, but not most of it as she bought more books that were other alternatives. On top of the OMS program, we took gluten away and God knows what else we had to take away or adapt.

Claes Nermark (11m 13s):

For the first couple of months, we opened the fridge and said, "There's nothing we can eat," but slowly we realized, "Okay, probably the OMS program is 'the one' to trust." We went more and more into that one, even though there were some things. We've been into raw food for a while before my diagnosis, so we used a lot of cold-pressed coconut oil. We've read all about the benefits of that one, but then again, it's all fat fats, but we keep that one because we've heard from other sources that's a good thing, along with dark chocolate.

Claes Nermark (11m 59s):

With all the antioxidants, that's got to be good for you. We kept the dark chocolate. We were probably like 90+ percent into the program. As we've been in New Zealand for almost a year with the kids when they were small, Marlin found out about the retreat, mainly in Australia and New Zealand. We thought that was a good reason to go back to New Zealand. I wrote it down to the golden foundation, I think it's called. I asked, "Okay, when is the next retreat scheduled for New Zealand so I could see if I could get some funding from some grants or something here in Sweden to support the trip."

Claes Nermark (12m 46s):

I got some dates, but just maybe a month or so after I got an email saying, "Hey, you've shown interest in our retreat down under. We've just decided to set up the first in the Northern hemisphere, so you got another two weeks to decide whether you want to leave early bird applications." I just told them all, "Well, we just have to go. We can't miss this opportunity." In 2013, we were among the lucky ones getting into the Launde Abbey retreats.

Claes Nermark (13m 32s):

We referred to it as our second family that built up during that week. It was a week with George, , his wife, Sandra, a yoga instructor, and some other amazing people. I think we were about 35 people with MS, primary progressive, and like me, relapsing-remitting, and maybe 10 partners coming along as well. We actually lived the program for a week. When we had the retreat for ourselves, so they set up the menus and things like that.

Claes Nermark (14m 19s):

George went through everything from medications to meditations, and a lot of the research backing up all the claims in the book. I talked to George, and I said, "What about these coconut oils?" He said, "Well, it's saturated fats. I haven't found any studies separating animal or vegetable fats. As I haven't found any studies proving it's safe, I choose not to be the Guinea Pig." I was like, "Kind of a good point of view."

Claes Nermark (14m 59s):

Seeing George being so vital, fully fit, no signs of MS whatsoever, I realized, "Okay, let's drop the coconut oil." We actually dropped the chocolate at that point. From that retreat, we really have truly believed in the OMS program.

Geoff Allix (15m 24s):

Yes. It's true that the saturated fats from plant sources, we just don't know, do we? It's just one of those things that hopefully there'll be more research on because they know it is different. There are big chemical differences between coconut oil and meat fat, but like you say, do you really want to be the Guinea Pig to find out if it's okay or not? Maybe, in the future, we will be having coconut oil and we will be having chocolate.

Claes Nermark (15m 55s):

Yes. There were many nuts and seeds containing lots of fat as well, even though they've got other fats, but it's not fat alone. It comes in combination with other good things as well.

Geoff Allix (16m 9s):

I've had people actually have a very small amount of chocolate, very dark chocolate because there are benefits to chocolate. They weigh it up, but yes, it's very difficult. Hopefully, there will be, in the future, more research because the more I think it's becoming normalized that diet and lifestyle have a factor, then hopefully, there'll be more research done. It's difficult because the drug companies clearly aren't going to pay lots of money for it.

Claes Nermark (16m 41s):

Those kinds of studies, no, unfortunately.

Geoff Allix (16m 45s):

You mentioned you had a very stressful life. How do you manage stress now that you've been diagnosed?

Claes Nermark (16m 54s):

Well, in the beginning, I was just doing nothing for a while, but then I gradually managed to get into meditation. I think I managed to do that thanks to taking a Xi Gong course. My wife read an article about a guy saying now he dares to hold his daughter because he got his MS diagnosis when his daughter was born, and he got a malfunction in his arms, so he really didn't dare to hold his daughter. He went on to a Xi Gong course and got enormous benefits out of that one.

Claes Nermark (17m 36s):

I joined the same organization, went for a weekend, and started doing Xi Gong 20-30 minutes almost daily. That was one way for me to actually, more or less, do nothing even if you do some with very dedicated movements during the Xi Gong session. Before that, I had a hard time just sitting still for five minutes, but since then I've been adding it on, I'd say a couple of years now, I don't know when I really got into habits. I start my day by getting out of bed into my yoga or meditation sofa and sitting for 20-25 minutes before taking a glass of lemon water and taking 30-45 minutes morning walk, depending on the weather, before having breakfast.

Claes Nermark (18m 36s):

I start my day in a very relaxed way. With meditation, setting up myself for a stress-free day. I think this is the key to being so much more aware of where I am right now every day. Nowadays, I can so much earlier realize like, "Okay, there's a lot of things going on right now. How can I stop this stressful cycle from coming up?" Realizing, "Okay, yesterday I had my yoga class and then I had one meeting and then I should have my Sunday chat with my brothers, spread out in the world."

Claes Nermark (19m 19s):

I realized coming into the afternoon I don't have time for that meeting before meeting my brothers, so I just canceled that meeting. Actually, one thing, I've learned a magic word since my diagnosis. It's not a four-letter word. It's a two-letter word and it's spelled N-O. I've learned to say no to things, even though they're very exciting things. I really have to see what's in my calendar. Could I add this one as well? I am an active person. I used to have a laser focus on my calendar way back when we all had paper calendars.

Claes Nermark (19m 59s):

Someone could ask, "Could you help out with this fitness class on Wednesday?" "Okay. What week?" "Next week," and then narrow down. "What date?" "Wednesday." "What time?" Then squared in the hour for the class. "Yes, there's nothing in my calendar. I could have like one class the day before, I had one class in the morning, and all other sorts of things, but no, that was perfectly fine. I could squeeze that in as well." Nowadays, I realized if I say no to some things, I can say yes to my health, I can say yes to my partner, I can say yes to my family. That is so much more important than pleasing everyone else because, that way, I will be here for the long run, and that way, I can please more people in the long run than pleasing everyone right now.

Geoff Allix (20m 47s):

That's a fantastic way of looking at it. I think it was actually my neurological physio who said to me a similar thing. He said, "You just need to consider that you're not an ambulance driver or a fireman. You can be late for things, or you can say, 'No, I'm not doing things,' and it won't actually cause a problem." If you don't do something, if you say, "No, I'm not going to do that," what's the worst that can happen? If you're five minutes late for a meeting, what's the worst that will happen? If you're doing something that's critical, like if you're an emergency paramedic, then yes, you need to do that thing right now, but you're not."

Geoff Allix (21m 28s):

Then you think, "Actually, yes," because there are people I know who are always late to things. You think, "They're always late," but it doesn't matter. They don't get stressed about it and you think, "Okay. Just don't get too stressed about things." So do you have any problems adopting OMS? What parts of the program did you have any trouble with?

Claes Nermark (21m 56s):

The problem, in the beginning, was actually that we did more than the OMS program. I was once, again, lucky because we attended the Unleash the Power Within seminar with Tony Robbins in London, 2007. The fourth day in that seminar is called living health. In the end, we got a 10-day challenge quitting, I think, meat and dairy for 10 days. I was definitely a meat eater and I love dairy, yogurt so it was a challenge for me, but my wife's been a pescatarian since before I think she was 16 or something.

Claes Nermark (22m 36s):

It was her almost everyday life, but it was a challenge to me. I said, "Okay, I can do this for 10 days," but after 10 days, I realized my stomach wasn't as upset and weird as it used to be. I didn't have this lack of energy in the afternoon having to have that afternoon snack or something. I thought, "Could this really be it?" For 10 days, I was not having meat or dairy, so I thought, "Well if it is, I'll try a little bit more." I haven't had meat since. I actually got back to having dairy when it was present in whatever kind of food you had out in the restaurant or seeing friends.

Claes Nermark (23m 24s):

I used to have some yogurt because I believe in beneficial bacteria in yogurt and things like that. I had taken huge steps towards the OMS diet in 2007. The diet thing wasn't that much of a giant step for me. It wasn't a total turnaround of my everyday diet. The most challenging thing I'd say was actually the meditation part. As I said, I had a hard time just being restful for more than a few minutes. I had to move around and things like that, but now, half an hour, no problem.

Geoff Allix (24m 4s):

When did you start to see positive benefits of the OMS program and what were those?

Claes Nermark (24m 12s):

I'd say, in a weird way, after about six months, my vision went back to normal like six to seven weeks. I was all fine until I think it was Christmas day or something. I got some weird senses in my eyes again. The day after, it was a full-blown double vision. I thought, "No, this doesn't work." I went to the emergency, went to see a neurologist who said, "It was most likely a relapse so let's get you on intravenous cortisol," but we'd read the book and read about taking it orally in pills instead of intravenous, that way you could take it at night, adding onto the natural cortisol that your body's producing.

Claes Nermark (25m 4s):

I asked, "Well, is it possible to get it as pills as we had plans to go to see relatives before New Year in Stockholm?" She's like, "Well, if we have it," so she had to find out whether they had the option to give it as pills, but they did. I got the prescription for a five-day course. I took them at night, even though the prescription said, "Take them in the morning so it will not disturb your nighttime sleep," but I followed the suggestions in OMS. Went to Stockholm, was a bit discouraged about the OMS program not working as it was a full-blown double-vision like the diagnosis in May, but after three days, I thought, "I feel a little bit better today."

Claes Nermark (25m 55s):

We were out. The crazy in between Christmas and New Year shopping with all the sales and things. It was chaotic walking on the sidewalk with double vision. It's enough people caught on the regular day, but with the double vision, that was stressful. On the third day of the five-day course, it feels a little bit better but that can't be. It took like two months last time so now, it's just an illusion. The day after, I felt even a little bit better, like almost normal. The fifth day, we were driving back home or actually my wife was driving back home, but I felt like my double-vision has gone.

Claes Nermark (26m 42s):

I sat in the passenger seat pretending to be a driver, looking at the rear-view mirror. Could this really be? After an hour or so, we went for just a meal break and I said to my wife, "Well, you might not believe me, but my double vision is gone. Is it okay for you if I drive for a little while and make sure it's gone? Because I've been sitting here as a copilot for the first hour of the drive." She said, "Why don't we? It's just the freeway. You don't have to overtake anyone." I drove nonstop for two hours, nothing coming back, and double vision didn't come back. Then I realized, "Okay, the first time it took seven or eight weeks for my double vision to disappear. Now I've been on this program for six months and I'm taking those pills at night instead of intravenous, maybe that helped me to get back so much quicker."

Claes Nermark (27m 35s):

I took that as a true sign of there's something happening here. From that, getting the double vision again was really a backlash, but up to five days getting back to normal so quickly, I took it really as a sign that something is happening. I continue to have a few more relapses, a few issues with my sight, tingling in my hand, neglect that for about three years from diagnosis. During the year when we went to the retreat and I remember George saying, "It's usually between maybe two to four years before you see full results from being on the program because every single day or every single minute, you are renewing yourself."

Claes Nermark (28m 28s):

Sitting here talking, cells are dying in our bodies, and new cells are created, but if you feed them good building materials, they're not building out of old crap because you're building a new body with good, solid, proper, natural material that will not trigger things that might cause damage. I've now been relapse-free for almost nine years now so it's amazing.

Geoff Allix (28m 57s):

You're the ambassador for the OMS Circle in Sweden so could you tell us a bit about the OMS Circle there?

Claes Nermark (29m 6s):

I'm from this family of friends from the Launde Abbey retreat. I heard about their Circles and they're meeting people, but actually, I didn't meet anyone, and OMS wasn't present at all in Sweden. I said, "Okay, let's see what happens." During the pandemic, by a friend of a friend, got to meet a guy that was newly diagnosed. He was a carpenter, but also on sick leave. He was very low in energy. I'm just giving some starting advice on getting on to OMS on top of his medication because he was, of course, on disease-modifying drugs like everyone else in Sweden as the first route of the treatment or rather the only route of treatment if you're not aware of OMS.

Claes Nermark (29m 52s):

I talked to him a couple of months later and he was just a new person. He was so full of energy and was so grateful for whatever advice I've given him. He was back to working half time and things like that. At that moment, they were talking about the OMS Online Circles. I was like, "Okay, we can actually meet online. We don't have to meet in person." I contacted OMS and said, "I'd like to be in a Circle, but I have to start up digital to spread it in Sweden. It's a big country, we're spread out, and there's not much knowledge about it.”

Claes Nermark (30m 33s):

It started almost a year ago and I think we're about 10 people now. I've just met three of them in real life. Otherwise, we've just met digitally. One thing that I have to say in common, here, is you can get some hope compared with other Facebook groups or MS groups, you meet and discuss your problems. You never meet and discuss your opportunities. I'd say OMS is really an organization of hope and possibility.

Geoff Allix (31m 16s):

You contributed to the newly published Overcoming Multiple sclerosis Handbook. Could you tell us a bit about your contribution to that?

Claes Nermark (31m 27s):

Well, I got the honor to write my personal story about exercise. I was a lucky one because I was fairly fit when I got the diagnosis. When I got back from my relapses, I could fairly quickly get back to more or less normal fitness routines. I realized now becoming a personal trainer, the word exercise is, to many people, challenging. Now, when I think about it, it's sad. The chapter is called exercise instead of movement because what every person needs is getting out of an activity and that everyone more or less can move at their level.

Claes Nermark (32m 16s):

Even if you got MS sitting in a wheelchair, if you can push yourself around, do that because that will get your heart rate up a little bit and help push things around in your body that helps you heal as well. If you can walk, do the walk. If you can run, well, continue running or biking or swimming, whatever. Sometimes people say, "I have to exercise." Just the word, attitude, and exercise, it's not a good combination. Then they wanted so much, and they listened to so many others and it's a must and it becomes a stress.

Claes Nermark (32m 57s):

Stress is no good for, well, not anyone, especially for us with MS obviously. That way we should talk more about movement. My message is whatever you can move, keep moving it because our bodies are so exceptionally clever, they adapt to what you do and what demands you put on your body. If you put the demand on lying down on the couch, the body's clever, "I don't have to. I don't have to have this capacity to move around as I'm not moving around." Once you start moving around your heart and everything starts to adapt? There are healing processes of movement.

Claes Nermark (33m 41s):

Once you get into a decent amount of movement, maybe then you get enough energy to exercise as well.

Geoff Allix (33m 47s):

Thank you so much for being on Living Well with MS Coffee Break and allowing the community to get to know one of its own members a bit better. One last question before you go, we have a tradition to try and tap into your experience of MS and specifically OMS. Could you give a piece of wisdom to maybe help people who are newly diagnosed better adapt to the program?

Claes Nermark (34m 18s):

I would say I have two pieces of advice. First, I'd like to quote a quite famous sports brand and say, "Just do it," because in the Facebook group for the newly diagnosed, they come in and say, "Well, maybe I should wait for a little." Then people jump in, "Start right now," because the sooner you start, the sooner you will reap some benefits. As it will probably take a couple of years before you have a full-blown effect of whatever you do with the OMS program, so just do it. Get into it, but on the same note, do not do it all at once.

Claes Nermark (34m 59s):

That might be overwhelming. When you get newly diagnosed, just make sure you add good things like flaxseed oil and check your vitamin D levels. That way they can add good things without taking anything away. It's not a threat. It's not a turnaround of your life or anything like that. Becoming a trained health coach, they talked about crowd-outs. You add good things instead of focusing on taking things out. If you add good things and add good habits, suddenly the old bad habits are just crowded out of your life. Step-by-step, but just do it.

Geoff Allix (35m 39s):

Thank you very much for that. Claes, thank you for joining us on the Living Well with MS Coffee Break.

Claes Nermark (35m 45s):

Thank you. It's an honor being on the show.

Geoff Allix (36m 27s):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or do you or someone you know want to be featured on a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

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More than 21 years since Professor George Jelinek published ‘Taking Control of MS’ (2 editions), followed by the first edition of ‘Overcoming Multiple Sclerosis’ in 2010 and the second edition in 2016, Professor George Jelinek is back with the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. We are pleased to welcome back Professor George Jelinek, creator of the OMS program and one of the three editors of this new, highly anticipated book. We also very pleased to welcome back to the podcast Associate Professor Sandra Neate, Head of the Neuroepidemiology Unit at the University of Melbourne, and another of the three editors of the new book.

Prof. George Jelinek’s Bio:

Professor George Jelinek is the founder of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne and Honorary Professor at NEU. The NEU's charter is to investigate the modifiable lifestyle risk factors that predict the progression of MS with a view to refining a preventive medicine approach to management of the disease.

Professor Jelinek specialized in emergency medicine, winning the prize in the first specialist examinations in 1986. He is a past President of the Australasian Society for Emergency Medicine (ASEM) and past Vice President of the Australasian College for Emergency Medicine (ACEM).

He was the first Professor of Emergency Medicine in Australasia and was the founding editor of the journal Emergency Medicine Australasia, a MEDLINE-indexed journal that he has edited continuously for nearly 30 years. For his contribution to emergency medicine, he was awarded the ACEM Medal in 2003, the highest individual honor in the specialty of Emergency Medicine in Australia and New Zealand. The College for Emergency Medicine also awarded him the 2006 John Gilroy Potts Award and the 2012 and 2014 Edward Brentnall Awards, for the best publications in emergency medicine and public health respectively in those years.

Recognizing his contribution to both emergency medicine and multiple sclerosis, Professor Jelinek was a Western Australian finalist for 2008 Australian of the Year, and a Victorian Finalist for the 2016 Australian of the Year.

Most recently, recognizing his leading role in MS epidemiological research and strong background in medical journal editing, he was appointed Chief Editor in neuroepidemiology for the leading MEDLINE-indexed neurology journal Frontiers in Neurology, ranked in the top 16% of the top tier 192 neurology journals indexed with Thomson Reuters.

Professor Jelinek is the author of ‘Overcoming Multiple Sclerosis’ and one of the editors (along with Associate Professor Sandra Neate and Associate Professor Michelle Donoghue) of the newly published the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’.

Associate Professor Sandra Neate’s Bio:

Associate Professor Sandra Neate is a Senior Principal Clinical Research Fellow and the Head of the Neuroepidemiology Unit. She has also been a facilitator on Overcoming Multiple Sclerosis events.

Sandra completed her medical degree at the University of Melbourne in 1985. Sandra went on to train as a Specialist Emergency Physician with the Australasian College for Emergency Medicine working as an emergency physician for 20 years at St Vincent’s Hospital Melbourne. She has also worked at the Coroners Court of Victoria since 2010 and on the Victorian Mental Health Tribunal since 2015.

Sandra’s interests moved towards research, and she has published in areas regarding coronial matters and family experiences of organ donation. She commenced at the Neuroepidemiology Unit, along with George, in 2015 and now leads the team and their major research projects, the HOLISM study, the STOP MS study, investigating the outcomes of people who have attended residential lifestyle modification workshops, and the Multiple Sclerosis Online Course trial among others.

In 2021 Sandra and George won the Melbourne School of Population and Global Health Engagement Award in recognition of their work and research with the MS community.

Sandra is one of the editors, along with Professor George Jelinek and Associate Professor Michelle Donoghue of the newly published ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’.

Questions:

Professor Jelinek, or may I call you George, so wonderful to have you and Associate Professor Neate on the podcast again. First and foremost, since we haven’t had you as a guest on the show in a while, can you fill us in on what you’ve been up to these past few years?
George, can you tell us a little about the new ‘Overcoming Multiple Sclerosis Handbook’ and how the project came together and to fruition?
Neate, or may I call you Sandra, how did you become one of the three principal editors, along with George and Associate Professor Michelle O’Donoghue?
George, what are the main differences between this new handbook and the original editions of ‘Overcoming Multiple Sclerosis’?
Sandra, anything to add to that?
Also, Sandra, I understand this new book is a collaboration with many different contributors from around the world. Was that hard to manage and what did it add to the project?
George, have there been any promising developments over the past few years that you’ve either tracked or somehow been involved in that provide further support or evidence to the efficacy of the OMS approach to lifestyle modification for managing MS?
Sandra, from the NEU perspective, where you serve as head, how does this new book add to the arsenal of ways in which you’re trying to advance lifestyle modification therapy for people with MS?
George, how do you recommend people use the new book? Is it more for a particular audience, such as newly diagnosed?
Question for either of you: how does one get the book? Is it out now?
Sandra, any final thoughts or words of encouragement for the OMS community?
George, one final question for you: Overcoming MS the charity is celebrating its 10th year in 2022. What is your anniversary wish for OMS?
Thank you, Professor George Jelinek and Dr. Sandra Neate, for joining us on this special episode to announce the publication of the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. We encourage everyone listening to read the book. Information on how to get it is available in our show notes. And thank you both for all you do to keep advancing the mission of OMS and the benefits of lifestyle modification for all people with MS. I hope you both have a happy 2022!

Links:

Get directed to where the new Overcoming Multiple Sclerosis Handbook is being sold in your area

Coming up on our next episode:

On the next episode of Living Well with MS, join us for the next installment of our Coffee Break series, where we meet Claes Nermark, a health coach, personal trainer, and the first OMS Circle ambassador in Sweden. Premieres February 14, 2022 on your favorite podcast platform.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E47 Transcript

Hello 2022, Hello OMS Handbook

Geoff Allix (1s):

Geoff Allix (47s):

Have questions or ideas to share? Email us at podcast@overcomingms.org, or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. More than 12 years since the first edition of Overcoming Multiple Sclerosis was published and six years the release of the second edition, Professor George Jelinek is back with the Overcoming Multiple Sclerosis Handbook: A Roadmap to Good Health. We are pleased to welcome back Professor George Jelinek, creator of the OMS program, and one of the three editors of this new highly anticipated book.

Geoff Allix (1m 32s):

We are also very pleased to welcome back to the podcast Associate Professor Sandra Neate, Head of the Neuroepidemiology Unit at the University of Melbourne, and another of the three editors of the new book. Welcome back, Professor George Jelinek and Associate Professor Sandra Neate. Could I call you George and Sandra?

George Jelinek (1m 54s):

Yes, of course, Geoff.

Sandra Neate (1m 55s):

Of course, yes.

Geoff Allix (1m 56s):

Welcome back to the podcast.

Sandra Neate (1m 57s):

Thank you.

George Jelinek (1m 58s):

Thank you.

Geoff Allix (1m 59s):

George is the founder of the neuroepidemiology or NEU unit at the School of Population and Global Health at the University of Melbourne. I will avoid saying that again. So, if I'm about to say it, I'm just going to say NEU. Okay?

George Jelinek (2m 20s):

It's quite alright.

Geoff Allix (2m 23s):

It's quite big news with the launch of a new book, and it's wonderful to have you back on the podcast. First and foremost, since we haven't had you as a guest for a while, can you fill us in on what you've been up to for the past couple of years?

George Jelinek (2m 38s):

Well, I think people may be aware that I retired in October 2019, which seems like a lifetime ago after all the events that have transpired since the start of 2020. I certainly planned a different retirement than I'm finding myself in with COVID, but I guess, one of the important projects and a really big project in that has been this book, which has really taken a couple of years to get together and get to the stage now where it's about to be released. I had had other plans. I'd had plans for travel.

Geoff Allix (3m 19s):

I was going to say were you planning on traveling? That probably didn't go too well.

George Jelinek (3m 24s):

No, that went out the window a little bit. We've done a few small trips whenever windows of opportunities have opened up, but Australia's had its particular response and it's been very hard to go anywhere really. The other thing, I guess, that I've enjoyed doing, and I was planning to do in retirement anyway, was do more of my writing and recording of music, which, as a young man, I used to do quite a bit of recording on a reel-to-reel type deck. Now, with digital stuff, a blank canvas opens up with all these techniques that you can use that I never had access to in the past.

George Jelinek (4m 8s):

I just laid down track after track, putting down little various instruments, then singing, putting the harmonies on, putting the drum track on, and so on. I've put probably seven or eight songs down during lockdown to the stage where they're ready to be released. I'm pretty happy with that little endeavor. It's been good fun.

Geoff Allix (4m 28s):

The future might be rockstar George Jelinek, previously known as your epidemiologist.

George Jelinek (4m 34s):

Well, I think a very small audience. Possibly family and close friends might be down.

Geoff Allix (4m 41s):

Could you tell us a bit about the new Overcoming Multiple Sclerosis Handbook, and how the project came together and came to fruition?

George Jelinek (4m 53s):

Well, listeners might not be aware that it is actually when Sandra and I were in the UK in the middle of 2019. You might recall we came over for the big Edinburgh event at that time. In fact, I think you interviewed me and Sandra at the end of that day. We went out to London after that and met with the board of trustees. One of the things that was high on their list of priorities was to look at updating the OMS book, whose second edition came out in 2016, and they thought it would be good to get a new offering out there for the OMS Community.

George Jelinek (5m 38s):

I was very resistant to the idea, really very resistant. I'd seen that last book as the last thing, the last big project I would do in writing, but Sandra and I talked about it. The more we talked about, the more we thought, "Actually, this is a really good opportunity, a very different opportunity than me writing a book. Why don't we get a whole range of contributors from across the OMS community worldwide to write it, not only their experiences but the skill and wisdom they've distilled over quite often long periods following the OMS program, adhering to the program, and get that into a big volume?”

George Jelinek (6m 27s):

Then it has a consistent theme and feel to it. Sandy and I were initially the editors of the book, and then we felt that we probably should broaden that a little. We asked Michelle O’Donoghue, who is a Harvard cardiologist who's been on the program for about 10 years and whom we met in Boston during the US tour back in 2016, to be a co-editor with us. That project really has taken a couple of years. We had to recruit that big group of people. There are 19 content chapters in the book, and every chapter in the book, bar a couple, is followed by a personal story from someone else from the OMS community.

George Jelinek (7m 16s):

It was a short story of their experience, usually trying to relate it to the particular content of that chapter. Then each chapter is also introduced by an inspirational quote from someone else in the OMS community. We've got around about 50 different OMS voices, all pitching together about the program, how to adapt, and how to adhere to it. What are the tips and traps around the program? What their experience might do in helping to illuminate the pathway for people with MS.

Geoff Allix (7m 54s):

Would people treat it as a companion guide? It's not a new edition, is it? It's a companion to the Overcoming MS main book.

George Jelinek (8m 4s):

Yes, they're two very different books. The last book was me, really my own voice, and trying very hard to put all the complex medical literature into lay language, to make a strong case for why the OMS program should be adopted. At times, looking back on it, I think I was more or less successful in that. Some of the science is a bit obscure and a bit hard to explain, but it seemed to hit a chord with a big portion of the OMS Community. A lot of people have adopted it but one of the constant bits of feedback we got was that it wasn't really all that clear on how best to adopt it.

George Jelinek (8m 53s):

This book really is that part of the jigsaw. As you said, it's a companion. It's not a research-based book so even though it's based on the program, which is, in itself, research-based, it's not a book that's full of references. It's much more full of the personal experience and wisdom that each of these people in our community has got. Many of these people are really well known to our community. People who've been OMS facilitators, people who appear on your podcast series, people who have done cooking demonstrations for OMS, people who range in profession from chefs to psychiatrists, to general practitioners, family medicine doctors, to psychologists, to astronomers.

George Jelinek (9m 49s):

We've got a whole range of people in there who speak from their experience. That's the flavor of it. That's the thing that we're really happy about that it's no longer this single voice, which is always problematic because it just really reflects my views and has become very ingrained. It's nice to see a whole lot of other people tell us their views and what they've found easy, what they've found hard, how best to get over some of those obstacles, and so on.

Geoff Allix (10m 25s):

Sandra, how'd you become involved as one of the principal editors of the new handbook?

Sandra Neate (10m 31s):

I was there at this meeting in 2019 that George referred to in London and I think when it became clear that George didn't want to rewrite the Overcoming Multiple Sclerosis book as we discussed we came up with this idea of something different. One of the main reasons we wanted to make it different was to, what we call future proof the book. Meaning that because the other book is full of hundreds of references, it really needs to be kept up to date. You need repeat additions so that the book doesn't become out of date. We planned this book to be future-proofed, meaning that it wasn't full of references to the medical literature.

Sandra Neate (11m 13s):

It was peoples’, as George said, distilled wisdom. The idea was really germinated between the two of us and working at the university, I had a six-month sabbatical coming up in 2020 so this was my proposal as part of my sabbatical, to use three periods of two months that I had to, first of all, work together to recruit the authors and then edit the chapters that were coming in. We did it over the year really of 2020 and 2021 so seems like a long time ago now. That was my role, and it was a joint venture.

Sandra Neate (11m 56s):

George, obviously, had a lot of them within the community and he kept a track of all the authors and followed them up, et cetera. Then he, Michelle, and I edited all the chapters jointly, Michelle from over in the US with a newborn baby. She did as much as she possibly could and always added a voice of calm reason and a different perspective to the things that we thought. She had a new perspective to add to what we commonly think, which was a wonderful addition. That's the way it evolved and played out. It's been a really rewarding experience because we're very proud of what we've produced, but the people who were involved in it, of course, were very involved and very keen to see the end product.

Sandra Neate (12m 47s):

They definitely feel they have an enormous stake in it, and they do. That's a lovely feeling that it's a joint venture and a product that's been made by many people, like-minded people.

Geoff Allix (12m 59s):

Was it hard to manage people around the world? How did that work? They've added to the project, and you mentioned different voices like Michelle.

Sandra Neate (13m 12s):

Yes. Well, the three editors, we stayed apart from all the chapters, but really, we just sent out invitations saying, "Would you be interested in authoring the following chapter?" People were incredibly keen and helpful. There wasn't much that we needed to do to entice people to become involved. Yes, there were one or two people who were always a little bit late to meet their deadlines, but in general, everyone had their work back when was asked. It was an amazing thing. Really, they're all wonderful. It varied between the amount of editing that was required between chapters. Some required some work just to get them down to word limits and those sorts of things, but in general, it was a fairly easy task to get everyone to meet the chapters.

George Jelinek (13m 59s):

These are people who are incredibly well motivated to get this message out. As we were saying, many of them have been facilitators, many of them have done a lot of work for OMS, raise funds for OMS, and so on. Their hearts were most definitely in the right place and they're very keen to be involved enough. I've got to say, some of the chapters came back, they just blew our socks off. We were really quite amazed at the quality of the work, but also the depth of insight that these people had developed. Some of them have been on the program now for 10 to 15 years.

George Jelinek (14m 41s):

In that time, they may or may not have interacted terribly much with us, but they've clearly worked out their own ways of doing this. The chapter by Jack McNulty, for example, who I know has been on your podcast, but his chapter on food – I was just astounded at the quality of that one.

Sandra Neate (15m 6s):

I think the thing is too, some of the authors, being on the program for a long time, some of them have their own specialty, as in their medical specialty or their own professional specialty that, of course, has shaped their view of the program. They have perspectives that we didn't have, things that we'd never thought of because we've been doing the same work for a long time and it's progressed and evolved, but to hear a psychiatrist with MS talk about mental health is a really interesting novel thing because, although we know Keren Taylor very well and she's worked with us, to hear her written perspective on the whole thing was incredibly enlightening.

Sandra Neate (15m 47s):

George has mentioned a number of other chapters. Phil Startin, who wrote the progressive MS chapter, who's lived with progressive MS for years, had some amazing insights into progressive MS, and amazing facts, figures, attitudes, and ways to adapt the program to it. It's this new perspective and insights, professional and personal insights that were really useful.

Geoff Allix (16m 17s):

George, is there anything that you've come across in the past few years that maybe you've just been aware of or been involved in that has further supported the evidence for the efficacy of the OMS approach to lifestyle modification for people with MS?

George Jelinek (16m 40s):

Well, actually, Geoff, it astounds me the degree to which the ongoing research effort around the world into the lifestyle risk factors in MS has validated the program. I've actually been astonished when you see work come out from NARCOMS, for example, the North American Research Committee on MS, publishing in Neurology, the leading neurology journal pretty much in the world about their large data set of North Americans with MS and confirming the findings of our HOLISM study, that the higher quality diet, the less disability, the fewer relapses, the better quality of life, and so on.

George Jelinek (17m 31s):

Then that's equally supported by the UK MS Register, by the Dutch MS Society publication, and of course, our own HOLISM work. We keep publishing on that and we're up around 40 to 50 papers now in the mainstream major medical journals. They haven't contradicted really any of those things that came from a detailed systematic review of what was available originally at the end of the last century in the medical literature. That's where the program had its genesis.

George Jelinek (18m 11s):

The thing that 20 plus years on, the research continues to come out to support that and strengthen those pillars. I just find it amazing really to think back then there was enough there to be able to put a program like that together over 20 years ago, and then not to have it crumble, not perhaps a couple of big studies come out to say, "Look, there's nothing in the diet. The vitamin D connections are nonsense," or whatever. I've almost thought, "Well, one of those is going to come along and half expected it," and they haven't appeared in the literature.

George Jelinek (18m 54s):

I have to say, it's very reassuring for people who are on the program to know that. The science keeps getting better and better and there are better and better teams working on these larger and larger data sets from around the world. You can be reasonably confident if you're on the program, that the science is evolving to further support the OMS program.

Geoff Allix (19m 24s):

I think actually from my side, the neurologists are starting to come on board. Aaron Boster in the United States is a big proponent. He's been on the podcast a couple of times, and he's now involved in OMS, but just like my neurologists, five or six years ago, they were really unaware of lifestyle factors. Now, most of them have, at least, an awareness. Really, it's not rocket science in many ways - eat healthily, do some exercise, look after your mental health. This isn't a crazy thing that we're talking about.

Geoff Allix (20m 6s):

We still, technically in the UK, have dairy as a food group. You have to say to people on the whole like "Actually, no animal on earth has breast milk as an adult." They start thinking, "Yes, maybe it isn't that normal.

George Jelinek (20m 24s):

Yes, especially in other species.

Geoff Allix (20m 29s):

Yes, that's very weird indeed. Then you think, "Actually, yes, it isn't an odd thing you're doing. It's actually just a very healthy lifestyle." Actually, I've come across people with other autoimmune conditions like rheumatoid arthritis, Parkinson's, cancer, who've all had similar recommendations, not identical, but very, very similar. You're thinking if there are organizations in those areas, they're all saying, "Eat a largely plant-based whole food diet, do more exercise, and look after your mental health,"

Geoff Allix (21m 10s):

then there's definitely something in this too.

George Jelinek (21m 14s):

Yes, and I guess the other side of that is that you have to continually remind yourself that it's not a program that comes with any risk. It's a risk-free program. Even if the literature had been published to show that it wasn't particularly effective in MS, at the very least, you can be confident that you wouldn't get any of the other conditions like cardiovascular disease to the same extent. In an indirect sense, even if something did suggest it wasn't that helpful in MS, you know you're helping indirectly the course of MS by adopting that really healthy lifestyle.

Geoff Allix (21m 56s):

Yes. That's exactly what my neurologist said. In the first meeting, I presented the book and said, "What do you think?" He referred to it as the Jelinek method, I think he called it. He said, "Well, there's no proof that will do anything for MS," which I think they have to say really. They're in the national health service. They can't go off message. I think probably they might get into legal issues. There isn't proof. It's not a proof thing, is it? In fact, there are no proofs in medicine. I think you need mathematics to prove.

George Jelinek (22m 37s):

That's another podcast, isn't it? Let's discuss the concept of proof in medicine and I'll tell you, that's a very slippery topic.

Geoff Allix (22m 46s):

He said, "But it's going to lessen your risk of heart disease, cancer." He went through a whole long list of things so he said, "Ultimately, if you're happy to do it, then I would absolutely recommend you do it because it will just improve your health."

Sandra Neate (23m 2s):

I would be very happy if one day, they could make the leap and stop saying, there is no proof and say, "Look, there is a lot of evidence to support this lifestyle in many illnesses and go for it.”

George Jelinek (23m 16s):

Yes, and we're working on those as a charity. I think that's one of the next big challenges for the charity now that it's got a new board chair. I think a key aim is to work out a strategy for approaching the profession in a way that will keep them on side so that they feel comfortable recommending this kind of lifestyle. Actually, one of the things about this book is that it's the perfect thing for a doctor to hand one of their patients with MS because it just lays out the prescription so beautifully in such an easy way to follow that would save them an enormous amount of work trying to go through the explanation about the diet and so on.

George Jelinek (24m 8s):

It's all there. It's just such a handy little companion to adopting something like this in life.

Sandra Neate (24m 14s):

Would you recommend it more for newly diagnosed or is there a particular audience in mind?

George Jelinek (24m 22s):

I think it's anyone at any stage of the illness. We've been very deliberate in not just discussing the seven pillars of the program, but in broadening that very significantly. For instance, Rebecca Hoover from Minnesota talks about the issues around work discrimination for people with disability, what kind of options are open to them. Greg Herndon from Northern Ireland talks about disclosure, how, and when, and who to tell the diagnosis to. Rachael Hunter from is Swansea talking about resilience, which applies, of course, to any stage of the illness.

George Jelinek (25m 9s):

As Sandra said, Phil Startin got some amazing insights about the journey that people who have progressive forms of the disease and find themselves undertaking. We're very keen that this is a very inclusive, much broader-based book that deals with many of those issues that people might only be becoming aware of much later in the disease's course.

Sandra Neate (25m 33s):

Also, issues that are actually extremely common, such as pregnancy. The majority of people with MS are young women and rarely do they get the opportunity to talk about pregnancy, childbirth, and the neonatal period managing newborn babies and how to deal with families and relatives, and things like that. Things that are actually very common, but not commonly discussed. We hope that by broadening out from the seven pillars, there's some really useful information there, no matter what stage of the journey they're on and whether that's newly diagnosed, 25 years into the illness, or longer.

George Jelinek (26m 16s):

Sandra, from an NEU perspective, how does this new book add to the ways in which we're trying to advance lifestyle modification therapy for people with MS?

Sandra Neate (26m 33s):

Well, it's a highly valued publication and, in any research, the publication is what counts. George and me, because of our involvement in the book, we were awarded the Melbourne School of Population Global Health Engagement Award for the contribution that this made towards engagement with our MS community and, in their mind, with our research subjects from an academic perspective, it's highly valued that researchers engage with the participants in their research. They involve them at all stages of research, before research, during research, after research, report back to them.

Sandra Neate (27m 18s):

They love the way The NEU engages with the MS Community. They highly value that so that in itself is a really important contribution that the book has made to the unit. We are a very small unit. There's really, at the moment, only five of us and a couple of students, so a major publication like this is extremely important to the unit. Really, although the rest of the team weren't directly involved, all the subject matter is what we're involved with on a day-to-day basis in our research and the HOLISM study and all those sorts of things.

Sandra Neate (28m 0s):

It's a very important publication for the university. The university highly regards it, and the NEU has benefited from that.

George Jelinek (28m 10s):

To either of you, when is the book out and how do we get hold of it?

George Jelinek (28m 16s):

First of February 2022, so we're there now and in the year that it's being released. We've only got to wait another few more weeks. It's been really, simultaneously, in the UK, US, and Australasia. Really, as I say, in all good bookstores and all book websites. You can get it on Amazon, on Booktopia, all the usual places, and it'll be freely available soon. It's only available for pre-order at the moment.

Sandra Neate (28m 53s):

I think, actually, from when this podcast airs, I'd say it's out now. We're recording this a couple of weeks early.

Geoff Allix (29m 08s):

Sandra, are there any final thoughts or words of encouragement for the OMS community?

Geoff Allix (29m 14s):

Yes, always. We're working hard on lots of interesting projects. Did you mean from our research, from our unit's perspective?

Geoff Allix (29m 19s):

Yes. Just for the OMS community, is there anything upcoming? Is there anything that you think they should be doing? Just a final thought to the community.

Sandra Neate (29m 34s):

Well, we're engaging more and more with other collaborators around the world to enhance our research, and all the things that they're all doing, and to understand further the benefits of the OMS program. We're working on an online course that will be there in the future for their use once we've tested that and made sure that it's working well and that it’s effective in achieving what we hope it will achieve. That hopefully will be released around another year or so. It's a very slow process, all these things, but everything that we're doing is there to understand further and hopefully support all the efforts the OMS community is making to manage their own health.

Sandra Neate (30m 22s):

The more work we do, the more we understand that people who take control of their health, who feel the empowerment to make changes in their lives have improved mental and physical outcomes so there's no downside to this. We're just hoping to find more and more evidence that this is the case for the people in the program.

Geoff Allix (30m 52s):

George, one final question. Overcoming MS is celebrating its 10th anniversary this year in 2022. What is your anniversary wish for OMS?

George Jelinek (31m 03s):

Well, I think for me, what I always hoped was that we would ultimately reach the mainstream professional community so that if a person is diagnosed with MS, then, in the same conversation as the diagnosis, it offered a suite of things that they can do for themselves that are evidence-based and that they can adopt with confidence that their neurology team, their general practitioner, their MS nurse, that professional community is right behind them in the things they're doing for their own health. Twenty years ago, that seemed like a bit of a long, distant goal. It's still, possibly, some way off, but that's what I hope the OMS charity achieves over its next 10 years.

Geoff Allix (32m 0s):

Thank you very much, George and Sandra, for joining us on this episode to announce the publication of the Overcoming Multiple Sclerosis Handbook: A Roadmap to Good Health. We encourage everyone listening to read the book. Information on how to get it is available in the show notes. As George mentioned, it's available through all good booksellers. Thank you both for everything that you do to advance the mission of OMS and the benefits of lifestyle modification for all people with MS. I hope you both have a very happy 2022.

Sandra Neate (32m 42s):

Thanks, Geoff. Thank you. Thanks for having us. It's been a pleasure.

George Jelinek (32m 42s):

Thank a lot, Geoff. Great to talk to you again.

Geoff Allix (32m 43s):

Thank you. Thank you for listening to this episode of Living Well with MS.

Geoff Allix (33m 41s):

Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

View Details

Bio:

Vickie serves as the Ambassador of the OMS Circle in Connecticut. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2006. She lives well with her MS by following the OMS program and encourages others to do the same through her OMS Circle.

Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees. She recently completed a whole food plant-based certificate from eCornell and enjoys cooking new and delicious plant-based delicacies for her family and friends.

You can see more of Vickie on YouTube, where she shares her thoughts on living well with chronic illness.

Questions:

Welcome back to our podcast, Vickie, and thanks for joining us again. You were a guest on our second season discussing OMS Circles and community-building, which was great, but now we’d like to get to know you a bit better, as you’re a vital part of our growing global OMS community.
Can you please tell our audience a bit about yourself and your MS journey?
When did you discover OMS, and what was it like in the early days trying to follow the OMS program?
You’re currently serving as the ambassador of the OMS Circle in Connecticut. How is that going and how has having that community helped during the pandemic?
On another note, as of recently you’re also doing some work for the charity, tapping into your expertise running a virtual assistant business. Can you share a little about that?
What was it like crossing over from being a member of the community to actually working with the charity?
Outside of work, what are your passions and hobbies? I actually learned you have quite an interesting one concerning cameras and mushrooms. Do tell!
You’re also a passionate plant-based foodie, and just completed a special certification in that I believe. What can you impart to our listeners about any personal discoveries you’ve made delving into that rich culinary space?
Finally, and a bit of a tradition here on Coffee Break, are there any tips or pieces of advice from your own experience that you can share with those newer to the OMS program to help them on their journeys?
Thanks so much for joining us on this episode of Living Well with MS Coffee Break, Vickie. I hope you have a wonderful 2022!

Vickie’s Advice to New OMSers (in her own words):

Remember, change takes time, and it can be subtle! Since starting my journey with OMS over four years ago, I am still noticing small improvements, one of them being better balance.
Change can be difficult at the beginning, but your body and your habits will adjust. Keep trying to make progress with implementing the program and soon it will become part of your daily routine without thinking about it.
Sleep and stress reduction are two keys to living well with our MS. Don't forget, the OMS program is much more than a diet.

Some Tidbits About Vickie (in her own words):

Although many think I have restricted my diet, I have discovered since committing to being whole food plant-based that my diet has diversified considerably. With over 20,000 types of edible plants out there, I have a more diverse diet now than I ever did.
Since the pandemic hit, I discovered a love for walking in the woods and started a hobby of photographing wild mushrooms.
When I am not working or volunteering you can usually find me in the garden, cooking, or hanging out with husband, children, and grandchildren.

Links:

Vickie’s YouTube Channel
Learn more about OMS Circles

Coming up next:

On the next episode of Living Well with MS, premiering on February 9, we are honored to welcome back Professor George Jelinek, the founder of Overcoming MS, and Associate Professor Sandra Neate, the head of the Neuroepidemiology Unit (NEU) at the University of Melbourne. They’ll be discussing the release of the brand-new Overcoming Multiple Sclerosis Handbook, so this is a special episode you won’t want to miss!

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E46b Transcript

Coffee Break #27 with Vickie Hadge

Geoff Allix (10s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family made for people with multiple sclerosis interested in making healthy lifestyle choices and celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. You can check out our show notes for more information and useful links.

Geoff Allix (52s):

You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break. For this episode of the Living Well with MS Coffee Break, I'd like to welcome back Vickie Hadge. Vickie serves as the Ambassador of the OMS Circle in Connecticut, USA. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2011.

Geoff Allix (1m 33s):

She lives well with her MS by following the OMS program and encourages others to do so through her OMS Circle. Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees. She recently completed a whole-food plant-based certificate from eCornell and enjoys cooking new and delicious plant-based delicacies for her family and friends. Vickie, welcome back to the podcast, and thank you for joining us again. You were a guest on season two of the podcast, way back a couple of years ago, discussing OMS Circles and community building. Now, we'd like to get to know you a bit better as you're a vital part of the growing global OMS community.

Geoff Allix (2m 18s):

To start off with, could you tell our audience a bit about yourself and your MS Journey?

Vickie Hadge (2m 24s):

Thanks so much for having me back, Geoff. It's my pleasure. Sure, I live in Connecticut in the Northeast United States. I started my MS journey way back in 2006. I initially had some foot drop issues, but I wasn't diagnosed at that time. They really weren't sure. They wanted to keep an eye on me, but it definitely got my attention. I started paying closer attention to my health, eating more vegetarian, doing yoga, and meditating. This is all before OMS came into existence. Then back about 10 years later, I started having more symptoms and went back to the doctor and took about a year from that point to get diagnosed.

Vickie Hadge (3m 8s):

I was officially diagnosed in 2017 and I have been living well with MS since.

Geoff Allix (3m 18s):

When did you discover OMS?

Vickie Hadge (3m 21s):

Actually, I discovered it just prior to my diagnosis. I think like many MS patients, I had a feeling what my diagnosis would be. It was in the realm of discussion with the doctors as they're trying to figure out what was going on. I found OMS just prior to my diagnosis so when I got diagnosed, it was really easy to jump right in and start implementing changes into my diet lifestyle to make myself even healthier.

Geoff Allix (3m 50s):

You were already a vegetarian?

Vickie Hadge (3m 52s):

I was vegetarian when I started and had been for some time, but then when I looked into the research from OMS, all the evidence behind it, I switched over to completely vegan. Since then, I have gone over to whole food, plant-based so no more vegan junk food.

Geoff Allix (4m 10s):

Yes, I think that's a key thing, actually, the word whole food, because I've been an unhealthy vegetarian in the past. You can eat really junk food, can't you? There's stuff now that I don't know.

Vickie Hadge (4m 27s):

Yes, you can. All the chips, the crisps, the donuts, Oreo is making an all vegan cookie, but not very healthy.

Geoff Allix (4m 34s):

I don't know about you in the States, but probably the same. We've got the, I won't call them out, but the two leading manufacturers of burgers, let's say, now have vegan versions of the leading famous burgers. I'm fairly sure that they're not very healthy.

Vickie Hadge (4m 59s):

Yes, to be sure. Lots of chemicals, lots of artificial flavors, lots of not-so-healthy fats.

Geoff Allix (5m 11s):

Yes. You're currently serving as the Ambassador of the OMS Circle in Connecticut. Firstly, how is that and how has that helped? How have you managed that? The OMS Circles are regional communities of people following OMS. Obviously in the pandemic, that's been difficult because, traditionally, people would have met up and seen each other. How have you managed over the pandemic and how has having a community helped during the pandemic?

Vickie Hadge (5m 47s):

Excellent question. I think the pandemic caught us all off guard. We went into lockdown pretty quickly. Our group, initially, when the pandemic started, I think, we really wanted to stay in touch with each other. We were very concerned about what was going on and what was happening in the world, especially since we had pre-existing conditions. When the pandemic lockdown started, we started with weekly meetings, whereas previously, we were doing monthly meetings. We did weekly meetings via Zoom. Everybody's an expert in Zoom now. It was really helpful for the entire group, me included, to talk about what was happening with the pandemic, our concerns with our conditions, and maybe the disease-modifying treatments that we are on.

Vickie Hadge (6m 36s):

It was really helpful to have that connection with other OMSers and have that support. We've since gone down to monthly meetings again, and also, still really important, we're still meeting via Zoom. We still like to connect with each other, but we did have some fun this summer where we were able to meet outside when it was safe. We had some really nice meetings outside. One was at a local vineyard. They had live music and we brought healthy snacks to share with one another. It was really great to see everybody face-to-face during the outside meetings.

Geoff Allix (7m 11s):

Well, yes. We have one coming up actually where I live. The MS center is doing a tryout for their oxygen therapy and the OMS Circle works at the MS center. She said they're already set up for socially distance, COVID safe, and everything so we're actually going to have a few of us go there, but it is strange. There are quite a lot of people in my Circle who I've never physically met, but we have a really active WhatsApp group, and we chat a lot. I think we communicate an awful lot more because it's virtual than we did before where we met maybe monthly physically.

Geoff Allix (7m 54s):

Now, we actually have daily chats happening and it's quite active. It's actually increased our communication rather than decreased.

Vickie Hadge (8m 3s):

That's wonderful.

Geoff Allix (8m 4s):

The other thing that has changed is that you now do some work for the OMS charity going from your work as being a virtual assistant. Could you share some information about that?

Vickie Hadge (8m 20s):

Sure. I've been a virtual assistant for almost 20 years. I have been working virtually long before the pandemic. I started working with OMS this year, and I'm very excited to be part of the team. I'm providing some support directly to Grazina Berry, the CEO, and Dowshan Humzah, who is the new chair of the board. It's really exciting to help them with the plans coming up for 2022 and the 10-year anniversary of OMS. I also work within the broader team. I help support meetings and do documentation. It's really exciting to work with them.

Vickie Hadge (9m 3s):

This is a whole other new community.

Geoff Allix (9m 6s):

You already are a member of the community, but now you're both members of the community and working there as well. How has that changed?

Vickie Hadge (9m 15s):

Yes, it's been pretty exciting. It's like looking behind the curtain and seeing the inner workings. I have to say, before I started working with OMS, how impressed I was with the organization, and now, being on the inside, seeing how it all comes together, and seeing all the people that it takes to make this happen, their dedication, the planning, and the supports that they put in place for OMSers is just wonderful. It's so nice to see a team working together, celebrating living well with MS, and doing what it takes to live well with MS.

Geoff Allix (9m 58s):

I've met quite a lot of the people before during the podcast who became more involved. You could easily just think that OMS has a new book every few years and does some retreats. Really, is there anything else going on? Then you realize there is an awful lot. All the research and there's communication with different health bodies in different countries. There are huge amounts going on.

Vickie Hadge (10m 25s):

Yes. I know that this year they're starting to work with healthcare providers and working directly with the healthcare providers to get more information out there. It's exciting to see the changes that are coming and all the programs that they're implementing coming up.

Geoff Allix (10m 46s):

Outside of work, could you give us a bit more of an insight about who you are by talking a little bit about your passions and hobbies?

Vickie Hadge (10m 55s):

Sure. I live at home with my husband, and I have two grown children and two grandchildren. The pandemic has changed our lives like everybody’s a lot. One of the things that we changed during the pandemic is we've been hiking and taking walks in the woods a lot more this year. It's really added a lot to stress reduction in my life, and I just love being out there in the woods. I have found a fascination with mushrooms. I have noticed them on my walks, and I started photographing them with my phone. It is amazing the variety of mushrooms and now I'm almost drawn to them every time we go out for a walk.

Vickie Hadge (11m 39s):

They come in all different shapes, colors, and sizes. I have taken pictures of purple mushrooms, black mushrooms, and orange mushrooms. They're just fascinating. I started researching a little bit about them. They're not an animal and they're not a vegetable. They're their own classification. I just find them fascinating and fun. That's one of the benefits of the pandemic and changes in our life this past couple of years.

Geoff Allix (12m 7s):

Yes. I'm incredibly thankful that I live in a rural area. I can't imagine if we moved from the middle of London to a very rural area many years ago, 17 or 19 years ago. If we'd still been in London with all lockdowns, I think we really would have been stuck inside an apartment and being somewhere rural where you can go out and about in lockdown. It was really nice, so I feel sorry for the people who are in cities, apologies, but it's all improving, hopefully.

Geoff Allix (12m 51s):

You mentioned mushrooms. You're a passionate food lover and you've just completed a special certification. What could you tell our listeners about personal discoveries that you've made learning about food, specifically, OMS-compliant food?

Vickie Hadge (13m 10s):

Sure, yes. I decided to really focus on plant based when I started OMS because I was vegetarian before. Recently, I got a certificate in plant-based nutrition from eCornell, and I learned so much. As we were discussing earlier, vegan food can be healthier or not healthy. Everything that we consume is going to contribute to our health or lack thereof, and I learned so much about nutrition and getting the most nutrient-dense foods that I could into my diet. In learning that, I also became a little braver in the kitchen. I have learned to experiment a lot more with foods and combining foods, and maybe going off the recipe a little bit saying, "Hey, this would be a lot better if I added some dark leafy greens to it so I could up the nutritional content."

Vickie Hadge (14m 4s):

I even eat my oatmeal with greens now. I've put greens and marinara sauce on my oatmeal and it's a really nice savory breakfast as opposed to a sweet breakfast.

Geoff Allix (14m 19s):

Could you give our listeners a tip then of how they could improve their diet?

Vickie Hadge (14m 26s):

Yes. One tip is dark leafy greens. They are the most nutrient-dense foods that we can consume. I try to do it at least three times a day. I mentioned the oatmeal. You can do fruit smoothies, have salad. Add greens to anything that you're cooking, whether it's a super stew or a sauce. Dark green leafy vegetables also include the vegetables like broccoli and broccoli sprouts. Broccoli sprouts are the most nutrient-dense food that we can eat. If you like sprouts, eat broccoli sprouts. Also, focus on omega-3 rich foods. OMS lets us know that it's important to have that good balance of omega 3s to omega 6 fats in our diet.

Vickie Hadge (15m 15s):

There are a lot of omega-3 rich foods like Brussel sprouts, walnuts, broccoli, kidney beans, wild rice, flax seeds, chia seeds, and hemp hearts. Sprinkle some chia seeds in your smoothie or have some hemp hearts on your salads. They're really nutrition powerhouses.

Geoff Allix (15m 33s):

Another thing asking for a bit of advice, we have a tradition on the Coffee Break to ask if there's any advice from your experience that you could give, particularly to people who are new to following OMS that would help them start their OMS journey?

Vickie Hadge (15m 50s):

Yes, I think one of the important things is to start where you are. Right where you are. "Here I am. I'm going to make steps today to make changes, to recommit to living well." I think we're just into the new year now as we're recording this, and this is a great time to do some self-evaluation. "Where are you on your seven steps of the program and where can you make tweaks to adjust maybe a little?” Add some more dark green leafies, get rid of the processed foods. Focus a bit more on maybe stress reduction, adding daily meditation or walking meditation.

Vickie Hadge (16m 29s):

We talked about walking and how relaxing that can be and stress reducing that can be. Another thing is don't expect changes in one week. This is going to take a long time. I think Dr. Jelinek said, "Envision it as a large boat. You can't turn it around on a dime. It's going to be slow to turn. Once it turns and gets through that turn, it can take off in a new direction." Stick with the program, keep making changes, and look for support on the OMS website and through OMS Circles.

Geoff Allix (17m 8s):

I think that's the problem, isn't it? We've become accustomed as a society to instant things. You have a headache; you take a tablet and then it goes away. Even to the point now, my kids hate it if there's something that comes out weekly on television, which is rarer and rarer but there are still some things on Netflix that are released weekly. They can't believe that this is how we used to watch television. They're like, "What? You waited a week between episodes?" "Yes, that's what happened because it was on schedule." Now, everything's instant. I think that's the problem with healthcare is that people just expect that I take a tablet, or I have a treatment, and then that's it.

Geoff Allix (17m 49s):

It will instantly make a change. When you say, "Well, this could be six months, at least, maybe even a couple of years for you to get better," then they start to lose faith and they think, "Well, I tried it for two months. It didn't really do anything."

Vickie Hadge (18m 6s):

Right, exactly. It does take time. I try to think of it as building muscles in the gym. If I go to the gym once and lift weights, I don't have big muscles, but if I go consistently and work at it and try a little bit harder each time, then the muscles will come, and it takes time.

Geoff Allix (18m 21s):

Yes. Okay, thank you very much for that. Thank you so much for joining us on this episode of Living Well with MS Coffee Break. I hope that you have a wonderful 2022.

Vickie Hadge (18m 28s):

Thank you. My pleasure. I hope you have a great year as well.

Geoff Allix (19m 28s):

View Details

Happy 2022 and welcome to the premiere episode of Living Well with MS. We are thrilled to launch the 4th season of our podcast with a very special episode celebrating the 10th anniversary of the Overcoming MS charity. What better way to mark the occasion, and the start of a hopeful new year, than an in-depth conversation with OMS CEO Grazina Berry. Since assuming leadership of the organization almost 18 months ago, Grazina has led a transformation that has been focused on strengthening Overcoming MS’s ties with its community, health care professionals, and the MS community at large. In this episode, we will learn about the exciting changes that lie ahead as OMS cements its place as the world’s leading MS lifestyle charity.

Bio:

Grazina Berry joined Overcoming MS in July 2020 as CEO. She has had an extensive career, as a senior and board executive, in the public and not-for-profit sectors.

Grazina is passionate, driven and committed to making a positive difference to the lives of all communities and helping OMS achieve its vision – that every person with MS is empowered to take control of their lives, is making informed lifestyle choices and can lead a full and healthy life.

Over the last year and a half, Grazina has been working tirelessly with the OMS community, the team, trustees, and partner organizations to implement OMS’s new strategy, focused on informing, supporting and empowering people with MS and their families to lead healthy lives. A collaborator at heart, Grazina is a firm believer in working in partnership with people with MS, their families, professionals, and other MS focused organizations, so we can learn from one another, adapt to the ever-changing and complex world around us, and create long-lasting impact, together.

Intro:

Happy 2022 and welcome to the premiere of the 4th season of Living Well with MS, the podcast from the world’s leading MS healthy lifestyle charity. This is our season opener and 77th episode to date, and to mark the occasion we are proud to welcome back the Chief Executive of Overcoming MS, Grazina Berry. Thanks for being on the program again, Grazina.

Questions:

Our 4th season is just one of the milestones that Overcoming MS is marking this year. Most notably, it is the organization’s 10th anniversary. What kind of birthday party are you planning to celebrate a decade of helping people with MS live healthier and better lives?
In your view, how has OMS evolved over the past decade?
As CEO, what are some of the key initiatives that you’re introducing or have introduced to align with the organization’s 10-year anniversary? And in the vein, what might be some of the specific banner projects OMS will be rolling out this year?
If OMS was a person and disposed to making new year’s resolutions, what would its resolutions be?
How have you seen the MS landscape, and more broadly the holistic health and healthy lifestyle space, change over the years? Has it evolved for the better, worse, or neutral?
How has OMS kept pace with some of the changes in the MS landscape you’ve noted?
What are your most important considerations in leading OMS into its next decade?
What are some of the challenges you feel lie ahead?
How do you feel OMS has changed as the result of the deeply impacted, particularly from the physical and mental health perspectives, post-Covid world?
How do you feel OMS is making deeper inroads into its community, strengthening its ties with them as well as their ties with each other?
If there is one thing you can choose to etch as OMS’s legacy for the next decade, what would it be?
And finally, what are you personally most excited about for the year ahead?

Links:

About Grazina Berry

About Overcoming MS

OMS 2021-23 Strategy

New! OMS Advocacy

Coming up next:

Please join us on January 24 for the season premiere of Living Well with MS Coffee Break, our podcast series dedicated to the voices and stories of our diverse global community. In Coffee Break #27, meet Vickie Hadge, the Ambassador of the OMS Circle in Connecticut. Vickie is an avid plant-based foodie and speaks about her experiences living well with chronic illness on YouTube. We hope you can drop in and get to know her!

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

S4E46 Transcript

Happy 10th Anniversary, OMS! A Look at What Lies Ahead with OMS CEO Grazina Berry

Geoff Allix (1s):

Welcome to Living Well with MS, the podcast from Overcoming MS, a healthy lifestyle charity celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast or on whichever podcast platform you used to tune in to our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast.

Geoff Allix (47s):

Have questions or ideas to share? Email us at podcast@overcomingms.org or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. Happy 2022, and welcome to the premiere episode of Living Well with MS. We're thrilled to launch the fourth season of our podcast with a very special episode, celebrating the 10th anniversary of the Overcoming MS charity. What better way to mark the occasion and start on a hopeful new year than an in-depth conversation with OMS CEO, Grazina Berry.

Geoff Allix (1m 32s):

Since assuming leadership of the organization almost 18 months ago, Grazina has led a transformation that has focused on strengthening Overcoming MS's ties with its community, health care professionals, and the MS community at large. In this episode, we will learn about the exciting changes that lie ahead as OMS cements its place as the world's leading MS lifestyle charity. Welcome to the premiere of the fourth season of the Living Well with MS podcast from the world's leading MS Healthy lifestyle charity. This is our season opener and 77th episode to date. To mark the occasion, we are proud to welcome back the Chief Executive of Overcoming MS, Grazina Berry. Thanks for being on the program again, Grazina.

Grazina Berry (2m 12s):

Hi, Geoff. Thank you for having me back. I must have got something right the first time as you invited me to come back again.

Geoff Allix (2m 22s):

I'm glad to have you back. Our fourth season is just one of the milestones Overcoming MS is marking this year, and the biggest one, most notable is the organization's 10th anniversary. What kind of birthday party are you planning to celebrate a decade of helping people with MS live healthier and better lives? Probably would be socially distanced in the UK.

Grazina Berry (2m 52s):

That's fine. Definitely. Well, first of all, congrats to you, Geoff, as well, being the podcast host for our fourth season. That's a celebration as well.

Geoff Allix (3m 5s):

I can't believe it's been this long.

Grazina Berry (3m 8s):

I know, but indeed, bearing in mind all the upheaval and uncertainty around us, especially over the last two years, I think we could all do with a little party, couldn't we? The thing about the 10th, 10 is such a big number, isn't it? If I imagined this party, it would have to be one that is really filled with fun, pride, enjoyment, lots of reflections over the standout moments, maybe a few tears here and there, giggles, raise a glass or two, and I think to do the anniversary and all the achievements of the organization over the last 10 years justice.

Grazina Berry (3m 52s):

We should probably have done parties. I think that's doable by technology, isn't it? We'd like to celebrate with our community who've helped us get to where we are and we'll be looking to unveil the plans in the new year, wanting that to be an element of surprise as well. The listeners and you, Geoff, will just have to watch the space.

Geoff Allix (4m 16s):

In your view, what's happened in the last 10 years? How has OMS evolved over the past decade?

Grazina Berry (4m 26s):

Wow, that is a massive question, really. I think to answer it in the best possible way, to do all the achievements justice, I think we should try and jump into that time machine, go back to the beginning, and reflect on some of those standout moments of which the very first one has to be 2012. The fundamental starting point when the charity began, established by the amazing Linda Bloom, working very closely with Professor George Jelinek and Gary McMahon, the CEO at the time. That was the humble beginning in Australia.

Grazina Berry (5m 8s):

Then in 2013, the charity started distributing the OMS books for free in the UK and held the very first UK conference. I suppose these kinds of events focused on information, very much marked the next couple of years, 2014 in particular. 2014 is worth a bit of a pause as well because we started funding open-access research projects at the neuroepidemiology unit at the University of Melbourne. Then 2015 and 2016 were also really, really important because we began to define our focus internationally.

Grazina Berry (5m 52s):

We registered as a charity in Australia in the US in 2015. We really went all out organizing residential retreats. Geoff, I believe you've been to one of these immersive, multi-day experiences connecting people with one another, beginning to build communities, but also informing them about the OMS program.

Geoff Allix (6m 20s):

Yes, I did. A quite transformative thing going to an OMS retreat, but, obviously, they had to stop because of COVID. Also, I'm guessing there are issues with scalability as well.

Grazina Berry (6m 32s):

Yes, absolutely.

Geoff Allix (6m 33s):

It's not going to be for thousands of people at each one.

Grazina Berry (6m 36s):

Unfortunately. I wish they could be, but alas, they can't. However, perhaps later, when we come to talking about plans for the future, I can share with you some of the ideas that we're actively developing and pursuing for reimagining those important events. Back into the time machine, in 2016, I wanted to mention as well because OMS went to the US to raise awareness of the organization and the program, visiting three cities, Boston, New York, and Los Angeles. Then 2017 and 2018, again, quite a lot of events.

Grazina Berry (7m 15s):

There was one in Northern Ireland. There were a few retreats in Wales, actually, and Australia. Very importantly, that's the year when we launched Overcoming MS Circles. Twenty, I believe. We had 20 in 2018, and these are volunteer-led community support groups. Really important in terms of grassroots activism in those early days, but also connecting people. 2019, another memorable year. UK conference in Edinburgh followed by a high-profile event at the House of Commons in London, and importantly, Geoff, the much-loved podcast began.

Grazina Berry (8m 12s):

2019, a really important year. Then we went into turmoil, complex year, I would say. 2020, of course, the pandemic hit. We started to change program and the organization with Gary stepping down and my arrival. Then 2021, again, the pandemic isn't over and it's still causing havoc, but that's the year that marked our new three-year strategy publication in March and growth in our community to 94 circles that we have today, our online platform, but also growing the strength of our community voice.

Grazina Berry (8m 57s):

Really, going back to your question, Geoff, about evolution, I think you'll notice that the charity started by the immense focus on raising awareness, spreading the word, about the pioneering work of Professor Jelinek. A lot of effort went into high-profile raising events. We then started working more deeply with people through retreats, and as you said, from your own personal experience, impacting them really profoundly, but the numbers were quite small, and they were pretty costly to deliver. Gradually, we've started to think about scale and how technology could help us reach more people.

Grazina Berry (9m 41s):

My arrival, as I reflect on it, marked a crossroads point at the charity. I led a broad review exercise speaking with the community, trustees, and the founders, of course, the team, lots of other MS organizations, partners, healthcare professionals, looking at whatever data we could really get hold of. Where is MS prevalence heading, for example, and then sadly it’s heading north, isn't it? It's rising. Through all of this, we realized three really important things. One was that awareness alone is not enough to enable or motivate people to change their lifestyle by adopting the OMS program to the extent that those changes really stick and do so at scale.

Grazina Berry (10m 30s):

We also realized that we need to hold people's hands and support them to become much more attuned to what they need in the contexts in which they live. A one size fits all approach really would not work. Third, we cannot achieve impact at scale by doing it alone. We need to work with healthcare professionals and other organizations. As a result of all this evaluation, the new strategy came to be that has begun that shift to combine awareness alongside some fundamental organizational developments really across our four goals - inform, support, empower, and collaborate.

Geoff Allix (11m 18s):

You hinted that there are some new things in the pipeline. Is there anything you could give us a hint of? What are some of the key initiatives you're introducing? Could you give us a hint at some of the banner projects that might be rolled out this year?

Grazina Berry (11m 38s):

Yes, it's going to be a bumper year, Geoff. I can assure you of that. Of course, marked with celebrating the events throughout the year, so perhaps not a big bang. This is the term of a birthday party. Lots of things happening throughout the year and we will be unveiling some really exciting initiatives, and possibly those virtual parties. I can mention a few things without spoiling the surprise that I know the team would be happy for me to share. I think, really importantly, we'll be celebrating the publication of the OMS Handbook in February.

Grazina Berry (12m 18s):

This is the new book co-edited by Professor George Jelinek, Dr. Sandra Neate and Dr. Michelle Donaghy with multiple authors adding their voices. Please pre-order your copy not to miss out. You can do it now. We'll also be refreshing our brand with very generous pro bono support from the fantastic team at JMA in Australia. Geoff, thank you for your contributions to helping us review the brand alongside other ambassadors. This has been a really insightful exercise to do. One of the reasons why we are refreshing is that we aligned ourselves much more closely to our values being inclusive, empowering, community-focused, evidence-based, collaborative, and dynamic, but of course, none of us are naive to expect that brand alone would help us to achieve that.

Grazina Berry (13m 12s):

This is important because we wish to present a really professional front to our broader audiences, including and especially, healthcare professionals. We will also be ramping up our advocacy initiatives and our work with healthcare professionals. We will be updating our existing information resources and developing new ones, as well as beginning campaigns. We will be looking to bring back events. I know we've got so many people in our community who are really, really excited about this and need more face-to-face interactions. We are hoping to trial a new immersive experience of supporting people with MS.

Grazina Berry (13m 59s):

Taking what was wonderful from the retreats, combining a face-to-face workshop with digital resources to inform, support, and empower people to embrace fully the OMS program. We also want to really boost our community engagement and support our ambassadors and circles by investing in additional resources. We will be rolling out, as a bit of a spin-off, a webinar program that is with Dr. Aaron Boster, having piloted the first episode recently, and that's been incredibly well-received. We were absolutely overwhelmed with questions that people had.

Grazina Berry (14m 45s):

We want to launch webinars series alongside the more mainstream webinars series. Also importantly, we'll be starting to tangibly shape our plans in the US. As you can see, Geoff, there is lots and lots to keep us very busy in 2022.

Geoff Allix (15m 7s):

All right. If OMS was a person and it made new year's resolutions, what would the OMS' resolutions for the new year be?

Grazina Berry (15m 15s):

I don't know. This is interesting because personally, I tend not to make resolutions, but if I put myself out of this mix, I think probably the most important one would be, be kind to yourself, make more time to listen to your body, look after your body and mind, make time for you. I think all of us are so guilty of not doing that, but alongside this, I think what's really key as well is to show empathy to others, welcome people to the community, openly, supportively, and without judgment.

Grazina Berry (15m 56s):

Finally, I would say stick with it. The path of multiple sclerosis is so uncertain for many people but knowing that you're doing all that you can to live well, may that be your driving force, and especially when you have those darker moments, which are probably inevitable, especially in the world that we live in, where uncertainty just keeps on giving and keeps on challenging us.

Geoff Allix (16m 29s):

Over time, how have you seen the MS landscape change specifically and also the focus on healthy lifestyle? In a broader sense, bringing a healthy lifestyle, holistic health, how have you seen that change over the years? Did that improve, get worse, or stay the same?

Grazina Berry (16m 48s):

Goodness, that is another huge question. What I would like to do is just latch onto that number 10, which is peppering our conversation today and, again, reflecting a little bit. Ten years ago, I was working in a mental health organization, a fantastic organization called Richmond Fellowship, that provides a really wide range of community-based mental health services. What I was seeing back then, and we actively practiced, was seeing each individual that came through the door of our services, we saw them as a whole, not a label or a diagnosis.

Grazina Berry (17m 31s):

We took the time to really understand them so that we could address the cause of their distress and mental health challenges. Peer support was already widely used to enable people to help each other, essentially by sharing their experiences, and the mind-body connection was at the forefront. This is 10 years ago. I saw a very similar picture then when I moved to rare illness, cancer space, and other disease areas, actually. We could see already, especially high disease, diabetes, and others.

Grazina Berry (18m 11s):

They were all embracing a healthy lifestyle, and more broadly actually, the World Health Organization had been championing a more realistic, personal health management, with encouraging clinicians to look at physical, mental, emotional, and social elements for years. There's been a lot of very positive development happening for years. When I landed in neurology, in multiple sclerosis, I thought actually, Neurology MS Services does have some catching up to do here, but saying that, I think the tide has really been turning and 2015, the throwback to Overcoming MS, that was an interesting year, as we talked earlier, around our international expansion.

Grazina Berry (18m 57s):

2015 was also a very interesting year here in the UK. It was interesting because there was this really significant shift happening in the thinking about the treatment of people with MS, so professors from England, alongside a number of international experts, led a really significant research project called Brain Health, Time Matters in MS.

Grazina Berry (19m 37s):

That examined the various impacts on the MS personal economy. They also explored current practices and diagnosis, treatment, and what the barriers to accessing these might be. The study then emphasized the need for a much faster diagnosis of disease activity. One of the standard recommendations was to start treatment early with disease-modifying treatment, and, I really want to emphasize, lifestyle measures whilst ensuring that decisions about the treatment are shared between the patient and condition. If we look at the National Health Service in the UK now, this long-term plan really supports preventive practice and personalized holistic care that Overcoming MS is all about.

Grazina Berry (20m 31s):

What we've got now, we've got health and wellbeing coaches, we've got social workers, care coordinators. We can really see that things are changing for the better, and this is incredibly helpful for our cause, Overcoming MS. We need to be able to harness all these positive developments and align ourselves more closely with the changing healthcare systems. We've got this fantastic OMS program, which provides a very practical framework to enable people with MS to effectively self-manage the condition and take control. I think this really taps that prevention agenda.

Grazina Berry (21m 12s):

We need to really begin to own this space as an organization, as a charity.

Geoff Allix (21m 23s):

How has OMS kept pace with the changes that you've seen in the MS landscape?

Grazina Berry (21m 30s):

Yes, so mentioning Brain Health, Time Matter in MS, there was a campaign launched on the back of it. Overcoming MS signed up to support that initiative alongside other MS organizations. That group of organizations is really vast. It's not just those MS charities in the UK that we all know about, but also other organizations internationally, the National MS Society in the US and others. We've also acknowledged, as an organization, the need to engage with and influence healthcare systems. That's very much in our new strategy, new plans.

Grazina Berry (22m 11s):

We joined the Neurological Alliance in 2020 so that we could be part of a collective group of organizations focused on influencing policy, sharing best practices, learning from each other. We've also connected with neurologists, MS nurses, and other MS charities through the MS Academy here in England. We've contributed, very recently, to a piece of work that explored co-morbidity, so those other illnesses that people with MS are quite likely to have.

Grazina Berry (22m 51s):

For example, depression, diabetes, hypertension, and others. We've also looked at inpatient admissions, especially emergency admissions to hospitals, and the associated costs in patients with MS based on that socioeconomic status across four very specific geographical areas or integrated care systems in England. All this work resulted in a poster called the Wellbeing Gap, One Size MS Service Does Not Fit All. This was presented at the most recent Congress of the European Committee for Treatment and Research in MS, ECTRIMS, as it's known across the sector. We're really trying to keep pace with all these developments more than ever before, recognizing that we cannot achieve our ambitions of the end game without tapping the healthcare system and working with others.

Geoff Allix (23m 47s):

We look back over the last 10 years, but if you look forward, what do you think are some of the important considerations leading OMS into the next decade?

Grazina Berry (24m 5s):

Wow. We have just stopped talking of the last 10 years now. I wonder what's next. A great question. The first, most important consideration has to be all about people, Geoff, and actually, it's quite an internal consideration, the team, the Overcoming MS team and our volunteers. I'm really fortunate to be working with a group of people who really care about work, who are resilient and passionate. It's going to be so important to make sure that they also feel supported and empowered to do their work, building connections with our community, and really taking pride in what we achieve.

Grazina Berry (24m 48s):

It'll also be really important to make sure that they're able to keep hold of that intrinsic motivation that keeps them going. Really articulately described by a guy called Sharath Jeevan in his book called Intrinsic that I can't recommend highly enough for people. Another important consideration would be not being afraid to try new things, projects, approaches, not being afraid to change course, but also, being brave about making tough choices and walking away from things that perhaps don't work so well and just do not have the impact that we seek. Saying that, it will be really key for us to be more vocal and clear about our unique selling point, our USP, being the OMS program, and making sure that it also keeps pace with research developments.

Grazina Berry (25m 43s):

We will be establishing a new research advisory group, which is a very exciting development. This group will be led by Dr. Aaron Boster, a neurologist from the US who has that research and healthcare brief. The final consideration, but I'm sure there'll be many more, that being an open-minded organization that really welcomes and embraces new opportunities, tries out partnering with others, and collaborating more, especially with other MS organizations and healthcare systems. This will be very exciting as we begin to focus on expanding and scaling in other geographies, particularly the US, but really exploring those areas where the MS problem is the biggest because they need programs such as ours the most.

Geoff Allix (26m 38s):

What challenges do you see lying ahead in the future?

Grazina Berry (26m 44s):

Indeed. It's not going to be a breeze, is it? To do all these things and especially really crack and tap into healthcare systems, I think there'll be quite a few. Again, because I think the world is so uncertain, there'll be so many changes happening. We'll just have to make sure we are fleet of foot and we're nimble, able to really respond well. The first one I would single out is the fact that community needs and expectations will continue to change and evolve in line with the world that's around us. That's always moving, never stopping. We need to be really responsive to their needs. This will be both a challenge and an opportunity, of course, because we can then try new ideas and ways of working while also retaining our core and what we're about.

Grazina Berry (27m 40s):

Another challenge linked to this will be digital fatigue. Technology, as we know, is a really powerful tool. It enabled us, as a charity, to carry on our virtual outreach through the pandemic, but it won't work or be accessible for everyone. We need to make sure that we develop face-to-face opportunities as well. Being a small charity with lots of ambition, we are so mindful that fundraising remains challenging and will continue being so because there are so many great causes out there, and especially in the MS space, competing for the same pots of money, the evidence of our impact as a charity will be really, really important.

Grazina Berry (28m 27s):

Another key challenge is, of course, the pandemic. You probably picked me up on this, Geoff, if I didn't mention the pandemic. I think the pandemic, amongst many other challenges, has really deepened inequalities, those pre-existing inequalities leading to greater unemployment, swelling waiting lists for treatments made those socio-economic circumstances in which people live much more challenging. Well, this really stresses the need for our work, to champion the OMS program, which gives people the tools to live well with MS. As an organization, we need to be so much more attuned to the world around us.

Grazina Berry (29m 7s):

This is not easy for a small organization with global reach and global ambitions, and alongside this, and very much linked to the pandemic, but we probably all know that healthcare systems have been struggling, not just in the UK, but also in the US and in other areas before the pandemic, but especially now, we can really see how stressed those systems are with massive waiting lists, backlogs of cases, staff burnout. This is a challenge for us as we try to ramp up engagement with influencing healthcare professionals. It really emphasizes the need for us to develop programs that help relieve those stresses.

Grazina Berry (29m 53s):

We have to come up with some very practical solutions that, for example, that the National Health Service can adopt fairly easily. Again, a tough challenge, but I think, game on.

Geoff Allix (30m 9s):

How do you feel OMS is connecting, making inroads with the community, and strengthening its ties with the community and the community ties with each other?

Grazina Berry (30m 23s):

I think that's a really great question because the community is clearly at the forefront of everything that we do and why we exist as a charity. I would really like to mention and plug a little bit, our very first community engagement survey that we conducted over the summer in August 2021. I want to thank everyone who took the time to answer its 61 questions. It wasn't a slim survey. It was pretty comprehensive, but that survey has given us so many insights into the lives of people with MS and how OMS can support them better. It told us, for example, that 54% of people with MS will not be discussing a healthy lifestyle with their physician.

Grazina Berry (31m 7s):

While this may be a result of lots of reasons, we talked about some of them earlier, including the gap in the neurologist curriculum around healthy lifestyle approaches and holistic care, shortages, lack of time, but now more than ever, people need support and advice about stress management, healthy diet, great amounts of vitamin D. This survey is really important for us because it's helping us build a much better understanding of who our community are, where they live, how they interact with the OMS program in real life, what are some of those barriers to changing their diets, moving more, and what can they expect from us as a charity?

Grazina Berry (31m 50s):

We are in a really good position, I feel, to improve what we do aligned with our community needs - what they need and what they want. I think what we're also doing is we're building much stronger foundations and grassroots levels through our circles program and we'll look to grow. Again, let's throwback to 2018, we had 20 circles. We now have 94 in 26 countries worldwide. We have 100 ambassadors to lead these really important community peer support groups, and alongside, we also need to offer our volunteer ambassadors the support that they need.

Grazina Berry (32m 35s):

That's really important. Our grassroots advocacy initiative that I mentioned earlier, we started with brilliant leadership by Professor Helen Rees Leahy and Allie Marwick, our advocacy trustees. It's really crucial too to strengthen connections between individuals and across the community, but also, and really importantly, with healthcare professionals so that people with MS can feel confident to really adopt healthy lifestyles. People can raise the need for healthy lifestyle conversations with health care professionals during appointments, so I believe we're making great progress, but there's a lot more work that we need to do, which is great.

Grazina Berry (33m 18s):

That's why we're here.

Geoff Allix (33m 23s):

If there's one thing that you could put down as OMS’s legacy for the next decade, what would that key thing be?

Grazina Berry (33m 31s):

Gosh, I always struggle with those questions. I say pinpoint one thing, because there's never just one thing. I'm going to try and say three things, Geoff, if I may.

Geoff Allix (33m 42s):

Okay, fair enough.

Grazina Berry (33m 44s):

Three things. Well, I think the main one, maybe, it sums up, the head of all the others, is we make it into the mainstream. We are definitely there alongside medical treatments, and we are recommended to every person being diagnosed with MS. Finally, we are regarded as the thought and practice leaders in healthy lifestyle in a massive space. I think these would be really key things for us to get to, this end-game scenario for the next decade.

Geoff Allix (34m 23s):

Yes. It would be fantastic if people, by default, heard about lifestyle when they're having that first conversation with a neurologist.

Grazina Berry (34m 34s):

Absolutely.

Geoff Allix (34m 34s):

It shouldn't be something some people find out about.

Grazina Berry (34m 38s):

Google at the moment.

Geoff Allix (34m 38s):

Yes. Well, there's a difference between the digital divide. I think most people who are following OMS are tech-savvy enough. They have access to computers, but if it was more widely available and it isn't in some places. In some places, some neurologists hand out brochures for OMS, but that's certainly not widespread.

Grazina Berry (35m 3s):

They do. It's not wide, but I think you're absolutely right to mention that, Geoff, because actually, some people will be handed the OMS book. Just reflecting a little bit on some of the achievements this year, we've actually presented to hospitals here to teams of MS nurses and neurologists. As a result of that, we've had this bumper order for free OMS books so they can then hand out to their patients at the point of diagnosis or in following appointments, which I thought was incredibly encouraging, certainly, as we prepared for 2022.

Grazina Berry (35m 43s):

What we also know through the survey that we've just talked about is that, I believe, in only 8% of cases, the OMS program will be discussed by the healthcare professionals and recommended, signposting people to us. Only 8%, which, okay, is a low number, but for me, that is a huge opportunity to really shift that number over the next year.

Geoff Allix (36m 8s):

I would say, when I was diagnosed in 2015, at the time, it wasn't 8%, then I wouldn't have thought. I think it's gone up to 8% so it's heading in the right direction at this. That's a good thing.

Grazina Berry (36m 27s):

Definitely, thank you.

Geoff Allix (36m 28s):

Finally, what would you personally be most excited about for the year ahead?

Grazina Berry (36m 34s):

Lots of things to be excited about for 2022, alongside those 10th birthday parties that we'll all be looking forward to. I'm really excited about getting out there and building deeper connections with the MS community. Of course, I have to caveat that pandemic allowing, restrictions allowing, but still absolutely build those deeper, meaningful connections with our community groups. I'm also really excited about leading our healthcare professionals' engagement plans to fruition. Actually, it feels like, with the bigger and more diverse board of trustees that we now have, with a full team in place, we'll be in such a great position to achieve our plans in 2022.

Grazina Berry (37m 21s):

More about this, people can hear when they tune into our upcoming webinars in January.

Geoff Allix (37m 28s):

I would absolutely encourage people, not just listening to podcasts, there are so many more resources, the webinar. There are huge amounts of content and resources on the Overcoming MS website and it's well worth having a look around if you haven't done so recently. It's really expanded the content there. It's huge now. With that, thank you very much for joining us for the start of 2022 and hopefully another successful 10 years.

Grazina Berry (38m 1s):

My absolute pleasure, Geoff. Thank you so much. Also, thank you for being one of our committed ambassadors, community members who keep supporting OMS as they adopt the OMS program. Thank you for the opportunity to share those plans, talk about the challenges, reflect on your achievements, and really look forward. I'm wishing everyone a healthy, enjoyable, and much brighter 2022.

Geoff Allix (38m 31s):

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS Charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

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Welcome to Living Well with MS Coffee Break #26, our season 3 finale, where we are pleased to welcome Pat Feller as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Pat, coming to you straight from sunny San Diego, California.

Pat’s Bio:

Pat was born in Southern California to great parents who were both public school educators. His younger brother kept him on his toes. His parents also adopted Pat’s other sibling from Vietnam. Pat traveled a lot in his early adult life: he lived in France, Taiwan, Hong Kong, and earned his MBA in Vancouver, Canada. Pat launched a career in the investment management industry, married his beautiful wife Alice, and raised two incredible daughters.

Pat was diagnosed with MS at the end of 2017. The beginning of this MS journey was very hard. He couldn't work. His typically high energy was gone. Depression, anxiety, and identity confusion struck. At the beginning, he was very influenced by the work of Roy Swank, Bob Cafaro, and a Facebook group centered on approaching MS in natural ways. After two years of rest, he tried to return to work as a financial advisor. After one year, it was clear that it wasn't a good fit, and a normal work week was out of the question.

In the past year, Pat’s neurologist updated his diagnosis from RRMS to PPMS. Pat tries not to let this affect his mindset. He works hard to be positive in his internal and external voice. His new "raison d'etre" is to be a blessing to others. In that spirit, his MS journey has also strengthened his Christian faith.

Pat discovered OMS a few years ago. Dr. Jelinek's words were in fact very influential in his decision early on to discontinue Tysabri. Through much of his MS journey, Pat tried to distance himself from the MS world. But this year, he decided to give back to the MS community by becoming more involved. This has been greatly facilitated by OMS facilitator Phil Startin, whom he got to know in a volunteer PPMS group Phil started. Phil helped Pat get involved with OMS and to learn that community is super important. And the OMS community is a great one to be a part of!

Three Important Lessons Pat Learned and Wants to Share:

My riches now are not monetary but in the form of blessings.
I have become acutely aware of the connection between health and wealth.
I have found that the most important ingredient to managing an MS journey is mindset.

Pat’s Links:

Check out Pat’s profile on LinkedIn, where he has started a dialogue on the health-wealth connection and its importance to the economy and personal finances.
Check out Pat’s Instagram
Pat recommends this TED talk by Bob Cafaro, a cellist with the Philadelphia Symphony who was himself diagnosed with MS and achieved very good results with a protocol very similar to OMS.
Pat loves this interview with the incredible Dr. Siray Stancic MD, who was diagnosed with MS and discovered the power of lifestyle medicine, which is what OMS is about.

Coming up on our next episode:

This is our final episode for 2021, so take a breath and exhale the year that was to make space for a happier and healthier 2022. Living Well with MS, Coffee Break, and Ask Jack will return with new episodes beginning in January 2022. And it will be a special year at that, because not only will it mark our 4th season of the podcast, but we’ll be celebrating OMS’s 10th anniversary! Stay tuned for more info on our Season 4 launch date and thank you for being part of our podcast and OMS communities!

Don’t miss out:

S3E45b Transcript

Coffee Break #26 with Pat Feller

Geoff Allix (1s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family made for people with multiple sclerosis interested in making healthy lifestyle choices. Today, you'll meet someone living with MS from our global Overcoming MS community. Our guest will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (46s):

Get your favorite drink ready and let's meet our guest. For this episode of the Living Well with MS Coffee Break, I'm glad to welcome Pat Feller from San Diego, California. Pat's a dynamic member of the OMS community who has really transformed his life by following the OMS program and is now in the process of transitioning his career from financial advisor to a certified health coach. Pat, thanks so much for agreeing to take part in our podcast.

Pat Feller (1m 14s):

Thanks, Geoff.

Geoff Allix (1m 15s):

Firstly, Pat, our audience would like to know a bit about you and your life. Could you share some background information on where you're from, what you do, and anything about your personal or family life that would give our listeners a sense of who you are?

Pat Feller (1m 28s):

Sure. Thanks for having me on this podcast. I appreciate it, Geoff. I am a Southern California guy. I was born in Newport Beach, California. No, I didn't surf. I body surf though. I went to the University of Oregon. In my 20s, I bounced around. I spent four years in France, a year in Taiwan, married my wife who is from Hong Kong. We have two lovely daughters, 19 and 16. I ended up in a career in financial services working for investment managers up until my diagnosis four years ago. Right now, we are slowly transitioning to the empty nest phase because we have one daughter in college and our next daughter will graduate for university in a year's time.

Pat Feller (2m 20s):

That's where I'm at right now.

Geoff Allix (2m 23s):

That's a high-stress job that you're in, it sounds like.

Pat Feller (2m 25s):

It was high. Yes, it was high stress. It was high energy, high stress. Yes.

Geoff Allix (2m 32s):

How about your experiences with MS? Could you tell us a bit about when you were diagnosed, what happened, how you found out you had MS, and how you initially coped with it?

Pat Feller (2m 44s):

Yes. Like a lot of people, when I look back, I can see when the symptoms started, probably 10 years before my actual diagnosis. I used to be a very ardent runner. Similar to you, I used to run every day four to six miles. I ran a couple of marathons. I'll give you an example. In San Diego County, we have the largest Marine base in the United States. It's called Camp Pendleton. Every June, they hold what is called a mud run. So, you run four or five miles.

Pat Feller (3m 26s):

They throw you in mud, bark orders at you, and you climb over things. I did this with a team and the first year we did this, I crushed it. I was by far the fastest. Six years later, I struggled to finish it. The other guys were looking at me like, "Pat, what happened?" I had this exhausted look on my face, but as a guy, I never thought to advocate for my health, go to a doctor, and say, "I think there's something really wrong with me." I just thought, "You know what? I'm getting old. This is life." There were progressively more symptoms that should have keyed me in on what was going on, I had no background, no family history with MS.

Pat Feller (4m 14s):

Like a lot of people, I had one old childhood friend who had been diagnosed with MS. I met him once after his diagnosis and it's like the cliche, "Hey, you look fine to me. You look amazing. What's the big deal?" I look back on that and I feel very guilty. In 2017, I started feeling a lot of symptoms, and then the kicker was, Geoff, in the fall, I got a flu shot in 2017. That just cascaded in one month.

Pat Feller (4m 55s):

I lost 35 pounds. I went legally blind in my left eye. My short-term memory completely disappeared. I was starting a new job at that time. When you lose your short-term memory and start a new job, that is not good. I was having trouble walking from the parking structure to the office. My balance was off. It was a nightmare. I was misdiagnosed for probably six months until, finally, an optometrist said, "Hey, you're legally blind in your left eye." I went and saw an ophthalmologist and then I saw a neurological ophthalmologist. They then said, "You've got to see a neurologist immediately."

Pat Feller (5m 37s):

He put me in touch with a friend of his who saw me the next day, ran MRIs, and said, "You got MS." At the time of diagnosis, I was in a really bad way. As a male, Geoff, I was coming off a successful career, a career that, in the financial services industry, I used to travel a lot so high energy, a lot of stress. I could see that my career during that time was probably evaporating because I just simply didn't have the energy to do it.

Pat Feller (6m 24s):

Plus, my bladder and bowels were a mess, which is a very common MS symptom. Here's the thing. When my transition to OMS occurred, I was immediately put on Tysabri. I've always considered myself a healthy person, so I was shocked. I'm like, "What? I'm not a healthy person? That can't be true," but it was true. I was sitting there in the infusion center, getting the Tysabri, and up until then, the specialists were saying, "We have these medicines. We have these therapies for you to take."

Pat Feller (7m 8s):

They didn't talk about anything else except these therapies so as I'm taking the Tysabri and it's a very expensive medicine, as a side effect, I felt very disempowered. I felt like a bystander to my health, and I didn't like that feeling at all. Somehow, I forget how I initially came across OMS, but I got the book. In the book, Dr. Jelinek talks about the self-efficacy or the self-agency that comes about when you take steps in your lifestyle, steps with the diet, your eating pattern, exercise, stress management, that you no longer feel like a victim, but then you feel like you have an active role in your recovery.

Pat Feller (8m 6s):

Psychologically, that's a mind shift right now and that really resonated with me. I thought, "Oh, my gosh, this is a board-certified doctor who is saying this." It was a game-changer for me. That led me to the research of Swank. I came across Dr. Terry Wahls, which is not completely aligned, but from a nutritional density standpoint, it is aligned. It was leading me to a different practice. Right now, this has evolved so that today, I'm really enthusiastic about Dr. Stancic, who also is a triple board-certified MD here in the States.

Pat Feller (8m 49s):

She has adopted lifestyle medicine. She's not affiliated with OMS, but it's completely in line with OMS. She, similar to Dr. Jelinek, is thriving and that really gets me super excited. I thought, "You know what, what if I transitioned my life, like a lot of people do in the MS world, to try to give back and that it can be part of my health journey?" I'm slowly transitioning to becoming a health and wellness coach as well.

Geoff Allix (9m 27s):

Yes, I think you are quite lucky in the States really because OMS, certainly until recently, didn't have a big presence in the US. In the UK, I was fortunate because they have a program where they send the book out for free. A charitable donor has funded that. There is a newer version of the Overcoming Multiple Sclerosis book coming out not so long. I think I'm allowed to say that now.

Geoff Allix (10m 8s):

It's in the relatively near future, but you can get it on Amazon and other places. I would say there are many books. There is funding in the UK so you can get the version. It is expanding and there is more stuff going on. And there’s Aaron Boster, a trustee of the organization, who's a doctor.

Pat Feller (10m 45s):

I'm very familiar with him. He's at Ohio State, I believe, yes. I did not know about his affiliation. That's really interesting. That's great.

Geoff Allix (10m 51s):

Yes, he just, in the last couple of months, became one of the trustees. He's very supportive of Overcoming MS. It's just fortunate really. I think the global spread is a good thing. How did you do with the OMS program then? What positives did you see? What problems did you have?

Pat Feller (11m 24s):

I think it's been very positive, and I'll give you an example. Recently, I went to the University of California, San Diego health system. I'm with a neurologist who I think is very competent, very open-minded, very supportive, and she placed me in a clinical trial that they were testing MS patients, their biological age with their chronological age. They took a lot of blood analysis.

Pat Feller (12m 5s):

They had a certain number of biological health markers. They had said, "Usually, the variance is plus or minus two years. I am 53 years old, and my biological age is 47 so that's great. I think that tells you something, but please don't get me wrong. Everything's not hunky dory. A lot of neurological damage occurred from which I'm still healing, rehabilitating, repairing so I don't deny that but from a health marker standpoint, from a biological standpoint, OMS is doing wonderfully.

Pat Feller (12m 48s):

I feel like my cognitive function has improved dramatically, which is so important in the MS world. I've got a lot more energy. I've got a pedometer. I track my steps every day. Yesterday, I ratcheted a personal record this year of 15,000 steps, which might not sound like very much to people out there, but when you've got MS, that's a good thing. I can see the fruit and, Geoff, the wonderful thing is my mindset has changed so that I truly believe that through OMS, I'm healing in a multi-tier systems way.

Pat Feller (13m 36s):

Our bodies are comprised of all these different systems, right? When I say system, it could be the lymphatic system, the endocrine system, cognitive, our gut health, our mitochondria, all these things. What OMS is allowing me to do is to heal and promote better health outcomes for me so I'm super excited about OMS.

Geoff Allix (14m 9s):

Something you said before, actually, which was the mindset of doing something. It actually gets called out in the book and it talks about faith. That thinking you're doing something actually makes it more likely that you'll have a positive outcome. That's why when they test for drug trials, they have to use a placebo because, actually, people on the placebo, on average, all get a bit better, even though they're not taking anything but sugar and water, whatever it is. They get a bit better because they think that they're doing something. There was a guy in the UK, it was for the BBC, but he was a lot behind the five-two fasting, I think was one of the things he did, but he also did a thing on the placebo effect.

Geoff Allix (14m 56s):

Basically, they gave everyone a placebo. They had back issues. They'd been through every form of medication, everything available to the health system. They didn't work. They cured, I think, 50% of these people. They gave them nothing. What they were giving them was just saline drips or something. It did nothing for them basically, and then that 50% of the people who got better, even after they told them that it was a placebo, it still carried on. They still got better because they basically changed their mindset. A lot of those people are still better even though nothing had happened to them medically. The mindset I think is an important thing, which is what you're saying.

Geoff Allix (15m 37s):

I think the fact that we're doing something actually helps our outcome because we know we've taken on board and we're doing something. We're getting better. We're not passengers to a journey that ends up wherever it may be. We're actually trying to do the best thing. I think that in itself has a positive outcome. You've talked about the good things. How was it going? A lot of people see it as a diet. I don't really like that because it's much more than the diet.

Pat Feller (16m 7s):

I don't like the word diet, yes. I don't use that word at all.

Geoff Allix (16m 13s):

How was it actually switching? I presume you switch your diet, maybe your exercise, mindfulness. How was it actually transitioning to doing well as parts of the program?

Pat Feller (16m 25s):

The exercise was easy because I've always been very exercise oriented. Stress management, actually, I also hired a life coach who, in conjunction with the OMS, has helped me a great deal in managing stress. Then also, with a lot of people, it's so interesting talking about eating patterns, right? Eating pattern, I would like to say, "Geoff, it has been a piece of cake." No. Why? Because what I've learned through the research and my reading is, are you familiar with the term the bliss point?

Geoff Allix (17m 9s):

No, no. What's that?

Pat Feller (17m 11s):

The bliss point is what food engineers call the optimum combination of sugar, fat, salt in these ingredients. They're looking for the bliss point, it was sugar, salt, fat, which really makes these foods irresistibly addictive. There's a reason why people have trouble changing their eating. I called it changing their food relationships because, from the get-go, we establish a relationship with food, right? Typically, it's going to be the more processed, the higher the bliss point. Coming out of World War II, the United States needed to provide enough calories for the population, so the food engineers really did a wonderful job.

Pat Feller (17m 56s):

I would argue that they actually did too good of a job because these foods are so doggone good. They taste so delicious because they're hitting all the dopamine receptors and all that biochemistry going on. I got this from Britain, your Olympic or the Tour de France bicycling team, the aggregation of incremental gains. Are you familiar with that, Geoff?

Geoff Allix (18m 31s):

Yes. I think most people in the UK would be. I think Brailsford was behind the team.

Pat Feller (18m 36s):

Yes, and that really resonated with me. I'm like, "Yes, I don't need to ship all at once." I can make these little changes over time and that's what I've been doing. I've pretty much eliminated sugar right now in the process of transitioning. I have been eating a little bit of chicken. I will confess some pescatarian orientation. I'm now going full whole food plant based. It's a journey and a lot of people have to realize if you expect just to turn on a dime immediately, you're probably setting yourself up for failure.

Pat Feller (19m 21s):

Go for those incremental changes. I'm in a marathon. I'm not in a sprint. I'm in a marathon for the rest of my life. I need to set myself up with small wins and build upon those. In the financial services industry, we call it the power of compound interest. When you earn interest or dividends and they compound over time, and over time, that creates a lot of wealth. I feel what we're doing with OMS is another form of compounded interest. We have to take a long-term orientation, not get discouraged when you buy that wrong stock and it goes down, or you have a little bit of trouble with OMS. It's all right. Be patient with yourself. Give yourself some grace and just dust yourself off, stand up again, go at it, and keep a positive mindset.

Pat Feller (20m 8s):

I'm a Christian. Sometimes, I've brought a spiritual component to this as it's amazing the way our bodies are designed to heal in all these fashions. OMS really is promoting that healing is how our bodies are designed and that's really very exciting.

Pat Feller (20m 51s):

Again, that's feeding into my mindset and that also feeds into what OMS has helped me with finding a good tribe. We all need tribes. We can join bad tribes that pull us down, or we can join good tribes that lift us up and elevate us. I've been very proactive in establishing or joining really healthy tribes. OMS is a wonderful tribe for me to be in. When I'm talking to other OMS ambassadors, I love it. I love talking to them.

Pat Feller (21m 33s):

When I'm talking to other people who understand OMS, it makes my day. It really does.

Geoff Allix (21m 40s):

Just to highlight it, they're called Circles in the OMS world. If you look on the website for Overcoming MS Circles, they're regional groups of people following OMS and ambassadors run those groups. They're not in charge , the ambassadors. It's more just they'll manage it.

Pat Feller (22m 2s):

They're facilitators. Yes, facilitator. That's a good one. Yes, so go on the website. There's a map plugin where you are, and I would just encourage anyone to join a Circle. They're wonderful.

Geoff Allix (22m 14s):

If you are a very long way from anyone else, there is also a Circle for people who are not close. Let's say you're in the Antarctic. If you're on an Antarctic base doing research, I'm pretty sure there's no Circle for the Antarctic. There is also a Circle that covers people who are not close to another one. Don't worry if you're miles from anywhere. There is a Circle for people virtually.

Pat Feller (22m 40s):

There might be some people out there who are like, "Well, Pat, I'm not doing very well right now. My attacks, my gait, my mobility, or whatever. I'm just not doing well. I don't feel like I'm healthy enough to join that tribe." That's not true because we do also have a global progressive Circle. I'm the host of that. I'm the ambassador. Here's a funny one, Geoff. My previous neurologist said, "Pat, your primary progressive," because I've never had any relapses, but I have been slowly deteriorating in certain functions.

Pat Feller (23m 22s):

My EDSS is only three and a half and that's really not very much. I changed neurologists and she said, "You're RRMS with possibly transitioning to progressive. We're not sure." I don't let that get me down. I never said that I'm perfect. I'm working on it. This is a Circle for anyone who's secondary progressive or primary progressive. Come and join us. It's a great circle.

Geoff Allix (24m 5s):

On another topic, how did you have to adapt your daily habits? Did you find it easy? You said diet you did a bit. Did you find it quite easy to do mindfulness? You said that because it was quite easy, the mindfulness side of it. Did that work all right?

Pat Feller (24m 33s):

Yes. What's really been a change for me is trying to be far more intentional with my day, intentional with my eating patterns, intentional with making sure I allocate a block of time for a variety of exercises. I'm intentional about getting my steps, intentional about stepping back and doing some mindfulness. For me, that's a bit of a combination of I'm a little bit of a Hoffer. Do you know Wim Hoff?

Geoff Allix (25m 8s):

Yes. It's worth mentioning that if people aren't aware. Yes, tell us a little bit about Wim Hoff because I think it's quite an interesting topic.

Pat Feller (25m 20s):

The Iceman. He's a man. He does not have MS. What happened to him? He's from Holland. A while back when he was young, he had a young family. He was married. He had three or four kids. Tragedy struck in the form of his wife committing suicide. It plunged him into depression. He struggled with just coping with the loss, coping with the depression. He's come up with, on the surface, can be very simple techniques. There are two of them. One is breathing deep breaths.

Pat Feller (26m 2s):

You're basically hyperventilating, then you'll hold it, and you do rounds, and then also cold water. That's why they call him the Iceman. You can do a cold shower, take an ice bath in packs of ice. It really has a remarkable way of promoting health, of helping your immune system, as well as just promoting a sense of wellness and balance in your life. They've put him to the test in hospitals and it's real.

Pat Feller (26m 44s):

There's medical evidence through the testing of him that this can make a difference. For me, I am not dogmatic, Geoff in like, "Okay, I can only do OMS." I like to think of it as I have a quiver of a lot of different arrows in it or a toolkit. We see what works for us and we add it to our toolbox. If it's a line, and they should be a line, obviously. For me as a Christian, I'm going to pray. I'm going to do some deep breathing. I'm going to change my inner voice because that helps reprogram the mindset.

Pat Feller (27m 34s):

That's been a journey about just changing my inner voice and making it very positive, very life-affirming. It's been a journey, but it's been a good one.

Geoff Allix (27m 50s):

For the last nearly two years now, we've been going through the COVID-19 pandemic. How has that affected your healthy habits? I'm not quite sure what the situation was in San Diego, whether you had full lockdowns or could you get out and exercise? How did it change?

Pat Feller (28m 9s):

It was tough. I'd be remiss if I said it was easy, but yes, we locked down. What I've realized is I've aged, I've become very social. Social connections are very meaningful to me. Relationships are very meaningful to me. At that time, two years ago, I had attempted to return to full-time traditional work, going to an office, putting in the hours, nine to five. When we went into lockdown, the office became empty, and it was really difficult.

Pat Feller (28m 52s):

Also, a nine to five lifestyle when you have MS is very difficult. It wasn't conducive to my healing. I needed to step back and to really pivot and redefine my life, redefine my purpose. I'll tell you, Geoff. As a male with MS, I find that a very interesting subject of when men are diagnosed with MS, a lot of times we need to change our careers because maybe our previous career was not conducive to our newly found prioritization of health through the form of OMS or whatever else we're doing.

Pat Feller (29m 48s):

There are numerous people within OMS that come to mind. I'm in the process now of repurposing myself. During the lockdown then, it was tough, but that made me very aware of the importance of social connections. That's when I really became much more involved with OMS because I saw that I need this in my life. I need social connections for my mental health and to encourage my OMS protocol. That's when I deepened my relationship with OMS.

Geoff Allix (30m 27s):

I think that social aspect, as well. I think no one knows what it's like to have MS except for other people with MS. My family are fully supportive, but they don't fully understand. My neurologist is an expert, but actually, he doesn't fully understand what it's like to have MS, but I think the connections that I get with the Circles I'm in and speaking with people like yourself, although we will have different symptoms, there's still an understanding, I think of what it's like to have MS. I think that the social aspect is so important because no one else could fully understand it, except for people that are going through it.

Pat Feller (31m 10s):

A week or two ago, I was on a call with other ambassadors. We were getting to know each other. We spent some time talking about OMS-related type stuff. There was an ambassador in Berlin. In the end, she said, in English, not German, "Hey, how are you guys doing?" I'm like, "Yes, I love that. That's what I want to talk about. How are you guys doing?" Because a lot of times when people have a title, I'm an ambassador, you just assume they've got it all together.

Pat Feller (31m 54s):

Then it started coming up. There are always going to be things out of your control, and you can't let those things discourage you, but they are a reality. When I help host and facilitate Circle calls, what I try to do, there's a number of things, but I want to make sure, number one, we acknowledge any trials and tribulations we’re going through. Acknowledge it. I don't want to dwell on it, but we've got to say like, "Yes, man. My mobility has been declining," or this or that. Acknowledge it, but then, let's talk about what brings you joy in life?

Pat Feller (32m 37s):

What gets you out of bed? What sparks your eyes? What made you laugh in the last week? There's a bit of sweetness and sourness to it. Acknowledge the difficulty. MS, like you said, it's inherently a difficult condition. You got to acknowledge it, but let's focus on the positive for the long term. That's what we try to do.

Geoff Allix (33m 11s):

As a final question, what would be the best piece of advice you could give to someone who is new newly diagnosed with MS, new to the OMS program? What would that bit of advice be?

Pat Feller (33m 30s):

Choose your tribes wisely. OMS is a great tribe. Be aware of the importance of your mindset. It's all about mindset. Focus on your mindset. If you can focus on that, everything else will fall into place. Choose your tribe wisely and adopt a really positive, affirmative mindset for yourself. Those are my two bits of advice.

Geoff Allix (34m 4s):

Excellent. With that, thank you very much for joining us, Pat Feller.

Pat Feller (34m 7s):

Thank you, Geoff.

Geoff Allix (35m 2s):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS Charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

The holidays are upon us, which for many of us means time spent with family eating a smorgasbord of delicious foods. This highly anticipated seasonal ritual sometimes leads to unintended consequences – expanded waistlines and hefty price tags for all the holiday meals you’ve had to stock up ingredients for. That’s why we are pleased to welcome Karen Lee, the healthy cooking doyenne of The Sensitive Foodie Kitchen, to help us navigate holiday eating in a healthy way that won’t bust the bank.

Karen’s Bio:

Karen Lee, otherwise known as The Sensitive Foodie, believes that food is the key to health. Karen uses a whole food plant-based diet to manage a variety of health challenges.

Karen was diagnosed with multiple sclerosis in 2016 and has been following Overcoming MS program ever since. She is the co-Ambassador for the OMS Circle in Sussex and has contributed recipes and cooking videos to OMS campaigns over the last few years.

In The Sensitive Foodie Kitchen, she combines her love of delicious food with her professional background as an intensive care nurse (now retired) and naturopathic nutritionist to inspire others to experience the powerful effects of using food as medicine.

Karen runs online courses, workshops and live cooking classes and offers a range of resources on her website. She is the author of Eat Well Live Well with The Sensitive Foodie.

Questions:

Welcome to Living Well with MS, Karen, and it’s great to have you here. Before we dig into the main course, so to speak, can you tell us a little bit about yourself, your experience with MS, and how you got into the healthy food game?
What are the main challenges you see people facing when it comes to staying true to the OMS diet while wanting to indulge in some delicious holiday food?
You talk in your courses and website about “managing energy”. Can you explain that concept and how it applies practically?
You’re a big fan of plant-based alternatives to traditional Christmas foods. Can you tell us some of your main course favorites and where people can find great recipes for them?
How about ideas for healthy sides or sauces? How do you spice up veggies or make sauces that are free of meat or dairy but still excite the palate?
Many recipes involve lots of ingredients, including things people don’t usually stock in their pantries. That can get pricey. What are your best tips for making healthy and delicious food without going into debt to pay the grocery bill?
What are your best tips for making holiday desserts more OMS-friendly without all those elaborate expensive ingredients?
Bailey’s is a cream-based liquor that people use to make a Christmas favorite, egg nog. You have some clever ways to make an OMS-friendly version at home. Can you share your secret?
You’ve given us some amazing advice on this episode for making healthy holiday foods that won’t drain your savings. I understand you teach many of these techniques through your course offerings. Can you tell our audience a bit about that and how they can learn more if they’re interested?
Finally, before we let you go off to do your own holiday cooking, what is your personal absolute favorite holiday meal from starter to main course to dessert?

And on that note, thank you Karen for sharing your culinary expertise with the OMS community. Make sure you check out the show notes for this episode for tons of links to delicious recipes, including one for an OMS-friendly Yule Log that is not available online but exclusively available in our show notes. And make sure you visit Karen’s website, The Sensitive Foodie Kitchen. There is some amazing content there, and you can find that link and many others in the show notes, so please have a look. Our next episode will be the last until 2022, so join us for Coffee Break #26 to meet OMSer Pat Feller from San Diego, California and hear about his inspiring OMS journey. Hope you can tune in!

Links:

Check out The Sensitive Foodie Kitchen website. You’ll find new recipes there shortly just in time for the holidays, including lentil and mushroom loaf, sweet potato and chestnut swirl, custard, and a cashew nut version of baked ‘camembert’.
Check out Karen’s recipe for dairy-free Bailey’s.
Visit this section of Karen’s site for detailed guide to healthy Christmas eating.
Watch (and learn how to) Karen makes mince pies on YouTube.
Learn about The Sensitive Foodie’s array of courses.
Check out The Sensitive Foodie on Facebook.
Check out The Sensitive Foodie on Instagram.

Special OMS-friendly Yule Log Recipe, Just for You:

Coming up on our next episode:

Only 1 episode left in Season 3! Next up: on December 13, meet Pat Feller from San Diego, California and learn about his incredible OMS journey on Living Well with MS Coffee Break #26, part of our popular ongoing series introducing you to members of OMS’s dynamic community from around the globe.

Don’t miss out:

S3E45 Transcript

OMS-friendly Holiday Cooking on a Budget

Geoff Allix (1s):

Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (44s):

Now without further ado, on with the show. The holidays are upon us, which for many of us means time spent with family eating a smorgasbord of delicious foods. This highly anticipated seasonal ritual sometimes leads to unintended consequences, expanded waistlines, and hefty price tags for all the holiday meals you've had to stock up ingredients for. That's why we are pleased to welcome Karen Lee, the healthy cooking doyenne of The Sensitive Foodie Kitchen to help us navigate holiday eating in a healthy way that won't bust the bank. Welcome to Living Well with MS, Karen. It's great to have you here. Before we dig into the main course, so to speak, could you tell us a bit about yourself, your experience with MS, and how you got into the healthy food game?

Karen Lee (1m 29s):

Yes, certainly. Hi, Geoff and hi everyone. Thank you for having me here. What can I tell you about myself? Well, my background professionally is I used to be an intensive care nurse, but I'm also a mutual and naturopathic nutritionist. And I've always really enjoyed food, loved all sorts of food, but not all food had loved me. So, I had discovered that I had food intolerances, which basically was all my favorite foods. So, I was intolerant to dairy and yeast, well cake and bread and cheese and all those lovely things.

Karen Lee (2m 9s):

I wanted to feel better though so I started to explore using different ingredients to have all the favorite foods that I had. I'd actually already transferred to eating a whole food plant-based diet, which I discovered whilst I was living in India, which is another story altogether. Right back in the UK, back at work, I suddenly lost sight in my eye, which was an interesting experience, and then subsequently got diagnosed with MS. That was in 2016 so I was already doing the food part of the OMS plan.

Karen Lee (2m 53s):

Fortunately, one of my colleagues had already told me about the program because her husband followed it. Of course, as we know, they are OMS. It covers not just the food. The food is my favorite bit but it's all how we manage our lives as well, which I wasn't managing particularly well. I started following OMS straight away and carried on developing and looking into eating amazingly tasty food that also happens to be good for your health and that's what I do now, continue making food that I can enjoy.

Geoff Allix (3m 33s):

What is the Sensitive Foodie Kitchen?

Karen Lee (3m 36s):

Well, I started off as a Sensitive Foodie so when I first started making changes, I started blogging about it. This was back in 2012 when there wasn't that much around. When I came back from India, I decided I wanted to start teaching other people how to do this. I started off doing cooking demos and classes in my kitchen, hence why it turned into The Sensitive Foodie Kitchen. Whilst some people think it's a catering company, it's actually just a normal kitchen where you make whole food, plant-based food. Then from there, it's just developed into running courses, doing cooking classes, and everything’s online now.

Geoff Allix (4m 25s):

Okay. We're talking about the holiday season. What are the main challenges you see coming across trying to follow the OMS diet while wanting to indulge in delicious holiday foods?

Karen Lee (4m 39s):

Well, I personally see this as three different challenges when it comes to this. One is energy levels because a lot of it just depends upon how you're feeling. One of them is the feeling of missing out because there's a lot of tradition to do with holiday celebrations. You have your favorite dishes, and they tend to be full of fats, sugars, and all sorts of things. You want to be able to enjoy it as well, but it's not fair if you feel like you're missing out. The other one is actually other people because it can be really difficult, the attitude towards what they think you can do, what you should be eating, or they get over-anxious about making sure that you are eating what you need to be eating.

Karen Lee (5m 25s):

Those can be quite difficult, and they can get on top of you. I think a lot of it is really just knowing what it is that you want to do and having a plan. I always say that to people, but I'm actually one of the worst planners. Even if the plan is in your head about the sorts of things that you want to eat and thinking ahead about, "Okay, well, I haven't got much energy every day so maybe I can make a few things or get someone else to make a few things." It's just really thinking about what this event is, whether it's over a few days or just one big meal.

Karen Lee (6m 8s):

Like I say, just really thinking about what it is that you want to eat and how you're going to achieve that.

Geoff Allix (6m 30s):

I think that I'm thinking now, because a lot of things can be frozen, so we're recording this the end of October, sorry, November, end of November. And, and I'm thinking I, I make a vegan Wellington and I think, okay, I'll make two vegan Wellingtons. I'll freeze them because they freeze really well and easily. And then that will be my sort of main dish. And then, because I've got like a week off, so there'll be like a couple of meals, like where I can have that. And then there's a few other things and I know that they're quite easily freezable and so I can do them over a number of weeks and put them in the freezer.

Geoff Allix (7m 9s):

And then that's much, much easier on the day. Then you talked about energy because, and you mentioned on your courses and website about managing energy. So, what's, what do you mean by that? What's the concept of managing energy and how does that apply practically to this sort of thing?

Karen Lee (7m 30s):

I think as with a lot of people with MS really struggling with fatigue and just only having so many things that they can do in a day. Again, I tend to judge people by how I am, but I want to still be able to do everything. Some of the time, it's just a matter of stepping back and saying, "Okay, I want to do all these things, but actually, I also want to enjoy myself." Enjoying yourself needs as much energy as doing all these things as well. A lot of it is just being really realistic and saying, "All right, at the minute I know if I spend this time making this and having it ready,” then as you say, all you've got to do is reheat it, have it done, and then “I'm going to have time to celebrate and socialize” because that's exhausting as well.

Karen Lee (8m 25s):

Talking to people, having children around that we're really excited by it can be quite tiring and you have a big meal at lunchtime may be, and then everyone can have a legitimate snooze in the afternoon. It's not always possible to be able to rest when you might need to rest. You lose that enjoyment and then you start feeling like you're missing out as well. My children are a bit older, they're in their early twenties and they've got their own things that they want to do when it comes to our Christmas celebration. Obviously, this can apply to any celebration. One of the things that we do now more is that we have our main meal on Christmas Eve.

Karen Lee (9m 10s):

We do all the food and everything, and then on Christmas day, we have all the leftovers and the reheated, so we've got time to open the presents, to have a couple of drinks, and have a much more relaxing day rather than rushing around and preparing this food and that food. it's just really working out what works for you so that your energy is at a level where you can just enjoy yourself and have a lovely family time, whatever that celebration is.

Geoff Allix (10m 1s):

Yes. There's a spoon concept or spoon theory that comes up a lot. You get so many spoons a day and everything has a cost in spoons.

Karen Lee (10m 10s):

It does.

Geoff Allix (10m 12s):

I find that I think with MS, you reset overnight. You have a night's sleep and you've got back your amount of spoons. I think it was originally someone just trying to explain the concept and they had some spoons around. They just said, "Well, imagine you had this many spoons," but actually cooking dinner. That's going to cost you some of those by doing that. By the time you get to the evening, and you want to actually meet up with some friends, you've got no spoons left, then you're going to be shattered. That's so true. I think that if I'm doing something later that I want to do that is enjoyable, then maybe I'm not doing as much exercise during the day because if I really work out hard exercising, I know I'm not going to have much energy left then or timing when I do exercise is another thing.

Geoff Allix (10m 55s):

I don't exercise first thing in the morning anymore, which I used to do because I know that maybe something will come up later and I'll just be shattered. Now, I think, okay, well, I'll make sure I've got everything I need to do during the day and then I can exercise. If I've got nothing left, I've just got slumped on the sofa and I'm fine.

Karen Lee (11m 15s):

Absolutely. The concept is great. Also sometimes, if you give yourself permission to take that rest in the day or to do something in the day, you can replenish your spoons as well. It could be that if you're busy, you've done a few things, you actually then either go and have a power nap or do a meditation. I find just switching my brain off for 15 minutes or so because it's a very busy place in there, that can rejuvenate me. Sometimes, it's actually going out for a walk. I've found that in lockdown, because I'm working from home all the time, sometimes I just need to get away from the computer.

Karen Lee (11m 60s):

I can feel exhausted but if the sun is shining, if I go out for a 15 or 20-minute gentle walk, it's great. It's rejuvenating. I think energy is something that is quite personal as well in how you revamp that. That goes the same with all these celebrations. It's just, again, coming back to the planning and really just thinking about what it is that's going to work for you and not being afraid to ask for help. I think that's really important, particularly if you are the one who is expected to be the main chef for all of this, which is fine.

Karen Lee (12m 47s):

You may want to do some rule of it, but equally, there's no shame, harm, or actually it's really good to get other people involved in it as well. If you want to, just dish out jobs to people. It might not be that you want everybody in your kitchen all at the same time because that can also be tiring, but send somebody off with the brussels sprouts to peel, for example, or send somebody out and give someone else the potatoes. We send them off into a different room, but don't be afraid to ask for help.

Geoff Allix (13m 27s):

You're a big fan of plant-based alternatives to traditional festive food. Can you tell us some of your main course favorites and where you can find recipes for those sorts of things?

Karen Lee (13m 42s):

Yes. Personally, I don't go for the processes fake meats. I like to eat whole foods so one of the standard options is a nut roast, which sounds a bit boring, but you can always talk it up a little bit by putting some extra ingredients in the middle, whether it's a cranberry source, some garlic mushrooms, greens or whatever it is. You can make it a bit fancy pants but also, I like to use traditional seasonal flavors. I might do a chestnut and sweet potato with some winter spices in that, and then wrap it up in some filo pastry to make as well.

Karen Lee (14m 32s):

It looks posh but it's not that difficult to make and you get that nice mixture of textures and flavors in there as well. Those you can make, and you can find the recipes for these on my website. Also, there's a lentil mushroom loaf as well because obviously, some people can't eat nuts or choose not to eat nuts. If they want to avoid too much fat, there's a lentil and mushroom one. With mushrooms, it seems to be much easier to find a nice selection of them now. You can find shitake mushrooms, mixed woodland mushrooms, or even just rehydrate some dried ones so that you get these lovely, different flavors and textures.

Karen Lee (15m 18s):

The other one that we do sometimes is a vegan haggis.

Geoff Allix (15m 26s):

That's the least MS-friendly foodstuff, certainly.

Karen Lee (15m 37s):

Yes, I know. It is but it's not. We discovered this when we were up in Edinburgh a few years ago. There's a vegetarian vegan restaurant out there called Henderson's, which I think is quite well-established. They had this haggis, but it's made from lentils, oats, and things, so it's a really nice rich flavor. You could just have it as it is, but also again, you can then wrap it up in some filo pastry to make a nice little haggis parcel or I'd make pastry where either you can add in a little bit of olive oil, a nut butter, or tahini, something like that.

Karen Lee (16m 20s):

You are replacing the fat, the lard, or whatever it is in pastry with a whole alternative or a slightly healthier one if you're using olive oil. This is a problem if you want to buy things in the shops. The seasonal celebration foods are really full of saturated fat, pastry in particular. Now, I used to love puff pastry, but even though you can find it without dairy, it's locked with loads and loads of different refined oils. You just look at the level of saturated fat and just that one tiny bit of puff pastry has an excess of highly saturated fat.

Geoff Allix (17m 11s):

What you said about filo pastry, because filo pastry in my mind is impossible to make yourself. It's so thin but most filo pastry, when you look at it in a shop, it has very few ingredients. It's really just flour and water and not much else at all. I think if people are avoiding gluten, that might be harder, but certainly, if you're okay with gluten, you can actually just use sheets of filo pastry and then just put olive oil between them.

Karen Lee (17m 39s):

Well, you don't even necessarily need to use olive oil either. You can use soy milk so that if you don't want to even bake with olive oil at all in the oven, which I know with regards to the temperatures, it's okay but some people like to completely avoid it, you can just use soy milk. It browns. It might not be quite as crispy, but it still works.

Geoff Allix (18m 8s):

That can make a really good pastry like a pie, like Wellington. You were saying you like doing pastry. That was a real game-changer for me that you could make that filo pastry wrap. There's one in the OMS cookbook, I did one for a Cornish pasty. You can make a short cross pastry. It's possible to do it. It's not quite as good but it's pretty good. So, you can get different types of pastries, which are pretty close.

Karen Lee (18m 43s):

Yes, which is why if I'm making something like that, I tend to use nut butters so you can get some really amazing 100% nut butter made from walnut or from hazelnuts and all-you-can-use tahini. They provide a slightly richer flavor to it and tend to hold it together a little bit more. It's certainly something that I've taught people in my cooking classes, like I do these cooking classes, so we've made pastry, different versions of pastry, quite a lot.

Karen Lee (19m 23s):

It works with gluten-free flour that way as well so people who are gluten-free don't have to miss out completely. It's quite difficult to manipulate sometimes. It might not win any photogenic prizes, but it works, and it tastes good. Those are the two key things as far as I'm concerned.

Geoff Allix (19m 52s):

How about side dishes and sources for meals?

Karen Lee (19m 56s):

With vegetables, I always think actually, especially if you're cooking, you're the only one eating the way that you eat, and everybody else's is having something else. I'm quite fortunate in my house. Everybody just eats whatever I give them, so I don't have to worry about that. With roast potatoes, you can cook them completely oil-free as long as you cook the potatoes beforehand so that they go, not mushy, but they're properly cooked so they fluff up and then they brown beautifully in the oven. Again, with the vegetables, as long as you can just steam them, cook them, roast them. Most veggies can be roasted without any oil whatsoever as long as you keep turning them in.

Karen Lee (20m 39s):

They need a little bit of water on them beforehand so that heat just helps to caramelize them. You can put some nonstick baking paper on the tray and then that just helps things to cook a little bit. Again, if you want to use a little bit of oil, then do so. I just tend to spray it with some olive oil. I don't tend to use a metal baking tray. I'll use more of a ceramic dish and just massage it so that there's a little bit covering it. One of the favorites here is leeks in white sauce, which has a bit of a challenge making them.

Karen Lee (21m 28s):

What I found is you can mix some flour and a little bit of olive oil together to make a roux but then put the dairy-free milk in the pan. You're not actually cooking the fat from the oil directly on the heat. You're immediately whisking it in, and it works so that you're avoiding that direct heat because that's important obviously as you don't want the fats directly on the heat in the pan. That does work. You have to do a lot of whisking so you need some energy for that or give that to somebody else.

Karen Lee (22m 13s):

You can make a white sauce that way, but I also tend to use a cashew cream with things quite a bit so just soak a few cashew nuts and then blend with some water. It can seem a little bit runny to start off with but once you put it in the pan and start heating, it thickens really quickly. That's another alternative way of doing that so you can still have your leeks in white sauce. That's very traditional. I don't know if any other family likes it as much as mine does, but it's a way of doing it.

Geoff Allix (22m 51s):

I think it's just traditions, isn't it? We have a red cabbage meal. The more complicated it is, the happier everyone is. It's got different fruits and things in it. I think those traditions are important as well. That's what kids really remember about Christmas.

Karen Lee (23m 16s):

Also, red cabbage is just brilliant at this time of year because you can add all those lovely flavors and spices into it as well, but it's also going to give you benefits as well. That's the thing about what I try to get across to people with any of my recipes. It's the fact that the enjoyment and the taste it's all really important, but it also all comes with benefits as well. Everything that you're eating, it tastes good, but also is going to be doing you good. It's all about making sure it's not doing any harm at the same time, but it's giving you extra benefits.

Karen Lee (23m 59s):

Red cabbage, all that amazing purple vital nutrients in that, your body loves them so that's brilliant.

Geoff Allix (24m 7s):

A lot of these things are unusual recipes. That's kind of the idea if we are eating something that's a bit special, a bit different so a lot of the things you wouldn't normally have in your pantry, the ingredients for these. Are there any tips that you have to make healthy and delicious food without spending a fortune on all these extra ingredients?

Karen Lee (24m 31s):

Yes, the thing is most of my ingredients I use is pretty normal food or normal ingredients. There are a lot of recipes out there that will use something rare and important. Certain things like tahini, for example, not everybody has, but if you like hummus, it can be quite difficult to buy hummus. It's actually much cheaper to make your own so having a jar of tahini in the fridge is quite an important ingredient to have. If you've got that, then you can use that for your pastry, for example.

Karen Lee (25m 12s):

If you've got some nut butter that you like, both those things are more expensive, but they don't have to be tucked at the back of the cupboard. They can be used for everyday things, but also, I would say that if there's something that is slightly more expensive, you can often source it at the cheapest supermarkets now, which is really great. Look at those places or go to a refill shop, for example. There are places where they are more affordable than going to Waitrose, for example, and buying a tiny packet of walnuts for three pounds or something like that, you can get that much cheaper.

Karen Lee (25m 52s):

It's just a matter of looking for places or going to places which stock these items.

Geoff Allix (26m 7s):

I find that in our local supermarket, even in the same supermarket, you can buy a tiny packet of almonds, or you can buy a massive bag of almonds basically. There's one, which is an ingredient side and there's one on the snack aisle. They're the same thing but they're charging five times the price by volume for that. Sometimes finding those things, and a lot of them, if there's a south Asian area or those specialists’ areas so our one has lots of different areas for Polish people or south Asia.

Geoff Allix (26m 60s):

There are different regional areas, I think, specifically for people from those areas to find their ingredients, but they'll have massive bags of chickpeas. You mentioned doing hummus so it's tahini. We always have tahini because we make hummus all the time. Just big bags of dried chickpeas, which are really cheap and so much cheaper than buying them in cans because there's a different audience there that even though it's the same supermarket, it's slightly more.

Karen Lee (27m 28s):

Absolutely. That was the other one I was going to say, actually, is you've got a local Asian store now. Although I live in quite a small town, we've got quite a large Asian community just because of the offices that we've got here. It's great because we've got a couple of stores that have imported lots of traditional Asian ingredients, which are so much cheaper. You can go to the supermarkets. I use chickpea flour a lot in things because it's a great egg alternative and it thickens. In the supermarket, they sell it as chickpea flour, and it costs a fortune. You go to the store, and you buy a pack of Bethan, it comes by different names, and it's at least half the price.

Karen Lee (28m 17s):

It takes a little bit of investigation, I think, to start off with, when you do cook this way and knowing what you can find in your local area. If you find where things are and there are other people like in your OMS Circle, for example, if these people live there, then tell them. They can know where they're from as well. On the veggie side as well, just quickly and again, the cheapest supermarkets often have vegetables which are really tasty and unusual that the other places might not stock so like Brussels Sprout tops, for example, which are really amazing green leaves, which are really tasty.

Karen Lee (29m 5s):

Usually, it gets thrown away or fed to the animals. You can find cheaper vegetables at local markets, things like that. There are places where you can get good bargains without spending too much money. Also, know what you're going to do with it when it's left over because you don't want to throw a load of food away for so many different reasons. Do know what you're going to do with it if you've got extra food or extra ingredients.

Geoff Allix (29m 38s):

We talked a lot about the main courses. What about desserts? How can you make an OMS-friendly dessert, again, without being too expensive and making it compliant?

Karen Lee (29m 51s):

Well, again on my website, because you go and buy mincemeat and traditional mincemeat has vegetable soup, which is really fatty. When you make it yourself, yes, you have to go and buy the ingredients, but getting some mixed dried fruit is much cheaper than a jar of mincemeat. That's much easier. A lot of it is just making things without the saturated fats. Again, I've got a recipe for the traditional Christmas cake, which is mainly soaked, dried fruits, your flour of choice, and some spices. None of that costs a lot. There's a Yule log recipe as well.

Karen Lee (30m 32s):

Some people won't know what a Yule log is, but it's a very traditional British chocolate log. It looks like a bit of a tree, but it is a chocolate swiss roll and it's lovely. You think, "Well, how can I do that OMS-friendly?" It is possible. If you use egg whites, it's like an egg white with a sponge, but if you don't, then you can use Aquafaba, which is the brine say from chickpeas, as long as it's unsalted, and make the sponge. Then I do a sweet potato chocolate frosting so make sure that you've got the lowest fat cacao powder that you can find, steam some sweet potatoes, blend it together with a little bit of maple syrup, and it's incredibly chocolatey.

Karen Lee (31m 31s):

Again, your taste buds have changed with MS anyway. You can create your own Yule log which, which not only you can eat but everybody else can eat as well if you want to share it, obviously. There are options. It seems like a lot of hard work, but apart from the Yule log, everything can be frozen, so you go back to what we were saying at the beginning. A couple of years ago, I did a video for OMS to show how to make OMS-friendly mince pies with the tahini pastry and they freeze.

Karen Lee (32m 12s):

They freeze really well. In fact, I've found some in my freezer the other day. I'd forgotten about them from last year. You can make batches and then just put them in a container, put them in the freezer, and then just take them out when you want them. It's easy really and not too expensive.

Geoff Allix (32m 38s):

Another big favorite in my household is Bailey's. I'm sure there's a generic name for Bailey's.

Karen Lee (32m 48s):

Irish liquor, I think. Creamy. Sorry, I have to call it.

Geoff Allix (32m 52s):

They do have their own vegan version now, but it's quite hard to get hold of, this thing called Bailey's Almond, which I found a few years ago in America. They got in trouble because it's not actually vegan. It's got honey in it, I think, which is not technically vegan because bees make it. I think they've changed it now. I think it is fully vegan, but it's not easy to get hold of it. They're not available in my supermarket. Apparently, you have some clever ways to make an OMS-friendly version. I make my own as well, so I'll see.

Geoff Allix (33m 33s):

I want to compare.

Karen Lee (33m 37s):

The thing is I love Bailey's, I have to say. Every year when it came to our Christmas celebrations, I would sulk because they were tucking into their Bailey's. That's when I decided. The thing with Bailey's is that they have a secret recipe really, so you don't really know what's in it. Mine was just really simple. It's just a mixture of, I use oat cream. You can use other dairy-free creams, but I think oat cream works quite well. It's just a little bit of cacao powder, some maple syrup, and then obviously some Irish whiskey in there because that's the bit that you want really.

Karen Lee (34m 26s):

It's actually really simple. Does it taste like Bailey's? Well, it tastes more like Bailey's than the almond one because the almond, to me, is such an overpowering flavor. I didn't like it.

Geoff Allix (34m 42s):

Yes. I think they've tried to make it a bit different maybe from normal Bailey's because they use vanilla essence as well.

Karen Lee (34m 48s):

Yes, vanilla. That's right.

Geoff Allix (34m 50s):

I've done a batch this year. Oat milk you can get in the UK certainly. There's a leading brand of oat milk, which I think is called Oatly. I'm guessing you buy the same ones, cartons of Oatly?

Karen Lee (35m 6s):

Yes, that's true because I'm not sure if it's still the case, but their organic cream used to have a palm oil in it I think it was, but the black carton, the normal one didn't.

Geoff Allix (35m 20s):

Yes, that's a weird one. Isn't it that you think you're doing organic and actually not necessarily?

Karen Lee (35m 27s):

Always check the label.

Geoff Allix (35m 29s):

Spend a lot of time checking labels now. I go with oat cream, not a hundred percent, just use some oat milk as well and whiskey obviously. I go with one shot of espresso coffee, some cacao powder, some maple syrup. I do put some vanilla essence. I didn't have any when I made some. My daughter's got massive all these things. She puts back empty bottles. Sorry, this is off topic, but an infuriating habit of children to put back empty bottles in the cupboard so you don't know that they are empty, and you don't replace them.

Geoff Allix (36m 15s):

I thought, "Well, Bailey's Almond. I'll try it with almond extract, which I had some of, and that didn't work, just as a tip, because it floats, and it just completely separates and sits on top and nothing I could do to get it to mix in properly. Yes, the next batch will be back to the original. My wife says it's not as nice as Bailey's, but I'm not going to drink Bailey's so I'm either going with nothing or this. I really like it. Actually, the best fun is in the experiment of making it, so you just try it. It maybe a little bit more cacao powder or should it be a bit sweeter.

Karen Lee (36m 57s):

Yes, you have to fiddle around to your tastes because yes, personally, I don't like coffee. I've tried but I just don't like the flavors, so I don't put espresso in it, but I know some people do. It's getting it to how it works for you and if other people don't like it, then great.

Geoff Allix (37m 21s):

Yes, exactly. Actually, you can put your own personal Bailey's just for you, which is brilliant.

Karen Lee (37m 27s):

Yes, absolutely. If they don't like it and then they're not plant-based or vegan, then they can have the other Bailey’s and leave it to you.

Geoff Allix (37m 41s):

You've given us some amazing advice in this episode for making healthy holiday foods that won't drain your budget too much. I understand that you teach many of these techniques in your courses. Could you tell us a bit more about how people could get involved in the courses if they want to learn a bit more?

Karen Lee (38m 5s):

Yes, sure. Just need to come and have a look at my website, which is www.TheSensitiveFoodieKitchen.com. In there, you'll find lots of recipes, anyway, up on the blog. A lot of people in the UK are coming up to the holiday season, I've actually got a separate section, which I've labeled Christmas recipes, but you could use them for any winter celebration so that you can go straight to them. The courses have got their own special page. You can have a look and see what there is. At the minute, I'm actually doing a few live cooking classes, leading up to Christmas, on a Saturday.

Karen Lee (38m 49s):

It's something I started doing in lockdown and not everybody on there who comes to cooking class is a fellow OMSer. There are other people that use this way of eating to manage all sorts of health problems or just because they like it. A lot of people are OMSers who come along. We have great fun and it's a bit chaotic but it's fine. It's all done on Zoom. Then in the new year, I'm starting the Saturday afternoon cooking classes as well so it's twice a month. You can see it all on there. Then on the courses, at the minute, I've got one course and there are cooking videos in that. It's quite good for people who are new to whole food, plant-based eating.

Karen Lee (39m 30s):

It covers all sorts of information about food and health basically, but you get lots of recipes and stuff. There's a new introductory cooking course coming up. I filmed it but I haven't edited it. Basically, just on the website and there are just lots of resources on there.

Geoff Allix (39m 58s):

As a final point, could you tell us what's your absolute favorite holiday meal is, from start to main course to dessert?

Karen Lee (40m 9s):

Yes. For starters, for this time of year, I like to have something quite crisp and fresh so something like orange and fennel salad, that type of thing with some pomegranate seeds and maybe toasted nuts on there so something really crisp. The main, I actually really like the sweet potato and chestnut swirls because they've got cranberry and everything in it as well with a load of roast veggies. Often, the veggies are featured much more than anything else on my plate.

Karen Lee (40m 52s):

Then dessert, for Christmas, I love Christmas pudding. It just goes back to my childhood really, setting it on fire and having it with a bit of a dairy-free cream on the side. It's all very traditional, but it's enjoyable, and some wine.

Geoff Allix (41m 15s):

Absolutely. On that note, thank you, Karen, for sharing your culinary expertise with the OMS community. Make sure you check out the show notes of this episode for tons of links to delicious recipes, including one for an OMS-friendly Yule Log that is not available online, but exclusively available in our show notes. Make sure you visit Karen's website, The Sensitive Foodie Kitchen. There is some amazing content there and you can find that link and many others in the show notes so please have a look. Our next episode will be the last until 2022, so join us for Coffee Break #26 and meet OMSer Pat Feller from San Diego, California.

Geoff Allix (41m 57s):

I hope you can tune in.

Geoff Allix (42m 48s):

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

Welcome to Living Well with MS Coffee Break #25, where we are pleased to welcome Nicole Zobrist as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Nicole, coming to you straight from Portland, Oregon in the Pacific Northwest.

Nicole’s Bio:

Nicole Zobrist lives just outside of Portland, Oregon with her husband and six-month-old goldendoodle. She was diagnosed with RRMS in April 2020 and found OMS shortly thereafter. She enjoys cooking and baking OMS-friendly recipes, reading, hiking, a great micro-brew, and everything else her local community has to offer. She also is the ambassador of the Portland, Oregon OMS Circle. The biggest change she’s made since her MS diagnosis is finding ways to manage stress – which led her to quit her job and become self-employed.

Questions:

Nicole, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
I understand that stress management was one of your biggest challenges in adopting the program, and it led you to make some serious life changes. Can you tell us a little more about that?
What are some of the other challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’re currently very involved in the OMS community, particularly as the ambassador of the OMS Circle in Portland, Oregon. Can you talk to us about the OMS Circles experience, and what that’s meant to you?
I also understand there’s a new online platform for Circles, so perhaps you can share a little about that experience, too?
I learned that you’re passionate about healthy eating. Can you share a little more about your foodie persona, and perhaps some tips to achieving healthier eating habits that have worked for you?
Nicole, we are ever so grateful for you being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Three Nuggets of Wisdom Straight from Nicole:

Everybody’s experience with MS is different.
Lifestyle modifications can be such an important tool in dealing with MS. It doesn’t have to be “all or nothing” if you’re working towards living a healthier life. I’m passionate about this because it’s something that feels like I can control when MS feels so unpredictable.
Finding community online has been so beneficial. It makes me feel like I’m not alone, especially since I was diagnosed during Covid and haven’t had many opportunities to meet people in person yet. This is one of the reasons why I wanted to start a Circle in my area as well. The online resources are great but I’m looking forward to building an in-person community as well.

Nicole’s Links:

Check out Nicole’s Instagram
Read the inspiring blog Nicole wrote for OMS.

Coming up on our next episode:

Only 2 episodes left! Next up on Living Well with MS: with the holidays closing in, you’ll want to tune in starting December 8 to meet Karen Lee, the healthy cooking doyenne of The Sensitive Foodie Kitchen, who will help us navigate holiday eating in a healthy way that won’t bust the bank.

Don’t miss out:

S3E44b Transcript

Coffee Break #25 with Nicole Zobrist

Geoff Allix (1s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS Podcast family made for people with multiple sclerosis interested in making healthy lifestyle choices. Today, you'll meet someone living with MS from our global Overcoming MS community. Our guest will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (45s):

So, get your favorite drink ready and let's meet our guest. Welcome to Living Well with MS Coffee Break #25 and please welcome Nicole Zobrist as our guest. Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you're joining me for an intimate chat with a member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org, or you can reach out to me directly on twitter @geoffallix.

Geoff Allix (1m 26s):

We hope you enjoy this episode’s conversation with Nicole coming to you straight from Portland, Oregon in the Pacific Northwest of the US. Nicole Zobrist lives with her husband and six-month-old golden doodle. She was diagnosed with relapsing remitting MS in April 2020 and found OMS shortly thereafter. She enjoys cooking and baking OMS friendly recipes, reading, hiking, a great microbrew and everything else her local community has to offer. She is also the ambassador of the Portland, Oregon OMS Circle. The biggest change she's made since her MS diagnosis is finding ways to manage stress, which led her to quit her job and become self-employed. So, Nicole, welcome to Living Well with MS Coffee Break.

Nicole Zobrist (2m 9s):

Thank you.

Geoff Allix (2m 9s):

We're pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world. And today you're in the hot seat. So, could you tell us a little bit about your day-to-day life?

Nicole Zobrist (2m 23s):

Yeah. So, you went over the basics. I live in a really great part of the US, lots of really great outdoor activities, weather permitting. Right now it's fall, so the rain has come today. With that came a lot of great changes in the leaves and stuff. But so day-to-day, I am an accountant by trade. So, I recently quit my job, I guess earlier this year, to become self-employed so I could manage my stress and my schedule a bit more. Being in accounting we had a lot of deadlines and that doesn't always bode well for work-life balance and stress.

Nicole Zobrist (3m 4s):

So, I went into business with my mother-in-law, helping small businesses with their finances and accounting and what have you. And then when I'm not doing that, I get to spend a lot of time with my husband and my dog. My husband is also self-employed, so we like to go on bike rides, go on hikes, spend time with our families. Yeah.

Geoff Allix (3m 31s):

So, you were diagnosed with MS about 18 months ago, was it?

Nicole Zobrist (3m 35s):

About a year and a half.

Geoff Allix (3m 37s):

And so, could you tell us a bit about that and how you initially dealt with your diagnosis?

Nicole Zobrist (3m 47s):

Yeah, so in April 2020, I got really sick. I was dealing with a lot of nausea, vertigo, and then thought I just had a really terrible stomach bug, but then I started to experience some numbness in the right side of my body, which just started in my hands and then slowly spread up the side of my neck and face. And that's what took me into the hospital, because then I knew it was something a little bit more serious than a stomach bug. And I was really fortunate to receive my diagnosis the same day I went into the hospital, which I do feel like listening to this podcast and other people's stories is really rare.

Nicole Zobrist (4m 27s):

So, I felt relieved to have an answer so quick. And I, whenever, you know, when you consult Google for what's going on with you, when you talk about tingling and vertigo, MS is one of the things that came up. So, it wasn't like I was completely blindsided. So, there was just relief to have an answer and just have answers so quick. And I feel fortunate that the, all the doctors and the staff in the emergency room were very kind, took me very seriously. I remember the nurse telling me that I would be okay. She had a friend who was in her sixties who had MS.

Nicole Zobrist (5m 7s):

And she still golfed all the time. And so, I just, I felt hopeful. It didn't have that same level of dread. I mean, obviously I was still very nervous about the uncertainty of it all. And my uncle, he also has MS. And he lives a pretty normal life. So, I didn't have like this negative image in my head of what MS might look like. So that just, I think that equipped me to figure out how to live with this news and make the most of it.

Geoff Allix (5m 42s):

Yeah. I think the whole diagnosis thing is-- the healthcare systems around the world are so different. And so, I came across recently, someone who said that the medication they wanted, they couldn't-- they're in the States and they couldn't get the medication they wanted because their insurance wouldn't pay. And which to us in the UK is really weird because we get free healthcare, completely free. So, if something works effectively, then we can have it. But the diagnosis takes months. So, it's sort of, okay, private system, yeah, it's really quick. But then you might have to pay, or you might find it's not covered by insurance and all, but actually you get some medications you can have that we can't, because if our health system has decided for whatever reason that they're not cost-effective enough, then they're just not available.

Geoff Allix (6m 32s):

So, it's, there's nothing you can do unless you literally pay the entire cost yourself. You wouldn't be able to. And even then, I don't know if you can, it's really difficult. So, it's that, tradeoffs. There's got to be a perfect country in the world that has everything. Just seems to be a bit of a lottery about where you are. So, when did you come across OMS and why did you decide to follow the Overcoming MS program?

Nicole Zobrist (6m 60s):

Yeah, so I was trying to think about when I specifically discovered OMS and it was shortly after my diagnosis. After I found out I had MS, I think I did what a lot of people did and just started combing through as much information as I could on the internet. And then I stumbled across OMS, devoured the website, read the book. And I think OMS really appealed to me because I was looking for more than just a medication. I knew I wanted to be on medication, but if there's other things I can do to give myself the best shot I wanted to do those things because I'm only 29.

Nicole Zobrist (7m 40s):

So, I have a lot of life to live with MS, and I'm hoping that it will be, you know, just the same, despite the MS. So, I think when I found the OMS website, read the book, that was the first time I felt like there were things I could do to take some control back rather than just doing what my doctor would tell me to do. Of course, that's important, if you agree with what your doctor is saying. And, but if there's other things I can do, then it felt well worth it. And I was already mostly vegetarian. My husband's been vegan for about five, four years, so that, I guess it wasn't a huge strain to just make those few tweaks and cut out cheese and eggs, because that was pretty much it.

Geoff Allix (8m 32s):

And if your partner is already -- that's really so much easier because if they're already vegan, then you don't have to sort of cook two meals or anything like that.

Nicole Zobrist (8m 42s):

Yeah, exactly. So, I recognize that that was, I am fortunate in that regard.

Geoff Allix (8m 47s):

Yeah. And so, we mentioned stress management. So, can you tell us a bit about the stress side of things and how you dealt with the stress of MS and life?

Nicole Zobrist (9m 3s):

Yeah, so I used to, I'd like to think that I do a good job of handling stress, but in reality, it still takes a toll. Before I had my MS diagnosis, I was in public accounting, which I don't know how it is in the UK but it can be a really stressful and demanding career in the States. And I enjoyed it, but it was stressful. You're working with a lot of deadlines. I think a lot of jobs in accounting, you have month end and year end deadlines. And I just found myself, I wasn't in public accounting anymore. I was in another job doing accounting work and it was around the end of the year, dealing with deadlines, that I had a relapse.

Nicole Zobrist (9m 49s):

And I just felt like I couldn't, you just feel bad telling your work, "Hey, I'm not feeling well. I need to take some time off." Even though that's what you need to do for yourself to rest and recover. So, I just knew that I needed to have a job, have a career where I could have that control and I didn't have need to have the extra stress of feeling guilty when I needed to take the time to take care of myself. So that's been a huge change just recognizing that, you know, you can't avoid all stress, but it takes a toll. So, if you can kind of change your life a bit or your career a bit to better manage that then, it's probably for the best.

Geoff Allix (10m 32s):

Yeah. I had the previous role where I, it was lecturing people, standing in front of people and things like that. And for a long period of time and I really liked the feeling when I finished. And then, and it was only after a while that I thought, I thought I really enjoyed this, but actually I thought, hang on. The best feeling is the feeling when I stopped doing it. It's that relief when I stopped doing it. And you think that's not really a positive thing. I'm basically enjoying the feeling of no more stress. So that's not a positive, but I'm putting myself under loads of stress, then enjoy the feeling of when it stops is like, it's almost doing yourself harm to enjoy the feeling of it stopping is not really a positive thing.

Geoff Allix (11m 15s):

So, yeah, I agree. Yeah. I think stress is one of the big things. And so, I mean, are there other challenges you had in adopting OMS?

Nicole Zobrist (11m 26s):

So, I think I'm not alone in saying, so speaking of stress management, meditation has been something that I've struggled with. Not so much, I actually enjoy the act of meditating and I recognize the benefits and I know when I can be consistent with it, I really do. I feel that that's a positive thing. I just think having the discipline to make time every day has been something I struggled with. But I think that I've heard before, if you don't think you have time to meditate, then that probably means that you need it the most, which I feel is true. So, I think that's been just the refining, just making a routine of meditation has been challenging.

Nicole Zobrist (12m 8s):

But I do feel like, you know, I journal, I started doing yoga maybe six months ago. So, I think there's other aspects of stress management and having that mindfulness, you know, you can still do that.

Geoff Allix (12m 22s):

Yeah. I think those things count as well. I think, I mean, journaling is a form of mindfulness and yoga is certainly, and I mean, you said about things like hiking. Hiking, you can, I used to hike a lot and basically you can walk around getting completely buried in your work or stress or worries, or you can actually enjoy the outside and the environment and clear your mind and really enjoy nature. And that's mindful. So, you can mindfully walk and that counts. I think. All those things count, you know. It's not just, you know, the sort of, oh, I need to set aside half an hour and it's going to be between 9 and 10am.

Geoff Allix (13m 7s):

There's a guy I met, Alex, not Alex Twersky who is the guy behind the podcast. Alex Tsirigotis, and he's a marathon runner, who's got MS and follows OMS. But he was saying, he's so competitive that he started to really get stressed out about having streaks on his mindfulness app. Because it was telling him he'd got back a streak of 25 days or something. And he started getting stressed out about doing mindfulness. So now he actually deliberately throws in a day off to make sure he's not building up a big streak that he'll worry about. Because otherwise he starts to get stressed out about mindfulness.

Nicole Zobrist (13m 43s):

That defeats the purpose, right?

Geoff Allix (13m 46s):

So, I got to think, it's not just about having that half hour. You can just live mindfully and that's cool. So actually yeah. Doing those mindful activities, they all count, I think. So what are some of the benefits that you've had then? When did you start seeing positive things from the OMS program?

Nicole Zobrist (14m 11s):

It's hard to really pinpoint when, because I started following OMS so soon after my diagnosis, but I know that like, I haven't had to deal with fatigue at all. So, I don't, you know, and I know there's been a lot of positive evidence saying that, you know, a low saturated or a diet low in saturated fat, plant-based can help with fatigue. So, I am not, it's been working, I haven't dealt with fatigue and really severe symptoms. So, I'm not apt to change things because I feel like, you know, whatever I am doing is working.

Nicole Zobrist (14m 53s):

But aside from the physical benefits of OMS, there are the mental benefits. I just feel like if I have tangible steps I can take to live a healthy life, and really there are things, I know you've mentioned before on the podcast things you should probably, you should be doing anyways, despite MS. So, I think that positivity in that hopeful outlook is something that I have really noticed with OMS.

Geoff Allix (15m 22s):

Pretty much, apart from the disease modifying drugs, you should be doing all of it. Every effort, pretty much everyone would be healthier if they did the OMS program, discounting the drugs. because it's just like it's, I mean, that's what my neurologist said. He said, there's no proof there that it will help with MS because it's unlikely to be proved because it's really difficult to do double blind trials on whether you're eating cheese or not. But he said, this is just going to make you healthy. He said, literally, everything you're doing is not bad for you. So, if you have a healthy whole food-based diet it is going to reduce your risk of cancer, it's going to reduce your risk of heart disease, diabetes, loads, and loads of other things.

Geoff Allix (16m 5s):

And stress management, that's good for you. Exercise, that's good for you. Vitamin D, now recommended for everyone who's not near the equator. All that's good for you. So, all these things are good for you, regardless. And he said that ultimately, even if it did nothing for MS, it's good for your MS not getting heart disease. Because if you have another co-morbidity, that's going to make that worse. So, all these things, he said ultimately, it's just good for you and everyone. Basically, everyone should be living a healthy lifestyle, and this is a healthy lifestyle. So yeah, I'm pretty cool with, okay, we're not doing anything really weird, and people think it's an alternative. It's not really an alternative. It's kind of sensible stuff like, it's very standard.

Nicole Zobrist (16m 42s):

And it's fun to see, you know, people like, that don't have MS that are, maybe dairy free or trying to eat, you know, more whole foods, plant-based. So, I think that like the conversation is changing, which makes it, makes us not seem like such outliers sometimes because yeah, like you said, it's not, it's not really that outlandish at all.

Geoff Allix (17m 8s):

Yeah. I don't think so. Giving Tuesday is on November 30th, 2021. It's a global movement where everyone, everywhere can do something to support a good cause. This year please show your support to Overcoming MS and donate at www.overcomingms.org/donate. That's www.overcomingms.org/donate. Your donation large or small will ensure we can help everyone live well with MS, including through this podcast and much more. Thank you and now back to our interview with Nicole Zobrist. So let’s also talk about Circles and communities, so you're the ambassador of the OMS Circle in Portland, Oregon.

Geoff Allix (17m 50s):

So, can you tell us a bit about the OMS Circles experience, how that's been, what it means to you?

Nicole Zobrist (17m 57s):

Yeah, so it's a new circle. We've only been active for a few months and we're growing. But I just, so when I found OMS and kind of being diagnosed with MS during a pandemic, it's really hard to meet people with MS. And it's nice, you know, I have really supportive friends and family in my life, but obviously they don't understand what it's like to have MS, necessarily. So just finding the OMS program and just kind of wanting that sense of community locally, I volunteered to start a Circle in Portland.

Nicole Zobrist (18m 38s):

So, like I said, it's new, but I think it's great to have that kind of, to be able to bridge online with in-person. And even though we haven't been able to meet in person yet in Portland, I look forward to being able to do that and just kind of fostering that sense of community and finding people that are interested in lifestyle modifications because I think that's hard too. When you talk about what you're doing to help manage your MS, you want to find people that are, you know, open to hearing about lifestyle modifications or already have been doing it before they heard about OMS.

Nicole Zobrist (19m 17s):

So, it's been fun to kind of meet people virtually at the moment, but eventually in person.

Geoff Allix (19m 27s):

And so, this new online platform for Circles. Have you been using that? Can you tell us a bit about that platform?

Nicole Zobrist (19m 35s):

Yeah, so we are able to just kind of chat online, which is great since we can't necessarily do it in person. We've had a Zoom call and so it's just nice. You don't see everybody every day, but you're able to pop on with questions or just say hello or whatever it is just to kind of still have that sense of community even when you're not meeting in person, which is really great. I think that's a positive of living in a more virtual world right now with everything going on, it makes those online interactions not feel maybe quite as awkward as they would have like two years ago.

Nicole Zobrist (20m 16s):

Like, oh, talking to, you know, strangers on the internet, but it's a really great community. It's fun to talk with all the other ambassadors too, and just hear what's working in their Circles to be able to bounce questions off them.

Geoff Allix (20m 34s):

Yeah. So having been involved before the pandemic, then we used to meet up every month, two months, something like that. But didn't have much interaction between, so now we have constant interaction, like this constant chatter going back between two to four members. So actually, hopefully, it will move to actually we will meet up again and then we have, there's been one meeting, but hopefully it will go back to actually physical meetings, that would be good. But keep up the virtual, the online stuff as well. So that'd be really good. So actually before, we talked less, so now it's mostly on the internet, but there's a positive from that as well, I think actually.

Geoff Allix (21m 15s):

So yeah, the fact that there's an online platform for Circles, but also, we can use tools like Zoom, WhatsApp is used quite a lot by my group and there's nothing wrong with that. So, we've got like multiple different ways of communicating and that's really good. So, I think going forward, it would be really positive that you've got people who want to communicate online. Maybe some people don't want to meet up physically and that's cool as well. So, there's a bit, there's something for everyone now I think in this actual--.

Nicole Zobrist (21m 42s):

Yeah. And there's some people that don't necessarily live right in the city or in the suburbs. So, it's nice for them to still be able to make connections, even if they're a few hours away.

Geoff Allix (21m 56s):

Yeah. And so, there was a mention of cooking and I hear you're passionate about healthy eating. So, could you tell us a bit about the foodie side and any tips that you have for healthy eating that have worked for you?

Nicole Zobrist (22m 12s):

Yeah. So, I've really enjoyed just trying new recipes. I think, it can be kind of daunting when you think about like cooking with less oil and just certain things that aren't necessarily OMS friendly, but I enjoy trying new recipes that are OMS friendly, whether that's like through the OMS website, all the recipes that are available, looking things up on Pinterest or Instagram, finding good accounts and making those substitutions for oil or whatever it is. So, I just think not being afraid to try new recipes and make substitutions for stuff.

Nicole Zobrist (22m 56s):

So, if you're baking and you're not sure like what you're baking and what you should use for an egg substitute, just Google it. Like there's so much information out there or just find an account that you really like and you follow that. So, I follow a few accounts on Instagram or I got a cookbook that I really liked and you have your favorites that you'd go to. So don't be afraid to try new things. They might turn out terribly, but then, you know, and you won't try it next time. And then on the flip side, have, you know, like a handful of recipes or bakers or chefs that you can always go to for recipes that you know that will work.

Geoff Allix (23m 39s):

So, what is your favorite cookbook? You can mention names.

Nicole Zobrist (23m 42s):

Oh yeah. So, I like, I think she's, I think she's been interviewed on this, Ashley Madden’s cookbook, which I want to-- I think I heard about her maybe on this podcast and I thought that's perfect because then I don't have to worry about making any modifications. So that's like, that's my go-to cookbook. And then for like baking, I like, there's an Instagram account called Nora Cooks. She has a lot of good baking stuff and there usually are options to swap out oil for apple sauce or whatever it is. But sometimes, you know, if there's not, I just don't eat very much, and my husband gets to eat the rest of it.

Nicole Zobrist (24m 26s):

You know, life is all about a little bit of balance. So yeah.

Geoff Allix (24m 29s):

So, with that, thank you very much for joining us on Living Well with MS Coffee Break and letting us get to know you a bit better. But one last question before you go, we have a tradition for Coffee Break guests, which is, if you tap into your experience with MS generally and OMS specifically, for a nugget of wisdom that could help people get into the OMS program, what advice would that be?

Nicole Zobrist (25m 1s):

I would say that it's important to have some grace with yourself. It's not all or nothing. If you're making small steps in whatever area of the program, that's still pushing you closer to being overall healthier. So, I think just not being so hard on yourself if you're not perfect in all steps is really important.

Geoff Allix (25m 23s):

Okay. Brilliant. And with that, thank you very much for joining us, Nicole Zobrist.

Nicole Zobrist (25m 27s):

Thank you for having me.

Geoff Allix (25m 29s):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. If you'd like to be featured in a future Coffee Break episode, or have any suggestions, please email us at podcast@overcomingms.org. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from The Happy Charitable Trust. If you'd like to support the Overcoming MS Charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (26m 12s):

Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

Empowerment is one of the strategic pillars of the Overcoming MS charity, and advocacy is a practical way in which we realize this goal. Living Well with MS is honored to welcome two of Overcoming MS’s newest trustees – Prof. Helen Rees Leahy and Alison Marwick – for a special roundtable discussion on how advocacy is put in practice. This episode dives into the mission of advocacy and how we put it in play by developing tools and resources to enable OMSers to have confidence in talking about OMS to family, friends, health care professionals, and others.

Helen’s Bio:

Helen was diagnosed with Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any Disease Modifying Treatment (DMT) within the UK National Health Service, she began to explore holistic approaches to managing her condition. She discovered OMS in 2008 and has followed the program ever since. In 2021, Helen joined the OMS Board of Trustees.

Alison’s Bio:

Allie is originally from Edinburgh but now lives in Surrey. While living in London in 2004 she had her first MS episode, but it was not until 2011 that she was formally diagnosed. Living in limbo for seven years, she buried her head in the sand and hoped nothing more would happen, but optic neuritis led to a formal diagnosis and the necessity to accept that MS was to be part of her life. Not willing to sit and wait for the next episode, she found Overcoming MS a few months later and has never looked back.

Since finding OMS Allie has supported the organization in many ways, and in 2018 became an ambassador for the OMS Circle in Surrey. Supporting the organization that has given her so much after diagnosis and enables her to live a full life is important to Allie, and why she applied to become an ambassador.

Allie lives with her partner, Neil, and is lucky to be able to work full time as a Salesperson for an IT consultancy. She enjoys spending time in her garden, running (slowly), and is looking forward to returning to Covent Garden Royal Opera House to enjoy the opera in the autumn.

Themes:

What is advocacy?
What does it mean for the OMS community?
How do we do out it in practice?
What is the OMS Advocacy Group?
Where can you begin?
How do we measure success?

Empowerment begins with OMS listening to and learning from the diverse experiences of our community: we’d love you to help us shape this work. See below for more info on the advocacy section of the OMS website.

Recommended Links:

Check out Overcoming MS’s new advocacy page on our website.

Coming up on our next episode:

Only three episodes left in Season 3! Next up: just in time for Giving Tuesday 2021 and starting November 29, meet Nicole Zobrist, the ambassador of the OMS Circle in Portland, Oregon, on Living Well with MS Coffee Break #25, part of our popular ongoing series introducing you to members of OMS’s dynamic community from around the globe.

Don’t miss out:

S3E44 Transcript

Empowering Advocacy

Geoff Allix (1s):

Welcome to Living Well with MS, the podcast from Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (44s):

Now without further ado on with the show. Today's podcast is different to every other one that we've had so far in that we have two guests, and we're going to discuss advocacy. And joining me today are Alison Marwick and Helen Rees Leahy. And I'm going to get Alison and Helen to introduce themselves. You may be familiar with Helen; she's already been a podcast guest. I believe it's season two, episode 30 off the top of my head. But there's a podcast about PPMS with Helen, but to start off with, would you like to, well, firstly, welcome and could you introduce yourself, Alison or Allie?

Alison Marwick (1m 31s):

Thanks, Geoff. Yeah, delighted to be here on this podcast today and talking a bit about advocacy. So, my name's Alison or Allie Marwick, I have relapsing remitting multiple sclerosis, and although I was formally diagnosed 10 years ago in September 2011, I had my first episode in 2004. So, I've been living with the disease for the past 17 years. I'm fortunate in that I found OMS within about a month of diagnosis, which was great because during that period, I was probably depressed having gone going through that grief cycle of being diagnosed and not really knowing what to do, but I was physically well, I was mentally well, but I had this, what I felt was, you know, a hideous disease and that my life was over.

Alison Marwick (2m 36s):

So, finding Overcoming MS within a month was hugely empowering and gave me so much hope. And it enabled me to really take steps in my life that I had been afraid to before. I had been told in 2004 that I probably had MS, or it was highly likely, I think they phrased it, but I pretended that it wasn't there. And I just was living in denial and in fear. And what OMS gave me was that ability to not be fearful anymore, to have hope that I was able to manage my life and that it wasn't over. And I could do all the things that I wanted to do by following the program and have great health outcomes.

Alison Marwick (3m 19s):

So that's, you know, that's kind of my story in terms of OMS and how I found it. And I, ever since then, I've been passionate in wanting to support the organization, support other people who are following the program or looking at or interested in following the program. So, I've been an ambassador for Surrey, which is where I lived for the last three years, which has been hugely rewarding. And, you know, we've got an active circle here, which has been great fun and, you know, helping and working with others who are following the program.

Geoff Allix (3m 52s):

Excellent. So also joining is Helen Rees Leahy as mentioned. So, Helen, could we have a quick intro from you?

Helen Rees Leahy (3m 59s):

Hi, Geoff. Hi, Allie. Hi, everybody. Thank you very much, Geoff, for asking both of us to come on to talk about advocacy today. I'm Helen, Helen Rees Leahy. I was diagnosed with primary progressive MS in 1997. So, I've been living with MS now for nearly 25 years. And as I had a diagnosis of primary progressive from the outset, I have had that course of increasing progression of my illness. I discovered OMS a long time ago, actually. I mean, I think it was something like 2008 when Professor George Jelinek published one of his very early books outlining the backbone of the OMS program.

Helen Rees Leahy (4m 46s):

And I seized upon that. I have never been eligible for a disease modifying therapy under the UK NHS system. So, I've always been managing my MS through my own actions and agency, and like Allie discovering the Overcoming MS Program was a tremendous support for me and indeed it supported me throughout my time, my life with MS and continues to do so. So, I think I'm very touched by what Allie says about, you know, overcoming fear and anxiety. And that's something I'd like to come back to. I think in the course of this conversation, the importance of the program, not only in enabling us to lead very healthy lives, as healthy as we possibly can with this condition, but also the emotional, the mental, the psychological support that it gives us in terms of becoming less fearful, becoming less anxious about our conditions.

Helen Rees Leahy (5m 51s):

And that's very much, I think, at the core of the advocacy initiative, the ways in which we can really realize the goal of empowerment, empowerment for ourselves and for each other as a community of people living with MS, following the OMS program.

Geoff Allix (6m 13s):

Can we start out just as a basic, what is advocacy? To start off with. I think a lot of people won't have heard the term too much. So, could we just define advocacy and the types of advocacy as well? Who wants to take this one out?

Helen Rees Leahy (6m 29s):

I'll kickoff, but Allie, I know will come in there as well. I mean, that's right. It's perhaps a rather abstract word. We relate it as I was suggesting a second ago, very much to our strategic goal of empowerment within OMS and really what it is, is making the case for the OMS program. So, if you think about it this way, I think as an organization, we're very good with information to go into the website. There's a massive amount of information about the program, how to implement it. You know, your questions are answered there, but we know that living with MS is challenging and convincing other people of the benefits of following a program like Overcoming MS.

Helen Rees Leahy (7m 16s):

It can also be quite challenging. Maybe those, it could be family, friends, it could be your healthcare professional. They don't always understand the program, they don't always see the benefits that we ourselves perceive from it. So, it's making a persuasive argument and it's finding the words and the confidence to make the case for following the program. Sometimes in perhaps what might be quite difficult or challenging situations, you know, where you need to be persuasive. It's beyond information. It's a process of a persuasion. And I say, we can do it for ourselves. We can also do it for each other as well.

Geoff Allix (7m 58s):

And Allie, do you have anything to add to that?

Alison Marwick (7m 60s):

Yeah, I would agree with that. I think, you know, there are two keywords there that Helen references: empower and confidence. You know, giving people the tools and the techniques and the confidence to be able to talk about their own diagnosis, talk about their own choice to follow the program and the benefits that that's shown. We know from the community engagement survey data that was, you know, we're currently trawling through as an organization, that a lot of people struggle with talking to healthcare providers, talking to their friends and family, but having your friends and family on side is a huge support network.

Alison Marwick (8m 43s):

It's really important. And we knew that you, having the confidence and the ability to be able to articulate what it is that you're doing and why, and not have to be defensive and constantly, you know, people going, oh, go on just to have a wee bit cheese or whatever. And so, it's about, we want to enable people to have that confidence, to have that ability, to have those conversations in any environment, whether it's friends, families, healthcare professionals, work, those sorts of areas that we'd recognize, but we maybe need to provide a bit, a few more tools, techniques, and support in order to be able to do that.

Geoff Allix (9m 20s):

Absolutely. I think I bet anyone who's got MS and following OMS, I think will be familiar with this. I think, I consider myself very lucky in that my neurologist is very supportive, but I've certainly had many stories of-- probably isn't fair to say, old school neurologists, maybe more traditional, if you like, who really are very much of the opinion, you take the medication and you live life. Literally, I think the phrase did come up like, you know, you've got MS, you don't want to make things any worse and just enjoy life while you can.

Geoff Allix (10m 1s):

And it was some really cutting remark like this I've heard, but actually when you look at some of the top neurologists, you know, some really leading neurologists, they are almost entirely of the opinion that lifestyle is a factor and living a healthy life will have an effect on your MS prognosis. So there is definitely, if you've got an up-to-date, if you like, neurologist, they seem to be very pro the OMS approach, but yeah, there are still some more traditionalist and equally person to person as well, because I think all of us will have come across someone who I think you said, why not just have a little bit of cheese, and that is absolutely the case with some people.

Geoff Allix (10m 49s):

Again, I feel very fortunate. My family and friends are generally very supportive, but it still happened, you know, a little bit won't hurt sort of argument. So how is advocacy particularly important to the OMS community then? And to the broader MS Community?

Helen Rees Leahy (11m 14s):

For me, that's all about individual and collective agency. So, when any of us has a diagnosis of a condition like MS, as Allie was saying, you know, there can be very devastating concerns. And, you know, people of course react in very different ways, but it's, you know, it's a profound change in anybody's life. And in fact, it can be a very traumatic period for people, but what the OMS program does not only, you know, is provide a toolkit to enable us to lead a healthy life.

Helen Rees Leahy (11m 56s):

It's also a means of covering our own personal agency of taking control, of feeding that something that we can do and in time, you know, perceiving the tangible benefits of following the program. So, for me, it's that process of taking control, which I think is so incredibly powerful. That is why we believe, of course, the Overcoming MS Program is so valuable in all of our lives and combined elements of it is a kind of more than the sum of the parts. So, I think we know this as individuals, but perhaps as a community, we haven't been quite as clear in articulating that within the MS space more generally.

Helen Rees Leahy (12m 46s):

So, I think it's about within the OMS community, becoming more empowered, connecting with each other. And as I say, becoming a stronger voice for the program within the MS space. So, as you say, Geoff, with a healthcare professional, who's a little bit skeptical, with a family member who, you know, is perhaps questioning why somebody with OMS needs to have time and space for meditation or stress reduction, why family food might need to change. So, I think it's about increasing confidence, increasing empowerment, and doing this collectively. We're not expecting, you know, sort of magic wand that any one individual can do this by themselves.

Helen Rees Leahy (13m 30s):

So, it's one of the ways in which we want to become more connected as a community as well.

Geoff Allix (13m 40s):

And how can you advocate by using your own experiences? What approaches have you had for that? Could ask that to Allie if--.

Alison Marwick (13m 53s):

Yeah. Yeah. So, I think a lot of OMSers are naturally advocates because, and you've had many of them here doing podcasts and talking passionately about how following the program has transformed their lives. And as Helen said, not just from a physical perspective, but from a mental perspective, and how they feel about themselves and their own empowerment. So, we can all be advocates just by, you know, talking about our own experiences. And Helen, I'm sure you experienced this as well, but when I meet new people and you're having food in a restaurant or something, and everyone was like, "Oh, what can you eat?"

Alison Marwick (14m 37s):

Why do you do that? Like, well, this is why, and this is, I've lived with this disease for, well, had a diagnosis for 10 years. I've followed this program for 10 years and I am in remission and everyone's like, wow. And they get it, you know, some people want to know more. Some people are like, oh, difficult subject, don't want to talk anymore. But I think everybody can be an advocate. We're not, what we're not saying here is everyone has to be. But I think by default, just by having conversations with your family and with your friends and by living your life, people will see that there's something there that you can, that you've got the confidence, you've got the ability and the, you know, you're managing your disease.

Alison Marwick (15m 22s):

Helen, I don't know if you want to add to that.

Helen Rees Leahy (15m 26s):

Yeah. I think you're absolutely right, Allie and I think the only thing I would add to that is for me, it's, as you say, our own kind of personal stories can be very powerful. And there's an idea which is becoming increasingly accepted and talked about within healthcare systems here in the UK, but also in other parts of the world as well. And this is the idea of experts by experience. It's the idea of the so-called patients being a kind of co-creator of their own kind of treatment plan and parts and acknowledging that alongside the medical model of medical knowledge and research, there are other forms of insight, knowledge, and understanding, which come from the lived experience of an individual and a group of individuals.

Helen Rees Leahy (16m 21s):

And it's particularly true with kind of chronic conditions, such as MS. For me, it's more than just our own individual stories. It's actually reflecting on what we've learned, what we learned from those experiences and actually looking for what we have in common, because we know as we've said in this conversation already so far, each of us has a very distinctive experience of MS. And sometimes, you know, your experience is nothing like my experience. Let's put those differences to one side and focus more on what we have in common, what we learn, what we can learn jointly.

Helen Rees Leahy (17m 9s):

And I should say, acknowledging both our vulnerability, but also our agency, our vulnerability I think, is what we get from MS. And I think our agency is what we get from OMS, from Overcoming MS.

Geoff Allix (17m 20s):

And just as an aside, I mean, I find a lot of people who follow OMS and certainly myself, people always say, you look really healthy, and you look really well. And I've heard that from a lot of OMSers that people are always commenting. How well we look, and I said, I always say, well, yeah, apart from the obvious then yeah, I do actually feel, I think it does actually my sort of ex-- lived experiences that I am definitely healthier apart from the fact of MS. And that my healthcare providers are on board with that, and they said, yeah, I noticed that you're living a really healthy life.

Geoff Allix (18m 0s):

You're doing exercise, you're eating a whole food diet, which is good, stress reduction, good. All those things are good things. It's not a, we're not doing some sort of really weird, out there, sort of unusual remedy. These are well founded, healthy things to do.

Helen Rees Leahy (18m 21s):

Well. I think that's exactly right, Geoff. And if you had diabetes or a particular heart condition, much of the kind of advice that we follow in OMS would be recommended to you by your healthcare professionals, without any question at all. It's orthodox, it's standard practice. As you said, a few minutes ago, unfortunately, lifestyle management, let alone Overcoming MS isn't yet a kind of standard prescription for people with MS. But you're absolutely right, with-- and you also said something interesting a moment ago about, well, you've got MS so why not enjoy life, which kind of implies that somehow following the OMS program, you know, robs you of enjoyment, well far from it.

Helen Rees Leahy (19m 7s):

You know, I think instead of thinking of it as a sort of rule space, sort of diktat, which, you know, is somehow a constraint. In fact, of course, it's a fa-- as you say, it's a foundation to be free and to lead a good life, a healthy life. And of course, to lead the best lives we can with MS.

Geoff Allix (19m 35s):

And Allie, have you got a point as well? On that?

Alison Marwick (19m 37s):

Yeah. I would add to that, just go back to your comment, Geoff, about people tending to comment that OMSers look well, I think the key thing though is that OMSers know that there are so many hidden aspects of MS. And so, you may look brilliant, you may-- you know, your skin, your hair, everything might be great, but you could be in a lot of pain or, you know, suffering from one of the many things that we know that are hidden to the wider world. So that, I guess, you know, one of the things that we do bring to bear in these kinds of conversations is that yes, we know that the health, the lifestyle and the-- is great.

Alison Marwick (20m 21s):

And people comment that physically, we look like what they can see, we look well. But actually, those of us who live with the disease know that there's lots of hidden things there as well. So, we're not, we're not dismissing that, but acknowledging it, and you're working on, you know, helping people in, you know, who are struggling with some of those areas as well. So, there's, it's not, we're not all running marathons and all that kind of stuff. It's about empowering people wherever they are with their disease, and you know, where they are physically and mentally, even if everybody thinks we're all fine.

Geoff Allix (21m 5s):

Yeah. We're like swans. We look great on the surface, but an awful lot of work underneath.

Alison Marwick (21m 8s):

Absolutely. Absolutely. But, and to Helen's point, you know, I don't, I agree. I don't think that following OMS is a burden. I don't know if somebody told me I could eat meat tomorrow, I'm not sure that I would. I'm, you know, I have-- my life is much more enriched. I've had more confidence, I think, as a person to be able to do things, but I never thought prior to diagnosis that I would do, I guess I've taken life by the horns a little bit more than I would have done before. And certainly, living those years between 2004/5 and 2011. I lived in fear just waiting for the next relapse to happen and made some lifestyle or life decisions that I've completely reversed since following OMS, because I'm not afraid anymore.

Alison Marwick (22m 2s):

And I think that's, I think, you know, giving people their hope back is such an important thing with OMS.

Geoff Allix (22m 13s):

And so, we talked about advocacy a lot, now on to the OMS advocacy group. So, what is the advocacy group and why is it important to have this group?

Helen Rees Leahy (22m 26s):

So, we created the advocacy group at the start of this year, starting 2021. And the importance of it is precisely that it's the goal of empowerment needs to start at home, i.e., within the OMS community. So, with all this discussion about advocacy, we're very clear about this guiding principle, that it must be a kind of community-led initiative. So, from the outset, we wanted to have the voices of OMS as around the table, helping us to start the conversation. And I would certainly want to emphasize that we're still very much at the beginning of this work, which is why it's so great to have this conversation today because we hope it might be a spur for more people to join in the conversation.

Helen Rees Leahy (23m 13s):

So, so far, the advocacy group has met, I think, four or five times. It's a small group of OMSers. And we've really been just trying to kind of unpack this, just what we'll be doing today. Really just what this word advocacy means and what might it mean in practice with OMS. So there, the advocacy group is important because it's an initiative which is being led by OMSers. And as I say, we're certainly not complete as a group with small gathering so far. So, if anybody's listening to this podcast today and would like to become more involved, either by suggesting they might want to join the group, we meet every couple of months on Zoom and, or contributing to our advocacy thinking in any other way.

Helen Rees Leahy (24m 1s):

If I may just say, Geoff, as soon as this podcast goes live, also going live will be a new advocacy page on the Overcoming MS website. So, if you're on the website and you type in advocacy, or if you're in Google and you type in Overcoming MS advocacy, you'll land on that page. It will give a bit more information about where we are so far, and they'll also be a kind of contact info there. So, you'll be able to get in touch with us if you'd like to be more involved in it, to find out more about what we're doing. And we'd really, really welcome that. As I say, we think sort of empowerment has to start within OMS and we're really determined that we sort of put that principle into practice.

Alison Marwick (24m 48s):

Yeah. And just to add to that, Helen, I think is key for anyone that's listening, that we would love people to join the group because we do need more members, but also if you feel that joining the group is too much of a commitment and you don't, you know, you're not comfortable with that, but you want to share something, share an experience. You know, for OMS, the advocacy model we're seeing as being in three parts of self-advocacy being able to talk about it yourself, to your friends and family, and peers. So, talk to other OMSers or OMS or collectively as an organization, you know, to healthcare providers, if you have stories, or if you've got something that you want to share with us, you don't have to join the group.

Alison Marwick (25m 36s):

But we're keen to hear, we're, as we mentioned earlier, we're looking at the community engagement survey that so many people responded to over the summer, which is great. And there's a huge amount of data in that, around how people feel empowered or not, some of the challenges that they have. And, you know, so there's some decent information that we can use that, but if, you know, if you haven't shared with us some of your experiences and you feel that, you know, it's something that the organization needs to be aware of because it could help other people, then, you know, the call to action is for those as well as, you know, other individuals, to join the group.

Geoff Allix (26m 20s):

And if someone's not comfortable with joining a group, whether they don't have time or they're just, they're not comfortable with sharing, are there resources for people to help them with their advocacy journey?

Helen Rees Leahy (26m 38s):

Definitely. Well, as Allie said, definitely there will be. What we did want to do is sort of go off and design those resources by ourselves without talking with our fellow OMSers. So that's exactly what we're planning to do. And as Allie says, people can contribute to that process in all sorts of ways. So, what we're aiming to do, and it will be something which I think you'll be able to see sometime in 2022, we want to take it carefully. We're developing resources, which will specifically be there to support people in as with talking, making the case, perhaps giving them some tools and tips for perhaps quite tricky conversations.

Helen Rees Leahy (27m 25s):

When, you know, you're talking to somebody who's a little bit skeptical or resistant to your own kind of commitment to Overcoming MS. So, for example, some of the resources we might have might be frequently asked questions, we might play out some different scenarios, you know, how to cope with challenging or tricky conversations. We're having conversation starters, how do you kind of begin to talk to different people, family, friends, colleagues, healthcare professionals, about this? If you're going to see a healthcare professional, be it your family doctor, or hospital neurologist, or MS Nurse, for example, how might you prepare for that encounter?

Helen Rees Leahy (28m 11s):

How might you prepare for that meeting? How might you begin to talk about Overcoming MS with a healthcare professional? And I think that can be quite a challenging meeting in some respects because we know that our expertise is the expertise of lived experience. And as you were saying a few minutes ago, that's neither better nor worse, but it's very different from sort of the medical model for medical expertise. So, we need to be clear about the insight and understanding that we bring to the conversation based on our lived experience and how that can communicate and become a conversation with a healthcare professional.

Helen Rees Leahy (28m 55s):

So, we're thinking about these kinds of resources and that's sort of really a first step. So yeah, that's where we're thinking at the moment. But as Allie says, where we're really beginning is also a process of information gathering. So, looking really closely at the community engagement survey data, which is fascinating. And we might just take this moment to thank anybody and everybody who's listening, who participated in the survey because really, you know, your responses are providing really for the first time, I think for Overcoming MS, you know, statistically robust sample of data and findings, which are telling us so much already, and we've really want to root this initiative in that lived experience of the OMS community.

Geoff Allix (29m 55s):

And could I ask, what do you think success would look like? How do you measure success, or what do you expect to be a successful outcome of the advocacy group in OMS?

Helen Rees Leahy (30m 14s):

Do you want to have a go with that Allie?

Alison Marwick (30m 15s):

Yeah. So, success, so we're going to measure success in a number of different ways. And I think we're going to, you know, we need to look to see if there's the global success in OMS being everywhere, but that's going to be quite a way off. So, let's look at it. The community engagement survey is going to be done on an annual basis. And so, we will be using the empowerment questions that are part of that to see whether or not we've shifted the dial on how empowered people feel and having control, how confident they are about talking to their healthcare providers, how supportive family and friends are. So, we're going to use that as a mechanism to be able to measure, but that's going to be another year before we do that.

Alison Marwick (30m 59s):

So obviously we're not going to just sit back and wait to see what the results are, I think other success factors are going to be about how many people engage with this process that want to get involved. And we're going to look at success with, you know, some of the material that's going to be created in terms of, as Helen said, talking to healthcare providers, you're preparing for those kinds of conversations. How many of those items get downloaded from the website? What the kind of conversations are across the forum and the website, and looking at it, generally you know, how many more people are finding it, you know, finding the confidence and the empowerment.

Alison Marwick (31m 48s):

So, we've not put together specific, eh, KPIs, success factors at the moment, not wanting to be too corporate about it, but, you know, because we are right at the very beginning. But we are, you know, we're looking at well, what do we want, what is success going to be in the next six, 12 months before we move into, you know, really accelerating us further down the line?

Geoff Allix (32m 12s):

Helen, do you have anything to add to that?

Helen Rees Leahy (32m 16s):

No, I think Allie outlined that very well. Again, if you're listening to this and you think, okay, I know something that will be a good measure of success. Let us know. You know, as I say, we really want this to be very much informed by anybody and everybody within the OMS community. So as Allie says, I'm reluctant to pin things down too hard and fast too quickly.

Geoff Allix (32m 42s):

So, with that, I'd like to thank you very much for joining us on the podcast and encourage everyone to have a look at the OMS advocacy page and wish you every success for the OMS advocacy group. So, thank you very much for joining us, Helen and Allie.

Helen Rees Leahy (33m 1s):

Thanks a lot, Geoff.

Alison Marwick (33m 3s):

Thanks, Geoff.

Geoff Allix (33m 4s):

And thank you for giving us this chance to wave the advocacy flag. Thank you.

Alison Marwick (33m 13s):

Yes, thanks very much.

Geoff Allix (33m 14s):

Geoff Allix (34m 1s):

Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our email newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

Welcome to the season finale of Ask Jack, featuring the prodigious culinary talents of professional plant-based chef and writer Jack McNulty answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Ask Jack will return in 2022 for its second season, where we will feast on even more of our community’s questions about all things cooking and eating in an OMS-friendly way. You can submit your questions for Jack anytime by emailing them to podcast@overcomingms.org.

Introduction

In this episode, we have curated a set of commonly asked questions around holiday cooking. With the onslaught of the holidays upon us, people following the OMS program face major challenges in making traditional holiday recipes compliant with their dietary choices under the OMS program. Jack has had ample experience in navigating this narrow channel of healthy eating and holiday food fun, and what he’s learned and hopes to convey to you is that following OMS dietary guidelines doesn’t mean you have to forgo the joy of yummy holiday eating. So, let’s dig in!

Questions

How do I keep from 'cheating' when I'm around family and everyone is eating food I can't eat or enjoy?
Do you have any ideas for sweets I could make for the holidays? Sweets I can take to the office party and enjoy at home with my family?
Do you have any ideas for an OMS-friendly holiday roast?
This is my first year with MS, I'm new to OMS and I am struggling to come up with ideas for food I can enjoy during the holidays?
I'm confused about chocolate and what is allowed on the OMS diet. Can you explain what I can and can't use to make my desserts?
I want to make pie this holiday season, but I can't find an OMS-safe recipe without added oils. Even the filo dough at the supermarket has oil. What can I do?
What's the difference between Dutch-process Cocoa and Cocoa? Are both OMS-safe? Is raw cocoa better than cocoa?
How can you make a traditional holiday cake OMS friendly?

Thanks so much Jack for the inspiration and practical advice you’ve provided on how to make holiday cooking and eating healthy and fun. For those of you listening, you’ve probably built up a festive appetite, but now you can make those delicious recipes a bit healthier, too. This is the final episode of Ask Jack for 2021, but Jack will return to answer more of your food- and cooking-related questions in 2022. So that’s something to build up an appetite for. Remember, you can submit your questions for Jack anytime by emailing podcast@overcomingms.org. Till then, happy OMS-friendly holiday cooking and eating!

Links:

Check out this blog post on 5 tips to avoid binge eating during the holidays.
Here’s a link to Jack’s blog post about holiday cooking ideas.
Want more cooking ideas? Check out the OMS cookbook!
Here’s an in-depth article on the effects of alkalization on cocoa.
Learn about the difference between Dutch processed and natural cocoa.
Learn about the difference between cocoa and cacao.

Connect with Jack in a number of ways if you’d like to follow his work or gain some more insight into his OMS-friendly vegan culinary world: Website | Instagram | Twitter | Facebook

In addition, Jack has started a newsletter publication called VeganWeekly that shares three vegan recipes weekly to try at home. Subscribe to it here.

Coming up on our next episode:

Tune in starting November 17, 2021 for a very special episode with new OMS trustees Prof. Helen Rees Leahy and Alison Marwick for a stimulating roundtable discussion about advocacy and its central place in spreading the message about positive lifestyle change to the entire MS community.

Don’t miss out:

S3E43c Transcript

Ask Jack #5

Geoff Allix (2s):

Hi, I'm Geoff Allix, host of Living Well with MS, the podcast from Overcoming MS.

Jack McNulty (7s):

Hi, I'm Jack McNulty. A professional chef and serious OMS foodie. Welcome to Ask Jack, a special Living Well with MS podcast series, where I'll be answering food and cooking-related questions submitted by you, our Overcoming MS community.

Geoff Allix (25s):

If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org, that's podcast@overcomingms.org. And now let's rev up our appetites and dig into this episode. Welcome to the season finale of Ask Jack featuring the prodigious culinary talents of professional chef Jack McNulty. Sorry I know Jack just asked me to say, could you say, professional cook? So, I'll change that, professional cook, Jack McNulty, answering food-related questions generated by you, our community. Check out the show notes below that dig into the topics covered in this episode in more detail. Ask Jack will return in 2022 for its second season where we will feast on even more of our community's questions about all things cooking and eating in an OMS-friendly way.

Geoff Allix (1m 13s):

You can submit your questions for Ask Jack anytime by emailing them to podcast@overcomingms.org. So, in this episode, we've created a set of commonly asked questions about the holiday season. With the onslaught of the holidays upon us, people following the OMS program face major challenges in making traditional holiday recipes compliant with their dietary choices under the OMS program. Jack has had ample experience in navigating this narrow channel of healthy eating and holiday food fun. And what he's learned and hopes to convey to you is that following OMS dietary guidelines doesn't mean you have to forgo the joy of yummy holiday eating. So, let's dig in and welcome, Jack.

Jack McNulty (1m 54s):

Thanks, Geoff. Great to be back for another little conversation about food and this time specifically holiday food. Looking forward to it.

Geoff Allix (2m 1s):

And I think this is, it's a time when food is central, isn't it? There are many different festivities going on at this time of year, but they all do seem to center around food more than maybe at other times of the year.

Jack McNulty (2m 17s):

That's right. Yeah. There are lots of customs. There are lots of parties, businesses, businesses have office parties, things like this. So yeah, there are lots of opportunities to have food in front of you. But of course, with that, there's also a lot of opportunities to have peer pressure to slip away from the diet a little bit. And I guess that's probably one point we could spend a little bit of time talking about.

Geoff Allix (2m 45s):

So, to start off with, how do you keep from cheating when you've got everyone eating all this huge array of what does tend to be more non-compliant food? That's the other thing I think because people see it, they have this sort of maybe unhealthy food as kept on a pedestal. Like, okay, I shouldn't be eating this all the time, but it's the holidays. So, I'm going to have this high fat, really lots of maybe more prepared, processed, you know, lots of things. And people think of that because, oh, they shouldn't do it all the time, but it's the holidays, so we'll do it now.

Geoff Allix (3m 26s):

So how can you keep away from cheating when everyone else is eating all that food?

Jack McNulty (3m 33s):

Yeah. It's an interesting question, isn't it? It's perplexing to me how people celebrate the holidays by allowing excuses to creep in. And that's really what that is. Yeah. Willpower, it's all about willpower and just being courageous and being strong and sticking to what you believe in. So, for me, when I was just starting out, I mean, I just kept trying to remind myself of what was my goal, what was the whole goal that I was trying to achieve by following the OMS lifestyle and the diet in particular?

Jack McNulty (4m 15s):

And then I wanted to understand what are the goals of OMS? What are the ultimate goals of OMS? Of course, that's keeping inflammation down and improving your blood profile. And so, I really wanted to always remind myself, you know, are my actions, are my thoughts, the food that I'm taking in, is that in alignment with those goals, my goals, and also the goals within OMS? And I think that's just really helpful to always just keep that in perspective as you move along and through the holidays. It certainly helps when you run across situations where peer pressure comes into play, maybe it's family members or friends, they're saying, oh, come on, it's the holidays.

Jack McNulty (4m 59s):

You know, a little cheese is not going to hurt you and that sort of thing, but that's the time when it's really most important to really stick to what you're believing in and moving forward with pursuing those particular goals. I also did something that was, I'm not so sure I really want to share this publicly, but now that I've started, I guess I have to. [Geoff chuckles] I, what I did is I kind of gave those little situations that came up, those little stressors, those little pressures that would come up, I gave them names and I just spoke to them.

Jack McNulty (5m 39s):

So, for instance, this is a bit corny, but I gave cheese the name Charlie, for no particular reason, other than they both begin with C. And so, every time I had an urge at the beginning to, oh, I’d really, really like to have a piece of cheese right now. And then I just talked to Charlie, and I would just say, you know, thanks for coming by Charlie, but we've had this discussion before and I appreciate what you've done for me in the past, but you're not welcome here anymore. So, feel free to leave. And for me, that helped a lot just to kind of play a little bit of a game like that, to give that a particular name and just deal with it that way and acknowledge it.

Jack McNulty (6m 19s):

And then just move on. There was also on the OMS website, there was a blog post a year or two ago from the former Boston Circle ambassador. I believe her name was Carolyn Kaufman, who wrote a nice piece about this particular topic, about not allowing, or not slipping, you know, a little bit during the holiday season. And that might be worthwhile to go check out.

Geoff Allix (6m 50s):

And the other thing is, so we'll come onto roasts, which is a big thing, but also sweets and puddings, cakes, do you have any ideas for sweet food that you could make for the holidays, that you could take to a party, that you can enjoy with your family?

Jack McNulty (7m 12s):

We can probably do a whole hour on this just alone. I think, especially now, there are just so many different ideas available through books, through various community groups, various organizations. It's just so simple to figure out a way to turn something plant-based or to make it a little bit more OMS friendly, you know, depending on whether you're using egg whites or not. So, there are lots and lots of ideas out there. For me, I just like to, I really enjoy this time of year because I like sweets.

Jack McNulty (7m 52s):

It's no secret. I have a little bit of a sweet tooth, but I love exploring and just keep reinventing. For instance, I took a classic holiday drink, eggnog, are you familiar with eggnog?

Geoff Allix (8m 6s):

Mhm. Yep.

Jack McNulty (8m 6s):

And it's so easy to make that plant-based. And so, you know, a veg-nog, if you will, and just cashew-based and create something like that, and then sharing it with other people just really adds a lot of enjoyment to the process. But certainly, to get to the crux of your question, yeah, there are plenty of cakes, cookies, steam puddings, sweet style bread, things like a [inaudible] or something like this. And I think that what you can do very simply is you can go out, search out, for instance, if you're trying to make a cake, just find something that's very ordinary, an olive oil-based cake, for instance, that just pops into my head and then look at that and look to include some Christmas spices to it, for instance, or dried fruits or a combination of those two things, perhaps even adding a little bit of alcohol.

Jack McNulty (9m 9s):

You know, if you want, if that's something that's favorable to you just increase the sort of festiveness of it around the holiday period, it's very simple to do, to change the flavor profile of something that's just normal and make it a little bit more holiday-like.

Geoff Allix (9m 30s):

Because of the steam fruit pudding, it's probably quite compliant. I don't think you need to do much to that, do you?

Jack McNulty (9m 37s):

That's correct, yeah. That's pretty simple.

Geoff Allix (9m 38s):

And that's kind of the basis in the UK, certainly, at Christmas, we have a Christmas pudding, which is kind of steamed and a Christmas cake. And I don't know about other religions, but I mean, that's sort of a fruit cake, and certainly other cultures because my aunt's from Barbados and her mother who's deceased, she used to cook these incredible cakes. So, she would, every month she would fill a tub with dried fruit. And then she would top it up with rum and then each month she would take one of these tubs down and then make this amazingly moist fruit cake.

Geoff Allix (10m 20s):

And then she would put another, she would fill that tub, clean it, fill the tub with fruit and put it on the end. She had six tubs. So, it's every six, it took six months to make it across. And then each month it was topped up with more rum. So, by the end of the six months, there was no recognizable fruit. It was just mush, but it was always heavily saturated in rum. The moistness of it was incredible. I think a lot of the alcohol had probably evaporated off, but I think it was probably, I wouldn't like to drive after eating too much of this. And so, it's a very different culture. This wasn't done, particularly as, you know, a religious thing at all. But just, yeah, you can certainly have a fruit cake and a bit of alcohol, if people have alcohol again, sort of adding that sort of Christmas flavors and everything.

Jack McNulty (11m 13s):

There are two recipes in the OMS cookbook that are very similar to these kinds of things. There's one, that's just, it's simply called a Christmas Cake. I think it has three ingredients. It's along the lines of what you were just describing. Maybe not quite as involved in taking so long, because I think it's a little bit more instant, but it certainly fits the bill. And then there's another one called an Irish Whiskey Cake from Jessica in Ireland. And that was quite fun making that with Ingrid when we were doing the cookbook together, when Ingrid was editing it and we were testing some of those recipes, we had good fun with those particular recipes, actually making them.

Jack McNulty (11m 57s):

They're quite good. And I encourage people to check them out.

Geoff Allix (12m 0s):

And you were saying eggnog is another one that there's probably a generic way of saying this, but there's a drink called Bailey's, which is very popular at Christmas in the UK. So, it's a coffee whiskey-based and cream. And that's something I do every year. I kind of have a vague idea of the recipe, but actually, you were saying the experimentation is as much fun as anything. Because I know that there'll be whiskey in there. There will be like oat milk or oat milk whiskey, a little bit of espresso coffee and something like maple syrup or some sort of sugary syrupy flavor in there, and a little bit of vanilla.

Geoff Allix (12m 46s):

And I just sort of, and actually, it's no problem testing it and then changing it a little bit and testing it some more and then changing it a little bit. The testing is definitely fun. [Both laugh]

Jack McNulty (12m 55s):

Exactly. Put a little [inaudible] eggnog on there and call it something else, nobody's going to know. [Jack laughs]

Geoff Allix (13m 4s):

No, it's good. So, coming onto sort of the main course, if you like, there are two questions here, so, well, I'll start with the second one, which is actually the, that this was [inaudible]... This is my first year with MS and I'm new to OMS. And I am struggling to come up with ideas for food I can enjoy during the holidays. And then just to combine that with, do you have any ideas for an OMS-friendly roast? So, what sort of like main event meals do you think you can cook at home, in a friendly way, because it is, as I said again, we're sort of saying unhealthy, but it's also centered around meat as well, but that could be, ham, it could be turkey, but it's beef as well.

Geoff Allix (13m 46s):

It's often centered around meat.

Jack McNulty (13m 48s):

Yeah, it is. It's the central item around the table. Before I get to that, let me just address the issue with the first part of that question with someone just starting out the first year with MS. Struggling with different ideas of what to make during the holiday season. Maybe the OMS program is brand new to them, struggling, trying to figure out what kinds of foods to eat. Certainly, for most people that have been following OMS for a while, I think this is very relatable. I think most of us dealt with this at some point or another, probably during the first year in fact, and lifestyle changes are stressful and it does take a lot of courage to go through them.

Jack McNulty (14m 34s):

You know, by definition, if you're making a lifestyle change, you're really not only changing your habits, but you're creating a little bit of a distance between what your friends and family might be doing as well. And so that's going to add some pressure and some different challenges along the way. So, what I did during the first holiday is I sat down and I just tried to understand what was it about the holiday foods that I experienced and loved so much? What was it, why did I like those? What were those particular recipes that I enjoyed?

Jack McNulty (15m 15s):

And I, so I collected them, you know, I got in touch with some family members and started collecting a little bit of those particular recipes that meant a lot to me. And I looked out and asked myself, you know, what can I do to make these recipes OMS compliant? And I was really surprised at how simple that was for the majority of recipes. And so for me, it was just a matter of making some slight adjustments. And basically, it was the same sorts of foods. Now, obviously, you're not going to replace the roast at the center of the table. I grew up primarily with, I think we have mostly turkey and ham kind of thing.

Jack McNulty (15m 60s):

So that was the big thing around my table. But you know, if you are in a family situation, I think that it's simple, if your other family members are eating meat or eating things that you're not necessarily eating to just having a discussion, a family discussion saying, you know, does it really need to be the central part of the table? Can we make that a little bit more off to the side and then change the center of the table, to make it some dramatic sort of vegetable preparation. I think if you search around, it's pretty easy to find a roasted cauliflower recipe with grape and pine nut sauce for instance.

Jack McNulty (16m 40s):

It's very dramatic looking and it's very tasty and it's very much OMS compliant or some kind of other gratin or something of this nature. Or if you're eating fish, if that's something you decide to do roasting a whole fish can be really dramatic and replacing that with the traditional ham or turkey or things of that nature. I know that in the Southern hemisphere, you know, it's a much different situation. The weather is warm. People are barbecuing. You know, they're out grilling having different kinds of situations. I know, years ago when I was visiting Australia, during the holiday season, I actually had a Christmas day dinner with Linda Bloom, the founder of OMS.

Jack McNulty (17m 33s):

And it was wonderful having grilled prawns and, you know, a whole fish presented and that sort of thing. It was absolutely no problem for anybody involved. It was such a dramatic type of OMS experience. It's something that sticks with me today, even though I no longer eat fish.

Geoff Allix (17m 51s):

Yeah, I found Australians, they go one way or the other. They, some people go very, cause they still, because it was a British colony, they still stick with the, we have to have the big roast dinner, which is really unsuitable because if you're anywhere in a sort of hot parts of Australia, which is most of it, it's not really the most suitable food to have at that time of year. And also a lot of the shopping centers have got fake snow everywhere, which is very, very strange when you're in that very high temperature. [Both chuckle]

Jack McNulty (18m 20s):

Yeah. I was a little shocked to see Santa Claus dressed, you know, in a surfing outfit. [Both laugh]

Geoff Allix (18m 27s):

And the other thing, I mean, some things I've come across, a vegan Wellington. So a Wellington probably doesn't translate globally, but basically, it's a beef dish traditionally. So it's a dish where you have beef covered in pastry with mushrooms and pâté as well. So it's non-compliant, but basically, it's the idea of it being wrapped in pastry, but there's a number of different recipes. There's a couple of people in Ireland called The Happy Pair, who have a lot of videos available on YouTube. And they've got lots of cookbooks as well. Some of their stuff's non-compliant, most of it, is fairly compliant.

Geoff Allix (19m 10s):

They do tend to fry, which we can obviously dry fry or fry in water for onions, but actually, you get these delicious vegetable-based fillings inside, and they quite often use a filo pastry, which you can buy, I mean, filo pastry is one of those things that I'm sure it's possible to make, but making wafer-thin pastry is certainly beyond my talents. But actually, if you look around, it's not too hard to find compliant, filo pastry, and actually, you can make it really delicious, and that's almost a centerpiece. I mean, certainly, it's too big for one person to eat. And when I have that at Christmas, people will always have some of that and they do, you know, there are lots of different variations available.

Geoff Allix (19m 56s):

So, you can do it as a sort of centerpiece, which is compliant as well. And that, you know, certainly that would go in the center, but also there'll be a ham or a turkey as well. And that's, and I think the other thing for me is it's about all the extras. So, what makes it a celebration meal is all the extra bits because what we call in the UK meat and two veg, which is sort of a traditional meal, it's a bit beyond that. So, it's the things like we have a thing called Devils on Horseback, which are prunes wrapped in bacon and baked in the oven. Well, I thought, okay, this could be redone because I'd seen something about fake bacon where they'd use, if someone could, Deliciously Ella, who's UK based.

Geoff Allix (20m 44s):

And a lot of her stuff uses quite heavily coconut base, but it's worth having a look through some of the things. She creates bacon using rice paper and then make some marinade, which uses liquid smoke, soy sauce, garlic, there are some other things in there, but that's the sort of base of it and soaks the rice paper in this. And then you, and then she used that to make bacon. I thought, well, okay, if she used that to make a sort of bacon-like thing, then I could wrap prunes in that, and then I could bake them. And that would kind of be like, there was an [inaudible] pack and it's exactly like it, I mean, it really gives you that smoky flavor combined with the fruit flavor and it, and it's got the, all that sort of flavor notes that you'd expect.

Geoff Allix (21m 28s):

And so, the extra trimmings, I think that's, you know, and a lot of those things and stuffing is another one we have a lot of, a lot of stuffing is actually it, you get a meat stuffing with sort of sausage. You also get a vegetable one, which is sort of breadcrumb based, a lot of sage and onion. And you can make that because actually, that's fine. So, there are lots of things. Okay. What were the extra bits that you'd have? And can we do those? Can we do red cabbage, is another one that's commonly done. Yeah, absolutely. There's nothing wrong with red cabbage at all. That can be done with, with fruit and yeah.

Jack McNulty (22m 8s):

Going with something as simple as just a potato puree, mashed potatoes, if you will, you know, it's so simple to make that in an OMS compliant manner and make it extremely tasty. It's really not that difficult to do. Absolutely. This is just the, hopefully, it gives people the idea that man, the world is just completely opened up in terms of what you can and can't, you know, what you can have instead of what you can't have. There are so many more different options available at least today, as opposed to maybe even 10 years ago, just different techniques to know about people sharing information on the internet and different books and different places to go look, it's really, really quite easy.

Jack McNulty (22m 58s):

And back to your idea with the Wellington, you know, it occurred to me that with filo dough, there's a recipe on the OMS website for strudel. And there's this strudel recipe on there. I know that because we did a video on that, years ago, and I believe it's still on the website, but this strudel dough is almost identical to filo. The only difference is that it has vinegar in the ingredients, whereas filo dough wouldn't have that. It just allows it to stretch out very, very easily and very thin, but you could take something like strudel dough if you can't find filo dough in your area or make it yourself.

Jack McNulty (23m 41s):

It's very simple to make and just wrap your favorite vegetable-based loaf around a filo or a strudel dough, and basically, you're making a savory strudel at that point, which is also something that's very interesting.

Geoff Allix (23m 58s):

So, to sum up, so we've sort of covered the main course, we've covered a bit of dessert, but then you get onto another thing which comes up a lot and that's chocolates. So, there's a couple of things here. So, we've got, what's allowed on the OMS diet because is chocolate, I'll go on a bit more before you answer the question, but is chocolate an absolute no-no like we just shouldn't have any, or is it something about chocolate that we shouldn't have? And what alternatives there are? And also, there's a lot of terms that come up with cocoa.

Geoff Allix (24m 39s):

So, we'll get onto the Dutch cocoa process, cocoa, cacao, all these different terms that we see and what we can and can't use and what we should and shouldn't do around chocolate.

Jack McNulty (24m 55s):

Yeah. It's a complicated issue. Let's just start with that. And it's very tribal in its nature when you go out and look in the internet and things like this, that it's almost a little bit like, it reminds me a little bit like the split in opinions about things like coconut oil or coconut fat, you know, there's certainly a lot of people out there that still believe that that's a very, very much of that healthy kind of ingredient to use in your cooking. But on the other hand, there's an increasing number of people that realized no, the science says that, you know, it's pretty heavy in saturated fat. Well, the same thing can be said for chocolate.

Jack McNulty (25m 38s):

And to understand that maybe it's helpful to just kind of go through a little bit as to how chocolate is made. And then we can talk a little bit about the different terms along the way. Just gives people maybe a little bit of a better understanding that it's not necessarily what's being presented on the internet and out in the world in terms of all of those wonderful health benefits. Now, having said that there are bits that are healthy, but let's talk about that as we go through. So first of all, it's really important to understand that chocolate in itself is not a whole food. So, a lot of people like to say, oh, they're following this whole food plant-based diet.

Jack McNulty (26m 21s):

And then they're using things like chocolate and cocoa. It's not necessarily a whole food. It's heavily processed actually. So chocolate begins with the cocoa plant and cacao, however, you want to pronounce it. So, it creates this sort of large fruit with a big pod that's filled with seeds. And those seeds are actually where we're getting our chocolate from. So those seeds have a lot of pulp around them and basically, when they're harvested, they're split open and they take out all of that pulp and all of the seeds, and those are left to ferment.

Jack McNulty (27m 1s):

So those are usually fermented naturally. And the fermentation process can be anywhere from a few days to a short period of fermentation. But this is where the whole flavor starts to develop, is in the fermentation process, and eating unfermented chocolate is a proposition I wouldn't wish on anybody. It's really horrible to taste unfermented cacao. It's just not edible at all. Even fermented after being fermented and dried, it's extremely astringent, rather bitter, very acidic, and really not a pleasant experience even in that state.

Jack McNulty (27m 50s):

And so this is what's done when chocolate is harvested. So, the farmers responsible for the fermentation, for the drying process, and then they're all bagged up, and then that's sold on the open market. And so chocolate producers will buy those beans that have been fermented and dried. Those beans are called chocolate nibs. And you maybe have heard that term before, a chocolate nib or a cacao nib or cocoa nib, however, you want to pronounce it. So those are susceptible depending on the packaging to quite a lot of microbial growth. So, they have to be sort of purified once they're purchased.

Jack McNulty (28m 36s):

And just to ensure that there are not a lot of harmful molds or bacteria that are growing on there. Generally, to eat those at that stage, it's again, really, really unpleasant. So, manufacturers roast those cocoa nibs either whole or crushed, one way or another. And once they're roasted, they take on a different flavor. So now they're not in sweetened, but they've mellowed considerably and they have a nutty characteristic and they, all these other aromas are opened up. Once that occurs, then they're crushed, that's turned into a sort of a liquidy kind of let's put it this way, it's cocoa, solid, suspended, and fat, which is basically what you're left with.

Jack McNulty (29m 39s):

So, it's about 50% fat and about 50% cocoa solids. At this point that is pressed or put through what's like a sieve basically and pressed. And so, the fat is drained out and you're left with cocoa solids. That fat is the cocoa butter. It basically has no flavor or very little flavor. It's about 50% of the mass that was in that process. And about half of that fat is saturated. And that's important to understand because that's not necessarily good for people following an OMS lifestyle.

Jack McNulty (30m 21s):

Now, the cocoa butter or cocoa mask that has been pressed that's dried and then ground very fine, that's what cocoa powder is or cacao powder at that point. So, depending on how much the manufacturer presses the mass, determines how much fat is left in the cocoa powder. And that can be anywhere from 1% to up to 20%, depending on the whim of the manufacturer. And that's why it's important to read labels, to see how much fat is actually left in the cocoa powder. Of course, from that point, the manufacturers can turn everything into chocolate by taking the cocoa powder, the cocoa butter and mixing in amounts of sugar or dried milk, if they're making milk chocolate, that sort of thing.

Jack McNulty (31m 12s):

And then that's all combined and put through another process to create chocolate or the chocolate bar that maybe we're familiar with. So, in talking about cocoa, there are some things to be aware of. Along the way, manufacturers can tone down the astringency, the bitterness and the acidity of the cocoa or the flavor by adding an alkaline to it. And that alkaline process neutralizes the acidity. But at the same time, it destroys almost all of the flavonoids, which is the healthy aspect of cocoa.

Jack McNulty (31m 57s):

And so that process is called the Dutch process. It was invented in Holland. That's why it's called Dutch-processed. So, the process of adding an alkaline to the cocoa can occur just before the roasting. It can occur during the actual separation of the cocoa butter into the cocoa mass, or it can occur actually even later to make a chocolate bar taste less acidic and a little bit sweeter. So, it can occur anywhere along the process.

Jack McNulty (32m 38s):

That's why it's difficult to determine the actual healthy aspects of cocoa or chocolate. And it depends on how much, or if the alkaline process occurred. Now with cocoa powder, it's simple to determine that on your own. Most American-made cocoa powder is not subject to an alkaline process. Most European cocoa is, and it's called European on the labels. Sometimes it's called the Dutch process. Sometimes it's called dutched. And if there's nothing on the label, which is also possible, just your visual look will tell you whether it's been subject to this process.

Jack McNulty (33m 24s):

So, one that's Dutch processed will always be much, much darker in color, a really rich color of chocolate brown if you will. Whereas if it hasn't been subject to this alkaline process, it's much lighter in color. Now from a culinary perspective, does it make any difference? It does actually in baking because the fact that the acids have been neutralized will determine the level you can use, and we'll talk about that, if you want to go down the path of baking powder and baking so that, or maybe we can leave that for another episode, but it is an interesting scenario, but the thing that is really important for people following the OMS diet to know is that firs, cocoa powder or cacao is allowed in the OMS protocol, but there's some work to be done on the user end.

Jack McNulty (34m 20s):

You have to look at the labels, you have to understand how much fat is still left there, because that there's a great variety with different manufacturers. Then if you're looking to increase the amount of cacao or cocoa, whether you're consuming nibs or powder, you have to understand, has it been subject to the alkaline method, which will destroy all of the health properties that you're looking to get, the flavonoid bits.

Geoff Allix (34m 49s):

So, if we, if we take it, it's this sort of, if there are three categories, this is what's bad for you. There's what's good for you. And there's a middle ground of neither. So, to get rid of the what's bad for you, we're basically looking at like a chocolate bar would normally have milk in it in the UK. So that's a big no-no. So definitely a chocolate bar, you do see vegan ones, but, but generally, if it's got milk in it, that's a no-no. Let's say it's a vegan one, it doesn't have any milk. Then we're looking at the saturated fat content. So, if it doesn't have any milk and it's got a low saturated fat content, then we're not so much worried about the term cacao, cocoa.

Jack McNulty (35m 34s):

No. They're interchangeable. They are just marketing terms. And they don't, some people that claim to have healthy cocoa or cacao or say that cacao is like raw. It hasn't been roasted, you know, has all of these high flavonoids and et cetera, et cetera, it may or may not be true. There's no way to really know that. And it could be just put on there as a marketing claim.

Geoff Allix (36m 0s):

And I'm assuming both cacao and cocoa are probably translations from [inaudible] or in Peru or some like, and they probably were the same basis anyway. So, we're using our own knowledge. We're saying, okay, there's no dairy in there. It's low-saturated fat. We've got some powder there that isn't bad for us. Now the good for us, so we're avoiding Dutch or European processing. It makes it more likely. And then the other tip is to say, is it a dark brown or is it a lighter brown? Lighter brown is good, not Dutch-process, not European process, but if in doubt, if it's low-saturated fat, if it's dairy-free, it's not bad for us at least.

Jack McNulty (36m 49s):

Right. Right.

Geoff Allix (36m 49s):

Okay. So... [Inaudible]

Jack McNulty (36m 50s):

It's a pretty good summation there. Well, one of the things to just mention just on the pure chocolate, if you, you know, there's all of these percentages, 70%, 85%, 90%, that's what I think, here's what that means. The 70% means there's 70% cocoa product and 30% sugar. Okay. So, the balance of whatever it is, if it's 85%, that means there's 15% sugar. So, in a hundred-gram bar of chocolate, 70% means there are 30 grams of sugar. That's like three tablespoons of sugar in that bar of chocolate.

Jack McNulty (37m 31s):

What it also is telling you on 70% chocolate on your chocolate bar is that there are roughly 35 grams of fat in that 70% hundred-gram bar of chocolate, right? That's a pretty significant amount. And when you think about it, so 35 grams of fat and half of that fat is going to be saturated. So, if you were to sit down and eat what some people otherwise consider relatively healthy, 70% chocolate bar, you're going to get about 17 grams of saturated fat by that indulgence.

Jack McNulty (38m 16s):

That's why it's not recommended within the OMS protocol.

Geoff Allix (38m 23s):

Okay. But we can certainly make chocolate-based food by using...

Jack McNulty (38m 28s):

Cacao.

Geoff Allix (38m 30s):

...cacao, certainly. It might be healthy and certainly not unhealthy. It's relatively straightforward to do that.

Jack McNulty (38m 36s):

That's right. That's right. I think that's probably a good place to leave that conversation, but I think it's really important to put that information out there and then just let people make their own decision, you know, is it something I'm going to really want to have? Yeah, sure. I think having chocolate, you know, in my diet, I have it occasionally with cacao, not so often, but occasionally and yeah, it tastes good. It brightens the mood. There's no question about that. Whether there's a lot of, you know, extreme health benefits, I think that's certainly up for debate.

Geoff Allix (39m 19s):

Yeah. A bit goes into my Bailey's mix-up. That's another thing that goes in there with cacao. Okay. Are there any other tips that we should add for this holiday season?

Jack McNulty (39m 31s):

I think first just smile a lot. And that's what I always like to tell people. I think it's always, I mentioned this earlier, but I think it's just, it bears repeating that it's really, really important to just constantly remind yourself, especially if you're at the beginning of the journey of what your goals are and what are the goals of OMS and following a dietary lifestyle change. That's going to benefit you in the future. You know, the goal of reducing inflammation of improving your blood profile, those are really, really strong, powerful goals to have.

Jack McNulty (40m 15s):

And if you can achieve that through diet, it's going to make a big change to your life for the better, those are positive changes that everybody can make. And I think if you can focus on that in the holiday, that's the best gift that you can give yourself.

Geoff Allix (40m 30s):

I know one final point for me, it's often a time when we're eating out as well. It could be with friends; it could be with work. I have found that a good restaurant will have no problem following OMS recommendations, and I basically point them to the website and give them a little list myself. Also saying, here's the website, and you can find all the recommendations are there. So, every good restaurant I've been to I have had no problem. I think the chefs actually enjoy it. They think, okay, there's something a bit different. And then they'll come back to me saying, how about this? And often with three courses, they'll say this is the starter, main course, dessert.

Geoff Allix (41m 13s):

What do you think about that? Often a choice actually, or sometimes even on the night, they will give me my menu and say, oh, you can choose from these things. And they have no problem at all. And actually, anywhere that they said, no, this is a set menu, is probably not a great restaurant. I think, you know, they are probably, if they can't adapt, then are they just reheating something? Yeah. If it's the point where they can't adapt to it just a bit, then is it really being freshly cooked anyway? And is that a great restaurant? But I do find, just get in touch, give them notice, give them some time, time to think about it.

Geoff Allix (41m 58s):

And I have found that the vast majority of restaurants have no problem. You know, I always sort of, I try and be apologetic and try and, you know, like be understanding. And they're busy. It's a really hard job. And they've not had a problem. I think that they don't have a problem and often the chef will come out to me and say, you know, what did you think of that? How was that? And yeah, I think you can eat well in restaurants. You have to have a level of trust that they are doing what they say, but yeah, I think if you communicate with them, give them notice, then you can find some delicious food cooked for you.

Jack McNulty (42m 34s):

I think you're right. I think, you know, from my experience in working, most of my restaurant experiences occurred in really high-end restaurants. And I found that anytime anybody came in with some sort of allergy or some sort of request for something new, it was fun. I mean, it did break up the service, it generally created a little bit more stress in the kitchen, but sometimes, you know, as cooks, we sort of feed off stressful situations in the kitchen and then just make it a little bit more of a challenge. And it was, you know, the other common feature about chefs is we like to have our ego fed. And if you do make something, you do want to go out and get that feedback.

Jack McNulty (43m 20s):

You want to ask, you know, how was that? And it's a proud moment when you create something that's going to make someone else really happy and satisfied. So most good restaurants, I think you're absolutely right, are going to be able to adjust.

Geoff Allix (43m 36s):

Okay. And with that, I just wish everyone, a happy holiday season.

Jack McNulty (43m 40s):

I do as well. And a very good and fantastic start to the new year.

Geoff Allix (43m 49s):

And I hope you join us again next year.

Jack McNulty (43m 51s):

Thanks, Geoff.

Geoff Allix (43m 52s):

Thanks for listening to this episode of Ask Jack, the special five-part series where we dive into questions from our OMS community about all things food. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Ask Jack is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (44m 40s):

Thank you for your support. Ask Jack is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

Welcome to Living Well with MS Coffee Break #24, where we are pleased to welcome Lieza Vanden Broeke as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Lieza, coming to you straight from Christchurch, New Zealand.

Bio:

Lieza grew up in Belgium before moving with her family to Christchurch, New Zealand at age 12. In her teenage years and early 20s, Lieza was a competitive equestrian. Because of her studies, she gave up the sport and took up running to de-stress from academic pressure. In 2015, while studying for her PhD, Lieza was diagnosed with primary progressive MS at age 25. In October 2019, Lieza went to live and work in Hong Kong for a year. Thanks to Facebook and a fellow OMSer, this is when her OMS journey began and when she realized that overcoming MS was a possibility for her. Lieza returned to Christchurch in October 2020 and experienced her first bout of optic neuritis. Since then, Lieza has regained her sight, returned to full time work, seen improvements in her walking, and has even made progress with her running.

Lieza is the OMS ambassador for Christchurch, New Zealand. She wants to make others aware that overcoming MS is possible, just like her friend in Hong Kong taught her in helping her begin her own OMS journey.

Questions:

Can you describe your life before your MS diagnosis?
How did you find out that you had MS?
What was it like after your diagnosis was confirmed?
How did the pandemic affect you?
How did you discover Overcoming MS?
And so, was it all plain sailing from here?
And so, have things continued to decline?
As a final question, can you describe how OMS has affected you over all?

3 things you should know about Lieza (in her own words):

Laughter is so important in dealing with MS, as is keeping a positive mindset. You are the average of the five people you spend the most time with, so surround yourself with good people.
I love travelling (mainly because of the different cultures). Since my diagnosis in 2015, I've travelled to China, attended two weddings in India, travelled through India and Nepal, visited my family in Belgium and Lithuania, attended a conference in Sweden, visited Sydney, and lived and worked in Hong Kong for one year. MS has not stopped me from living my life. If you wait for the right time to do something, you'll be waiting forever.
I am passionate about sharing my story with other people to help them live a better life. I am just an ordinary person, and I am overcoming MS. One more thing: I love my cat, Albie.

Lieza’s links:

Check out Lieza’s Instagram
Read an article about Lieza in the NZ Herald

Coming up on our next episode:

Coming in mid-November, the season finale of Ask Jack, our special 5-part series where certified OMS foodie and professional chef Jack McNulty answers cooking- and food-related questions from you, our OMS community. Ask Jack will return in 2022 for more bite-sized answers to your food questions. And remember, you can submit your questions for future Ask Jack episodes by emailing them to podcast@overcomingms.org.

Don’t miss out:

S3E43b Transcript

Coffee Break #24 with Lieza Vanden Broeke

Geoff Allix (1s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today, you'll meet someone living with MS from our global Overcoming MS community. Our guest will share their personal perspective on the positive and practical lifestyle changes they have made which have helped them lead a fuller life. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (47s):

So, get your favorite drink ready and let's meet our guest. Welcome to Living Well with MS Coffee Break. In this episode of the Coffee Break, we welcome Lieza Vanden Broeke. Lieza is the OMS Ambassador for Christchurch, New Zealand. Lieza grew up in Belgium and lived there for 12 years until her family decided to move to Christchurch, New Zealand. In her teenage years and early twenties, Lieza was a competitive horse rider. Because of her studies she gave up horse riding and took up running as a way to de-stress from university. In 2015, while studying for her PhD, Lieza was diagnosed with Primary Progressive MS at the age of 25.

Geoff Allix (1m 28s):

In October 2019, Lieza went to work and lived in Hong Kong for one year. Thanks to Facebook and a fellow OMSer this is where her OMS journey began, and when she realized that Overcoming MS was a possibility. Lieza returned to Christchurch, New Zealand and in October 2020, she experienced her first bout of optic neuritis. Since then, Lieza has regained her sight, returned to full time work, and seen improvements in walking, and even made progress with her running. So, to start off with, could you describe your life before your MS diagnosis?

Lieza Vanden Broeke (2m 3s):

So, in my early twenties, I used to be a runner and I did two half marathons and three full marathons. And when my dad and I used to practice on our trail runs, I'd fall over a tree root, over tree roots sometimes and we'd just laugh about it and say, "Oh, how clumsy". But then during my last half marathon, I noticed some strange symptoms. I had blurry vision while I was running and I couldn't judge distance or depth very well and I slurred my words, and I'm finding it hard to concentrate and my legs and feet feel heavy.

Geoff Allix (2m 50s):

So how did you find out that you had MS? That was MS [unintelligible].

Lieza Vanden Broeke (2m 57s):

Yeah. So, during my last half marathon when I was feeling all these symptoms, I had completed 18 kilometers kind of fine. I was doing it with my sister, and then the last three kilometers-- oh, I'll get to that. So, after 18 kilometers, I could no longer run straight or see properly, and my sister had to hold my hand to help me run in a straight line. And the people on the course ended up stopping me because they noticed something was wrong and they gave me lollies and water and told me to sit down, and they were going to call the ambulance for me, but the ambulance was actually busy somewhere else on the course.

Geoff Allix (3m 47s):

So how did that-- So from 18k, that's near the finish, isn't it? So, like what's the half? Because to us 13 miles would be a half marathon. So, 21 is a whole distance? So, you're really close to the end then?

Lieza Vanden Broeke (4m 1s):

Yeah. I was very close to the end. And so, the ambulance was busy somewhere else on the course and because I was so close to the end, I ask them can I just finish by walking and finish their half marathon. And so off I went with my sister, they let me complete or continue. And I walked for a bit then I started running again and the same thing happened. So, we went back to walking and then, because I didn't want to walk through the finish line, I ran the last hundred meters for the finish line, but that was the last time I ran.

Geoff Allix (4m 42s):

Right. So, with full-on symptoms, but you just, I have to run just to get, just because it looks better. I've only done one marathon, but I had, it was-- and I didn't, well, I may have had some minor MS symptoms at the time, but completely unknown to me. And that was pretty hard to run through the finish line then actually, just to do it. Yeah, that's yeah quite amazing persistence. Just to think I'm going to run it anyway. So, what went on from there?

Lieza Vanden Broeke (5m 12s):

So that was in June of 2016. And then of course after the way the things that had happened to me, I wanted to-- well I spoke to my GP and she referred me to lots of specialists and I got lots of tests done, but no answers. So, my family finally paid for a private neurology, neurologist appointment. And then when I met with the neurologist and explained my symptoms to him, he mentioned something about Uhthoff's phenomenon, but that was all.

Lieza Vanden Broeke (5m 52s):

And of course, I asked Google and I found out that people who experienced Uhthoff's phenomenon don't necessarily have MS. So that's what I was hoping for, that I didn't have MS. But so, in November of that year, I was supposed to get my MRI scan. And then, so I got my MRI scan, a few weeks later I saw my neurologist again and he said, I think you have MS. But in New Zealand, I don't have friends like this everywhere.

Lieza Vanden Broeke (6m 32s):

You need to, they need to confirm your MS diagnosis with a spinal tap. Like the MRI by itself is not enough. Is it the same in the UK?

Geoff Allix (6m 44s):

That's the same here. It does differ, I think not everyone in the UK has, we call it a lumbar puncture now. I actually prefer spinal tap because it's one of my favorite films.

Lieza Vanden Broeke (6m 54s):

I didn't even know it was a film.

Geoff Allix (6m 58s):

Oh, you need to watch it. Separate conversation. Yeah. So yeah, it's normally confirmed. I think that there's some bands that they can spot in the lumbar puncture. But certainly, I mean, I was definitely told that basically you have to confirm MS by ruling out everything else that it could be. So, there's no blood tests for MS. They can't just say, "Oh, yep. Give me some blood test. You have MS." They have to basically go through endless things to rule out. So, there's, we have to have tests on our eye reaction times. So that's something they can use. So, they use like a body of different things to try and say, well, it's clearly not lupus or other things it could potentially be so yeah.

Geoff Allix (7m 45s):

Similar, but yeah, we call it a lumbar puncture normally.

Lieza Vanden Broeke (7m 49s):

Yep. So, four days before Christmas, 2016, I got my lumbar puncture and then shortly after I got my diagnosis of Primary Progressive MS. So, a merry Christmas to me. So, I was 25 at the time.

Geoff Allix (8m 10s):

So, what was it like then after that? I mean, especially coming to Christmas, what was it like after your diagnosis was confirmed?

Lieza Vanden Broeke (8m 17s):

Well, my symptoms weren't really bad. Like I couldn't run, but I could pretty much do everything else. So, I thought, you know, not the end of the world and I just continued living my life. So, at the time I was diagnosed, I was in my first year of my PhD in Medical Physics. So, it never even crossed my mind to quit and escape going on. And as I mentioned before, you know, I'm very stubborn and I like to live my life on my own terms. So, after my diagnosis, I traveled to many different countries because I love traveling.

Lieza Vanden Broeke (8m 59s):

So I went to China, I went to two weddings in India. I travelled through India and Nepal. I visited my family in Belgium because that's where I was born. Went to Lithuania. I have some family there. I went to a conference in Sweden, and I finished my PhD. So yeah, I could walk fine, but I couldn't run anymore. And then fast forward a year and a half to 2019, October 2019. And I got to go to Hong Kong for one year, to live and work there.

Lieza Vanden Broeke (9m 43s):

Kind of the same thing, I was doing my PhD in New Zealand, but just continue it as a post-doc in Hong Kong. And I loved Hong Kong. The temperature and humidity are very different to New Zealand, so I guess my system was in a bit of shock. But when I arrived there, it was autumn. So, it wasn't actually too hot. So, I hadn't experienced their summer. But then January 2020 on Chinese New Year, we found out about the coronavirus outbreak in Wuhan which was the center of the outbreak was 900 kilometers away from Hong Kong.

Lieza Vanden Broeke (10m 38s):

So, it's kind of scary.

Geoff Allix (10m 39s):

So how did that, I mean, as much as anything apart from MS, how did the pandemic affect you being in Hong Kong?

Lieza Vanden Broeke (10m 50s):

Well, I was diagnosed, so I couldn't run anymore but I still loved being active. So, I used to go to a gym to do strength training, but of course COVID shut down all the gyms so I can't go to my gym anymore. And my walking deteriorated really bad, was probably partly due to the stress of COVID as well, not just the lack of gym. So, walking 500 meters from my apartment to the bus stop was a real, real struggle.

Lieza Vanden Broeke (11m 32s):

Walking downhill was awful. My legs would shake, and they would feel like jelly. Yeah. So, stress and everything made my MS symptoms all of a sudden worse.

Geoff Allix (11m 45s):

And how did you come across Overcoming MS then from there?

Lieza Vanden Broeke (11m 52s):

So, at [inaudible], when my symptoms started getting worse in Hong Kong, I was alone. So, I didn't have anyone, I kind of felt hopeless. I was experiencing something that I'd never experienced before. So, I turned to Facebook, MS support groups on Facebook for help and advice. So, I joined quite a few of them, but I found them really depressing. And they were negative, you know, people complaining about their symptoms and saying, "Oh no, my life is awful." So yeah, that made me feel even more hopeless.

Lieza Vanden Broeke (12m 35s):

And I just thought my life was downhill from there. And then Facebook actually suggested a group called Overcoming MS to me and I joined not fully knowing what it was. I just liked the name. So, Overcoming MS, so I was like, I want to overcome MS. And the first few posts that I read had people being really kind and helpful. So, I was hooked. And then, soon after I actually met up with a member from the Overcoming MS Facebook page, who also lived in Hong Kong, and she explained the seven step Overcoming MS Recovery Program to me.

Lieza Vanden Broeke (13m 27s):

And she had been following OMS since her diagnosis. And she told me that she'd managed to shrink some of her lesions, and I thought, cool. I want to shrink my lesions so get me into that. So, after meeting her, I followed the diet part of OMS 100% straightaway, a few hours after meeting her. I was taking 50,000 IU of Vitamin D a month. So not enough, but I exposed myself to the sun as much as I could because UV indexing in Hong Kong is quite high.

Geoff Allix (14m 12s):

Yeah. I mean, that's the thing with not enough from 50,000 IU sounds low. If you're in New Zealand or the UK if you're in Hong Kong, and potentially, you might not need to take any. Cause you could just get, you know, a half an hour of sun in Hong Kong and most days would probably be as much as us taking 10,000 a day? Because I'm currently in cold indoors, getting zero minutes from the sun. So, yeah. So, I think, and that's the thing between people always say how much, it's different for everyone, Isn't it? So--.

Lieza Vanden Broeke (14m 47s):

Yeah. That's so true.

Geoff Allix (14m 47s):

You probably just need to get yours checked to what your levels are, but yeah. So sorry. Yeah, go on. And you were saying, what else you were doing?

Lieza Vanden Broeke (14m 56s):

Yeah, so I also bought some resistance bands, and I did some resistance training in my tiny apartment. I had bought some flaxseed oil, so I was taking two tablespoons of that a day. And my friend that I met on the OMS Facebook page made me go to yoga with her. Yeah. So originally, I wasn't really seeing any changes from OMS, but from everything my friend had told me is that I could expect it to take a really long time, like even years.

Lieza Vanden Broeke (15m 37s):

So, I just kept going.

Geoff Allix (15m 38s):

Yeah. They say it's like turning around an oil tanker. You can't, oil tankers don't turn around instantly. This is a very slow process. And that's definitely the way I saw it at first, yeah, I'm not expecting anything. If I exp -- for something you take a tablet and then instantly you'll see a change, but I knew that that wasn't going to happen. I think you have to have faith that that's not something that's going to happen. It's going to be slow, incremental changes.

Lieza Vanden Broeke (16m 8s):

It's easier to have something fast and instant.

Geoff Allix (16m 11s):

Yeah, yeah. You take the tablet that stops the headache, and the headache stops. So, from there, was it all plain sailing and improvements onwards?

Lieza Vanden Broeke (16m 23s):

So, I was still in Hong Kong at this point, but I had declined an offer to extend my contract because my health was more important, I thought. So, I went back to New Zealand and at this stage and in Hong Kong, everything was just a struggle. Every move that I made had to be calculated, like, was it worth it? Am I going to have to pay for it for the next couple of days? I remember even buying like souvenirs for my family. That was, even that was awful.

Lieza Vanden Broeke (17m 2s):

Like I didn't have to go far, but I just, I couldn't do it. So yeah, I was happy to go back to New Zealand because I'd have my family and my boyfriend. So, in New Zealand, if you, oh, during the coronavirus coming into the country, you can only come in if you're a resident or a citizen and you had to do two weeks over of hotel isolation. So, I thought, oh, that's okay. I'll get two weeks of rest.

Lieza Vanden Broeke (17m 42s):

And I deepened, you know, organized all my meals to be OMS friendly. I'd ordered some flaxseed oil from the local health food store. So, I thought life was going to be really good. And then I completed one week of my hotel isolation, and now I was waiting in my room and the vision in my left eye started to go blurry. And a few minutes later, I couldn't see anything with my left eye. So, I was experiencing, I didn't know it at that point in time, but my first bout of optic neuritis.

Lieza Vanden Broeke (18m 28s):

So optic neuritis is often associated with an MS relapse, but I was diagnosed with Primary Progressive MS. So, I'm not meant to have relapses or so I thought. So, I was given a five day course of oral steroids.

Geoff Allix (18m 45s):

So, you're still in isolation at this point? You're in a hotel room on your own? Okay.

Lieza Vanden Broeke (18m 50s):

And no one can touch me. So, a neurologist, I had to call one over the phone and she prescribed me the steroids. And I ended up getting some vision back in my eye within a few weeks. So, at this stage I was back at home, I'd finished a mandatory isolation. I was at home with my family, my boyfriend, and my eye recovering more every day. And I thought, yay, I'm through the worst, but yeah MS has other plans, very unpredictable.

Lieza Vanden Broeke (19m 31s):

So, before the steroids, I could walk, well looked like normal, so downhill, was a struggle, and not for a long time. And after the steroids, I couldn't walk in a straight line, my balance was all over the place. And my legs felt even more like jelly, and I had a limp. Yay. So, I'm not blaming the steroids, it was just probably the natural progression of my MS. But yeah, it was awful.

Lieza Vanden Broeke (20m 13s):

I don't feel like myself, but as I told you earlier, I'm very stubborn.

Geoff Allix (20m 20s):

So, things continued to get worse and decline as well?

Lieza Vanden Broeke (20m 28s):

So nearly everything that I've read and heard about MS is that once you start getting worse, there is no way to get better, at the level we used to be. But I really trusted OMS. So, I kept following OMS and I followed it even more closely. So, I upped my Vitamin D, because I was back in New Zealand in Christchurch, not in Hong Kong. So yeah, I, upped it to 10,000 a day, instead of my 50,000 a month. I started supplementing with magnesium.

Lieza Vanden Broeke (21m 12s):

I started meditating and I went back to the gym. So, in Hong Kong I had a personal trainer. So, I used what I had learned from him, and I started training myself. So, I did strength training mostly by myself, but I like doing checks every once in a while, to see if my MS is improving or not. So, what I would do is at the end of my session, I would walk on the treadmill. And when I first started walking on the treadmill, treadmills are very narrow.

Lieza Vanden Broeke (21m 52s):

So, I had to hold the sides with both hands, and I walked five minutes or even less. And then eventually I moved on to doing one hand for one minute, another hand for another minute, I did that for a few months. Then I did one finger with one hand, one finger of the other hand, did that for a few months. And now I can walk without holding on to anything for five minutes. So that took about six months for me to see the difference.

Lieza Vanden Broeke (22m 33s):

And then once I came back from Hong Kong my eye recovered, I started working full-time at a medical imaging company that I had worked for prior to moving to Hong Kong. And parking's kind of bad where I work. So, because there at the university there are lots of students that steal my carparks. So, I had to walk one kilometer roughly to work every day and one kilometer back. So don't forget that I had a limp at this point, and I couldn't walk straight, my legs felt like jelly.

Lieza Vanden Broeke (23m 15s):

So that one kilometer was awful. My limp was so noticeable. It used to really upset me walking to my car and to work because I thought everyone was looking at me, you know, judging me, wondering what was wrong with me. And then so after I'd finished my job for the day, I'd go to the gym, I went three times a week. I didn't feel like going, but I did it because I knew that it would be good for me. And then I'd come home after work and gym, and I'd cook myself an OMS friendly meal.

Lieza Vanden Broeke (23m 58s):

I was exhausted by the end of the day. And I used to ask myself like, is it really worth it? Everything that I'm doing? But after a few months, my limp walking to work was gone. I don't know where it went, but I was happy to see it go. So, I'd gone back to walking like a normal person for a few hours, at least. And then my limp would be gone in the morning and over lunch, so it would only come back in the evening.

Lieza Vanden Broeke (24m 38s):

And then a few months later it would be gone completely. And now I don't have a limp at all. And I walk five kilometers a day.

Geoff Allix (24m 48s):

Wow, that's amazing. So as a final question, how do you think then that Overcoming MS has affected you overall?

Lieza Vanden Broeke (24m 58s):

Well, I remember when I first joined the Facebook page, I read this quote that said, “the day you plant the seed is not the day you eat the fruit.” And that is something that has always stuck with me. So, one thing that OMS taught me is that recovering from MS is possible. It takes a lot of really hard work, and you have to be determined, you have to plan everything, and it takes a lot of resilience, but it is possible. So, OMS in my opinion, has been and will continue to be for the rest of my life 100% worth it.

Geoff Allix (25m 44s):

Thank you very much. That is an incredibly inspiring story. And thank you for joining us on the podcast, Lieza Vanden Broeke.

Lieza Vanden Broeke (25m 54s):

Thank you.

Geoff Allix (25m 55s):

Thank you for listening to this episode of Living Well with MS Coffee Break, please check out this episode's show notes at www.overcomingms.org/podcast, where you'll find all sorts of useful links and bonus information. If you'd like to be featured on a future Coffee Break episode or have any suggestions, please email us at podcast@overcomingms.org. You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (26m 37s):

Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our newsletter, please visit our website at www.pvercomingms.org. Thanks again for tuning in and see you next time.

View Details

Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based neurologist specializing in MS, who has featured on episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic, so let’s talk about sex and MS!

Dr. Aaron Boster’s Bio:

Dr. Aaron Boster is an award-winning, widely published, and board-certified neurologist specializing in multiple sclerosis and related CNS inflammatory disorders. He currently serves as the Director of the Neuroscience Infusion Center at OhioHealth. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experienced informed Dr. Boster’s drive to do things differently. At OhioHealth, he spearheads a revolutionary model in MS treatment and patient care drawing on interdisciplinary resources and putting patients and families first. Dr. Boster is also an Adjunct Assistant Professor of Neurology at Ohio University Heritage College of Osteopathic Medicine, and a former Assistant Professor of Neurology at The Ohio State University, where he also formerly headed the Neuroimmunology division. OMS has recently been pleased to welcome Dr. Boster as one of the newest additions to its Board of Trustees.

Dr Boster has been intimately involved in the care of people impacted by multiple sclerosis; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energize and empower people impacted by MS.

Dr Boster grew up in Columbus, Ohio and attended undergraduate at Oberlin College. He earned his MD at the University of Cincinnati College of medicine and completed an internship in Internal Medicine and Residency in Neurology at the University of Michigan, followed by a two-year fellowship in Clinical Neuroimmunology at Wayne State University.

He lives in Columbus, Ohio with his wife, Krissy, son Maxwell, and daughter Betty Mae.

Questions:

Aaron Boster, welcome back to Living Well with MS, and thanks for joining us again. Before we dig into this episode’s main topic – sex and MS – there’s a recent bit of news to mention. You’ve joined the Overcoming MS board of trustees. There is no doubt OMS is happy to have someone of your medical and clinical expertise on its board. How has the experience been so far and what compelled you to join in this capacity?
Let’s shift gear into our main topic – sex and MS. This is quite important and perhaps not discussed as often as it should be. First off, how would you define sexuality in the context of MS?
Is it common for people with MS to experience sexual dysfunction or other challenges with having a normal sexual life?
Do the types of sexual dysfunction differ depending on the types of MS you have?
If a man is experiencing sexual dysfunction connected to his MS, what are his options for overcoming or managing it?
What if you’re a woman experiencing sexual dysfunction connected to your MS. What are your options for managing it?
Some people with MS encounter some sort of physical impediments or disabilities. How might that affect your sexual life and what can you do about it?
Is there any specific research currently going on that studies MS and its influence on a person’s healthy sexual life?
If there was one critical takeaway you could share with anyone in our audience experiencing sexual issues related to their MS, what would it be?
Before we wrap up, and on a totally different note, I couldn’t let someone of your expertise leave the guest chair without asking you a question of personal interest to me as well as many other members of our community – about supplements. There are many out there to choose from, from Co-enzyme Q10 and probiotics to things like Ginkgo Biloba, Echinacea, St. John's Wort, Valerian, Ginseng, and many more. Is there a general framework for deciding whether to try a supplement and are there any whose positive effects are supported by an evidence base?

Links:

Check out Dr. Boster’s popular YouTube channel covering all aspects of MS.
Boster is now a trustee of Overcoming MS.

Coming up on our next episode:

In just a few days, you can get another dose of our podcast with the premiere of the 24th installment of our Coffee Break series, as we travel (in the eco-friendly virtual sense) to Christchurch, New Zealand to meet another fascinating member of the OMS community, Lieza Vanden Broeke. Lieza has a remarkable personal backstory, and her experience with MS will provide insights and inspiration to our global community. Plus, she’s also the ambassador of the OMS Circle in Christchurch. Thanks to Lieza for her candid interview, and to our listeners for being part of the OMS podcast family!

Don’t miss out:

S3E43 Transcript

Let’s Talk About Sex (and MS)

Geoff Allix (Intro) (2s):

Welcome to Living Well with MS, the podcast for Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (Intro) (44s):

Now without further ado, on with the show.

Geoff Allix (48s):

Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based award-winning, widely published, and board-certified neurologist, and the founder of the Boster Center for Multiple Sclerosis, who was featured on past episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic. So, Dr. Aaron Boster, welcome back to Living Well with MS.

Geoff Allix (1m 28s):

And let's talk about sex and MS.

Dr. Aaron Boster (1m 30s):

Thank you so much for having me. I'm delighted to be back. And you're right, this is an underappreciated topic which needs to be discussed much more frequently. So, I'm glad that we're doing this today.

Geoff Allix (1m 41s):

Before we dig into the main topic of sex and MS, there's two things I'd like to mention. Firstly, I just want to call out that your YouTube channel, which is very easy to find, if you just search for Aaron Boster on YouTube, you'll find it. In fact, if you search for MS on YouTube, I think it would come pretty high. It is personally, I think the single best resource for a person with MS.

Dr. Aaron Boster (2m 7s):

Wow.

Geoff Allix (2m 8s):

Hugely it is... I don't know how many videos you probably are much more aware than me, but I'd say hundreds. There are huge numbers.

Dr. Aaron Boster (2m 15s):

Yes, 450 some.

Geoff Allix (2m 18s):

Right. So, whatever topic there is an episode there, and I've found it incredibly useful, incredibly informative. So, I would –

Dr. Aaron Boster (2m 25s):

So, nice of you to say thank you.

Geoff Allix (2m 27s):

Well, yeah, I mean, I just think it's, I encourage everyone just going to have a look. It's just, you don't have to look at every topic. Recently, there's one on cannabis and MS. At which in the UK, the police would have different opinions. So, bits aren't going to be, you know, I mean appropriate for everyone. But yeah, there's such a wealth of resources there. So, the second thing, you've joined the Overcoming MS Board of Trustees.

Dr. Aaron Boster (2m 56s):

Yes.

Geoff Allix (2m 56s):

Yeah, I think everyone at OMS is happy to have you on board, and your medical and clinical expertise. So, what compelled you to join? And how has it been so far?

Dr. Aaron Boster (3m 9s):

Thank you. Let me answer those in reverse order. Today, it's been awesome. There's a significant onboarding process, and I've had a great time meeting the other Board of Trustees members, getting to know the Chair, the CEO, and really starting to get to understand the organization. So far, I've participated in one formal board meeting. It's been pretty great so far. I am really excited for what's coming with Overcoming MS over the next couple years. So, the fact that I get to participate is really, really special to me. Now, what compelled me to do it? Really two things if I may. The first thing is, if you look at my style of MS, my brand of delivering MS care, and the tenets that I have developed and talk about and teach.

Dr. Aaron Boster (3m 58s):

And you look at the tenets of Overcoming MS, they are remarkably convergent, like remarkably so. When I list out being five for five, when I talk about the importance of family, I mean, we just listed six of the seven. I mean, we're very, very converged. That was one thing that as I started to learn more about Overcoming MS, I said, “Wow, these folks are really thinking along the same lines as me.” The second thing is, getting an MS diagnosis is scary. And it's a moment in time when people aren't sure what to do. And in certain locations there's awesome resources to shepherd someone through an early diagnosis.

Dr. Aaron Boster (4m 41s):

But in many locations, that's probably lacking, and access is a major issue. And so, if you're in a spot where you're recently diagnosed or you don't know what to do, reaching for something that is ready made and awesome is a beautiful thing. And I'll be transparent. In my religion, there are a set criteria of things that you're supposed to do when someone dies. Okay. So, if you don't know what to do when you're grieving the loss of a loved one, there's some set things you're supposed to do: You're supposed to grieve for a certain amount of time. The community helps you in a certain fashion. And really, in the absence of knowing how to cope in grief with a loss, that is an awesome structure to have.

Dr. Aaron Boster (5m 24s):

And in many ways, I think for someone newly diagnosed with MS, this is a beautiful thing to say, “Sure do this.” So, for both of those reasons, I'm really, really excited to participate. It's been a great experience so far. So more to come.

Geoff Allix (5m 39s):

And one thing I would say that you have that Overcoming MS doesn't, but should do, I think as an extra pillar would be drink more water. And that's not an Overcoming MS thing. So, we're on a podcast. You can't see me. I'm just picking up my glass this very moment.

Dr. Aaron Boster (5m 56s):

Sure. And I’ve got water in my mug, yeah, yeah. So, I’m

Geoff Allix (5m 59s):

And I think that's, I know we're going off-topic here, but I think that it should be. It's such a simple thing. And because a lot of us have bladder issues and things, and then you sort of say, “Okay, maybe drink less because that's a bladder buster.” I even know it. I know, if I didn't drink enough, then I feel worse. It's one of those instant things. So, some of the things with MS, slow burn as a summary instant. Stress is instant, dehydration is instant.

Dr. Aaron Boster (6m 27s):

Absolutely spot on. And, you know, I like to challenge people sometimes because I'll say, you know, drink more water, and they'll say something to the effect of, "You sound like my mom." You know, or like, that's silly advice. I'll say, “Okay, but try it.”

Geoff Allix (6m 39s):

Yeah.

Dr. Aaron Boster (6m 39s):

Try drinking an adequate amount of water for like three days and see what happens. You know because people are shocked. They're like, “Oh, my gosh, I really do feel better.”

Geoff Allix (6m 45s):

Yeah. And you've made it really simple as well. So, I just drink a pint or half liter with each meal, and then drink a pint or half liter between each meal.

Dr. Aaron Boster (6m 56s):

Yeah, then you're done. You just did.

Geoff Allix (6m 59s):

Yeah.

Dr. Aaron Boster (6m 59s):

Spot on. Yeah. Then you're good for the day. And unfortunately, so many people, and you give a great example as to why they may shy away from water intake, and inadvertently make their situation so much worse.

Geoff Allix (7m 10s):

Yeah, so I'd like to. Yeah, so on your next board meeting. So, can we add an extra? Drink more water.

Dr. Aaron Boster (7m 19s):

Okay. I'll bring it up. As we talk about sex, this, we will come back to this whole bladder thing. It is very, very related.

Geoff Allix (7m 27s):

I was going to think, yeah. I was thinking you can't say, drink water during sex, that wouldn't work. But anyway. So, let's get on to our main topic, sex and MS. So, it's a very important one. I mean, it's obviously very important for the survival of the species as much as anything, but it's an important topic. And probably not discussed often enough, often embarrassing. So, how would you define sexuality in the context of MS?

Dr. Aaron Boster (8m 2s):

So, you know, sexuality arguably would be defined as humans’ ability to experience sexual feelings. It's a really broad blanket term for a lot of things related to sex. So, my first comment is I don't think of sexuality in someone impacted by MS any different than I do in any other human. And I think that's actually a very, very important distinction because there's nothing unique about the sexuality of human being if they happen to have a chronic illness or not. Now, playing out sexual behaviors, intimacy, all these wonderful things, MS can risk interfering.

Dr. Aaron Boster (8m 46s):

And that's where we get into a really important discussion. And that's where sometimes we really need to try to help educate and intervene.

Geoff Allix (9m 1s):

So, is sexual dysfunction more common for people with MS? Does it increase the chances?

Dr. Aaron Boster (9m 7s):

It certainly is. Now, you know, MS is a situation where the immune system can affect any part of the supercomputer that runs your body - the brain, and the superhighway - the spinal cord. And unfortunately, there's plenty of specific areas in the brain and spinal cord where if there's damage, it could interfere with sexual functioning. And so, the spinal cord is a really good example. Very commonly, when someone has a transverse myelitis, inflammation in their spinal cord, then they may find that their limbs are numb or kind of weak. But they also will very likely notice problems with the down theres – bowel, bladder, and sexual function. And this is, unfortunately, all too common in the setting of MS.

Dr. Aaron Boster (9m 48s):

I would also say that it's oftentimes overlooked by the MS clinic, something that's kind of glossed over and not discussed. And given that it's somewhat of a taboo topic in casual conversation, I think patients are sometimes a little bit nervous to bring it up.

Geoff Allix (10m 8s):

And does the type of MS you have whether it's relapsing or progressive, does that affect the types of sexual dysfunction you might have?

Dr. Aaron Boster (10m 16s):

I would say no. I would rather think about the kinds of sexual dysfunction a little bit differently. Not so much related to the phenotype of MS. So, someone with relapsing MS, or Primary Progressive MS, Secondary Progressive MS, what have you, I don't see different kinds of sexual problems. I would run about it as follows: primary sexual dysfunction, secondary sexual dysfunction, and tertiary sexual dysfunction. So, just to share a couple quick definitions that helped me when I'm thinking about this. Primary sexual dysfunction is a problem with the circuitry and hormones of sex. So, when the down theres are stimulated, there's a lot of circuitry that goes on to assist in intercourse.

Dr. Aaron Boster (10m 58s):

That message in the down there has to go all the way up to the brain, through the spinal cord, where the brain interprets the activities and says, “Ah, okay.” And then it sends messages from the brain back down to the down theres to do certain things. We're talking about arousal, orgasm… excuse me, arousal, either erection or lubrication depending on the gender, and then eventually orgasm. And so primary sexual dysfunction can result from MS damage in the brain and spinal cord. And what can happen is you can end up with problems in the circuitry. And so, you can have difficulties with any of those things - arousal, erection, maintaining an erection, ejaculating or arousal, lubrication orgasm.

Dr. Aaron Boster (11m 43s):

The other piece to this when I think about primary sexual dysfunction is imbalances in hormones. And I have, for several years now started to routinely screen gentlemen, for example, looking at testosterone levels. Not just to help with sexual function, but there's also ramifications through other aspects of MS, believe it or not. So that's kind of primary sexual dysfunction. And we'll talk maybe a little bit later about how we overcome those things. Secondary sexual dysfunction is important and very often overlooked. And it's a situation where there's problems with sex, not because of the circuitry of sex, not because of hormones, but because of MS symptoms that make things not sexy.

Dr. Aaron Boster (12m 24s):

For example, if you're having intercourse, and you lose your bladder, it may stop the activity. I mean, you know, that's like scary to a lot of people. They would think, “Oh my goodness, gracious.” And if you're having intercourse and your leg goes into an extensor spasm, it's extremely painful, you're not having sex anymore. Yet even things like motor fatigue can make it so that, you know the activity of intercourse can become challenging, and these are all secondary sexual dysfunction issues. This is where, to be honest, we can really gain a lot of ground. Now, tertiary sexual dysfunction, I would define as not so much the circuitry of sex or symptoms that interfere with sex, but it's more of a psychological phenomenon where the human being doesn't feel sexual.

Dr. Aaron Boster (13m 11s):

They don't feel like a sexual being. They feel maybe like an they feel ill. They don't feel that they can be sexy. And so, when I think about sexual dysfunction, I find it most helpful to kind of try to bucket things into those categories. And oftentimes, we're dealing with all three.

Geoff Allix (13m 35s):

And so, if we break it down into men and women, what options would a man have if he's experiencing sexual dysfunction connected with MS? Or how could that be managed or helped?

Dr. Aaron Boster (13m 50s):

Absolutely. And so, if we first think about arousal, and this is actually true for both men and women. I'll make sure to give distinctions. When we think about arousal, the first thing I want to do is I want to look at their medicines. And I want to look and see if I have them on medicines that can impair arousal. And you'd be shocked at how many can. So, unfortunately, many of the SSRI and SNRI antidepressants, which are used very commonly in humans can impair libido. And so, you may have significant sexual dysfunction because of a high dose of Zoloft, for example. And so, we need to look at that. And there's a host of other medicines that could interfere with arousal.

Dr. Aaron Boster (14m 31s):

Also in the setting of arousal, for gentlemen, we'll look at testosterone levels, and look and see if his testosterone, which I would like to be above 400 is down like in the 100s. And maybe that's a component as to why that's a problem. Another very, very, very common because of loss of arousal or interest in both men and women is depression. Now depression is twice as likely to be experienced by a person impacted by MS compared to the general population. And one of the hallmarks of depression is something called anhedonia. Where just stuff that you enjoy just isn't really that much fun anymore. Like if you do really like book club or watching TV, doesn’t do it for you.

Dr. Aaron Boster (15m 10s):

And so that can happen with sex, which is a major thing. And because depression is so common in MS, we would be foolish not to screen for that, or ask the question, could that be related to arousal? And so other things that we think about in both men and women, recent psychosocial stressors. You'll hear about a guy lose his job, and then he's not interested in intercourse, because he's really dealing with, he's kind of stressed out. So, I really require not just some laboratories, but also a careful history and some open honest communication when dealing with the gentleman's issues as it relates to arousal.

Dr. Aaron Boster (15m 56s):

The women, I guess, if it's okay with you, let me answer the same question for women just really quick.

Geoff Allix (16m 2s):

Yeah, it's okay.

Dr. Aaron Boster (16m 3s):

So, with women, we will look at all the same things I just said. Right? Hormone levels included. And then in depression included in the like. With women, there's actually interestingly two FDA approved therapies to help women with low libido, which is really cool. And interestingly, not known by many, many people. So, there's a medicine which is approved in the United States of the trade name Addyi, A-D-D-Y-I. And I'm spelling it for you because I'm blanking as I talk to you about the generic name. So, I'm sorry. And that is a pill taken once a day, which in about half of our patients results in improving female libido quite substantially.

Dr. Aaron Boster (16m 46s):

There's also an injection that's administered by urologist. And I don't, I've never prescribed it. It's called PT141. And this is also a therapy that can be very, very helpful in helping with female libido. So, there's actually more options to help with female libido than male. And so that's the first area. And I want to stress that you can't really skip over it. It is so terribly important. When we then talk about the second phase of things that would be erection for gentlemen. I like to divide my thoughts about erections into half. There is obtaining an erection and then maintaining an erection adequate for a penetration of vagina, anus, mouth, whatever it is that you're trying to accomplish that evening or day.

Dr. Aaron Boster (17m 28s):

And so, with erections, we want to find out, are you able to -- do you have erections when you wake up ever? Like it is the physiology, the circuitry of erections, is that intact? Are you able to maintain an erection on your own, like through masturbation, for example? And during intercourse, what's going on? And this conversation is important because, again, we have to think about primary, secondary, tertiary options. Primary sexual dysfunction, most commonly occurs because of spinal cord involvement in MS. And what essentially happens is the down there are stimulated and as the message is going up the spinal cord it dies.

Dr. Aaron Boster (18m 9s):

So, the message is never delivered to the brain. So, the brain is not informed of the dealio. So, in this situation, something that can be extremely helpful is a plug in the wall vibrator, right? So, I sometimes on podcasts and whatnot have talked about the vibrator trick, which I'll share now. In the vibrator trick is where you spend 60 bucks American and you purchase a plug in the wall vibrator. And my favorite brand is Hitachi Magic Wand. I don't have a contract. Though I would do a branding deal with them in a heartbeat until –

Geoff Allix (18m 43s):

I believe, they're mentioned on the Sex in the City way back.

Dr. Aaron Boster (18m 47s):

Yeah, certainly. Certainly. So, this is marketed as a back massager. And it's a plug in vibrator. And the reason it's so important is we need kind of like overdrive stimulation, right? A double D battery vibrator is not going to cut it for this purpose. And then what you do is you apply a water-based lubricant to the genitalia because that increases skin sensitivity. And then you apply the plug in the wall vibrator, you know, the hardcore power from the wall, and you apply it on the glands, penis, you apply to the head of the penis, you applied it under the testicles, you apply it somewhere where it feels good. And this is providing overdraft stimulation. Just to make the point clear, I'll use an example of us talking right now.

Dr. Aaron Boster (19m 29s):

So, I'm talking using my indoor voice because there's no interference between essentially my mouth and your ear, even though we're across the continent, and there's microphones, and speakers and stuff involved. Now, let's say that we were having this exact same conversation during business hours. I'm in my lobby of my office. Today is Sunday. But if this was a busy business day, it would be super loud in here. And you wouldn't be able to hear me when I used my indoor voice. So, I would have to use overdrive stimulation. I would have to scream, and really project really loudly so that you could hear me. And that's what we're doing with a plug in the wall vibrator as it relates to intercourse. We're providing overdrive stimulation so down there can get the message to the brain and let the brain know what's up.

Dr. Aaron Boster (20m 13s):

Now the advantage of a plug in the vibrator is there's no side effects. It's relatively inexpensive. And you can do it by yourself during masturbation. You can do it before intercourse as a form of foreplay. You can literally hold the device between you and your partner with continuous stimulation during intercourse. And it works well for both men and women. So, everything that I just said with regards to obtaining erection can be applied to maintaining an erection by using the vibrator. And we have taught some gentlemen, if they have difficulties they'll withdraw, and then they can apply the vibrator to the shaft of the penis, it will become adequately erect again, and they can continue having fun.

Dr. Aaron Boster (20m 55s):

And so, this is a very helpful tool. Now, probably the most widely utilized tool is a little blue pill, right? So, Viagra, Cialis, and the like are very, very helpful medicines, in helping gentlemen obtain and maintain erection, pharmacologically, they're superb. And so, if there isn't a cardiovascular risk, why you can't handle the Viagra or Cialis, what have you, that's a very useful tool. Taken about an hour before intercourse works best on an empty stomach. You do have to worry about light-headedness, and there's some blood pressure concerns. And that can make a really big difference in a guy's life. You know, it's of note that if you want to make an adult miserable, mess up their ability to eat good food or have sex, and then we'll be miserable.

Dr. Aaron Boster (21m 41s):

And MS risks interfering with sex for sure. And so, a little blue after dinner mint can really change a guy's outlook on life. Now, again, on the topic of obtaining and maintaining erection, testosterone level is very, very relevant. Now, there's a bunch of other things you can do. For example, intracavernous penile injections. So, before the era of pills, we had the shots on the side of the penis, and everyone listened going, “Ooh!” But in exchange for that route of administration, you have a fantastic erection. And sometimes when pills don't work, we still go back to those tried-and-true methods.

Dr. Aaron Boster (22m 24s):

Other things that you can do if you're a gentleman, using a device, you can trap the erection. So, you can use a vacuum device, which can be very, very effective. And if you're really serious about an erection, and those things aren't working, urologists can actually do penile implants. I have some patients who have been very, very happy with penile implants because nothing else was really working for them. So, you know, you might say, how dedicated are you to your erection? Because if you're dedicated enough, we can guarantee that you'll be able to be erect.

Dr. Aaron Boster (23m 6s):

Getting into the same questions with women, we're really dealing with lubrication, alright? And engagement of the tissue to allow adequate arousal. And so, that's kind of the equivalent for women as erections are to men. And there's several ways of addressing difficulties that a woman may have with lubrication. So, one thing you can do is apply a water-based lubricant. Very straightforward, very, very effective. Another option is to apply an estrogen cream to the vulva. If you're not taking systemic hormones, and there are reasons why some women may not be appropriate for taking systemic hormones, because of cancer risks. Applying a hormone cream topically is really great because it's just absorbed locally.

Dr. Aaron Boster (23m 51s):

So, there's no systemic risks. But applying an estrogen cream can really help with engagement and with lubrication. We very commonly prescribe a compounded cream which is called scream cream. And it is what it sounds like. It's a compounded mix, which includes Viagra and theophylline and several other agents which help in increase blood flow and encouragement and help with lubrication. And so, someone may have a can of scream cream that they use in preparation for intercourse. And so those things can be very, very helpful. Obviously, adequate clitoral stimulation, or vaginal stimulation through the same plug in the wall vibrator is a really smart tool.

Dr. Aaron Boster (24m 32s):

And that can help with lubrication. Now, the tips for orgasm, for achieving orgasm are all along the same lines. Really we have to bring, for both men and women - primary, secondary, and tertiary measures to the table to achieve orgasm. And sometimes we have to take extra measures depending on the specifics of the individual. But the point that I hope I'm conveying is, is that: number one, there are a lot of options to make this better if you're a boy or girl. And number two, it's worth it. Right? It's worth it to have an excellent sexual experience. Sorry, that was a little bit of a long-winded answer.

Dr. Aaron Boster (25m 14s):

I got a little carried away there but talk about that.

Geoff Allix (25m 15s):

No, no its good. And so, what you've talked to us about was very medical. But you mentioned especially the tertiary side of it.

Dr. Aaron Boster (25m 25s):

Yes.

Geoff Allix (25m 25s):

I love the thinking as well.

Dr. Aaron Boster (25m 26s):

Yes.

Geoff Allix (25m 26s):

So, is it worth getting counseling, maybe couples counseling? Because still, it's difficult to -- and this happens, whether you have MS or not. It’s to convince the other person it’s useful.

Dr. Aaron Boster (25m 34s):

Super, super important. In fact, if you said, “Aaron, what's the number one tip?” The number one tip is none of the stuff I just mentioned. The number one tip is talking to your partner. So, let's discuss that. Very commonly, independent from having a chronic condition like MS. Very commonly, we have hang-ups about sex, and we have areas of concern or embarrassment, or topics that we're shy about. For example, many people are reluctant to flatulate in front of their spouse. Right? So, that's the thing. Like, you know, we don't want to do that. And so, talking about sex is not something that most of us are just completely at ease doing.

Dr. Aaron Boster (26m 20s):

Even with our spouse, even with a monogamous partner of 30 years. And when you have a chronic condition, like multiple sclerosis, which can, as we've talked about interfere with the circuitry and the success of intercourse, it adds complexity. It doesn't make it easier, it makes it harder. What I have found in talking to families for over a decade and a half now. And I'm very, very open about this topic in that oftentimes, the two members of the couple would love to talk to the other person. They are dying to talk the other person about this, and they are nervous.

Dr. Aaron Boster (27m 4s):

And when they broach a conversation, it's almost cathartic because together, they can game out an earth shattering, toe-curling, blood-curdling orgasm that would set land speed records and make the neighbors call to make sure everyone's still safe. And it's accomplished because of communication with the partner. Say, and let me be a little bit granular. One partner may really enjoy a particular position in sex because it's really fun for them, which might cause the other partner with MS to go into spasms. Or it may make the other partner develop truncal ataxia, or maybe it overheats that partner. And the person with MS might not be sharing that.

Dr. Aaron Boster (27m 46s):

They may not be telling the spouse or the partner, “Hey, listen, when you lay on top of me like that, you're a heavy dude, my body gets heated up and I can't feel anything. Get off me!” You know, simply talking about changing something as simple as a sexual position might be the answer to really meaningful intercourse. So, you are very spot on in bringing this up. And if you are uncomfortable talking about the topic, let's game out several things that you can do to broach the situation. Okay. So you could, for example, do couples counseling. Couples counselors are very wonderful because they can help be sounding boards.

Dr. Aaron Boster (28m 27s):

“Did you hear what he just said? Let me repeat it for you.” I mean, you know, they're fantastic kind of notes. I really like couples counseling myself. There are sex counsellors, alright? I mean, maybe another thing to do is just to have the person listen to our podcast that we're doing right now and say, “Hey, the little balding, hyper neurologist in Columbus, Ohio was saying we should talk about sex. I mean, what do you think?” And maybe that broaches a conversation. But if you can sit down and talk about sex, and really what I would want you to bring to the table is the following: What are your goals? Seriously. Is your goal to help your partner achieve orgasm? If that's a goal, state it. State that's a goal.

Dr. Aaron Boster (29m 6s):

Is your goal to simply be intimate and touch one another? I mean, these are things that you should talk about. Are you going to orgasm? State the goals. If there are certain things that you really like, and really don't like sexually, particularly the don't like part. “You know, I know that you're really like doing blankety blank to me, and that's very sweet. Except I can't feel it. I can't feel it.” So, you doing that is awesome. I just want to let you know that like I don't even notice that you're doing. So, FYI. I mean that kind of communication is really valuable. Because then the partner will say “Well, geez, Louise, let me not do that. Let me do something different.” And I think what you'd find is if you have this conversation, it will improve your sex life.

Dr. Aaron Boster (29m 55s):

The conversation will lead to a better experience. It really will.

Geoff Allix (30m 1s):

And so, we've talked a lot about that there could be nerve damage between brain and sexual organs and that's affecting your ability to have an erection, lubrication, orgasms. But what if a person with MS has physical impediments or a disability? You know, apart from their sexual organs don't work properly.

Dr. Aaron Boster (30m 22s):

Yes.

Geoff Allix (30m 22s):

How could that affect their sexual life? What could they do about that side of things?

Dr. Aaron Boster (30m 30s):

So that involves playing smarter, not harder. Let me give you an example. If we think about a traditional Western missionary position of sex, the guy on top in this like, misogynist example, I apologize. It's kind of doing push-ups, right? Which is a tremendous amount of physical activity, keeping the core body strong and the arms, it's a lot. So that might not be feasible for someone. Right? Now, instead, install in your bedroom an eye hook in the ceiling beam, and install a sex sling. The whole world changes now. You place a partner on a sex sling, you can move them around, spin them, pivot them, push them, thrust, move, up, down, left, right, and it takes almost no effort, right.

Dr. Aaron Boster (31m 20s):

And so, by changing from good old-fashioned force of will to using something like leveraging a sex sling, or using a wedge, they make these awesome wedges, which is kind of like bringing a gymnastics room into your bedroom. Where you can position a partner on a wedge. If you have problems in certain positions, again, this goes back to the talking about planning, don't do those things. And if other positions are more successful, do those things. Let's use another example of bowel and bladder issues. Very common. Someone has such fear of incontinence of urine or stool, they will not have sex, which is a travesty.

Dr. Aaron Boster (32m 3s):

So, what can you do instead? You can, if necessary, do an inner in self cath, and empty your bladder completely, 100% guaranteed prior to intercourse. If you are prone to urinary tract infections, have your neurologist give you antibiotics that you take before or after sex, alright? If you are having trouble with constipation, you can spend a day or two pre-sex emptying out and getting completely evacuated. Even if that involves an or you know, digital rectal stimuli, or whatever is necessary, you can prepare for that. Do you see what I mean? There's a bunch of things that we can do. You have dyspareunia, which is a terrible word.

Dr. Aaron Boster (32m 47s):

It means pain with sexual sensation. So, the act of sex hurts. We have to look into, why you have dyspareunia? If it's because of spasms of the vaginal canal, we might use a rectal suppository of valium before intercourse. If it's because of neuropathic pain and burning sensation, we might use a numbing cream. Right? My point here, is if we can identify -- because in my mind what you're saying those are all secondary sexual dysfunctions. If we identify what the problem is, we can game out how to make it better. Then if you remember nothing from my answer, I simply want you to remember sex swing.

Dr. Aaron Boster (33m 28s):

Sex swing. Okay.

Geoff Allix (33m 29s):

And in the last few years, the amount of research in MS medication has just leapt forward. I mean, it's gone from -- so my father had MS. There are no real treatments. When I first was diagnosed. Not really, like what? Five years ago? There were treatments then but there must be 4, 5, 6, 10 times that many now. That seems to be it's really escalating. So, are there any treatments going on or studies going on for people with MS, and their ability to have a healthy sexual life?

Dr. Aaron Boster (34m 5s):

So, in preparation for our discussion, I actually looked this up because I wanted to be able to answer this question if asked. So, yay. And I went, the way I look up information like that is at the clinicaltrials.gov, which is a site for any clinical trial that's registered by the United States government. And there were 125 hits for when I searched for multiple sclerosis sexuality. And I looked through the first 10 or 20. All over the world, France, Turkey, Louisiana, Cleveland. So, there were trials throughout. Now, almost all of these are investigator-initiated trials. You know, so a clinic running a small study.

Dr. Aaron Boster (34m 46s):

But my point here is yes, there's a lot going on. Looking at testosterone levels, looking at various pharmacotherapies, looking at behavioral therapies, a lot of stuff. And so, I hope if you're listening to this, it's reassuring to know that clinic doctors and researchers alike recognize this is such a critically important aspect to life that we're investing resources to try to help you make it better.

Geoff Allix (35m 9s):

And you mentioned about testosterone. So, getting testosterone checked is that part of blood test?

Dr. Aaron Boster (35m 13s):

Yes. So, the way that I do it in clinic is I draw a morning level of testosterone. And the reason it needs to be morning, a gentleman's testosterone is highest in the morning, and it goes down throughout the day. So, if you tested in the evening and have a low value, you don't really know if it's just because of the diurnal, you know, the fact that it drops down. So, you want to get the best most accurate reading. You do that in the morning. You know testosterone level in the morning. I get it on two separate occasions. And if it's low, the total testosterone is low, that's a blood test, then that opens up the opportunity to treat with testosterone. Which in MS helps gentlemen not just with intercourse, not just with erectile function and ejaculation in the bedroom, but it also helps improve cognition, and slow disability progression, and improve fatigue with gentlemen with MS.

Geoff Allix (36m 9s):

And is there an equivalent for women with estrogen?

Dr. Aaron Boster (36m 12s):

It's not the same rules, interestingly. It's not the same set of variables. And now looking at hormone levels in women is important. And particularly surrounding times of menopause, when we can see an uptick of MS symptoms, and specifically related to intercourse, as I was mentioning with lubrication. So that is relevant, but for a different set of reasons.

Geoff Allix (36m 38s):

So, men definitely worth getting checked out on testosterone, but women…?

Dr. Aaron Boster (36m 43s):

Not as much. No, I don't routinely check women's testosterone levels in my clinic.

Geoff Allix (36m 49s):

Okay, and if, so, if there's one takeaway you could share with the audience, if people are having sexual issues related to MS, what would that be?

Dr. Aaron Boster (36m 57s):

That the one takeaway would be to have open communication with your partners and with your clinicians, because there are ways to make it better. We don't have to just accept this is now the new state of affairs. On the contrary, there are plenty of things that we can do. And you're worth it. It's worth exploring and improving because it is such an important aspect of life, that it's not okay, you just to say, "Well, too bad."

Geoff Allix (37m 27s):

And there's no reason, I mean, the two of us, I think, are probably beyond wanting to have more children at our age.

Dr. Aaron Boster (37m 35s):

Correct.

Geoff Allix (37m 36s):

There's no reason that a person can't be fertile as well as…

Dr. Aaron Boster (37m 43s):

Oh, absolutely. So, there's a whole separate conversation. But I actually love to come back and talk to you about this. But there's a whole separate conversation about fertility, and pregnancy, and gestation and delivery related to MS. The quick skinny is MS has no bearing on fertility whatsoever. None. And as it relates to our conversation, if you're having intercourse, we need to be thinking about the appropriate use of contraception to avoid unplanned events such as unplanned pregnancies and things like that.

Geoff Allix (38m 17s):

And before we wrap up, there's something I wanted to ask you on a completely different tack.

Dr. Aaron Boster (38m 26s):

Absolutely.

Geoff Allix (38m 27s):

So, just as someone who's got a lot of expertise in this area, and something that is of personal interest. Because of the podcast, I get asked lots about different supplements. So, people say, “Have you tried Coenzyme Q10? Have you tried lion's mane mushroom, St. John's Wort, ginseng, ginkgo biloba?” There's countless things. And some of them, I'm fairly sure, yeah, if your magnesium is low that's, you know, if anything's not off the normal levels, then yeah, absolutely.

Geoff Allix (39m 7s):

But there's always someone championing a supplement or other. So firstly, is there a framework that you would use to decide whether to try a supplement?

Dr. Aaron Boster (39m 18s):

That's an awesome question. Thank you for asking me that question. And it's a multi layered answer. So, I have two criteria, if you will. So, the first criteria, there are three things that must be met, if I'm going to greenlight a supplement. The first one is it can't be too expensive. So, each individual family has to decide if the cost of something is too expensive or not for them. And I bring that up because sometimes you may find supplements where it's actually a big chunk of their weekly check, and that's not okay with me. Particularly, if I don't have hardcore science suggesting that I can guarantee it works. So, it can't be too expensive. The second thing is it can't be dangerous.

Dr. Aaron Boster (39m 59s):

And sometimes supplements are dangerous. Now, oftentimes, they're not. But let me give you an example. If an immune booster actually boosted your immune system, it would be dangerous to take when you have MS. And, you know, just because it's natural doesn't mean it's safe. I mean, cyanide is natural. So, the second criterion is it can't be dangerous. And sometimes I have to do some investigations, digging through various ingredients to try to answer that question. The third is that it can't be instead of something I know works. So, if you tell me that you want to take CoQ10. CoQ10 is not dangerous. CoQ10 is not generally expensive.

Dr. Aaron Boster (40m 41s):

And if you're going to take CoQ10, along with your disease modifying therapy, I have no issues with that. But if you have to take your CoQ10 instead of your disease modifying therapy, where I have good solid scientific evidence that it helps you, now I have an issue. So that's my first criterion. The second criterion is more rigorous in that scientific evidence, you know, properly studied science to prove or disprove that something's helpful. And that second one, you know, we don't have a lot of info. There is some info for some supplements, and I'm going to go over a couple with you right now. But that would be the second one. And you know, it's worthwhile sharing, at least here in United States where I practice.

Dr. Aaron Boster (41m 24s):

The supplements and vitamins are not monitored by the American FDA. So, if there's a bottle of a prescription medicine, and it says it does something, they can prove that. It's been proven, it does something or they can't say it. You know, if there's a side effect on the bottle, or a dosage on the bottle, it has to be proven. Like that's not a suggestion, it's a proof. If you bottle a supplement that you get at a health food store, let's say. What they say on it isn't proven. It doesn't have to be proven. So, they could say, for example, it will make you grow 10 feet tall. And they're allowed to say that even if it's not true.

Dr. Aaron Boster (42m 6s):

And as a result, it calls into question, and it creates challenges and knowing whether something's okay, but which is kind of I think your point. So, when you look at the evidence, to me, this is a conversation about nutrition, right? And I start with, as we talked about, maybe a little bit earlier, I start with increasing water intake, believe it or not. I think if you're going to change one thing, increasing water is actually more relevant than any other vitamin or mineral or something that we're going to talk about. But that's my first one, honestly. After that, I really would rather spend time talking about healthy eating than I would about supplements. And I would like to engage in a conversation about eating real food, whole food, and avoiding heavy processed foods and the like.

Dr. Aaron Boster (42m 54s):

But let's move into some recommendations about vitamins. The first vitamin that I think is actually the most studied with the most evidence for benefit of MS is vitamin D3. And so low levels of vitamin D correlate with increased risk of developing MS. And if you have MS, low levels of vitamin D are correlated with worse outcomes. And so, I routinely check a blood level for vitamin D, and if it's below 50, I supplement. And I use D3, because I feel like it's better absorbed in the human body. And I want to push that level above 40 below 100, or excuse me, above 50 and below 100.

Geoff Allix (43m 32s):

So, can I just interject that. Because we measured it in a different way in the UK, and I think Europe. So, it's actually four times the number you're talking about. So, when you say 50, we say 200.

Dr. Aaron Boster (43m 40s):

Oh, okay.

Geoff Allix (43m 40s):

I don't know why that is just, it's not even an imperial metric thing. It's just because it is exactly –

Dr. Aaron Boster (43m 46s):

Thank you for bringing that up. That's a really, really important point. And you know, another important point is you and I, even though we don't live in the same continent, both live in areas where there's not a lot of sun for a good portion of the year. And so, taking a vitamin D supplement is important because we can't get it, you know, the good old-fashioned way. Now, I have through my involvement with Overcoming MS become turned on to the idea that it doesn't take a lot of sun to soak up vitamin D. So, if you go out and let's say shirtless, or, you know, wearing a halter top, or what have you with some exposed skin, for 15 minutes, you'll absorb 5,000 international units of D3.

Dr. Aaron Boster (44m 30s):

And now in the winter, Ohio with a foot of snow on the ground very few Ohioans are going to do that. But it is good to know that. Yeah. You know, and during the summer months you certainly do consider that. So, vitamin D3, I think, is very relevant. Past vitamin D3, my next recommendation. And I have to tell you, it's becoming increasingly something that I recommend. I'm on the cusp of recommending it for all people with MS. That's probiotics. So, taking a probiotic is really interesting. And there's an entire fascinating discussion surrounding dysbiosis and the impact of abnormal gut bacteria on the immune system.

Dr. Aaron Boster (45m 16s):

Although that's not why I'm recommending it. That's a discussion which is ongoing and still a work in progress. But the reason I'm recommending it is for gut health. People impacted by MS very commonly have significant constipation. And sometimes people with MS have significant diarrhea or incontinence. And so, probiotics pull someone who has constipation more towards the center. And probiotics pull similar diarrhea more towards the center. And so, I really think probiotics are a very, very helpful tool. The next supplement that I would recommend beyond that is added fiber. Because particularly where I practice in the United States, the very low fiber diets, which is a major problem for multiple things, and actually has an impact on MS, in my opinion. And so supplementing fiber, I think is important.

Dr. Aaron Boster (45m 57s):

Now, I would like you to do that with pears, plums, apples, and green vegetables but if you can't or aren't able, or don't want to do it that way, you can purchase a supplement like a FiberCon or Metamucil, or what have you, and then you can do it that way. Now, after that, it really depends on the situation. I think it's very reasonable for humans to take a multivitamin because, you know, we're not eating enough salads and vegetables with different colors. But the American diet is normally not devoid of things. It's not typically a problem with excess.

Dr. Aaron Boster (46m 39s):

And so, if you just add a multivitamin that kind of covers your bases. Now, I don't recommend mega doses of say, vitamin B12 routinely, or vitamin C routinely, unless there's deficiencies that I'm discovering. So, I'm not a physician that recommends as a priority that you take a B12 complex. Many people do, because it helps with energy in some cases. But I really find that if I'm not, if I can get you to eat a healthy diet, I'm going to take care of that through eggs and other things. Now, there's specifics that are recurrent low dose naltrexone.

Dr. Aaron Boster (47m 21s):

You mentioned L-carnitine, things like that. And there's varying levels of evidence for them. Some of maybe the best evidence would be some of, I think L-carnitine has some good evidence for energy. I believe that. I think that helps a lot. I think that's one that I look at. Then when you get into some of the other things, you can find small trials. Turmeric, for example. Low dose naltrexone, for example. And really, I deal those in a one-off fashion where someone's coming to me saying, “Aaron, what about this?” And then together, we kind of look through it. We look at the data if it's in existence, or if it's not, we discuss that. We go through my three criteria and then someone may try it. And here's the important part. If they try it, I want them to tell me what they found.

Dr. Aaron Boster (48m 7s):

You know, did it seem to help? Do they notice a difference? When they stopped it, did it get changed in any fashion? And that's anecdotally one of the ways that we have to kind of assess things.

Geoff Allix (48m 20s):

Because on the turmeric there are basically no risks, cost is very low, and there’s anecdotal evidence, because it's been taken --

Dr. Aaron Boster (48m 36s):

Yeah.

Geoff Allix (48m 36s):

And it’s been used on the Indian subcontinent for centuries or millennia.

Dr. Aaron Boster (48m 39s):

And it's delicious.

Geoff Allix (48m 43s):

Yeah, that’s right.

Dr. Aaron Boster (48m 43s):

You know, if someone wants to take turmeric, how about it? That doesn't violate any of the discussions we've had, and it may help.

Geoff Allix (48m 56s):

Yeah. And if it doesn't help, you still like the food and carry on.

Dr. Aaron Boster (49m 4s):

You know, its still and its still delicious.

Geoff Allix (49m 4s):

Yeah. I’ll just add, just on a personal level. Because I'm fairly similar to what you're saying. So, I take vitamin D3 every day. I take a probiotic every day. And the other thing I take is - so probiotic gut health. But also, to reduce UTI, so there's something I came across that in Germany, they’re routinely prescribed called D-mannose?

Dr. Aaron Boster (49m 25s):

Yes.

Geoff Allix (49m 26s):

And I found that I, and this may be -- because I think some of these things work in some people and some don't. And it's not expensive. It doesn't have a lot of risks. And so, I thought I'll give it a try. And literally within a week, I didn't have a UTI problem at all. Literally, I don't have UTI problems at all from having D-mannose.

Dr. Aaron Boster (49m 50s):

That's fantastic. I think that's a really, really great tip to share with people. And it's what I'm going to think about when I start my clinic tomorrow - about whether or not I'm not recommending D-mannose enough to folks with recurrent urinary tract infections. That's a pro tip. Thank you for sharing that one today.

Geoff Allix (50m 12s):

Well, yeah, I mean, but it may just be that worked for me. So, yeah. But then that's the same.

Dr. Aaron Boster (50m 16s):

Well, again, it's nice to have a toolbox where we can consider different things. And that's a very good supplement to keep in mind.

Geoff Allix (50m 30s):

So, with that, I'd like to thank you very, very much for joining us, and welcome you to the Overcoming MS Board and it's fantastic news. Giving some of your expertise towards the head of the organization. And I thank you for joining us, Aaron Boster.

Dr. Aaron Boster (50m 48s):

It's my absolute pleasure. Again, I love talking with you. And I hope that we get to do it again soon.

Geoff Allix (50m 35s):

Thank you.

Geoff Allix (Outro) (50m 36s):

Geoff Allix (Outro) (51m 22s):

Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in, and see you next time.

View Details

Welcome to Living Well with MS Coffee Break #23, where we are pleased to welcome Katy Glenie as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Katy, coming to you straight from Taupō, New Zealand.

Bio:

Katy is an outdoor loving adventurer who lives on the shores of Lake Taupō in New Zealand. She is mom to 4-year-old Rosie, wife to Mike and runs a communications consultancy that supports businesses who are making a positive impact in the community and on the environment.

Katy is currently training to climb a 3,000-meter peak in the Southern Alps of New Zealand. It will be the first mountain she has climbed since her MS diagnosis in 2019. She keeps her mind and body strong through a daily program of exercise, meditation and OMS-friendly diet. She wants to use her journey to show others that having MS doesn't mean the end of adventure. In Katy’s own words: "The training might look a little different, the journey might be a little slower, and the goal might change, but the joy of a life filled with adventure is still out there waiting for you."

Questions:

Katy, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. You live in what sounds like an idyllic place. Can you tell us about Lake Taupō in New Zealand?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
You live in a remote place. What are some of the challenges of having MS and living in a beautiful yet distant paradise?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
One of your core philosophies is that nature if the best medicine. Seems that’s led you to take up mountain climbing. Can you share the backstory about how you got into climbing, and how your balance your own health needs with what seems like a rigorous physical activity? And how, if at all, has OMS helped with this?
You’re training to climb a 3,000-meter mountain in NZ’s southern alps. Wow! Tell us more.
Shifting gears slightly, one of your other passions is caring for the environment and reducing consumption. How do you put that into practice in your daily life and can you share some perspectives or ideas that may enlighten our listeners?
If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Katy’s Mountain Climbing Adventures:

Katy completed her first alpine climb since her MS diagnosis in August 2021, climbing Single Cone in the Remarkables, near Queenstown, NZ. This was part of her training program for the big 3,000m climb, which is due to happen in November 2021.

According to Katy: “The climb was incredible, and although I was a bit slower than before my diagnosis, and was very tired afterwards, my body was able to keep going. Hooray!”

Katy’s Links:

Check out Katy’s Instagram
Learn more about climbing mountains in New Zealand from Katy’s climbing website

Katy’s Glossary of Māori Phrases

I'd love to share some of our local Māori phrases that are commonly used here in Aotearoa (New Zealand in Māori). Our indigenous language is unique to our country and is seen locally as a treasure (or taonga) and an important connection to our land and people:

Kia ora = hello

Mōrena = good morning

Ka kite anō = see you again / later

Ngā mihi = greetings (commonly used as a sign-off on emails / letters)

Kaitiakitanga = guardianship / care and protection of our land and native species

A macron over a vowel indicates a longer vowel sound, and Māori vowel sounds are:

a (‘a’ as in ‘car’)
e (‘e’ as in ‘egg’)
i (‘i’ like the ‘ee’ in ‘tee’)
(‘o’ as in ‘four’)
u (‘u’ like an ‘o’ in ‘to’)

Coming up on our next episode:

Starting October 20, Living Well with MS welcomes back Dr. Aaron Boster, an Ohio-based neurologist specializing in MS. This time we tap his expertise to grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic, so let’s talk about sex and MS! Also, the final installment of Ask Jack for 2021 premieres on November 10, and it’s our special holiday cooking edition. Remember, you can submit your questions early for the next and all future Ask Jack episodes by emailing them to podcast@overcomingms.org.

Don’t miss out:

S3E42b Transcript

Coffee Break #23 with Katy Glenie

Geoff Allix (1s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family, made for people with multiple sclerosis interested in making healthy lifestyle choices. Today, you'll meet someone living with MS from or our global Overcoming MS community. Our guest will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels.

Geoff Allix (45s):

Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So, get your favorite drink ready and let's meet our guest. Welcome to Living Well with MS Coffee Break #23, where we are pleased to welcome Katy Glenie as our guest. As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Katy coming to you straight from Taupo, New Zealand. So, Katie, welcome to Living Well with MS Coffee Break. We're very pleased to have you on our program and just to explain the purpose of this series is to better get to know some of the diverse members of our community from around the world. And today you're in the hot seat.

Geoff Allix (1m 26s):

You live in what sounds like an idyllic place. So, could you tell us a little bit about Lake Taupo in New Zealand?

Katy Glenie (1m 34s):

[unintelligible], Geoff. Thank you for having me on the program. It’s lovely to chat with you. Yes, I live in the most beautiful place in the world, Taupo out there in New Zealand. So, we're on the edge of New Zealand's biggest lake and in the distance, some beautiful mountains on the edge of the lake. And that's one of the reasons that we moved to Taupo three years ago actually was to start doing a bit more mountain climbing, rock climbing, and I also love to swim and it's a freshwater lake and one of the cleanest lakes in New Zealand. So, it's beautiful swimming as well in the summertime. So, we were very lucky to live here.

Geoff Allix (2m 16s):

And when were you diagnosed with MS. And could you provide a bit of a backstory of that?

Katy Glenie (2m 23s):

Yeah, sure. So, I was diagnosed with MS around two and a half years ago. It was actually soon after we moved to Taupo, came as quite a shock as it will do for most people diagnosed. I have no family history of MS. We came to Taupo and we're really excited to start enjoying this wonderful outdoor lifestyle. We have a young daughter, so she would have been two at the time. And I had a, what I now know is a relapse. So progressively more and more pins and needles, numbness, loss of sensation on my right side.

Katy Glenie (3m 3s):

And eventually that turned into what I now know as the classic MS hug, so I was really struggling to breath doing anything more than very basic sort of day-to-day things. It took a really long time for me to get diagnosed through our public health system. So it was, it came eventually as a bit of a relief to have a name against what was happening to me, but it was also a huge shock. I imagined that I, within weeks might be in a wheelchair, which I now know is not the case, but I guess that's where my brain went and I thought, wow, how am I going to be a parent? How am I going to be a wife and a contributing part of a relationship?

Katy Glenie (3m 50s):

And how am I going to be able to engage in this beautiful outdoor lifestyle that we had come to Taupo to experience? So, it was a rough time.

Geoff Allix (4m 1s):

So, you've, you said you live in a beautiful but remote place. So, what are some of the challenges of having MS and living somewhere that's quite distant and remote?

Katy Glenie (4m 13s):

Yeah, thanks for asking that question, it is really challenging. And I hadn't realized that until I started to try and engage with the health system from a regional community. So, there's a lot of driving to appointments quite far away because our local hospital is really just very basic. The neurologist I see is just a visiting neurologist, he comes to the hospital at a town that's over an hour's drive from where we live and all of the services like MRIs and specialized testing and my infusions that I get are all done in another town.

Katy Glenie (5m 1s):

So, there's a lot of driving and there's a lot of sort of, I guess, stress around trying to find out if you're getting the right treatment, because there's no MS specialists anywhere near where I live or the specialists that we have around the main centers. So that's, I guess another complication.

Geoff Allix (5m 19s):

But you managed it well, do you get over those problems?

Katy Glenie (5m 25s):

Yeah. Yeah. I mean, everything's surmountable in the end, but it's just, you just kind of have to navigate your way through and try and find support where you can get it. So, for example, I found an excellent neurophysio who's based in Auckland and I've seen her through online sessions. And initially I thought, how do you see a physio online? Like, don't they have to see you doing exercises. But actually, most of the time we just talking about where I'm at, where I could go to next, what some of the challenges I'm facing might be.

Katy Glenie (6m 6s):

And then I just fly up and see her every sort of three or four months in person. And that actually worked really well. So, you sort of be a bit creative in that way. And the other thing that's, to be honest has been absolutely excellent are Overcoming MS tools and support that’s available online, because that has been a huge source of inspiration and support for me on this journey.

Geoff Allix (6m 32s):

That's good. And one thing actually has been a good side of COVID is that actually the online ability to do things has gotten much better. I'm the same my-- I just spoke to my neurophysio last week, but although I can normally see her, that's very restricted because of coronavirus. But actually they, everyone has made real efforts to be able to do things virtually and you're right. Actually, I didn't need to physically see her. And it was easier just to do this, do it over Zoom, and we could have a conversation and actually get some things resolved and it was a good meeting. And I think things hopefully will stay like that because we've got this ability to communicate that's been improved because we had to.

Katy Glenie (7m 19s):

Yeah, yeah. I did notice that the, you know, like the webinars series that are in this, going through the different parts of the protocol and some sort of ideas and inspiration, you know, I feel like that might not have happened unless COVID sort of, or maybe sped things up a little bit and it, you know, I would have gone on a retreat if I could have, but that was all kind of closed down and with all the institutes not operating, so that option isn't there for me and being able to see all that stuff and engage with the little message boards and that, that's been really cool.

Geoff Allix (7m 60s):

And when did you come across OMS and why did you start, when do you decide to start to follow it?

Katy Glenie (8m 8s):

So, Dr. Google found me OMS, Dr. Google is an amazing resource. And I mean, I sort of had a look about, but it wasn't long until I found that. And then I know you've mentioned before on previous podcasts that you, you know, you like the idea that it's not selling you on a thing. And that appealed to me as well about really the research and that's quite genuine. So yeah, I came across it really quickly. And then I soon, you know, I started to see that people were having good results and I know, you know, the results on an individual level will be hugely variable depending on your situation and those sorts of things, but just having inspiration there, listening to people that I'm going to doing really well and that I encouraged them moving forward.

Katy Glenie (9m 1s):

That's been, yeah, it's been really good.

Geoff Allix (9m 4s):

And what are some of the challenges you've faced in implementing the OMS protocols?

Katy Glenie (9m 12s):

So first thinking about this before this conversation started, you know the hardest thing was I was not even vegetarian. I was a full meat eater; I had a lots of meat at every meal pretty much. And we, you know, I think we eat veggies here maybe once every three months and we had lots of cheese. So, it's kind of like, how do you cook without meat and cheese, is that even a thing? So that's been a real learning curve for us. We're kind of on a good record now, but that took a long time.

Katy Glenie (9m 52s):

And my husband was a very much a meat eater and he was like, well, when do I get to eat the steak? And I'm like, just put it on top. I just won't have those fats.

Geoff Allix (10m 2s):

I came from a very similar-- I say, in some many ways actually with your hobbies as well. So, I was into rock climbing and outdoor sports and might have by the case of surfing and very, very, very active, but my diet was terrible. It was very processed as well, as well as being mostly meat. There's a lot of pies. Yeah. There was a lot of fried food, a lot of cheese. And you wonder whether that contributed, I don't know, but I thought I was okay because I was so active. I was slim. And I thought, well, if I'm slim, then eating all that food is not doing me any harm, I'm burning it off.

Geoff Allix (10m 43s):

And you don't realize that there are other side effects to what you eat and, you know, heavily processed food is never going to be good. And yeah. Food with high fat.

Katy Glenie (10m 54s):

You know, [inaudible]. We're quite lucky in New Zealand, I mean, you know, everyone's a bit different, but our diet generally isn't that processed, but definitely a lot of meat. And, you know, fat, you know, I used to say to friends, fat’s back, don't worry fat’s back. You can eat as much as you like it's safe and you know, it keeps you [inaudible] So definitely, it was a big challenge. And the other thing that was initially a bit of a challenge, but it's now something I've come to love was the meditation. I mean, I own my own business. I have a young daughter and I'm very active in the community, and then the outdoors.

Katy Glenie (11m 39s):

And I was like, when do you fit this in? This is ridiculous. They're asking you to meditate every day, who does that? And then actually my physio said to me, as part of fatigue management, she said, you need to do something that rests your brain every day and you need to do it not right at the end of the day, when you're trying to go to sleep, you need to do it at a time when you really going to benefit from having your brain rested, which is the middle of the day. She said, you need to sit down, and you need to stop everything that's going on. All the stimulation, no reading, no listening to what's going on in the news. You need to just quiet your brain down.

Katy Glenie (12m 20s):

And I was like, jeepers even the physio is telling me to do this, all right, I'll give it a go. And so, you know, put your Air Pods on and listen to this woman telling me to chill out. And after a while, I was like, this is amazing. This is, it's been a really, really beneficial change to my life adding meditation to the bag, and now I do it religiously every day.

Geoff Allix (12m 43s):

That was like my physio as well. And she said, my first neurophysio said, don't forget your mind, which I found really strange because I thought they would be, it's all about exercise and they would ignore all the other elements. And that would be their thing. But yeah, he said, no, you must think about your mind as well. And he was sort of talking about, you know, think about yoga and think about different things, but basically try and not get stressed out, calm your mind. And it was really interesting to get that from someone who's actually from a different field saying that they see benefits from people who practice mindfulness, stress relief, yoga, those sort of things.

Geoff Allix (13m 25s):

So, when did you start to see positive benefits from following OMS and what were these?

Katy Glenie (13m 32s):

Well, it's taken longer than I had thought, but it's been a slow progression of less symptoms. So, my symptoms have been mainly pins and needles and sort of lack of sensation. And then also I would get, I get problems around fatigue and heat tolerance. So, when I get too hot, I get really, really tired and all my symptoms, my pins and needles go a bit crazy. So, what I've noticed at the start, I didn't really notice anything, but over time I noticed that all the symptoms were getting less and less.

Katy Glenie (14m 21s):

So, I was still getting them, but I was getting them less frequently and they were lasting for a much shorter amount of time. But the thing that it really gave me, so that's obviously a benefit, but the thing that it really gave me was a sense of hope and a sense of focus. So, I knew I just needed to keep following the steps and keep working through it and it gave me some autonomy over my own health. I wasn't sitting and waiting to see if there was a new medication that was going to save me. I wasn't, you know, waiting to see if some amazing new neurologist was going to come into our town. I felt that I had that autonomy over my own health, and that has been probably the biggest benefit to the program.

Katy Glenie (15m 4s):

So, I have definitely seen improvements in my symptoms, but in terms of my outlook and my approach to life, that's where I've really benefited. And I feel that I've got much more confidence to continue to live a full life.

Geoff Allix (15m 20s):

And I think that the book talks about that. Having faith in there is actually, medically If people believe they're doing something and they know they're empowering themselves, and they're doing something to get better, that actually has a point of positive benefit. And there's an element of that in placebo effect. So, if you give someone a sugar tablet, but tell them it's the latest, greatest medicine, then the proportion of those people get better because they think they're doing something. And then your mind is so powerful that actually it can have an effect. And so, it's actually part of the program that you need to believe in the program, you need to read into it and understand it because that belief in itself is in itself a positive benefit.

Katy Glenie (16m 6s):

Yeah. And I've really experienced that. So, I mean, we'll come on to talk about it soon, but I guess taking on physical challenges and taking on things that initially I thought might not be possible for someone with MS, they just come through following the program. So, I just have belief that what I'm doing is helping my body for the long term and that I can go on to do challenging and exciting things that I might've thought were not possible.

Geoff Allix (16m 40s):

Well, talking about that then. So could you tell us a bit about climbing and how you got into climbing and how you balance your health needs with rigorous physical activity and dangerous physical activities.

Katy Glenie (16m 56s):

Manage danger, Geoff.

Geoff Allix (16m 59s):

Well, I don't know if I mentioned this on previous podcasts, but I've actually had a compound fractured tibia and femur of my right leg when I was 17 years old in a rock climbing incident and I couldn't walk for six months. There are some, sort of man-- it was managed because I'm still alive, so.

Katy Glenie (17m 24s):

Oh, all right. Yeah. So maybe there is an element of doubt. Yeah. So, and I guess in my sort of personal time, I love doing lots of things in the outdoors. And two of those things are rock climbing and alpine climbing and what I've sort of been working on it. So, I was recently the lucky recipient of a grant that will -- it's called the Mastering Mountains grant that's hoping to pay for a major go and take on a peak in southern New Zealand. So, I'm going to plan a 3000m peak at the end of the year.

Katy Glenie (18m 6s):

And that grant has, was started by someone with MS who went from a wheelchair to climbing a mountain, doing lots of, you know, focused work on diet and exercise and mindfulness. And that really inspired me reading that and I thought, okay, well if he can do it, I'm sure I can. And so, once I got the grant, I guess I've kind of publicly said to the world I'm going to do this peak. And then I bought, I don't know how I just write it down on the application form. So, then I thought, okay, I need to work out how to do this. And my, so I got in touch with the neurophysio that I mentioned before, and she's helping me on the program, on my sort of fitness program.

Katy Glenie (18m 56s):

And what I've done is I've just started out sort of with something that I think is achievable. And I've just, I've always done a lot of tramping that I think to the rest of the world is hiking. In New Zealand, we call it tramping, I don't know why. And so, I went on an overnight tramp, and I took a friend and I said, hey, can you carry most of my stuff? I just want to see if I can physically walk this far, but I want to be able to do it more than just a bush walk, like the neighborhood. And that worked, and then I thought, okay, well next time maybe I'll carry a bit more gear, that worked. And then the next time I thought, maybe I'll walk a bit further.

Katy Glenie (19m 38s):

And so, I've sort of taken it in stages like that without pushing too far, but each time pushing a bit further. And I just make sure I'm really listening to my body. So, I've got some great tips on what to do if my symptoms are a bit [inaudible], so, you know, take a rest, take some water, get something to eat, get yourself a decent rest, you know, 20, 30 minutes and then start again. Don't think I've just got to push through this you know, if your body's saying to stop that's okay, but that doesn't mean you have to turn around and go home. And then I've also recruited, I guess, some great friends who are helping me, so they know what's going on for me, they understand that sometimes I might want to walk slower or that I might want to rest a bit longer than they would normally rest.

Katy Glenie (20m 29s):

And they've all been really supportive with that. So, I guess it's about recruiting people to help you along the way, getting good knowledge and information about how to manage your symptoms when you're going through them. And also, just to not be afraid to push yourself a little bit further, you don't need to push yourself to the point of getting a relapse, but you do need to push yourself beyond just walking down to the litter box and back every day.

Geoff Allix (20m 55s):

You've mentioned Alpinism and climbing mountains, but for those people who don't know what alpinism is, and because it's a bit more than what you're saying is tramping and what mountain are you climbing? Because it's not, it's not a sort of like, yeah, it's not small hill.

Katy Glenie (21m 17s):

Yeah. Fair enough, yeah. So, I guess we aren't tramping because at the moment the snow hasn't come on yet. So, I'm waiting for the snow to come before I can start going on the mountain. And tramping is really good training for mountain climbing, but alpinism is when you are on the mountain and you have an ice ax in your hand, you have crampons on your feet. You have lots of warm gear on, and you've probably got a harness around your belly, and you're attached with the rope to someone else. So, entry level mountain climbing, you might not get ropes, but as you get better and on to the more technical climb then you’re often roped to your climbing partner, and you would be off to climb something that might involve quite a steep slope, that might involve a bit of ice and snow and rock and a [inaudible] ideally you top out on some sort of summit.

Katy Glenie (22m 11s):

And that's what my objective is at the end of the year is to climb a peak called the Minarets, which is on the spine of the Southern Alps and the south of the South Island of New Zealand. And I'll be doing all those things, ropes and ice axes taking on some steeper slopes on a snowy peak.

Geoff Allix (22m 39s):

And on another subject, one of your other passions is caring for the environment and reducing consumption. So how do you put that into practice in daily life? And is there anything that could enlighten our listeners about this?

Katy Glenie (22m 55s):

Oh, I love that question. Awesome. So, I'm really, really passionate about looking after the land that we are so deeply connected to. And I guess for me how that works in daily life is I think a lot about reducing my consumption. So that's probably one of the easiest ways to summarize sustainability is that less is best. So, if you can buy less, if you can grow more of your own food, if you can buy things without packaging, if you can reduce your food waste, if you can drive less or drive-- we have an electric car, so we'd drive that, if you can share your ride with someone else that is less of you and different cars.

Katy Glenie (23m 44s):

If you can think about flying less, or if you can think about buying less things for your home, you don't need two TVs, you might need one. You don't need five sofas, you might need one, and it could be a sofa that's been used by someone else before it came to your house. All that sort of way of living is something that I really enjoy. And I liked the idea that through my actions, I can make an impact. And also, if I'm sharing those stories with other people, they can start to learn how they can also have a positive impact.

Geoff Allix (24m 21s):

Yeah. I noticed, I mean, we're very good at recycling, but we're now at a phase where someone said, you start off you need to recycle more and then you need to recycle less because actually there's an awful lot of stuff going to recycling and that's not necessarily a good thing. There's a huge amount, I mean, certainly in the UK, the amount of plastics in everything you buy and if you buy anything from Amazon, sorry, and other retailers are probably the same. I shouldn't just call them out, but if it comes in a box, in packaging, in another box. And it's like, sometimes you end up with three or four boxes to actually get inside the thing that's in the middle and yeah.

Geoff Allix (25m 3s):

The packaging and plastics and just buying food stuff, everything is covered in plastic.

Katy Glenie (25m 10s):

Yeah. And don't underestimate the power of one person because I think, you know, we're getting more and more understanding right now around the world on the issue and all those voices are getting louder and louder, you know? So, I would like to think that one day when you go to a UK supermarket, not every item, not every vegetable is single wrapped in plastic. Cause when I lived in the UK, hopefully it's different now, but when I lived over there, everything was individually wrapped because it comes from Ecuador or Argentina or something, that's like-- you know, limes aren't in season right now.

Katy Glenie (25m 51s):

So why are limes in the supermarket? [crosstalk]

Geoff Allix (25m 56s):

I would say there's less plastic now, but it still comes around the world and you can't explain it to your children, that you can't have an avocado this time of year because they don't grow. They're going to go, I want avocado, or I want strawberries, but it's December and they can get strawberries and that's the problem. Yes, they're from Peru or Kenya or, you know, they've flown them in an airplane. That's insane to do, but that's not-- I mean, I think it's a generational thing because when I was growing up, you ate what you could eat in season. And that was that.

Katy Glenie (26m 33s):

We did try to eat in season here. And I guess the other flip side of it, as, you know, the UK is kind of much more attached to a global economy. In New Zealand if the strawberries come from Argentina, they will be way too expensive for anyone to buy. So, no one will buy them. So we only buy strawberries when they come from New Zealand, because they're affordable and so I guess there's a bit of just that understanding that if you think every time you're wanting to buy something, just because it's something that you really need and if it is, try and buy second hand or try and buy it from a local supplier who might've made it locally or might be quite thoughtful about how much sort of [inaudible] and carbon dioxide has been involved in producing that item because it's, yeah.

Katy Glenie (27m 26s):

It's just being sort of a bit more thoughtful about your life.

Geoff Allix (27m 32s):

Okay, interesting perspective. So, if you tap into your-- back to MS. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom, what will help people adopt the OMS program?

Katy Glenie (27m 50s):

I guess for me, it's about that sense of community, that you're surrounded by others that are following the program and want you to do well and want to support you on that journey. And it's also understanding that even if you're not getting amazing results straight away, and you're not, you know, suddenly feeling better, it's a journey. And part of that journey is the belief that you're doing something that's positive for your health. And if you can kind of keep on that hopefulness and positivity, that will help you so much and your health and in your general wellbeing and outlook.

Geoff Allix (28m 36s):

And with that, I'd like to thank you very much for joining us, Katy Glenie.

Katy Glenie (28m 42s):

Thanks, Geoff.

Geoff Allix (28m 42s):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. If you'd like to be featured on a future Coffee Break episode, or have any suggestions, please email us at podcast@overcomingms.org. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (29m 23s):

Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our email newsletter please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

Getting pregnant is a topic that often spawns many questions, but this is especially so when you have MS and must balance health and lifestyle considerations against the desire to have a healthy pregnancy and starting a family. Pregnancy and MS is an area that Overcoming MS covers extensively, but to really delve into this important discussion we at Living Well with MS thought there’s nothing better than getting a firsthand account. That’s where Ingrid Adelsberger comes in. Ingrid has followed the OMS program for several years. She is the editor of the OMS cookbook, the former ambassador of the OMS Circle in Los Angeles, and the current co-ambassador of the global OMS Circle. Ingrid is also a proud mom to a two-year-old daughter named Romy.

Questions:

Welcome to Living Well with MS, Ingrid. We’re here to discuss your experiences with pregnancy, but first off, can you tell our audience a little bit about yourself?
When were you first diagnosed with MS and how long was it till you came across the OMS program?
How has the experience of following the OMS program been for you? Can you share some of your ups and downs, and any lessons you’ve learned?
On to the topic of pregnancy. I understand you welcomed Romy, your lovely daughter, into your life over 2 years ago. But when you first started thinking about getting pregnant and starting a family, what were your initial concerns as it pertains to having a healthy pregnancy while having MS?
How much of a consideration was your MS in your decision to try to get pregnant?
Did you take any specific precautions or measures to ensure your pregnancy would be smooth without flaring up any MS symptoms?
Was it hard to maintain the OMS program while being pregnant or immediately thereafter? Are there any tips you can share with our audience about doing so?
What was the experience of being pregnant like, in the sense of how it impacted, if it did at all, your MS?
Did you consult any specialists before or during pregnancy to enlist their aid? And if so, did it help?
Did you have any expectations about how the pregnancy would go, and was the reality what you expected or different?
Is there anything you would have done differently in hindsight?
Did the pregnancy or the time immediately thereafter see any kind of impact on your MS symptoms or general state of physical or mental health?
Having a newborn makes a dramatic impact on your life under any circumstances. How did you stay centered and keep your stress levels as low as possible while facing the challenges of being a new mom?
Thanks so much for being on our program, Ingrid, and enlightening many mothers to be with your experiences with pregnancy and MS. As a final thought, if you could offer some key suggestions or advice for women with MS who are considering getting pregnant, based on your own personal experiences and what worked really well for you, what would these be?

Bio:

Ingrid was born in Vienna, Austria and moved to New York in 2005 where she lived until 2016. She then moved with her husband Dat to Los Angeles where her daughter Romy was born in 2018. Her first career in New York was event planning, but her experiences with MS and especially OMS, focused on the power of lifestyle change, made her want to change careers. She started a course in health coaching in 2016 which led her wanting to learn more, so she completed a master’s degree in health coaching in 2019. Ingrid wanted to apply her newly acquired skills as a health coach, which she did by working independently as well as for a health services company. She currently resides in Vienna with her husband and daughter. Ingrid is also the editor of the OMS cookbook and served as the ambassador of the OMS Circle in Los Angeles before moving back to Austria. She is currently the joint ambassador (with Sean Kressinger) of the global OMS Circle.

Links:

Ingrid used The Bump as a tracking tool throughout her pregnancy, and still uses it today.
Ingrid gained much insight about pregnancy from a classic resource, What to Expect When Expecting. Now there’s a website, too!
Ingrid practiced hypnobirthing, which you can learn more about from this book.

Coming up on our next episode:

Buckle up and jet (the virtual kind, with zero carbon footprint) to New Zealand to meet OMSer and mountain climber extraordinaire Katy Glenie on Coffee Break #24, premiering on October 4. You’ll want to hear all about her OMS journey, as well as her latest adventures scaling a 3,000m peak in New Zealand. Also, the final installment of Ask Jack for 2021 premieres on November 10, and it’s our special holiday cooking edition. Remember, you can submit your questions early for the next and all future Ask Jack episodes by emailing them to podcast@overcomingms.org.

Don’t miss out:

S3E42 Transcript

Pregnancy and MS: A Firsthand Account

Geoff Allix (1s):

Welcome to Living Well with MS, the podcast from Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That's kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (44s):

Now without further ado, on with the show. Welcome to Living Well with MS. Today, we're talking about pregnancy and MS, with Ingrid Adelsberger. Getting pregnant is a topic that often spawns many questions, but this is especially so when you have MS and must balance health and lifestyle considerations against the desire to have a healthy pregnancy and start a family. Pregnancy and MS is an area that Overcoming MS covers extensively, but to really delve into this important discussion we at Living Well with MS thought there's nothing better than getting a firsthand account. That's where Ingrid Adelsberger comes in. So, Ingrid, welcome to Living Well with MS. We're here to discuss your experiences with pregnancy.

Geoff Allix (1m 27s):

But initially, could you tell us a little bit about yourself?

Ingrid Adelsberger (1m 30s):

Yes. Thank you so much for having me. I am originally from Vienna, Austria, and then I moved to New York in 2005. I've lived there for a little over 10 years and then moved with my family, with my husband because his family is in Southern California, so we moved in 2016 to LA. And I worked in New York as an event planner for 10 years. And then throughout my MS experience and OMS, I wanted to change careers and I studied another time and started health coaching. And this is kind of the career that I have been doing starting late 2016, and then obviously most importantly on today's topic in 2018, my wonderful daughter, Romy was born and she's almost three years old now, which I cannot believe.

Ingrid Adelsberger (2m 22s):

And we currently are in Vienna for the past [inaudible].

Geoff Allix (2m 25s):

And when were you first diagnosed with MS?

Ingrid Adelsberger (2m 28s):

I was diagnosed in 2011. March 2011.

Geoff Allix (2m 33s):

And when did you come across the OMS program?

Ingrid Adelsberger (2m 36s):

So, I pretty quickly found Swank and I remember that day very well and checked the internet out right away, because I read no chocolate and I was like, that's not for me. And then, but it somewhat worked in my, in the background of my mind, and so I started an elimination diet just a couple of months later, until the two months I really cut out wheat and dairy and everything, meat and all kinds of stuff. And then I found Swank again. And then the second time I was looking at it, I was like, you know, maybe that is the way to go. So, I started Swank then and on the Swank forum within a month, I'd found OMS and that changed my life because so many people were saying, you know, honestly it's very positive, it's stricter, but it has better chances and stuff like this.

Ingrid Adelsberger (3m 26s):

So, I decided to move over to OMS, and I did that in September or October of 2011. So, I didn't get started right away, but I would say with everything before I almost started a couple of months later.

Geoff Allix (3m 42s):

And how have you found the OMS program. What have been the good things and the bad things about OMS?

Ingrid Adelsberger (3m 50s):

Yeah, so I would say, like many people in the beginning, I struggled with the diet, and I was super strict for a year. And then I had "relapsed" and, you know, I bounced back, and I ate, you know, many non-OMS compliant things for a little while, until I realized that I'm not the only one. And that happened during my OMS retreat in England, in 2013. And that's also when the idea for the cookbook was born, but-- and then obviously it got easier because knowing that others have a similar experience and working on the cookbook made it much, much easier.

Ingrid Adelsberger (4m 38s):

But in the beginning, I struggled very much with the diet. I never struggled with the workout, I believe. Like working out because I started already working out in my mid-twenties before that, not so much, but then, you know, I just did, I continued to do that. And I had different phases throughout OMS where I did yoga or where I was running, or I did a lot of gym exercises and it definitely got difficult throughout the pandemic. And so now I'm doing a lot from home, either like it's a seven-minute HIT workout or it's yoga.

Ingrid Adelsberger (5m 20s):

And I do a lot of walking. I've always done a lot of walking because that's the thing that I really love.

Geoff Allix (5m 27s):

And you touched on it there, but you're the editor of the OMS cookbook. So how did you find that editing a book and dealing with all the recipes?

Ingrid Adelsberger (5m 38s):

The first thing I, if I knew what I'm getting myself into, I would have never done it. But the experience was really amazing because I met so many people and lots, you know, including you, emailing with people about the recipes, so many other things. And there were some really long exchanges with different people from all over the world. That was really, really nice. And I would also say that was, hopefully not the peak, but it was around five years after I started OMS which is the time that they say this is when the diet really comes to full.

Ingrid Adelsberger (6m 23s):

How do you say the full fruition?

Geoff Allix (6m 25s):

And you must've like, because you tried all the recipes, didn't you? So, you must have, like from around the world, must be really interesting to try.

Ingrid Adelsberger (6m 34s):

It was great. And it also minimized eating out, right? Because there's nothing that I craved, you know, I mean, I made more cakes every week then I should have eaten and all other things. So, I think I was super clean OMS and very tasty and lots of fun, lots of work too, but it was great. It definitely was great. That is actually my up-- I meant to say that, that is my up. When we talk about ups and downs, that was definitely one of my greatest OMS ups that I can say.

Geoff Allix (7m 9s):

And so, we're talking about pregnancy and MS on this podcast. So, on topic of pregnancy, you mentioned that you welcomed, is it Romy, your daughter? When you first started thinking about having a family? What were your concerns about being pregnant while having MS?

Ingrid Adelsberger (7m 33s):

I must say ignorance is bliss. So even though I knew that there could be some negative flare ups or negative implications, is that the right word to say? But I really didn't think too much before getting pregnant at all, things like this. When we started to talk about having a family, I was 35 and I had Romy when I was 37. So, at this point I was more concerned about being an old mom. And it wasn't necessarily about what implications would the MS and the pregnancy have, because I always understood that pregnancy was really good.

Ingrid Adelsberger (8m 24s):

It's more the postpartum that I was worried about, and I was worried about her developing MS. So, I was definitely thinking a lot about that. And we started already during the pregnancy I remember reading a lot on the OMS website and asking people and you know, what can I do that she will not get OMS. I'm sorry, that she will not get MS. So, I try, you know, the first year super strict having her on OMS, which I don't know if that's completely the right thing, because you know, when they're so little, they need more. So now that she's three, we are doing that, she's not a hundred percent OMS, but I do try to offer her much vegetables.

Ingrid Adelsberger (9m 15s):

You know, I have all these great thoughts of like, you know, I'm a health coach and my daughter is going to eat all the vegetables and not cheese. But I do my best to offer and over and over again and making sure that she eats as healthy as possible. And everybody that I talk to says, like, you know, I bet she's doing really well better than others.

Geoff Allix (9m 36s):

I mean, I think with my kids, I try to rank how bad things are in that, that we shouldn't eat in a diet. And so, my kids are dairy free, they don't have any red meat, they have some chicken. So, they have basically my diet plus chicken. They do have some vitamin D supplementation. They're very sporty and active anyway. So, they're -- the way I see it is I think, well, that's got to be much, much better than a typical diet and certainly a diet I had growing up and they're aware as well, and they wouldn't dream of smoking or, you know, they know that because my father had MS.

Geoff Allix (10m 21s):

So, they know their grandfather had MS. Their father has MS. So, to them, there's an obvious pattern. Like, okay, if I don't do things right, I'm the next generation.

Ingrid Adelsberger (10m 33s):

But you can wait till they're older so they can--

Geoff Allix (10m 37s):

Yeah. I think there's a risk if you go too strict that they could rebel as well.

Ingrid Adelsberger (10m 41s):

Exactly. So that's what I'm trying to do, right now, and she's allowed, she doesn't drink milk, so she drinks soy milk, but she does get, you know, a croissant or something like that, now and then, because she loves it, and you can’t cut everything it's not like that. We have sweets at home and we really, I'm trying to give her as little chocolate and sugar as possible. So, for example, I have this, actually, I bought that for myself, these bars that are made out of dates and cocoa powder, and she loves those too. So, I think it's like when you offer her stuff like that, then she doesn't know the difference from this to a Twix bar.

Ingrid Adelsberger (11m 27s):

So, I think before I was pregnant, I always say, at home we eat what mama eats and when you're out, you can also have other stuff. So that's kind of how we've been doing it. And she eats almost no meat because we don't eat meat at home, now and then she eats chicken. There were really some rare occasions that she would eat some other meat, but she's not used to it. So, she doesn't really like that.

Geoff Allix (11m 53s):

And during pregnancy, are there any special precautions that you took during pregnancy?

Ingrid Adelsberger (12m 1s):

I tried pretty much only OMS and try to stay as true to OMS as I can, especially when we talk about diet. Diet, so definitely that it was sometimes difficult because obviously people tell you, you know, you need dairy, you need meat, you need eggs, all those kinds of things. And so, there were many times that I was like, what if I'm doing the wrong thing for my child? And then I would go back to OMS, ask somebody, and would come back and say that was okay. But she was a small baby when she was born, and she was pretty light. So, I blamed myself for a long time that it's my fault because I'm fairly tall and so is my husband. And so, she was not a big baby when she was born.

Ingrid Adelsberger (12m 42s):

So, I was really scared that it's my fault, but it means they're starting to prove that it's all turning out how it should be turning out, and that's good. So, there was also a nurse that I had during, from my insurance during pregnancy that I said, like, you should be eating fish oil and stuff like that. And then again, went back to OMS, is a bit of flax oil not enough, and got back into like, continue what you're doing, you're fine. So, I kept on doing all these things, but I did worry about it. So, if you are doing OMS and you are pregnant or want to get pregnant, just trust, trust and believe that OMS is the right thing.

Geoff Allix (13m 25s):

Yeah. I think there's a lot of-- in the health system that they, there's a lot of belief in the way they've always done things. And in the UK certainly we have dairy as a food group, as a required food group. But then when you think about it, the dairy one, when it was explained to me, and I've said this many times, but it's just not normal to have breast milk from another species. No animal on earth does that apart from you. I can't believe that's normal.

Ingrid Adelsberger (14m 2s):

Yeah. That is actually the one thing that just came up with a conversation with a friend that I'm realizing, Romy has been a hundred percent breastfed. She has never had one single formula. And that was one of my wishes and goals that she would not have dairy when, like very early on. As I said, now, obviously she has a little bit of a croissant or something here and there, but she has not had dairy. And I probably breastfed her over two years. So, she has not had any of that early on.

Geoff Allix (14m 39s):

And that's shown to be good anyway, isn't it? Just generally for the general population?

Ingrid Adelsberger (14m 44s):

Luckily, I think they say six months, but then the World Health Organization says even two years. So, I think the longer you do it, the better it is. I believed that that was one of the things I can do to start her off the best way in this life. I hope it's true.

Geoff Allix (15m 8s):

So how did you find it having MS and being pregnant? Did it, did having MS affect your pregnancy or being pregnant and affect your MS during and after pregnancy?

Ingrid Adelsberger (15m 21s):

So, during pregnancy, I would say, no, at the very end, I had some days where I had a little bit of symptoms, but it wouldn't be like days and days, all day long. It would bend like once or twice, and I could feel something and then it was, that was it, that was the only thing. I must say I had, I think, a dreamy pregnancy. I really, I worked out until month seven. And the last couple of months I did maybe yoga and walking. I did hypnobirthing.

Ingrid Adelsberger (16m 2s):

I prepared myself with hypnobirthing for the actual birth. So, then I did those type of meditations, during that time. I slept so much, I wish I could sleep like this again. I just really, really, especially being "an old mom", I had a fantastic pregnancy. It was really a good time. Unfortunately, afterwards, maybe not so I think very much what the book says, six months after pregnancy is when I had, looking back now, maybe a relapse or definitely flare up of old symptoms and stronger.

Ingrid Adelsberger (16m 50s):

And I think that I didn't, I was so well for so many years that I didn't even think, oh my gosh, this could be something really bad. So, I was like, okay, I'm just going to see and wait, wait it out. And it went away. So, then a few weeks after that, I got vertigo and that, again, I know a bunch of people that have vertigo, and they don't have MS. So, I went and at the time I was working, I was studying, I had a newborn baby. Maybe it was the stress that's what I was thinking. And so again, that went away after a few days and I was like, okay, I'm fine.

Ingrid Adelsberger (17m 33s):

You know, that has nothing to do with MS, well maybe it's postpartum or other stress or something like that. And so, looking back that may have been the time to talk to a neurologist, which at the time, I didn't maybe think about DMDs, because I have not taken them.

Geoff Allix (17m 58s):

And did you get any specialist advice from your obstetrician about having MS or from your neurologist about being pregnant? Was there any specialist advice you got?

Ingrid Adelsberger (18m 9s):

So, I did not see a neurologist throughout pregnancy. I actually wanted to, but it was one of these things that didn't happen until actually day 12 of Romy being alive already. I do remember exactly because the neurologist actually told me “Congratulations on your daughter." And so during the pregnancy, I didn't see a neurologist and I had a great doctor for throughout pregnancy and he was there for work. He didn't, we didn't, we did talk a little bit about it, but not crazy. He was very much about, okay, so you seem like, you know a lot about what you should be doing and how you are handling your MS.

Ingrid Adelsberger (18m 53s):

And you just continue to do what you are doing. And then I did have a doula during birth, I mean, during birth. And that again was not MS related, but that was to help that I kind of looked at to have a natural birth and to have somebody that supports me in a positive way, because I didn't want-- you hear all these stories on my, you know, this is, what's your pain level, how is this, all these kinds of negative things about childbirth, and I didn't want that. And I kind of surrounded myself with people that were very positive.

Ingrid Adelsberger (19m 32s):

And I was lucky that my gynecologist did follow my wishes and worked with me on all of them.

Geoff Allix (19m 39s):

And is there anything you would have done differently?

Ingrid Adelsberger (19m 43s):

Yeah, I think what I did, the biggest thing that I think back that I would have done differently is that I would have seen a neurologist right after this relapse or flare up or whatever it was. And maybe I would have done things differently back then. We're talking about 2019 now. Yeah.

Geoff Allix (20m 8s):

And so, and now it's a couple of years later, do you think that being pregnant and then having a baby in the long-term has it caused any effect on your MS symptoms, do you think?

Ingrid Adelsberger (20m 23s):

How do you mean in the long run?

Geoff Allix (20m 25s):

Because you said, so during pregnancy, you think actually you didn't, it probably-- and often it's said actually it could be a positive effect. It's actually protective of you as a mother. And then maybe afterwards, you might've had some flare ups or minor relapses, and then if you went forward another year, would you say actually, do you think that having a baby has actually changed your MS prognosis?

Ingrid Adelsberger (20m 55s):

Prognosis? I don't know. I don't know if anybody can say that, right. Because they always tell us they don't know what's going to happen, but I sadly must say that before April 2019, when these flare ups happened, I would say I barely had anything from MS. And that doesn't mean that I didn't have occasional symptoms. Like something, like, let's say you have to catch an early flight and you get up at four o'clock in the morning. Then I would drive myself to the airport. And I feel like my legs, a little weaker or a little tingling in here and there, I catch a two hour flight.

Ingrid Adelsberger (21m 36s):

I sleep on the plane, I get off and I'm fine. So, I would have things like this or as I said, I would have a normal sign here and there. A little bit of tingling, but that was it. But now, now I have certainly, symptoms. And--

Geoff Allix (21m 56s):

But you couldn't say that was due to pregnancy or, I mean, it's difficult, isn't it? Because this it's not just pregnancy, it's having a child as well. That's a kind of major change.

Ingrid Adelsberger (22m 9s):

It is especially difficult. And that is maybe one thing that I would do differently too. I didn't get MRIs for many, many years because I didn't feel the need to actually get MRIs. I was doing fine, and I felt if I do have a new lesion, I will be disappointed and depressed. But now looking back, if I would have done this, and every year I go for an MRI and every year I have a new lesion, then I probably would have done something, which I didn't because I didn't see the need to, and I felt fine.

Ingrid Adelsberger (22m 51s):

And I did, but now I went for an MRI last year. And then obviously there were some more lesions than in the first year. And so, nobody knows when they came, right. Did they come in 2015 or did they come during or afterwards? So, if I have something that I can give to, if I have any advice to give to people that are listening to this podcast and they want to get pregnant or they are pregnant and, please don't do what I did when it comes to doing MRIs. And I'm sure many don't do that, actually what I did, but just make sure that you are in a situation where, you know what's going on and you can do something.

Ingrid Adelsberger (23m 38s):

Because looking back, I would probably, I mean, you don't have, in hindsight, you all are smarter, but I would probably have started taking something in 2019.

Geoff Allix (23m 51s):

And if you have a newborn baby, as it was quite a long time ago for myself and my wife, but it's incredibly stressful. And for me, it was certainly before I was diagnosed with MS. Certainly before the noticeable symptoms. So how did you deal with the stress, and having MS is stressful, but how did you deal specifically with the stress of having a newborn while having MS? How did you manage the stress levels?

Ingrid Adelsberger (24m 24s):

I think, I don't know if I manage this really well to be honest, we were in a difficult situation in the sense that we were in LA and we were just us, my husband and me. And my husband is a really wonderful, involved dad and so he supported me a lot. One thing that I remember is I breastfed her at 6:00 AM, and then again at 10:00 AM and in between, he let me sleep. So, stuff like that, that I got enough rest, because I think for any new mom, but especially for us with stress, sleep is really important to us. That is one thing that I tried to have.

Ingrid Adelsberger (25m 5s):

As I mentioned earlier already, I slept throughout pregnancy, like 10 hours every day. I love sleeping and resting, and then suddenly you can't do that anymore. And so, I tried to sleep as much as I could. And I also think if you can get the help, whatever that means, you know, family, friends, if you can afford getting extra help. I think that was really important and really, really helpful for any new mom, but especially with MS. So, I think whatever help I could get, it wasn't as much as I would have loved, but it helped to get that little bit of rest. And they always say when the baby sleeps you sleep, but that's really not always doable because you need to get something done and you want to get something done.

Ingrid Adelsberger (25m 55s):

And as I said, I was studying at the time. And so very often when she slept, I would write a paper, or I would read something. So as much as I could, I got the rest that was possible. So, I think my stress levels, I didn't meditate as much, like as I wanted to, definitely not daily. Like I do it now pretty religiously, but that was not right away. And I think that is something that is important, and I would have done differently.

Ingrid Adelsberger (26m 34s):

Does that answer your question?

Geoff Allix (26m 37s):

Yes, absolutely. So, thank you very much for answering these questions and enlightening mothers and prospective mothers about your experiences. Just one final thing, if you were to, to talk to someone who was considering going through the process and thinking about having a baby, would you say that it was overall a positive thing? So, given someone with MS, they're thinking about having a child, would you say, yes, it's been overall positive or actually maybe should avoid it completely?

Ingrid Adelsberger (27m 17s):

Absolutely. I mean, I don't think you have a child, and you look back, I should not have done it unless it was maybe an accident, but in our case, it wasn't. So, I would definitely, I mean, I'm so glad she's around. I think she teaches us so many things and it's just wonderful. I would not have wanted to miss out on that experience. With my MS in a different place right now without having a child maybe, but I don't know. Nobody really, nobody knows. And that would not be my life.

Ingrid Adelsberger (27m 57s):

That would not be the take home message, even that you shouldn't have a baby that may not, but I would, you know, they say it takes a village to raise a child. And I think that is true. And it's especially true when you have MS. So that is not the time to be shy so you should be asking for help, and you should take the help. You should maybe cook when you were still pregnant and you feel okay because when the first month you certainly don't feel like standing in the kitchen and making OMS friendly food, things like this. Kind of like prepare yourself as much as you can and ask questions. Like, I think I did ask a lot of questions, when I am looking back.

Ingrid Adelsberger (28m 39s):

And I said, like, there are so many things that I didn't ask questions about. So, OMS taught me to not believe anything or anybody, but do research for myself and [inaudible]. And so that's what I did with pregnancy too and I have a partner that is exactly the same way. So, we read up and we talked to people and we asked questions. And that is definitely something that I would say is really important that you are a hundred percent there. You know, because sometimes I feel like the kids run, they run on the side, right? You have your career, and you have your partnership and you have your hobbies and stuff, this and that.

Ingrid Adelsberger (29m 20s):

But for us it's like, I say, like, because we are family, right. So, my husband and I, we really, we were there and we researched a lot and we still do, and we make many changes in our lifestyle because we want to be there for our daughter. And I think that is hopefully wonderful for her, that we breastfed.

Geoff Allix (29m 44s):

Okay. With that. Thank you very much for joining us, Ingrid.

Ingrid Adelsberger (29m 54s):

Thank you for having me.

Geoff Allix (29m 54s):

Geoff Allix (30m 40s):

Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more, subscribe to our e-newsletter. Please visit our website at www.overcomingms.org. Thanks for tuning in and see you next time.

View Details

Welcome to Living Well with MS Coffee Break #22, where we are pleased to welcome Jen DeTracey as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. This episode is a little departure from our normal guest format, but we hope you enjoy the conversation with Jen, coming to you straight from Montreal, Canada.

Bio:

Jen DeTracey was diagnosed with MS in 2010. Within six months, she thought she’d never work again. At the time of diagnosis, she was at the peak of her career as a marketing consultant. After navigating rough waters for several years, Jen explored how to begin thriving while living with MS and fatigue.

Fast forward to 2019, Jen became a certified life coach. As a result of this training, she uncovered how to dramatically improve the quality of her life, recognizing that mindset is paramount to wellness and well-being. Jen launched the Women Thriving with MS YouTube channel and Facebook group. In 2021, she launched the weTHRIVE membership to support women who want to connect with others and discover how to thrive with MS. We are better together.

Questions:

Jen, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of the OMS and larger MS community from around the world, and today you’re in the hot seat. Can you tell our audience a little bit about yourself, what you do, where you’re from, etc.?
When were you diagnosed with MS and how did you initially deal with it?
Did you find the healthcare infrastructure in Canada, where you live, supportive and useful in getting and managing your diagnosis?
When you were diagnosed, I believe you were full steam ahead with your marketing career. What kind of lifestyle changes did you have to make to deal with the new MS reality, and how did that affect your work?
Sounds like you dealt with some difficult emotional and physical barriers after your diagnosis. Can you give us a little insight into what you experienced and what helped you manage some of these challenges?
Can you tell us about Lift Strategies, the book you wrote? What’s it about and why did you decide to write it?
You also ultimately founded Women Thriving with MS. Our listeners can get a whole host of links in our show notes, but perhaps you can tell us what Women Thriving with MS’s mission is, and the impact you hope to make on the MS community through this effort?
If there is one thing you can do to make a positive impact on the MS community – let’s call it your legacy – what would that be?
So, what’s next for Jen DeTracey?
Finally, if you tap into your experience with MS for a nugget of wisdom that would help people ease into and better adopt the necessary changes they need to make to their mindsets and lifestyles to live a healthier physical and emotional life with MS, what would that advice be?

Katy’s Links:

Check out Women, Live Better with MS - Discover 4 Powerful ways to REDUCE Stress, a four-part coaching series for women living with MS
Check out Jen’s coaching website, Women Thriving with MS
Check out Women Thriving with MS on Facebook
Check out Women Thriving with MS on YouTube
Check out Women Thriving with MS on Twitter
Check out Jen’s book on marketing on Amazon

Coming up on our next episode:

Thinking of getting pregnant or already are? Join us on September 29 for the next episode of Living Well with MS, featuring OMSer Ingrid Adelsberger’s firsthand account of pregnancy while having MS. You won’t want to miss hearing her story and her insights on this important life experience.

Don’t miss out:

S3E41b Transcript

Coffee Break #22: Jen DeTracey

Geoff Allix (1s):

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today, you'll meet someone living with MS from our global overcoming MS community. Our guest will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (46s):

So, get your favorite drink ready and let's meet our guest. On this episode of the Living Well with MS Coffee Break, I'm joined by Jen DeTracey. Jen's bounced back from her MS diagnosis to author a book on marketing called Lift Strategies and launched a health coaching business called Women Thriving with MS. So, Jen, welcome to Living Well with MS Coffee Break. We're so pleased to have you on our program and the purpose of the Coffee Break series is to get to know some of the MS community from around the world. And so today is your turn and could you tell us all a bit about you, where you're from, what you do and so on.

Jen DeTracey (1m 26s):

Yeah. Hi, Geoff. It's great to be here. And I'm from-- I've been living in Canada for most of my life. Right now, I'm in Montreal and I came from a family of four kids. I'm the only one with red hair and I was the runt of all the tall people. And what's interesting is my father was in the Canadian Armed Forces. So, we moved around a lot, around Canada. We were down in the US in Alabama, which was shocking to me as a Canadian, for a year, as well as in the UK when I was six. So, I had many different schools and was constantly adapting to change. And at 21, I fell in love, but it was with marketing. I attended a business college.

Jen DeTracey (2m 9s):

Yeah, I was my love at the time. And when I graduated, I actually started to do college radio, which was really exciting. I sort of dove into music in a very deep way. And my dream was to work for a record label. We had a small one in Canada, an independent, still exists called Network Records. I don't know. Have you heard of an artist called Sarah McLaughlin?

Geoff Allix (2m 32s):

I'm aware of the name but I can't think of anything she's done.

Jen DeTracey (2m 36s):

Yeah. Well, you know, she's kind of been there, done that now, but back in the day because, I'm 55 right now, back in the day when I hopped into the music business at 26 and was doing that, I was doing marketing for her and that was a blast. In fact, I was in the music business for 10 years until things moved more to digital and dotcoms were dying. And I started my own business and that was a marketing strategy business. So, and I've been doing that online actually. I switched to moving to only meeting with clients online about six years ago, long before COVID hit, as a way to manage my energy.

Jen DeTracey (3m 21s):

And so, I'm doing that presently and I basically aim to work about 20 hours a week and I also started, but I know we'll get into this later. I started the Women Thriving with MS Community. So, we can chat about that in a bit.

Geoff Allix (3m 38s):

Absolutely. And then when were you diagnosed with MS?

Jen DeTracey (3m 42s):

Yeah, it was back in 2010, so almost 11 years ago now. And ironically, it was like at the busiest time of my life, darn it. I was on a three-day speaking tour and right before I left, I noticed I was hugely fatigued and I was just like, okay, I'm just tired because I'm working a lot, like 10-hour, 12-hour days. And, you know, my left hand was acting a little funny and I was kind of like, what's going on with that? So, when I did the tour, it was very compressed and crazy. And I got up on the second morning of that tour and I just was-- I was like, I'm so tired.

Jen DeTracey (4m 23s):

I've got to get out and run because I need to get some energy. And I was running, my left foot started to drop. And I actually, I thought it was hilarious. I'm like, this doesn't hurt. So, what's going on here? But I felt I did have to hide that while I was up speaking with people. Like I had to put a table in front of me, so they couldn't see my leg on day three, which was kind of hanging a little bit. So, when I got back to-- this trip was in Northern Canada. And so, when I came back home where I was living in Vancouver at the time, the next day I went to my naturopath and I went to my physiotherapist to try and get me in shape.

Jen DeTracey (5m 7s):

And they said, "You know, if there's any problems, just come back on Monday. We think there's something in your C3, C4 area of your neck. So, we'll check that out, you know." Again, in the meanwhile, I had plans on that Saturday. So that was on Friday. On Saturday I had plans to go see a play and I met up with a friend and she said, "What's going on with your leg?" And I said, oh, don't worry about that. Like, let's just go in and watch the play. And she's like, "Well, you know, I think you need to go to Emergency." So, I said, well, let's watch the play first. So we went into the play, had dinner because, you know, you can't go to Emergency before having something to eat because you never know how many hours you're going be in there for. You can't go on an empty stomach.

Jen DeTracey (5m 47s):

Yeah. So that's what we did. And so, I was fast-tracked and that night at the hospital, they had done all, everything. And then they've moved me into a holding tank area and they said-- I said, "Excuse me, can I go home now? You've done all these tests." They're like, "No, we're going to page a neurologist to come in in the morning." And I'm like okay. Like I was clueless. What does that mean, you know?

Geoff Allix (6m 12s):

And when you think it might be bad because I've been through the whole chiropractor, osteoporosis type thing that it could be a trapped nerve. And equally, I had a dropped left foot early on, which I discovered from running because I used to do a lot of running and you, yeah, you're expecting it to be a trapped nerve because-- And a lot of sort of chiropractors or osteoporosis people are sort of saying, "Oh yes, we think it's trapped nerve here that's causing this." And so, yeah, to then be told that you're going to see a neurologist, you know, why we would have to see a neurologist? So, I can imagine. But how was the health care system in Canada for treating MS?

Geoff Allix (6m 53s):

Is it pretty good?

Jen DeTracey (6m 54s):

Yeah. What's interesting is it is pretty good in some ways. If I can just, I want to backtrack for a sec to-- So what happened there in that situation was that I was diagnosed within 48 hours with MS. And then they put me on the steroids, gave me the lumbar puncture and everything. And what I found was that I was so pumped up on those steroids that I couldn't sleep, and I felt crazy and that's kind of how I left the hospital, you know, in that state of shock. So, when we look at the healthcare system, I can say that, yes, like I was able to access a neuro and this neurologist, she was great.

Jen DeTracey (7m 38s):

I was so lucky to get her, you know, in the lottery of neurologists. When I left the hospital though, they don't prepare you for anything. You know, I'm pumped up on steroids. I'm in shock. They don't talk to you about diet or next steps. They just say, "You know, here's a piece of paper with some information on the MS Society. And you're going to see a neurologist in three months and just carry on with your normal life."

Geoff Allix (8m 4s):

So to speak the medical part was okay, but the support side of it was maybe a bit more lacking?

Jen DeTracey (8m 12s):

Yeah. There's nothing in place and you know, I think that this is 11 years ago. And I think now with hospitals in Canada and, you know, they're being sort of a stretch of, you know, not as many resources available because the demand for serving people is so high that I don't know if that will ever happen. And that's something that I would like to see change in that industry. It's amazing how you could, if you could just sit down with somebody and say, "Okay, yeah, like this is shocking for you to go through this and here are the next steps that will be happening for you," I think just a great entry point into starting that new journey.

Geoff Allix (8m 53s):

Yeah. I mean, I don't, I've spoken to people from lots of countries now, and I can't think of anywhere that they've said actually that there was someone who gave that sort of support. I mean, there was an element I had of that sort of support, but it was from a neurologist who really had been through the process many times before, but he wasn't trained to give the emotional support side of things. So, yeah. And I'm not aware of any country where they do, to be honest, certainly no one's told me about it, but you're right--

Jen DeTracey (9m 24s):

I think in the US, yeah.

Geoff Allix (9m 26s):

I was just going to say, yeah, you're right. It would be hugely beneficial.

Jen DeTracey (9m 32s):

When I have-- I've had a conversation more recently with a woman who's an MS nurse in the US. She's actually retiring, but there's a whole body of MS Nurses internationally. Most of them are in the US and Canada. And I think that they are more astute to important information beyond the medical side of things for MS. But in Canada, we don't really have that structure in place. And I'm curious in the UK, if you have something like that.

Geoff Allix (10m 4s):

We call it a postcode lottery here. So, it is dependent on where you live really. So, some, I mean, we have a great health care system with the NHS. It's free of views and that's, you know, very effective. And I think a lot of people, myself included might have private healthcare, but that actually find that the national NHS system has been the main thing that they're using, but it does depend on where you are. You certainly get different treatment. And if you're in different parts of the UK, so Scotland has different medications allowed as opposed to Wales, which has different medications allowed compared to England.

Geoff Allix (10m 45s):

So, it does very much depend on where you are. So, after diagnosis, what's next? So, what changes did you make? How do you deal with the reality of having MS?

Jen DeTracey (11m 2s):

Yeah, you know, at that point, because I was at the peak of my career, I really didn't have-- I had enough time to take a break when I came home from the hospital for maybe two to three weeks. And that's because my daughter who lives in Spain, I had a plan to go visit her, but I knew I couldn't. It just wasn't really, I didn't have the capacity, the energy, and after, you know, being on these steroids. So, I basically used that time to recover, but I had six months of training contracts where I would go and do full-day trainings and also regular clients. And so, I had to figure out how can I make that work.

Jen DeTracey (11m 43s):

Because one day, a full training was very difficult. So, I just tried to space them out in a way where I didn't do two days in a row anywhere. And the challenge for me was because I had put so much time and energy into my business in the last three years, leading up to this situation of being diagnosed, that it was completely my identity. So, it was very hard for me. And I took naps every day, but I was reluctant at that point. I've surrendered to that now. Naps are like awesome. But back then, I was just like, why do I have to take these naps? So, you know, by the time I finished those contracts and was just pushing through in my MS denying state of mind, I just hit a wall and, you know, I could barely get out of bed.

Jen DeTracey (12m 31s):

And, you know, I think the biggest fear was losing my mobility. So that's kind of where I landed. And then I had to, you know, really had to look at things and figure out how to do my life differently because denying MS was not working for me. And living in that vacuum around living with MS and fear was just, you know, it was kind of basically purgatory, right?

Geoff Allix (12m 54s):

So, what did help with managing the challenges of having MS?

Jen DeTracey (12m 60s):

I think for me, I was really lucky because my neurologist, first of all, told me when I met with her at three months, she said, you know, often people will grieve their diagnosis for up to three years that she has seen that. And it was really helpful that gave me permission to be able to grieve. It gave me permission to acknowledge that being diagnosed with MS can be traumatic. And so, I just had to make some changes in my life. And also, people were making changes on my behalf. I don't know if you've heard the stat that 75 percent of people that get diagnosed with MS lose family members or friends, because those people can't handle it.

Jen DeTracey (13m 42s):

And that happened to me. I had some, a friend that I was hanging out with that I lost. She just couldn't handle it. I quit running, which I had been doing training for a 10K because I couldn't. So, I had to look at like what could I do? Who was I as a person if I wasn't going to be able to work anymore? That was a possibility. And if I was not going to be able to run anymore, which was my way to destress, you know, how was I going to change that? I know. Did you go through some bumpy times yourself, Geoff?

Geoff Allix (14m 14s):

Yeah, certainly. I went from being very active, so running the marathon. Not long before diagnosis, I used to surf, rock climb, mountain bike, snowboard, and a lot of those things. I'm not entirely ruling them out. I mean, I've been snowboarding since diagnosis, but that's come become harder recently, but, yeah, it's difficult. When that's kind of your, that, as you said, that my life outside work was sport. And a lot of that's become harder. So, yeah, you do have to work out, but you have to work out.

Geoff Allix (14m 56s):

What can you do now? Rather than think about the things that I can't do, I'm thinking about the things I can do and trying to expand the things I can do.

Jen DeTracey (15m 5s):

Absolutely. I think that's, you know, in that soul-searching that I had, where I was deep-diving and asking myself who am I now? Like, who's Jen DeTracey now? And at that point, I decided, you know, one of the things was I needed to feel positive and hopeful. And so, I just kind of had my connection with God in the way that it was. I wasn't really a church-going person, but just that and getting into spirituality. And I had already been doing meditation, but I knew that I needed to get back into that. And I started to get back into my stretching and meditation routine because that was something I was doing before diagnosis to have that in my toolkit. And also I realized that I needed some therapy and the therapist that I picked to help me deal with my anger and upset around the MS just happened to be Buddhist.

Jen DeTracey (15m 56s):

And she really taught me about how to embrace feelings. So instead of being angry and pushing MS away, which wasn't really working for me anyway, pushing it away, it just got worse was that I just had to acknowledge those feelings around it. And by bringing those feelings closer, as opposed to pushing them away, they were able to not feel so big and diffused. And that got me to the place of acceptance around living with MS. So instead of having this relationship of hate or anger towards MS, it was, you know, it's not like I always liked it, but I could accept that it was there. And I think that was a huge, huge turning point for me to realize that MS is a part of me, but it's not who I am.

Jen DeTracey (16m 43s):

So, when people say I have MS, I don't-- for me, I like to say I live with MS, you know. That just feels better for me than saying I have it, you know. I don't know. That's what's feels comfortable for me.

Geoff Allix (17m 1s):

I think a lot of people put that as an acronym of PwMS, People with MS, that you're with MS, you don't have MS. But I mean, yeah, I guess it's just words, but I think it's a mindset thing of how you think about it as much as anything.

Jen DeTracey (17m 18s):

Exactly. To me, it's a mindset thing. And, you know, as part of what I started to do is I started through my therapist. I started going to silent retreats and they were kind of nice because I could have that time to soul search, but I was getting fed by someone else. I could sleep as much as I want, and I had a spiritual director that I could talk to once a day. And I did three 10-day silent retreats over a period of time. And that was really, really great for me and I realized instead of running, I could ride my bike, even though in the first few years, I did have some topples, but I'm good now. And I got back into swimming, and I've always loved walking. So, all of those things seem to work.

Jen DeTracey (17m 59s):

And the only thing that seemed to be getting in my way were vertigo relapses, which in retrospect, back seven years before I was diagnosed, I had a vertigo relapse so bad that I had to be wheeled into the hospital. Like I was just like throwing up everywhere. I couldn't like sit up or anything and had to be put on some kind of drip to calm me down. So, relapses, vertigo relapses have been with me. I have a lesion on the eye center in my brain. And when they were, they are nowhere near like they were in the past. There was one I had, it was so bad. All I could do is lay on my bed or on my floor and listen to audiobooks like Phillip Pullman's Golden Compass, you know, so that's what I did, you know.

Jen DeTracey (18m 47s):

I'm like, I couldn't go outside at first because the light in my eyes was too intense. And so, I just, you know, I was kind of rolling with it and I was living by myself. So, it was a very kind of lonely time, but it was a time of incredible reflection and just figuring things out for me.

Geoff Allix (19m 6s):

And could you tell us about your book Lift Strategies, and why you decided to write that?

Jen DeTracey (19m 13s):

Yeah, that's a great question. And the thing about the book was because I had been experiencing these dark times of being in this dark place. In fact, you know, there was a time in the beginning where I felt suicidal because I felt that the rug had been pulled out under me. But basically, I just asked myself, what is it that I want to do that I haven't done yet? And because I had been out there speaking and technically professional speakers have a book, I decided I'm going to publish a book. And so, I had all these weekly blogs that I'd written for seven years from my marketing strategy business, and I revamped them, and I hired a person to create the book cover and to edit, and all those kinds of things to make that book look really stellar.

Jen DeTracey (20m 1s):

And, you know, that really helped me get back on track. And I also reduced my work hours and I set a goal for myself. I get that book done in a year, to me 18 months because I had some bumpy periods, but, you know, the day that I had my book launch at a little café and brought friends and colleagues that was a pivotal time for me. It's like I hadn't gotten through the hardest part of my life. And I had created something and put my focus towards it. So really it was just for me, that book was-- it saved my life. That's what it did. It saved me and it put me in a positive frame of mind, and it gave me a purpose. And I think that having a purpose is so important to healing.

Geoff Allix (20m 43s):

And the other key thing in your bio mentioned is that you founded Women Thriving with MS. So, could you tell us a bit about what Women Thriving with MS is and the impact that you hope it will make?

Jen DeTracey (20m 59s):

Absolutely. So, my mission, the mission with Women Thriving with MS is to guide women who are surviving with MS to connect with others and discover how to thrive with MS. And when I say thriving, what I mean is living that best life with MS. And this idea came to me at one of my silent retreats. Actually, I was getting some healing touch on a table, and I had this voice come to me saying I could do something more purposeful. And I was really curious about that. What would that be? And so, I walked the labyrinth, and I went up to my little room at my desk, in my little room. And I started to think about why is creating an online community of women living with MS important to me?

Jen DeTracey (21m 47s):

And I think I just wanted to create a space for women to feel they belonged, that they mattered, that there was something for them that may be in their day-to-day life, they didn't feel sometimes understood by the people around them, or they didn't have the encouragement of others who know what it's like to live with MS. And so that's kind of where that came from. And I just feel that having-- I started off with a private Facebook group and during COVID, I invited women to gather on Zoom.

Jen DeTracey (22m 28s):

And women really liked it. And I took them through the coaching experience. And this led to me starting a membership called weTHRIVE, which I just had the first opportunity to open that up in April. So, I have members in there now and, you know, basically, I take them through a process where they focus on one key area of their life that they want to focus on for a six-week cycle. And then every three weeks we meet online, and we see, you know, where the barriers are, where they're breaking through, and look at mindset. And we celebrate those wins no matter how big or small.

Geoff Allix (23m 12s):

Okay. We'll add links in the show notes if anyone wants to look for more information about Women Thriving with MS. There's links available there, so definitely worth checking it out. And that sounds like a great approach. I think, you're almost setting your own target, but then helping each other to achieve those targets, no matter how big or small they are.

Jen DeTracey (23m 33s):

Exactly. And that's why as part of the membership for women that want to participate, not all do, they can be part of a buddy program so that they have weekly support from one another. And one of the members, and what she said was she loved the accountability buddy group, because it keeps her honest, you know. We can say, yeah, yeah, well, I did my exercise or whatever, but when you're in an accountability group, it's like, you know, you can be a little more honest about where you're at, right?

Geoff Allix (24m 4s):

Yeah. Especially actually works well I think now because of COVID and the virtual world that we have, that if everyone's joining up remotely, then actually it doesn't matter. You don't have to be physically living in the same town being somewhere else is sort of normalized in community, hasn't it?

Jen DeTracey (24m 23s):

Absolutely. And if you think-- Yeah, totally. And, you know, Geoff, if you think about it, I mean, there's so many people that live with MS that live in small towns that don't necessarily have the resources, that don't even have, you know, because depending on their income, they may be living in a place where the hospital or different things are quite far away. And so, what is there for them if everything's in person?

Geoff Allix (24m 50s):

So, to wrap up on the things you're doing for the MS community, if there's one thing that could be your legacy for your impacts on the MS community, what would that be? What would you hope that would be?

Jen DeTracey (25m 4s):

Yeah. To me, that's creating a movement for women with MS together from all around the world to support them in just living their lives better with MS. That's really what I'm aiming for as my legacy.

Geoff Allix (25m 18s):

Okay. And what are you planning next?

Jen DeTracey (25m 22s):

Oh, there's always something, Geoff. What I'm going to do is in October, October 18th, I'm going to run a two-week event that's going to happen on certain days called Women Striving to Thrive with MS and it's going to be a coaching sort of two-week period so that people can just hop on and experience that. And if they want to, after that, they can join the women. Pardon me. They can join the weTHRIVE membership when the doors open because I only open the membership twice a year. So, they only have a couple of times when they can become a part of it.

Geoff Allix (26m 3s):

Okay. That's worth knowing. But presumably, all the information is available online about how you go through that membership process.

Jen DeTracey (26m 10s):

Yep. It will be in the links below, and at www.womenthrivingwithMS.com and so on.

Geoff Allix (26m 15s):

And there's a question that we ask all our guests on the Coffee Break, which is that if you were to think about one nugget of wisdom that could help people, maybe the newly diagnosed, adapt to the change they need to make to their lifestyle, to their mindset, to live the best life they can with MS, what would that advice be?

Jen DeTracey (26m 40s):

Okay, well, I'm going to cheat and have three little nuggets if I can.

Geoff Allix (26m 44s):

That's fine. Absolutely.

Jen DeTracey (26m 47s):

So, number one is the slow down with MS. You know, take the time to rest and nap. And before you crash, build that into your life. It can be very restoring and help with the mental health. Then number two is trust yourself. You know your body, especially when you live with MS. You really get to know your body and you know what's best for you. And the last one is number three, which is know that we're better together when we live with MS. Living in a vacuum is a lonely place. I know because I've been there and if you're not already part of an MS community, find one that's a good fit for you, like Overcoming MS, Women Thriving with MS, because we matter.

Jen DeTracey (27m 38s):

And, you know, it's important to have that support and belonging so that you can heal and be healthy and experience harmony.

Geoff Allix (27m 48s):

Yeah, absolutely. I mean, I think because I came across Overcoming MS very early, then I felt part of a community, but I mean, I don't know what it would be like, but I imagine it would be really difficult if you were diagnosed and you saw your neurologist maybe every six months and in between nothing, that complete vacuum of support. I mean, the support is there, if I can go to the hospital, I can see an MS nurse, but these are things that I have to ask for. I can imagine that people could just be sitting at home, see their neurologist, maybe even annually and in between that having no experience, because I don't have a sort of Overcoming MS community.

Geoff Allix (28m 33s):

I don't know anyone else with MS. My father had MS, but that was many years ago when he died. So, yeah, it would be very lonely. I think you're absolutely right. But for that community, and slowing down as well, that's a really useful bit of advice I was given actually from my first visit to a physio, since I was diagnosed with MS, who actually said, "You need to stop worrying about things like speed and time and things like that." For example, don't worry too much if you're late occasionally. He said, "Honestly if you're late, what's the worst thing that could happen?" So, he said, "Getting stressed is more of a problem for you than actually being late.

Geoff Allix (29m 16s):

So, assuming you don't work as an ambulance driver or a fireman, then being late is not a big issue." And he was absolutely right. Actually, yeah, you can say to someone, "Yeah, I'm sorry. I was a bit late, took me a bit longer getting out of the house,” which it sometimes does. And people will accept that. It's not a big thing. It doesn't really matter too much, assuming you're not in a time-critical job obviously. Yeah, but absolutely. Thank you very much for that. And with that, I'd like to thank you for joining us, Jen DeTracey.

Jen DeTracey (29m 52s):

Thank you, Geoff. It's a pleasure being here today.

Geoff Allix (29m 54s):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus Information there. If you'd like to be featured in a future Coffee Break episode, or have any suggestions, please email us at podcast@overcomingms.org. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS Charity and help keep our podcasts advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (30m 38s):

View Details

Welcome to our third installment of Ask Jack, featuring the prodigious culinary talents of professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Set your dials to this station for this season’s final episode, Ask Jack #5, premiering on November 10, 2021, just in time for the holidays. Beat the rush and submit your questions for the next Ask Jack early by emailing them to podcast@overcomingms.org.

Introduction

In this episode, we have received a smorgasbord of questions from all over the world on all sorts of saucy, nutty, oily yet all delicious topics. So, let’s see what food- and cooking-related questions are coursing through the culinary minds of the OMS community.

Questions 1 + 2

Our first question is about vegan cheese. Rebecca from Scotland is wondering about tips for making a fermented cashew cheese. She’s thinking about using probiotics or cider vinegar. Her main concern is how to know if it's gone bad to ensure eating it doesn’t make her ill.

Pro tip from Jack: for those who are interested in pursuing the art of making vegan cheese at home, Jack recommends Artisan Vegan Cheese, by Miyoko Schinner (available through all major book outlets). For a more in-depth dive into the world of Vegan Cheese, visit Berlin-based Cashewbert - they offer online information and instruction, as well as supplies to those based in Europe.

Rebecca also wanted some tips on eating out and how to make decisions about what to compromise on? What if she’s really stuck while out somewhere and one option contains coconut oil and another contains palm oil and another is fried in a small amount of vegetable oil, how is she supposed to decide on the lesser of all evils in a pinch?

Questions 3 + 4

Emma in the UK had a couple of questions for our resident foodie: firstly, what is your best recommendation for a halloumi replacement? Secondly, what’s your best recommendation for OMS-friendly takeaway food (that’s takeout for our listeners in the US)?

Question 5

Let’s talk veggie fritters. Kay in New Zealand used to love vegetable fritters of many different sorts. Some just with the vegetables, some with flour, maybe herbs or spices, etc. They were one of her favorite lunches. She’s tried to make them by baking them in the oven but finds they come out dry and a bit leathery compared to frying in oil, meaning they lack that lovely crispiness. Is there a solution or something she could do to improve the crisp factor in her fritters in an OMS-friendly way?

Pro tip from Jack: have a look at Jack’s recipe for making OMS-friendly vegan sweet corn fritters.

Question 6

Here’s a saucy question from Nicola in Canterbury. She was wondering whether you have any good ideas for a bechamel type sauce. She’s experimented with various recipes to use in a lasagna but hasn’t found anything yet that tastes great. What’s your secret bechamel replacement?

Pro tip from Jack: there are several recipes that will make you forget what dairy-based bechamel sauce ever tasted like, include Jack’s eggplant mushroom lasagna, Jack’s vegan bechamel, and Jack’s Sicilian tomato sauce. Try one or try them all and let us know what you think!

Question 7

Belkis from Istanbul just got a machine called a Thermomix and there are a lot of recipes which makes cooking much easier. Plus, there are lots of recipes in their database. Many of these have you add extra virgin olive oil while cooking with other liquid and the machine shows the temperature and often it is not above 120 C. So, if you’re cooking with some other liquid like vegetable stock or water or chopped tomatoes, plus you add olive oil, is it OK to cook under 180 C, just like with the baking and oven rules? Is what they recommend OMS-compliant?

Question 8

Fran from New Zealand is going to open a can of legumes for us. She doesn’t tolerate this food group well, though many OMS recipes call for lentils and such. So, what’s your suggestion for getting around legumes but still retaining the substance they bring to cooking?

Question 9 + 10 + 11

We’re going to end on an oily note with some questions from Tania in Australia that relate directly or indirectly to oils: firstly, is it OK to “sweat” onions and garlic with oil free vegetable stock instead of water? And other than olive oil, what’s the next best oil to have in one’s pantry?

Lastly, from Fran is a question about air fryers, which we delved into on a previous episode. She’d like to know if using one if healthy on an OMS diet. She’s concerned they may release some sort of emissions.

Thanks so much for another fantastic and informative round of food Q&A. For those of you listening, you’ve probably built up an appetite. Join us again starting November 10th for the holiday edition of Ask Jack, so submit your questions early to podcast@overcomingms.org. Till then, happy OMS-friendly cooking and eating!

Links:

Connect with Jack in a number of ways if you’d like to follow his work or gain some more insight into his OMS-friendly vegan culinary world: Website | Instagram | Twitter | Facebook

In addition, Jack has started a newsletter publication called VeganWeekly that shares three vegan recipes weekly to try at home. Subscribe to it here.

Coming up on our next episode:

Join us on September 20 for the 22nd installment of our Coffee Break series, where we “travel” to Montreal, Canada to meet Jen DeTracey: marketing expert, author, certified life coach, and founder of Women Thriving with MS. We hope you’ll be inspired by her story!

Don’t miss out:

S3E41b Transcript

Ask Jack #4

Geoff Allix (2s):

Hi, I'm Geoff Allix, host of Living Well with MS, the podcast for Overcoming MS.

Jack McNulty (7s):

Hi, I'm Jack McNulty. I’m a professional chef, and serious OMS foodie. Welcome to Ask Jack, a special Living Well with MS podcast series where I'll be answering food and cooking related questions submitted by you, our Overcoming MS community.

Geoff Allix (25s):

If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org. That's podcast@overcomingms.org. And now, let's rev up our appetites and dig into this episode. So welcome back to Ask Jack, where we ask professional chef Jack McNulty food related questions for people following an Overcoming MS Diet. So, welcome back, Jack.

Jack McNulty (52s):

Thanks, Geoff. It's great to be here for another episode. I looked over some of the questions earlier and I must say there's some excellent questions to dive into this episode.

Geoff Allix (1m 3s):

So, yeah, this episode we've not got a specific topic but we're going with general questions that have come up in the forums and that have been asked of us by listeners. So, if we jump straight in, we've got a question from Rebecca in Scotland. She said I've been wondering about making a fermented cashew cheese and any tips -- that I had to be honest, I've actually followed Jack's tips to make a fermented cashew cheese. So, it was pretty good, but I'm quite interested whether I was doing it right or not. Everyone survived. So that was the main thing. So, she said, “I have probiotics or could buy cider vinegar, or my flat mate makes Kombucha, which I could use.”

Geoff Allix (1m 51s):

My main concern is to know if it's gone bad or could make me ill. I'd also love test tips on eating out, and how to make decisions on what to compromise. I know obviously in an ideal world, I would never compromise but if I'm stuck out somewhere and one option contains coconut, and another option contains palm oil, and another is fried. It has a small amount of vegetable oil. How am I supposed to make the wisest choice? At the moment I don't take any dairy ever and will never take anything deep fried. But with oils versus say a skinless chicken fillet which is the least bad option for a once in six months compromise. So, let's start off with the fermented cashew cheese.

Geoff Allix (2m 31s):

How would you go?

Jack McNulty (2m 32s):

Yeah.

Geoff Allix (2m 32s):

I mean cheese is one of the big things. I think with dairy there's alternatives for milk, there's alternatives for yogurt, but cheese is a tricky one. Because the cheese in the supermarkets tend to be very high saturated fat.

Jack McNulty (2m 47s):

Um-hmm.

Geoff Allix (2m 47s):

Coconut oil-based cheeses. So, there are also cashew cheeses. So how would we go about making a cashew cheese?

Jack McNulty (2m 57s):

Yeah. First of all, Rebecca outstanding questions you kind of get in at the heart of a lot of concerns that probably a lot of newcomers are going to have. So, why don't we dive into that. With respect to the cheese question. Yeah, so many people are really interested in plant-based cheeses and what to do about that. So many people are trying to experiment at home and making plant-based cheese mostly from cashews. Let's take a look first at what's going on there. In order to make sort of a cheese out of cashew nuts, there's a couple of things that need to happen.

Jack McNulty (3m 44s):

And the first thing that needs to occur is bacteria or an enzyme for both from a living culture needs to be introduced in order to coagulate the proteins in the cashews, and also to ferment the mixture and convert the starches to a lactic acid. This is going to release these flavors, this acidic component but also start to create cheese-like flavors. It's very mild, so it's nothing like a normal cheese that you would be maybe familiar in eating but it goes a little bit in that direction.

Jack McNulty (4m 28s):

So, in order to make a cashew cheese: the first thing you need to do is you need to grind the cashew nuts very, very fine. And then I found that it's best heating the cashew puree or ground cashew mass straightaway as it sort of helps with the proteins to coagulate once you introduce the bacteria, which is the next step. And that needs to be a live culture. So, something along the lines of perhaps a soya yogurt, or a water kefir, probiotic capsules.

Jack McNulty (5m 12s):

I think Rebecca mentioned that. Or something else called Rejuvelac, which is something I experimented with. Now, Rejuvelac is another process and something you can make easily at home and it's basically fermented whole grains that you just basically are soaking in water, leaving at room temperature for a couple of days. And the grains began to ferment and take on sort of a cheesy aroma. It's quite an interesting process and it works really well in terms of creating these live cultures and enzymes to help with the cashew cheese. So that helps the process.

Jack McNulty (5m 54s):

That gets the process started. And it creates a sort of lactic acid and the cheesy flavor with the cashew nuts. But what really is necessary is to add further enzyme at this point. Something like from Koji, or vegetarian rennet, or nigari, which is often used to set tofu, soya milk converted into tofu. And this is going to bind the proteins together. And this is what's going to create a more firm, or semi firm cashew cheese. If you leave that process out, your cashew nut that's been fermented is going to be more creamy.

Jack McNulty (6m 37s):

It's going to be more of a thick dip if you will rather than a cheese. So just to clarify that a little bit. So, that's the process. We'll put in the show notes a link to what I do, and also some other places on the internet, if anybody's interested in going out and experimenting with making their own. Which gets to the second part of the question, how do you know if you're doing it safely or if it's gone off? Or if you're going to make yourself sick?

Geoff Allix (7m 12s):

Before you go on to that, I mean I think, because I have experimented a bit.

Jack McNulty (7m 16s):

Yeah.

Geoff Allix (7m 16s):

And I think you can because you're mentioning that sort of yeasty flavor.

Jack McNulty (7m 22s):

Yeah.

Geoff Allix (7m 23s):

And you can, I've tried with different things. I think kombucha was mentioned. I haven't tried kombucha. But certainly, I was making sauerkraut and using liquid from sauerkraut because it's a fermented liquid. That worked actually because it had those natural bacteria in it. So, I guess I get --

Jack McNulty (7m 45s):

And alpha has a lot of lactic acid which is very helpful in the process.

Geoff Allix (7m 49s):

Okay, so it could work.

Jack McNulty (7m 50s):

Yeah.

Geoff Allix (7m 50s):

I just saw that somewhere and you could try that. And the other thing to the thickening, I think, agar-agar, which is a sort of seaweed-based sort of gelatin type. I mean, the risk is it goes a bit rubbery if you overdo it, but then a small amount could bind it quite well. And so, there's different things you can do. There you can experiment. And try with like herbs and spices as well that's I think, you know, to give it the flavor. Now adding chives, adding something to make it more spicy, I think there's all sorts you can do. It's one of those things, if you like cooking, try stuff out.

Jack McNulty (8m 28s):

Yeah, exactly. The world is relatively open when it gets to that. And when you put a foot into the fermentation door, then you're really getting somewhere, because there's all kinds of possibilities out there for creating interesting flavors and tastes, and things that are really healthy. But you do have to be careful because you're playing around with things that can go bad if you're not careful. So, if you are getting into this world, it's very important to invest in a good thermometer because temperatures are very important.

Jack McNulty (9m 10s):

It's also very important to work extremely clean, which means understanding how to sanitize properly all of the equipment that you're using just to reduce the probability of something going off. Fortunately, when you're making cashew cheese, if it goes off it's going to let you know. So, there's a couple of molds that might appear on the surface of a cashew cheese. The general bluish-greenish mold, those are fairly harmless. Obviously, because you see blue cheese and that's basically just a mold anyway.

Jack McNulty (9m 55s):

So, if that develops on the surface, you can just wipe that away and carry on. The more dangerous, and more common with cashew cheese, you get the mold is reddish in color. And that is going to be harmful. And so, if something like that develops, you're going to want to just throw away whatever you have. But mostly what's going to occur is the smell is going to go off. And it will be fairly offensive at least it is to me. And that's usually a pretty good sign that I don't want to put something in my mouth. The other little taste test you can do is something just starting to go off. You can put a little on the tip of your tongue and if there's an immediate tingling that's going on, on the tip of your tongue, you know that the process has already started that it's going off.

Jack McNulty (10m 43s):

So that's usually when I'll just get rid of something. I like to err on the side of caution when it comes to that sort of thing.

Geoff Allix (10m 53s):

Okay, it's good advice. So, the second part of the question was about missing out and compromise. I mean I, prior to COVID, used to travel quite a lot.

Jack McNulty (11m 3s):

Yeah.

Geoff Allix (11m 4s):

So, different parts of the world are easier than others. Some like the US, have lots of people that have dietary requirements. France very, very hard. And then others in between. So, Thailand, I found was one mentioned of coconut here, which was certainly a compromise that I made there because lots of things contained coconut. But what is the compromise you'd make? If you've got possibly coconut, you've got maybe some palm oil, or you've got some vegetable oils, which are -- is there a less bad option?

Jack McNulty (11m 51s):

I love the way that question is phrased as less bad off. First of all, I think it's harder to make good decisions today than say, a dozen years ago. Primarily because there are just so many other options that are out there. There's so much stuff on the internet that is promising this or that. And people move around quite a bit more. And they get right to this situation that you were describing just now, Geoff, when you're out traveling. But in my mind, I think it's -- well, I don't like using terms like compromise, or allowances, or treats because I think this plays tricks on the mind.

Jack McNulty (12m 34s):

And it's best to stay away from letting those terms sort of infiltrate the mind. They lure you into thinking what you miss in your diet instead of promoting what is possible. It's kind of like, it's a what you cannot versus what you can do, kind of mentality. I found that the trick really is to minimize the impact and try to use different strategies. So, if you're out just going to a restaurant, maybe calling ahead, researching the restaurant beforehand is always helpful. Maybe even eating before you even go out so that you can stick to lighter options on the menu, and you have a lot more control on that aspect.

Jack McNulty (13m 22s):

I think anytime that you go out to eat, you have to recognize that you're already going to make sacrifices because you're leaving yourself open to whatever is in the restaurant. And most restaurants are not going to be living on the safe side, when it comes to what we expect. They're going to be using ingredients that are not necessarily the best ingredients. For us, they're going to use cooking techniques, not necessarily the best for people following an OMS diet. And so, you're already going to be a little bit behind on that. In terms of going out, yeah, when you're traveling, I think it's really, really important to just understand before you leave and take off what you're getting yourself into and understand that, well, I'm not going to stress if I have -- if I'm in Thailand, and I want to eat because I have to eat.

Jack McNulty (14m 22s):

And if I have to eat there might be a little bit of coconut milk, but this is a week-long adventure, and I'm just not going to stress about it. When I get home, I'm going to live in the good health lane for a good long time and make sure I get plenty antioxidants and all those sorts of things. I know when I travel, and I follow a pretty strict 100% plant-based diet. When I travel, I do make allowances and say okay, it's just easier for me. If I'm in an ocean environment that I'm going to order a little bit of fish here and there. And I just don't stress about it. I take care of myself when I get home.

Jack McNulty (15m 4s):

So, I think it's understood, especially when you're starting off on the OMS diet that you're going to make mistakes along the way. There will be situations that come up that are out of your control, and just accept them as part of, “Well, hey, that's just life.” And it's, you know, as long as you don't make a habit out of it or don't say, “Well, this is a treat or a compromise because that allows you to do that again at some other point.” Just let it -- I just said, “If I find that I've made a mistake somewhere along the line, or mistakenly eaten something that I'm not supposed to eat, or not wanting to eat, I just let it fall off my shoulder and just move on.”

Jack McNulty (15m 54s):

I usually have a good laugh about it and carry on. That's I think that's just the best way to approach it.

Geoff Allix (16m 0s):

Yeah, I certainly, I think that the saturated fats side of it is may be the one -- so I would have a situation where I definitely wouldn't have any dairy. I definitely wouldn't have anything that had been fried. Certainly, absolutely not deep fried because you know that. I mean, to be honest, it would, it doesn't appeal to me at all. I think you just get out of the habit. But saturated fats, I sort of think, which is where the sort of coconut comes in. You sort of think, Well, okay, if literally that day or that, you know, I'm basically eating everything very clean. And I've had something which has some coconut.

Geoff Allix (16m 41s):

And I think, okay, saturated fats and that will have gone up a bit. But that I'm sort of, I know, we don't really count them. In the early days, certainly, when I first met you, Jack, I was counting saturated fats for the day. Now, that's discouraged. But it's certainly still a situation where we're trying to keep that down. It can't be zero. So that's just contributing towards saturated fats. And so that's where I would think, “Okay, there's a bit more saturated fat in that than I would like, but actually, the rest of the day I'm keeping to almost zero saturated fat.” So, there I would compromise. And yeah, maybe compromise is the wrong word.

Geoff Allix (17m 22s):

But you're sort of thinking, OK, within a day, or certainly within a week, my allowance is a fine. I haven't had any dairy.

Jack McNulty (17m 29s):

That's right.

Geoff Allix (17m 30s):

And so yeah, you can always find something to hone always, but mostly find something to eat.

Jack McNulty (17m 38s):

That's right. It's creating a balance, you know. And I found that there's -- you know, when you're out and about, and you're looking for that quick snack whether you're traveling or just in the city somewhere or something, you know, everybody's looking for, what kind of quick little fast food can I get? And people often forget, like you can just go into a supermarket. And supermarkets have so many healthy things that you can just grab. Grab a banana, grab an apple, whatever. You know something like that. I know when I was in Australia traveling around and kind out in the outback is not necessarily the haven for good healthy food and those locations that oftentimes we would just slip into a grocery store, grab a piece of bread, get an avocado.

Jack McNulty (18m 29s):

At that time, I was eating a little bit more fish, maybe some smoked salmon or something. Go have a picnic somewhere and enjoy it. It was just so much easier than stressing out, what can I possibly eat in a restaurant? A supermarket is a fantastic place to go find food.

Geoff Allix (18m 45s):

And we mentioned earlier before the call about going to Italy, and pizza is great -- yeah, pizza is almost ubiquitous around the world. Now you can get pizza pretty much anywhere. And if it's a decent pizza restaurant where they're making it fresh then a pizza without cheese on, you can say, "What's going to be on it?" Assuming you're not gluten intolerant that would be the only issue. But other than that, I properly made pizza without cheese, a vegetarian pizza should be absolutely fine.

Jack McNulty (19m 18s):

That's right. That's right. And there's always options. Even a Japanese restaurant to go have some sushi or something like that.

Geoff Allix (19m 24s):

Yeah, just watch out with sushi. Sushi is a

Jack McNulty (19m 28s):

Yeah.

Geoff Allix (19m 29s):

Because a Japanese sushi shouldn't have mayonnaise. But they’ve decided to Yeah, I was, we were eating sushi just the other day, we made that at home. We just, we like to make sushi sometimes just as a fun thing to make with the family as well.

Jack McNulty (19m 45s):

Yeah, that’s right.

Geoff Allix (19m 46s):

You can make, yeah, fantastic sushi. But yeah, you're right. But yeah, just watch out for the mayonnaise but other than that. And the other thing I was going to say there's a -- I don't want to overly promote an organization, but there's an app called Happy Cow, which is on Android or iPhone. And if you look up the Happy Cow app, it's free to install it. And it works globally. I've not been to a country where they don't have restaurants. And basically, it's about listing vegan places. You can do vegan, vegetarian, or places that have vegan choices on the menu. So, you can go to places fully vegan. I think it's more for ethical vegans there.

Geoff Allix (20m 28s):

They don't want to go anywhere that would possibly have any meat products. But I mean, those sorts of places, and everywhere I've had places listed on there. And then you can find some amazing things where your countries that you might think you almost had nothing, there will be something on Happy Cow. And because it's an app on your phone and just lives on there, on the phone somewhere, and need some food, have a look and almost certainly there'll be somewhere nearby that at least has options that are vegan.

Jack McNulty (20m 58s):

And I would just throw one caution out there just because a restaurant is calling themselves vegan doesn't necessarily mean it's going to fit within the OMS lifestyle. Because in today's modern vegan world, let's face it, there's just simply a lot of unhealthy food being served under the guise of vegan is healthy no matter what it is. And that's not true. That's just simply not true. And so, you still have to exercise a little bit of caution.

Geoff Allix (21m 30s):

Yeah, French fries deep fried in palm oil are vegan.

Jack McNulty (21m 35s):

Yeah, exactly.

Geoff Allix (21m 36s):

I think, but yeah, it's a bit of normalcy. If it's a vegan restaurant you can then sort of, you think, “Okay, that's one thing out of it. So then if I mean things which are not obviously fried, then you're most of the way there, so you can –“

Jack McNulty (21m 48s):

Yeah.

Geoff Allix (21m 48s):

So yeah, have a look around there's almost always choices. So, there's some connected questions that have come up from Kay in New Zealand. She said, "I used to love vegetable fritters of many different sorts. Some just with vegetables, some with flour, maybe herbs or spices. They were one of my favorite lunches. I've tried to make them by baking in the oven but don't really like the result which often seems to be a bit dry and a bit leathery compared to frying in oil. Plus, it doesn't often have that lovely crispiness. So, is there a solution or something I could do to improve my fritters... And again, without even mentioning vegan things, because I saw the other day, we were in a place for lunch and they advertised…

Geoff Allix (22m 31s):

They had a vegan menu. And one of the things they had was deep fried vegetables which are vegan but yeah, not suitable."

Jack McNulty (22m 42s):

Yeah

Geoff Allix (22m 44s):

That's the exact word I couldn't remember. It was .

Jack McNulty (22m 49s):

Um-hmm.

Geoff Allix (22m 49s):

So yeah, any tips for Kay?

Jack McNulty (22m 52s):

Yeah, definitely. Kay, it’s a great question. It seems like maybe you were spying on me yesterday because I just made vegetable fritters yesterday for myself. I too like having them. The problem of course, first of all, a vegetable fritter is sort of any vegetable that is bound in a batter or even breaded. And so, they're traditionally deep fried or pan fried in oil. Falafel, for instance, would be considered technically a fritter. Although we don't really think of it in those terms, but basically, that's what a fritter is going to be. I like to think of it as sort of a thick pancake batter with vegetables in it that's been deep fried.

Jack McNulty (23m 39s):

So yeah, obviously, the deep-fried portion is not necessarily going to be anything that we're going to want to eat, if you're following an OMS diet. It does give a very lovely crispy exterior and this little soft interior. So, what I found that’s worked for me on making a vegetable fritter is I start by preparing the vegetables. So sometimes I'll even go ahead and precook the vegetables just in a pan with a little bit of water just to soften them, just to make sure that they've had a head start on the cooking process so that they're not crunchy in the middle, because I want that soft interior.

Jack McNulty (24m 24s):

Then I'm basically just going to make a batter. Much the same way that you would make like an American pancake or, a crepe powder or something just to make it thick. So, a flour of sorts. It doesn't have to be wheat flour. It can be gluten free as well. I happened to make a corn fritter the other day or yesterday with masa harina, and just polenta. Actually, it was lovely. So, you get that flour, probably a little bit of starch that always helps. The starch will help make the exterior a little bit crispy. And just enough liquid to hold it all together.

Jack McNulty (25m 7s):

So, I helped with the binding by incorporating as well a little bit of silken tofu. So silken tofu, a normal egg is going to weigh around 53 grams or something like that, that's a little less than two ounces. And so, I take the same amount in weight of silken tofu. Since about two tablespoons of soft silken tofu that all blend together with the liquid and then just create it to make a mix with the flour, put the vegetables in. Now the trick, is how to cook it? So, I again think in terms of an American pancake. I'll use a nonstick pan. I make sure it's heating for a good 10-15 minutes on the stove at a medium low temperature.

Jack McNulty (25m 54s):

So, for instance, medium low for me would be number 4 out of 10. And I'm just letting my pan get nice and hot. Without anything in it, it's not smoking away, it's just hot. So now I have some choices. Sometimes I use a little bit of parchment paper. And I'll just put ice cream scoops of what I use as batter on the paper and lift the paper right into the pan. Or sometimes I just go directly into the pan, as I would by making a pancake. And I leave the temperature at medium low, sometimes maybe lifting it up to medium. And just basically watching the sides of the fritter when they start to turn a little bit of a golden color, you should be able to easily see that.

Jack McNulty (26m 42s):

You just gently flip them and then cook the other side. So, it takes maybe two to three minutes on the first side, and maybe about one to two minutes on the second side. I remove them, keep them on a pan with some baking paper on it and I continue the process until all the fritters are made. So that's part one of the cooking. What I will do, at that point you can actually by the way just freeze them for later use, or you can carry on. So, I set the oven temperature now to hot. So, by hot around 200 degrees centigrade or about 390 Fahrenheit.

Jack McNulty (27m 26s):

And I'm only using the top heat. So, in America, they call that broiling. In the UK, I think it's called grilling.

Geoff Allix (27m 33s):

Yes.

Jack McNulty (27m 33s):

So, I was just using the top heat in the oven, and I tried to set the rack as close to the heat as I possibly can. And I just slipped those cooked fritters just under the heat for about 3-4 minutes, take them out, flip them, pop them back in there. And they're very good. Develop a really nice crispy exterior and a really soft interior. And you're just delicious. So that's how I would recommend doing that.

Geoff Allix (28m 2s):

So, another question that's come in. This is a sort of multi-part question here from Emma in the UK. So, she starts off with, I was diagnosed with a relapsing-remitting MS a few months ago, and luckily found the OMS plan. What tips would you recommend to someone just starting out on their OMS journey?

Jack McNulty (28m 26s):

Be patient.

Geoff Allix (28m 28s):

Um-hmm.

Jack McNulty (28m 30s):

Well, I mean, that's actually a very common question to get. I'm assuming just starting the OMS journey on the food side. I think as a whole, you have to be patient with all of the steps and incorporate them as soon as possible. But if you're making major changes to the food, you have to really look at your whole situation and understand, what that impact is going to be in your life? I think that's one of the very first things that you want to do is understand, what are you willing to do to get your health back or to get you some degree of stability when you're using the diet?

Jack McNulty (29m 9s):

So, I look at my cultural situation. I look at my capability in terms of cooking. I look at, how much time do I have with my lifestyle, my working 100%? How do I shop? So, you have to take all of those things into consideration and then just say, "Okay, where can I begin with all of those things?" And generally, what I like to tell people is take the time to learn maybe two or three really healthy things and start there. And you know, every month, maybe every six weeks or so, learn something new and just keep expanding.

Jack McNulty (29m 52s):

And looking at this adventure that you're now on as a way of really expanding what you're capable of doing rather than looking at it and just saying, “Oh, geez, I can't do this. I can't do that.” And it's getting back to that same thing I mentioned earlier. It's that mentality of, “Oh, I can't versus Oh, I can.” And I like to encourage people to take the “Oh, I can” kind of route and say, “Well, look, I have this possibility. Now, I’m really learning a lot of new things and incorporating that.” Once you get beyond that, I think it's really important to look at your kitchen, get rid of anything that's going to tempt you.

Jack McNulty (30m 37s):

You know, when you restock your kitchen, look at perhaps what kind of equipment you have in the kitchen, what might be necessary, and set yourself up for everything that you possibly can do to make your life a little bit easier in the transition. And part of that is eliminating all those temptations.

Geoff Allix (30m 58s):

Yeah, I mean, I think there's a lot of cooking with a whole food-based diet. Actually, it just takes you back to cooking properly. And I found that there's, yeah, a lot of good food. I don't feel missing out. I'm actually cooking delicious food now because I'm not cooking ready meals. I'm actually cooking properly. And having a folder of recipes is really handy. Just when you find a good one, add it to the folder. If you find improvements, change that one. And it just gets bigger and bigger. And then you've got your own recipe book that is suitable. You know, images -- I know they're no brainers, they will work, they will do absolutely fine.

Geoff Allix (31m 43s):

So, I can always just go into my own recipe book. And when I find one, I mean, I know you're probably not supposed to photocopy recipe books. I'm sure there's copyright issues against that. But if I own a recipe book, then I'll add that I just photocopy. So, I add it to my, go to. Because in whatever book you get, there's going to be ones that work, ones that don't work. Vegan cookbooks as we've mentioned, there's going to be plenty of things you can't eat in there. There's a sort of a few very high-profile vegan chefs who've got lots of good stuff, but equally have some things are not compliant. So, it's just finding the good ones. So, to go on to her second -- I'm going to go to her third question.

Geoff Allix (32m 24s):

If you had to do takeaway, what would you choose? So, I think we've probably covered so. And so personally, I think it's a last-minute takeaway. Pizza is my pretty much go-to. But what would your takeaway be?

Jack McNulty (32m 35s):

Yeah, it kind of depends on the scenario of where I find myself. And again, it's kind of a little bit similar to what we were talking about earlier. But I can't emphasize enough. Don't forget about the supermarket. There's just so many different things that you can quickly go in there, and grab, and just go find a nice bench in a park somewhere and have a picnic. Generally, those are going to be much more pleasing and satisfying meals than sitting down and stressing in a restaurant somewhere and trying to have a discussion with someone that's totally not interested in your health. And just kind of take control of the situation and try to find something that you can enjoy.

Geoff Allix (33m 19s):

I thought the worst, the one time I've had a massive problem it didn't work was a long delay at an airport.

Jack McNulty (33m 26s):

Yeah.

Geoff Allix (33m 27s):

Literally there was nothing at the airport that I was comfortable with. There was no fresh food at all. It was basically, there was some fried chicken outlets. And the stuff for sale in the shops was massively processed. And yeah, so that's the only time I think that I literally went hungry. I just thought there was nothing I'm going to eat here. It was a small provincial airport, and a long delay. And so that's the only time really, let's say.

Jack McNulty (33m 59s):

Yeah, fortunately those situations don't come up so often. Generally, no matter where you are, there's always going to be some kind of option that you can look to. The real question there is, you know, satisfying that temptation. Because when you're really hungry, you know, all your senses are out there and you're craving things that probably not going to be necessarily good. Because when you get to the point of hunger, biology sort of takes over and you're going to crave fats, and you're going to create salt.

Jack McNulty (34m 40s):

Salty kind of snacks or something that's fatty. And obviously those are the things you want to stay away from. So, you have to get over that at some point and just say, “Okay, look, I don't want to go down that road. So maybe I'll eat a banana instead.”

Geoff Allix (34m 58s):

And the other thing is to be more prepared. I mean, I think, my daughter is much better at this than me. Although she's not got MS but she does largely follow the diet. And she's always got these, like homemade flapjacks or sort of protein bites. And that she's actually, you know, whatever happens, then she's got a load of homemade flapjacks that she can, which will fill her up. So, there is that. And yeah, I probably shouldn't have been going to -- I think I was coming back from the Alps. And it was, and so, yeah, so I hadn't had the opportunity to make something, but it's just one of those things. Like it's the only time it's happened. So, there's always something, otherwise. I'm going to go -- so I skipped her last question, but a second one, because this is a very difficult one.

Geoff Allix (35m 40s):

What is your best halloumi replacement?

Jack McNulty (35m 46s):

Yeah, well, for those who don't know, halloumi is a cheese that's from Cyprus. And it's made from a combination of goats and sheep milk. Traditionally, although some of the newer versions have cow's milk in them. And it's really beloved in the Mediterranean because it grills very nicely. And yeah, that sort of soft interior and the shape holds on the exterior. Then, there are some vegan versions that are around, but I would not recommend going down that path. I've looked at some of those. They're all really quite unhealthy.

Jack McNulty (36m 26s):

So, I would say, there are no real replacements for halloumi. However, what you need to really ask yourself is, what is it that you're missing about the halloumi cheese? Is it the texture? Is it the flavor? Is that the sensation of eating something warm that sort of meltingly oozing? You know, and try to understand a little bit about what you're missing there, and then saying to yourself, or asking yourself, “What are the replacements for that?” So, with halloumi, first things that springs to my mind are: eggplant would be one, and tofu would be another.

Jack McNulty (37m 15s):

So, with eggplant, when you cook eggplant in a certain way, I mean even roasting it, you're going to have that sort of nice exterior but inside can be very meltingly oozing sort of like a cheesy experience. So, you can just dress it up with a little bit of oregano and a little bit of salt and have something similar. The same can be said with tofu, which people are afraid to use that for a number of different reasons. But there are different textures of tofu. So, anything from very, very soft to semi soft, to very firm.

Jack McNulty (38m 0s):

And what you can do is with any of them say with even a semi soft tofu, put it in a marinade for 30 minutes to an hour, something that's acidic and salty and that sort of thing. And then just simply grill it or pan fry it without any oil. And it's going to give you a crispy exterior and a nice soft interior as well. The thing about tofu is it sort of works like a sponge in many cases. It just sops up whatever flavors you add to it, and in the environment. So, if it's sitting in a marinade for a while, that's often a great way to do it.

Jack McNulty (38m 41s):

I often do exactly that with tofu, marinated first then take it out, grill it, and then I put it back into marinade and just let it sit overnight and it just takes on a beautiful flavor. There's something very similar in a lot of respects to chicken breasts if you can believe that. So, it's something you can replace if you ask yourself the right questions, and maybe the right question in this case is, not necessarily how do I replace cheese, but how do I replace the characteristics of that cheese that I might be missing?

Geoff Allix (39m 18s):

I think, I mean, tofu for me, it's real. I'm discovering more and more about tofu because it's many different things.

Jack McNulty (39m 24s):

Yeah.

Geoff Allix (39m 24s):

You mentioned silken tofu, but actually having like a firm tofu that lately I've been just chopping it up into bite sized pieces, and just putting in the oven for 5 or 10 minutes. And it just gives it a texture sort of like that that bite texture of sort of a meat, and I'll do that. I was doing some sort of prawn-based fajitas, but there’s an alternative to the prawns that you it just had that new sort of rather than just a vegetable fajitas I was doing it with tofu. But by putting it in the oven for a little bit, it just gave it that sort of not quite crisp, but a certain bite characteristic.

Geoff Allix (40m 8s):

And that you can make it, as you say, it basically doesn't taste of anything. So, anything, any spices or herbs you add to it, then it sucks up that flavor and it's got a very variable texture. So anything, any spices or herbs you add to it, then it sucks up that flavor. And it's got a very variable texture.

Jack McNulty (40m 20s):

That's right. I mean, it's one of the great things about following this diet, and if you really embrace it in the right way. You know, perhaps years ago, I would have been one of those people that said, “Oh, tofu, wave”, that's for the hippie generation or whatever. It's not for me that kind of attitude. But now I look at it completely differently. And it's the same as what you were saying that the world is completely opened up to wonderful new flavors and textures, and different things. And when you get into tofu, you can understand that there are many, many ways to use it. And there's just a fabulous ingredient if you can tolerate the soya.

Jack McNulty (41m 6s):

Certainly, most people can and the Japanese have been using it for centuries.

Geoff Allix (41m 12s):

Yeah. And this is a personal question, what's the difference between Tempe and tofu, that's something you see in menus, in recipes?

Jack McNulty (41m 23s):

Yeah. So tofu, the process of making tofu, like a firm tofu, is basically you're making a rich soya milk first. And then that soya milk is set with an agent, either calcium or something like nigori, something like this. And basically, it's going to start to set the soy, or the soy and milk, in much the same way that cheese and the proteins will coagulate, and the whey will separate out until it's just strained and then it's pressed or eaten softer, or that sort of thing. So that's how tofu is made, it's made from soy and milk. Tempe is made in, comes from Indonesia.

Jack McNulty (42m 5s):

And it's basically made with whole soya beans. And those are pressed together in a cake like process so that it's a basically a cake of cooked soya beans, and then a mold is introduced or inoculated into that. And it creates a sort of white strand that you would see in Tempe. So, it's basically going to ferment the tofu, or not the tofu, the soya beans in this environment, so they have a much different flavor. But that's the general difference between the two.

Geoff Allix (42m 48s):

Okay, so, because you said you could use tofu as alternative. And add tempeh to that.

Jack McNulty (42m 54s):

Yeah.

Geoff Allix (42m 55s):

Try the two, yeah. And so, it's more of a different flavor there.

Jack McNulty (42m 59s):

Yeah definitely. It's a different texture, different flavor. Tempeh happens to work fabulously if you just take up a few slices off a block of Tempe and put it in a food processor and grind it up. It gets you really close to something like a ground meat sort of existence. And then you can incorporate that with other things to create veggie burgers or meatballs, that you know, if you work with lentils or something like this, and mix the two together, it's going to give you a fabulous sort of experience along those lines.

Geoff Allix (43m 38s):

Okay, and for a final question. From Nicola in Canterbury in the UK. Do you have any good ideas for béchamel type sauce? She has been trying to make a good lasagna but hasn't found any yet that tastes that great. It's one of the few meals I miss and have not been able to convert successfully. So, I'd be interested this because I know what I do for lasagna which is -- Lasagna is like a pretty common recipe we have in our house. So, there's something that goes down well with the kids.

Jack McNulty (44m 13s):

Yeah.

Geoff Allix (44m 14s):

And the base is fine. I mean that you know, a vegetarian, tomato, and vegetable base. That's fine.

Jack McNulty (44m 22s):

Yeah.

Geoff Allix (44m 22s):

The lasagna sheets are fine. But yeah, now it needs to have that sauce.

Jack McNulty (44m 28s):

That creaminess from the béchamel.

Geoff Allix (44m 31s):

Yes.

Jack McNulty (44m 31s):

But for those who don't know, let's just start there. So, a béchamel sauce is actually one of the classical French mother sauces that a wrote about years ago. So, a béchamel sauce, the base sauce is the original one, is equal portions of fat, typically butter and flour melted together in a pan. And then milk slowly introduced into that mixture and allow it to just slowly simmer until it becomes this sort of thick creamy sauce.

Jack McNulty (45m 14s):

And then from that you can make any of a number of other different types of sauces. So, it's become a very important preparation in many, many different types of food in France, as well as in Italy, they use it a lot there. So, the way to do it in an OMS friendly or even a vegan method, the way I do it, is I will heat up my pan, nice and slow again. Medium low temperature. You're not going to want to use high temperatures for this. So again, around 4 out of 10, if you can picture that on the stovetop. Then I use either extra virgin olive oil or unprocessed rapeseed oil, which I'll measure out, which is important to measure how much it weighs.

Jack McNulty (46m 6s):

So, I usually typically will say that's 50 grams, so that's going to be two and a half tablespoons or something like that of oil going into the pan. Then I'll measure out an equal amount of flour. So again, 50 grams, so it's about two, two and a half tablespoons of flour. And I mix that in with the oil as the oil just starts to get warm. And then I'm just turning it with a spatula or a whisk, it will amalgamate really quickly into the sort of a very thick kind of paste like substance.

Jack McNulty (46m 47s):

At that point, you're just going to start wanting to add your liquid. And so, I use a combination of soya milk and water. For the amounts that I talked about the 50 grams of each of the fat and the flour, you're going to need at least one liter, about one quart of liquid. And so, I will go half and half, water and soya milk. And I just start to make sure that liquid is warm. And I just slowly add it to the mixture of the flour and fat while I'm turning it in whisking it. I'll add the liquid over the course of maybe 2-3 minutes and then it will just sort of start to thicken up.

Jack McNulty (47m 33s):

At that point, you're going to want to season it. So, I get my salt and pepper into it. Be careful with the salt, you don't want to over salt. I usually add some freshly ground nutmeg to it. And I'll chop up an onion and put a fresh bay leaf into the mixture. And I just let that slowly simmer and thicken. And it will take about 20 minutes. People want to make a béchamel too fast. If you make it too fast over higher heat, the starches will just expand too fast and sort of explode on you. And that's how the sauce won't ever thicken. At that point, it just kind of splits and look sort of ugly.

Jack McNulty (48m 16s):

But if you take your time and just take about 20 minutes or so it turns into this really creamy, nice sauce and you're cooking out all of the starch flavor at the same time. You can add a little bit more liquid as necessary if it becomes too thick, which it will over time. And then just when you're happy with the consistency, just strain it into a clean container. Cool it, usually with a piece of plastic wrap right on the surface. And you can refrigerate that for two to three days. So, you can actually make that ahead of time before doing the lasagna. So, if we wanted to do the lasagna.

Jack McNulty (48m 56s):

The way I would do it is I just get my baking dish out. Put a little fresh tomato sauce down on the surface of the baking dish. I get my uncooked pasta sheets on there. Put a little bit more tomato sauce onto the pasta sheets. So, I give it a good layer of béchamel. Whatever filling I'm using, typically I would do something with mushrooms and , or eggplant, however you want to call that. Make sure that's cooked first. And then I just create two or three more layers of that. Always finishing with a layer of béchamel on the top. And my final tip with the béchamel, the final bit on the top is I always add a little soy yogurt to the béchamel to loosen it up a little bit so it spreads evenly and it gives it a little bit of an acidic bite which is fantastic in the lasagna.

Jack McNulty (49m 52s):

So, in the OMS cookbook, there is a recipe for the fish lasagna for those that eat fish, on page 145. I know that recipe quite well, because my wife submitted it. I've eaten it plenty of times. And also, I know that there's an eggplant mushroom lasagna, one of the first recipes I submitted to the OMS website from years ago, and I know that’s still on the website. So, you can just search for recipes there and look that recipe up.

Geoff Allix (50m 24s):

So, my béchamel and I'm curious what you think about because it's quite different how I create my béchamel.

Jack McNulty (50m 30s):

Oh.

Geoff Allix (50m 30s):

Yeah. So, I start with corn flour, and some oat milk is the milk I tend to use most. But I mean, any alternative milk would probably do. So, corn flour and just making a paste with oat milk, and then adding more and more oat milk and whisking all the way through but without any heat. So, I'm just starting with a paste and then end up with just a liquid. And then I heat that until it gets the right consistency, once it starts to boil in the pan then it kind of becomes thick.

Jack McNulty (51m 1s):

Um-hmm.

Geoff Allix (51m 2s):

So that's kind of my base. So actually, I do it with zero oil and it just gets that thick. And then salt and pepper and bay leaf just mentioned. Nutmeg. Yeah, absolutely nutmeg. Quite a bit of nutmeg. But the other thing that I had is yeast flakes.

Jack McNulty (51m 15s):

Um-hmm. A bit cheesy when you do that.

Geoff Allix (51m 18s):

And it gives it yeah, that cheesy flavor. So, it thickens up a bit more. But quite a lot of yeast flakes added to it, I would say. And yeast flakes, are they fine to use to have that cheesy sort of flavor?

Jack McNulty (51m 33s):

Oh, sure. Absolutely. I do incorporate that into my béchamel at times when I want the sauce to have some sort of cheesiness to it. So, I would use that béchamel and put some yeast flakes in it if I want to make some kind of gratin for it.

Geoff Allix (51m 50s):

Um-hmm.

Jack McNulty (51m 51s):

And so, the vegetable gratin, I give a little bit of this béchamel right over the top, put it in the oven, and it works fantastic. I mean, it will, gratinate perfectly. But in terms of your method, it's an interesting method. I got to say I'm –

Geoff Allix (52m 9s):

It's not bad.

Jack McNulty (52m 11s):

But I'm probably going to go try that this afternoon now. I've not done that before using a completely no fat method. I'm a little bit more of a traditionalist with my training as a chef. So, I've kind of stuck to the traditional method with béchamel. But it is interesting, it's intriguing. I'm wondering about the overall flavor and the creaminess of it. The risk when you're using just a starch rather than a flour, which has obviously starches in it. But if you're just using 100% starch, the risk would be with too much heat or when there's an acid involved, of that particular sauce splitting, or not holding its binding capabilities over time.

Jack McNulty (52m 57s):

So, I would have to look at that and see how that works. On the surface, it sounds pretty interesting.

Geoff Allix (53m 2s):

Yeah, no, it works. But it was done... without any skill, it was just experimentation to see what would work.

Jack McNulty (53m 10s):

Well, there you go. We've got the new Geoff béchamel recipe to send out.

Geoff Allix (53m 16s):

And then the other thing, you know, the only other difference we do is breadcrumbs on the top, to have the crispy top. So, adding breadcrumbs on the top before it goes in the oven, gives it a sort of crispiness.

Jack McNulty (53m 27s):

Yeah, yeah, it's fine. That's a good idea. I often do that actually with spaghetti, which is a classic way to do it in Italy, as well. In Southern Italy, they do that a lot. And with the tomato sauce or whatever, to put a little bit of toasted breadcrumbs on the spaghetti right at the end. It adds a fabulous little crunch to any sort of pasta dish.

Geoff Allix (53m 51s):

So, I think from this episode, I think one of the things we've gained really is that is you're not missing out with these diets. It's really, you can try things out, and you can learn a new way of cooking, and actually experience new flavors and delicious food. I mean, and I think that's it if you're cooking, if you're going back to actually cooking food rather than sticking something in a microwave, you'll actually find the food is better. Yes, there's a little bit more effort involved. But actually, it's healthier and it tastes really good.

Jack McNulty (54m 24s):

And it makes you an active participant in your own program, in your own life. I mean, you're taking a little bit more control over what you're doing with, what you're what the food that you're putting in your body. And I think anytime you take on that kind of personal responsibility, it's only going to end well.

Geoff Allix (54m 48s):

And finally, I just like to say, if there's any other questions, we have got a little bit of a bank of a few questions still. But if people do have questions, then please do email podcast@overcomingms.org with questions for Ask Jack because it'd be great to have some more questions.

Jack McNulty (55m 12s):

I believe our next one actually is scheduled for November. And we're going to talk about holiday food. So, it's never too early now that we're in September start thinking about Christmas already.

Geoff Allix (55m 21s):

It's literally when we're recording, it's the second of September already. So, you've decided summer's over. That’s right.

Jack McNulty (55m 29s):

Move on to Christmas, let's go.

Geoff Allix (55m 30s):

Yeah. Okay. So yeah, but it's a good one. Because your tradition, whether it be Thanksgiving.

Jack McNulty (55m 35s):

Yeah.

Geoff Allix (55m 35s):

Whether it be Christmas, whether it be Hanukkah. You know, the meals that are served, are very non-OMS compliant. So yeah, it's really great to, you know, if people want tips for what to do to celebrate their holiday meal, whether it be Christmas, whether it be another celebration.

Jack McNulty (55m 53s):

Families involved and big gatherings and things.

Geoff Allix (55m 58s):

Absolutely. So, any questions about that would be, yeah, very well received. So thank you.

Jack McNulty (56m 2s):

Especially the pies. You know, let's talk pies for holidays.

Geoff Allix (56m 7s):

I was thinking that when you said Australia, my memory around Australia was a savory pie.

Jack McNulty (56m 13s):

Yeah.

Geoff Allix (56m 13s):

That's pretty much a go to for Australians, which again, very much non-compliant. So, with that, thank you very much for joining us again, Jack McNulty.

Jack McNulty (56m 22s):

Thanks, Geoff.

Geoff Allix (Outro) (56m 25s):

Thanks for listening to this episode of Ask Jack, the special five-part series where we dive into questions from our OMS Community about all thing’s food. Please check out this episode show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Ask Jack is kindly supported by grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS Charity, and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.

Geoff Allix (Outro) (57m 11s):

Thank you for your support. Ask Jack is produced by Overcoming MS, the world's leading Multiple Sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

View Details

Dive into the what’s happening at the forefront of MS research with the guidance of Dr. Michael Kornberg, Associate Director of the Neurology Residency Program and Assistant Professor of Neurology at the world-renowned Johns Hopkins School of Medicine.

Questions:

Why did you decide to choose neurology and specifically neuroimmunology as an area of medical practice?
Why the focus on MS? Were there any personal experiences that shaped this path?
You have your own lab at Johns Hopkins; can you tell us a little bit about the research you conduct?
Are there any specific epiphanies you’ve had as an MS researcher that made you step back and say ‘wow’? Anything that’s surprised you?
What in your view is the connection between diet and inflammation in people with MS and other autoimmune conditions?
Are there specific dietary recommendations you offer to your patients connected to your research?
What is the clinical evidence to support your perspectives on the connection between diet and MS?
Switching gears for a moment, how disease pathology differs between relapsing-remitting and progressive disease?
How does this difference explain the failure of current therapies in progressive MS?
What do you see as the most promising areas in MS research today?
There has been some discussion about the symptoms of extended duration, or long, Covid-19 are similar to those of MS, namely fatigue, brain fog, headaches, etc. This makes me wonder if the treatments for Covid could be repurposed for MS, and vice-versa. Any thoughts on this?
5 years from now, what’s your forecast for the state of MS research and advances?
What are the greatest obstacles to our making progress in understanding MS, and how can we overcome them?

Bio:

Dr. Kornberg completed his undergraduate studies at Yale University. He then received M.D. and Ph.D. degrees from the Johns Hopkins School of Medicine and stayed at Johns Hopkins for neurology residency and a clinical and research fellowship in neuroimmunology. He is committed to a career that combines the competent and compassionate care of patients with multiple sclerosis and other immunologic disorders of the nervous system with basic and translational research aimed at developing improved therapies.

Dr. Kornberg is also a Program Director of eMultipleSclerosis Review, which is a continuing medical education program accredited by Johns Hopkins. It includes a podcast featuring discussions about clinical topics and patient scenarios with doctors and nurses treating people with MS, in order to educate health care providers on best care for people living with MS.

Links:

Kornberg’s LinkedIn profile
Kornberg’s PubMed bibliography
Kornberg’s lab website
Kornberg’s Johns Hopkins profile

Coming up on our next episode:

Jack is back! Starting September 15, catch the fourth installment of Ask Jack, our special 5-part series where certified OMS foodie and professional chef Jack McNulty answers cooking- and food-related questions from you, our OMS community. The final installment of Ask Jack for 2021 premieres on November 10, and it’s our special holiday cooking edition. Remember, you can submit your questions early for the next and all future Ask Jack episodes by emailing them to podcast@overcomingms.org.

Don’t miss out:

**S3E41 Transcript**

A Window into MS Research from Johns Hopkins

Geoff Allix (2s):
Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (44s):
Now without further ado, on with the show. Joining me on this episode of the Living Well with MS Podcast is Dr. Michael Kornberg. Dr. Kornberg completed his undergraduate studies at Yale University. He then received MD and Ph.D. degrees from the Johns Hopkins School of Medicine and stayed at Johns Hopkins for his neurology residency and a clinical and research fellowship in neuroimmunology. He is committed to a career that combines competent and compassionate care of patients with multiple sclerosis and other immunologic disorders of the nervous system with basic and translational research aimed at developing and improving therapies. He is also the program director of Multiple Sclerosis Review, which is a continuing medical education program accredited by Johns Hopkins. It includes a podcast featuring discussions about clinical topics and patient scenarios with doctors and nurses treating people with MS in order to educate health care providers on the best care for people living with MS.

Geoff Allix (1m 25s):
If you haven't already, please consider registering at www.overcomingms.org. This way you can stay up to date on all of the latest MS news, including new programs and initiatives. Again, that's www.overcomingms.org, and look for the register button in the upper right-hand corner of your screen. Now, let's get on with a podcast.

Geoff Allix (2m 5s):
Welcome, Dr. Kornberg, and might I call you Michael?

Dr. Michael Kornberg (2m 9s): Absolutely. Thank you for having me.

Geoff Allix (2m 12s):
To start off with, we've established you work at John Hopkins and that covers a wide range of neurological research, but what are your particular areas of research interests?

Dr. Michael Kornberg (2m 31s):
I specialize in multiple sclerosis both in the clinical work that I do taking care of patients and also in my research. I care almost exclusively for people with MS. I have a research program that, in essence, is attempting to understand particularly progressive disease, the reasons that Myelin Repair fails, and how we can modulate those processes to better treat people with progressive MS. I'm also interested in how dietary therapies and basic metabolism impacts the immune system, and how we can modulate the immune system in people with MS and other auto-immune diseases through metabolism and diet.

Geoff Allix (3m 19s):
Okay. Those are both areas I think which would be particularly interesting to our listeners. Just on the first one, there's an awful lot of drugs and treatments available to try to slow down or prevent MS relapses, lesions, and so on, but remyelination, that's almost the holy grail, I think. A lot of people with MS would certainly see that as "Okay, we're on treatment. We're living a lifestyle. We've lessened the progression, but can we get back anything?”

Geoff Allix (4m 2s):

   Do you see that as something that we will see in the relatively near future?

Dr. Michael Kornberg (4m 5s):
I do. I think that relatively near future is obviously subjective to some point. I don't think that we're going to have a remyelinating therapy within the next two to three years, but I think on the timescale of five to 10 years, it's absolutely a possibility. It's easy to, I think, lose sight of how much progress there has been in the MS world in terms of therapeutics.

Dr. Michael Kornberg (4m 44s):
Up until almost 2010, there were really only a handful of therapeutic options for relapsing MS. Within the past 10 years, we've had this explosion of therapies. As a result, I think we are in a pretty good place in terms of the treatments that you discuss, in terms of preventing new attacks of MS, flare-ups, new lesions forming on MRI, which we know makes a big difference in the course of someone's disease. The goal is always going to be to diagnose MS as early as possible and start those treatments as early as possible but we're always going to have a group of people who, unfortunately, have been left with a permanent disability from prior attacks.

Dr. Michael Kornberg (5m 36s):
We are at a place where I think that over the past five to 10 years, we've gained a lot of knowledge about why Myelin Repair fails in people with MS and what drives that process. There is a big gap between understanding why that happens in a research lab and translating it into something that we can give to patients. I think already, we've made a lot of progress in terms of understanding how to measure Myelin Repair in people. We have a lot of good candidates that we can take from a research lab into clinical trials.

Dr. Michael Kornberg (6m 17s):
I don't think we're a couple of years away, but I certainly think within the next 10 years, it's reasonable to think that we will have therapies for Myelin Repair.

Geoff Allix (6m 29s):
Is it even possible that someone with progressive MS, who might be wheelchair-bound now, that actually there could be some level of reversal of their symptoms, or would it be a stabilization?

Dr. Michael Kornberg (6m 46s):
Yes, so a little of both, but I think it's important to have set reasonable expectations at least, with the caveat of everything I'm saying that this is my opinion. It is my interpretation of the data we have now and what I expect is the progress of what is going to be in the future. There are two separate goals in that that you mentioned, halting progression, and promoting recovery of function. I think to an extent, there might be different therapies that are targeted at those two distinct elements. I do think it is going to be possible to repair myelin and actually lead to the recovery of function.

Dr. Michael Kornberg (7m 34s):
I think it's important to be realistic about what we might be able to expect in that scenario. Those remyelinating therapies are going to be most effective in people earlier on in the disease who have not had a longstanding, severe disability. For the reason being that in later stages of MS, people who've had progressive MS for a long period of time, one big problem is brain atrophy. You actually lose those nerve cells themselves. Whereas it’s easier to repair the myelin coating that covers the neuron processes, it's much harder to get neurons to regrow.

Dr. Michael Kornberg (8m 20s):
At the later stages of MS where you just don't have neurons there to remyelinate, that is a big challenge. The goal with remyelinating therapies is still going to be to treat people early on in the course of their disease before they'd gotten to a point where there's been neurodegeneration and we've lost brain tissue that we can't get back. I think along those lines, what I would have in mind, what I would hope for as a realistic goal in 10 years is that if someone has lost vision from an episode of optic neuritis, which is common with MS, we can get their vision to improve.

   Dr. Michael Kornberg (9m 7s):

If someone has difficulty walking, that we can create a meaningful improvement in their walking ability. If you're talking about someone who is wheelchair-bound and has been wheelchair-bound for years, getting them out in the chair and walking is a very ambitious goal. I wish I could say that is realistic considering that timeframe, but it's probably not. I have in mind making improvements in people's function that are meaningful to them in their lives, but we have to have some realistic expectations of what that'll mean.

Geoff Allix (9m 46s):
Okay. The other thing you mentioned as a research interest is diet. Now overcoming MS is a lifestyle charity, which includes medication as well. It also will look at diet, exercise, mindfulness. Do you think that diet has a meaningful effect on the progression and the immediate lifestyles to someone with MS?

Dr. Michael Kornberg (10m 19s):
I think it does, but I also think that we don't know nearly enough about what specific diets are best for someone with MS. I think that we have a tendency to get carried away and some of what we extrapolate from what we see in research models vs people. Ultimately, there are certain things we know for certain. We know that people who are overweight or obese tend to have a more significant disability than people who aren't over time.

Dr. Michael Kornberg (10m 59s):
We know that people with certain comorbidities like high blood pressure and high cholesterol develop more disability over time. I'm talking about people with MS who have these co-existing conditions. We know that a healthy diet and a moderate amount of aerobic exercise are generally good for health. They are particularly good for people who have multiple sclerosis. The next question that comes up is, "So what diets are particularly good for MS? What diets protect my brain from being attacked by the immune system, or promote recovery and function?"

Dr. Michael Kornberg (11m 44s):
That's the place where there's a big chasm between what we're finding in the research world and what we've seen in people. I'm someone who is a strong believer in basic cell metabolism. Because of that, diet can have an impact on how the immune system functions and possibly even how the brain repairs itself, but we really don't know in people. People are much more complicated than what we're studying in the lab. We don't yet know which of those diets are helpful, which aren't. We see a lot of things on the internet about this food being pro-inflammatory and this food being anti-inflammatory.

Dr. Michael Kornberg (12m 28s):
In my opinion, that goes well beyond what we really know at this point. The way that I counsel my patients is that, as a general rule, the same prescription for general living we would give to everybody, everything in moderation, favor whole foods over processed foods, and getting aerobic exercise. If someone really wants to have a particular diet to follow because for some people that structure is helpful, I always recommend the Mediterranean diet, which is really the only diet that is clearly been shown to have a broad health benefit in people.

Dr. Michael Kornberg (13m 12s):
There are a number of other diets that your listeners might be familiar - the Wahls diet, the Swank diet, the paleo diet. The way that I talk to patients about it is that, generally, if someone commits to one of those diets, usually their diet is improving relative to what it was. They're often going to lose weight. They're often going to feel better. As long as it's not some extreme diet that really carries some potential risk, I am all for it. I just recommend to people that they do what works for them.

Dr. Michael Kornberg (13m 52s):
In my research, I'm particularly interested in the ketogenic diets because of how that might impact the immune system that we've seen in the research model, but I'm very wary when I talk to the patients. You have to understand that things like the ketogenic diets are very high in fat. We don't know what the negative consequences might be of that over time in terms of cholesterol levels and that's all being studied. It's worth talking about your dietary choices with your doctor. We need to understand that we don't have a great deal of knowledge yet about how some of these

   diets affect the body over time, but a generally healthy diet is certainly an important part of care for people with MS.

Geoff Allix (14m 46s):
Well, Overcoming MS is based originally on Swank, but essentially a whole food plant-based diet plus seafood. I asked my neurologist when I first decided to go this way, and he said, "Well, there's just no proof out there. We just don't have the evidence base, but ultimately, it's going to be good for you and it will reduce your risk of heart disease, strokes, diabetes, those things. If you looked at the upsides and the downsides, it's not going to do harm. You might miss some of the things that you liked to eat, but other than that, it's not going to do your health any harm."

Geoff Allix (15m 35s):
The problem is getting the research, isn't it? It is very difficult when you can't have the double-blind placebo trial of someone eating one thing or not eating that thing. You'll know if you eat it or not.

Dr. Michael Kornberg (15m 46s):
Yes, that is very hard. Diets studies are really hard, which is why that science is lagging behind but we're getting there. They're not impossible to do. I'm currently doing a dietary study with the ketogenic diet. It's possible but it's much harder than a randomized drug trial.

Geoff Allix (16m 14s):
You mentioned ketogenic diet. There's a lot of people that I come across who are quite successful in their MS treatment who use fasting. Actually, Dr. Valter Longo, who is very much into fasting, was saying that primarily, what you're doing is you're getting the body into that ketogenic state. What I think people traditionally think of as ketogenic, which is that specific diet where you are eating very high fat. Bulletproof coffee is something where people have massive amounts of caffeine with butter in it.

Geoff Allix (16m 56s):
They're specifically very high fat, very low carb diets. Yes, that would get you into ketosis but so would fasting. You don't have to go down this very high saturated fat route. You could actually get some of the benefits in other ways. Fasting isn't a pillar of OMS. It's not something that's particularly mentioned, but I think it's one of those areas of particular interest because so many people are mentioning it. Is that something where you think maybe a fasting method and introducing ketosis through fasting may prove to be something that's the future?

Dr. Michael Kornberg (17m 38s):
Yes, absolutely. I think it may be, but I would still put intermittent fasting in the category of we just don't know whether it is beneficial for people with MS and what the potential downside might be in the long run. I think it is certainly an exciting area of research, not only for MS but for a whole host of human diseases. There certainly is a lot of, at the level of animal models, great evidence.

Dr. Michael Kornberg (18m 20s):
You mentioned bulletproof. Looking at intermittent fasting in MS animal models, people who do that research will make the argument that we evolved as humans in an intermittent fasting type of model because when food wasn't so readily available, you can go on these long stretches without eating and the body is designed to work that way. That's a compelling argument, but still, I think we have to be a little bit careful about taking what sounds like a very plausible hypothesis and has some support in animal models and just extrapolating it to people without doing those studies.

Dr. Michael Kornberg (19m 9s):
Again, what I tell people who want to do intermittent fasting is, as long as they are not doing something totally crazy, then I'm all for it. Generally, they are going to be healthier just liked we talked about in all those other diets because if you are condensing your eating to eight hours during the day, you eat less, absolutely. There may actually be something about the ketosis that you enter into during those fasting periods that's beneficial, but we just need to

   have better evidence in people before we should be recommending that broadly because until we have that data, it all remains an extrapolation.

Dr. Michael Kornberg (19m 58s):
We don't know for certain that there couldn't be any downsides to doing that as well.

Geoff Allix (20m 3s):
Yes. Certainly in my lifetime and certainly going back to my grandparents, the way we eat has changed massively. I've got teenage children and we just ask them earlier what they wanted to eat tonight. We're going to go to the supermarket so they can eat anything. When I was growing up, the vegetables had to be in season. There was a big thing about asparagus because asparagus had a really short season so if you've had it, you had it this time of year. Now, you could have it at any time of year because it's flown here from Peru or Kenya, so you've got the whole globe providing. Somewhere, it's in season around the world.

Geoff Allix (20m 49s):
If you think about it, it's crazy really. I just thought we are asking them what they want to eat tonight, and they have no restriction. They are global. They can eat anything from around the world because all is available locally in a supermarket to us. Yeah, it is such a modern phenomenon. And yeah, maybe there are downsides to that or this, or maybe it's how 100,000 years of human evolution hasn't really prepared us for this sudden consumer state you have.

Dr. Michael Kornberg (21m 23s):
Yeah. Well, one thing that I do feel comfortable saying given the evidence we have now is that I have little doubt that our traditional Western diet that we've come to become accustomed to, because of all of those things you mentioned, it's not ideal. That I think is, is probably fair.

Geoff Allix (21m 44s):
Yeah. I think the processing, as well as another thing, which we don't mention too much on OMS, but if there's a large number of ingredients on the back of the packet, it's probably not very good for you. That doesn't mean that any of those ingredients necessarily you think, oh, well, that's really, really bad, but it's just like, how can something which is an evening meal or be wrapped up in a packet, go in the microwave, be eaten, you look at the used by day and that's three months in the future. Do you think this has, this is not a natural food and, and it has huge numbers of the different ingredients and they're in it. I'm sure it tastes delicious, but it is not traditionally, something that we thought of as food.

Geoff Allix (22m 28s):
I'm sure it tastes delicious, but it is not traditionally what you assume something as food. It's not normal. They did it with, I won't say the brand, but a popular hamburger. They left one out for six months or something.

Dr. Michael Kornberg (22m 45s): I saw that.

Geoff Allix (22m 46s):
It looked the same. You're like, "Okay. If mold is on to this, then maybe we shouldn't be eating this." Anyway, that's really interesting. This episode is actually going out in the month. We still have themed months and it's a month looking at pregnancy and children. I just want to ask you a bit about pregnancy and MS. If someone has MS, I'm thinking of women here specifically, would it affect them planning to have a baby? How would a pregnancy affect someone with MS?

Dr. Michael Kornberg (23m 27s):
Yes, so that is obviously a very important question particularly when you're talking about a disease that affects primarily women who are the average age of 30 and in that time period to have pregnancies. Women with MS can absolutely get pregnant. Sometimes, it's useful to have some planning and strategy around it. Some basic things to cover, number one, we know that women with MS do not have any greater complications related to pregnancy than

   women who do not have MS. That could be a concern for people, and it can be very reassuring that if you are a woman with MS, your pregnancy is just as likely to go smoothly as any other woman.

Dr. Michael Kornberg (24m 22s):
We know that pregnancy itself generally does not know have any long-term impact on your MS so you’re not putting yourself at risk of greater disability in the future by having babies. What we do know about pregnancy and MS is that pregnancy itself is almost being on a disease-modifying drug. It protects you from relapses, from MS attacks. We think that pregnancy is naturally in an immunosuppressed state because, obviously, you don't want your immune system attacking the baby in utero.

Dr. Michael Kornberg (25m 2s):
Particularly in the third trimester, the relapse rate goes down significantly compared to what it was before. We do know that the risk of having an MS attack goes up considerably in the few months after giving birth. That three to six months after giving birth, you will see a rebound effect in which the risk of having an attack is actually a bit higher than it was right before you got pregnant. There are associations that women who breastfeed for three to six months tend to have a lower risk of that rebound effect, but we don't know exactly whether that's causal at this point, whether breastfeeding actually does protect you from having an attack.

Dr. Michael Kornberg (25m 57s):
Those are some key features that I think are worth mentioning. Related to all of that is what you do with the disease- modifying therapies that a woman is on before pregnancy and when to restart after the pregnancy. Generally speaking, it's always possible to work around whatever therapy someone is on. Very good MS Neurologists can have some differences in how they practice with regards to the disease-modifying drugs.

Dr. Michael Kornberg (26m 37s):
At this point, we have pretty good evidence that the interferon therapies and tumor acetate seem to be safe even to continue through pregnancy. We have large registries inputting lots of women while pregnant on those medications and there has been no signal in terms of complications with the pregnancy or risks to the baby. For other medications, the general consensus is to stop them roughly 30 days before you were attempting pregnancy. There is some wiggle room there and as a woman considering pregnancy, you just need to talk to your neurologist about it.

Dr. Michael Kornberg (27m 22s):
There are some medications that if you just suddenly stopped them, your risk of an MS attack can go up considerably so thinking about Fingolimod, which goes under the name Gilenya, and other medications like that or Natalizumab, which goes under the trade name Tysabri. If you are on one of those medications, you'd have to strategize for a bit with your MS Neurologists. Then for some of the newer B-cell therapies, or things Ocrelizumab which is Ocrevus, and now there's another form called Kisempta, there are just some timing issues.

Dr. Michael Kornberg (28m 4s):
Generally, if you've got a dose of Ocrevus, I recommend to women that you wait two months until you start trying to conceive because in that case, by the time that the drug can cross the placenta, it's out of your system. There are some strategies involved in terms of when to stop disease-modifying therapy, whether to continue it during pregnancy and then when to restart it afterward. Those are just worth having a plan for but that the bottom line is that women with MS can and should have children and do it in a very safe way.

Dr. Michael Kornberg (28m 48s):
It's very possible. You don't have to worry about risks to the baby or risk to your disability in a general sense.

Geoff Allix (28m 55s):
Okay, excellent. It's worth speaking to your neurologist in the planning phase. To connect with that, normally, connect to the pregnancy, children. I think people with MS are particularly aware of there being some genetic

   components, although this was long disregarded. Still, they don't really know what's exactly going on, I believe. Is there a very highly elevated risk for children of people with MS? I am aware because my father had MS.

Geoff Allix (29m 37s):
I know there is a cause-and-effect thing going on here just because you're more like your parents, it doesn't mean that everyone with MS's children will have MS. I've got children so it's a personal concern. You worry, is it more likely that they will get MS? I know there must be some link but that how much riskier is it for children of people with MS?

Dr. Michael Kornberg (30m 2s):
Yes, it's a great question, a very important question. We are starting to understand the genetic relationship of MS in a better way. There certainly is a genetic contribution. We know that early now, we've identified a number of genes that can confirm an increased risk of MS, but there is also a big component to your risk of MS that has nothing to do with connections. Just to give you some key figures, if you have a first-degree relative with MS, for instance, you with your father or you have MS and you are going to have a child, generally, in most studies that had been done, the risk that your child will have MS is somewhere between one and 5%.

Dr. Michael Kornberg (30m 59s):
Three percent is a typical reported number. You have MS. Your child has roughly a 3% risk of having MS. That is much higher than the general population. It's about 10 times higher than the general population so clearly there's added risk there, but I think it's important to emphasize that it means that there's a 97% chance that your child will not have it. Still, the chances are much greater that they would not than they would. I think the most fascinating data we have is with identical twins, one of which developed MS.

Dr. Michael Kornberg (31m 42s):
We know that if one identical twin has MS, it was about a 25% to 30% chance the other twin will. Those are two people that have identical genes. That's a very high risk, 25 to 30%, but clearly, it tells you that there's a lot of factors that have nothing to do with your genes also. There is a genetic risk. It's something worth knowing about, but the bottom line is that chances are your child will not have MS.

Geoff Allix (32m 13s):
Those identical twins, presumably, grew up in the same part of the world, had the same diet, had the same lifestyle. There's a lot of factors going on probably in the first, say, 20 years of their life, which were almost exactly the same because siblings are likely to be treated the same, aren't they? There's that as well. Another unknown is that there does seem to be a geographic component as well, doesn't there? It's how close you are to the equator and certain Western countries have higher instances than others.

Dr. Michael Kornberg (32m 57s):
Yes, absolutely. There's been some debate. The textbook answers have always been that the further away you are from the equator, the higher your risk of MS. That's where this theory came up that vitamin D levels might have something to do with MS because the further away from the equator, the less sunlight you are exposed to. There's been some debate about whether we still see that geographic variant consistently, but along those lines, one of the, I think, more fascinating things about MS epidemiology is that just like you said, different areas of the country have different rates of MS.

Dr. Michael Kornberg (33m 38s):
We know that if you move from your place of birth roughly before puberty, by the age of 11 or 12, you'd take on the risk of the area that you moved to. Whereas if you move after puberty, you maintain that the risk of the place where you came from. It does seem like there's some environmental exposure that happens very early on in life that sets the process rolling.

Geoff Allix (34m 13s):
Yes. I think vitamin D seems to be a hot topic at the moment as well because most people I know with MS are supplementing to some extent with vitamin D. There's another person, Dr. Aaron Boster, who's an MS specialist in

   Ohio. One of the things he said is when you're looking at things that you're considering the lifestyle, what potential good does it do you, what potential harm does it do you, know how much it costs you. Look at these things and something like a vitamin D, what potential good is it going to do? Well, it's potentially a lot of things that may be good for your MS.

Geoff Allix (34m 53s):
It might actually help you with other conditions as well. There's a likelihood that we are somewhat deficient, almost everyone because we're walking around fully clothed and in offices, which is not natural for humans, and living a lot further away from the equator would normally be possible. What are the downsides? If you take huge amounts, you can get calcium problems and kidney stones. The cost is fairly low so yes, it is probably worth sensibly supplementing. It shouldn't do too much harm. I think a lot of people with MS are supplementing. Then recently, there are people who have been saying, we are having trouble getting a hold of vitamin D because it's now being widely regarded as helping with coronavirus, COVID-19 symptoms.

Geoff Allix (35m 43s):
The mass population has started to buy it because I think they're pretty certain that there is some connection with your vitamin D levels, but again, they don't know what's the cause and effect. They are saying, is it because you have low vitamin D that you got coronavirus, or was it the coronavirus that has caused your vitamin D levels to go down? Again, does it hurt to take a small amount of vitamin D? Probably not.

Dr. Michael Kornberg (36m 16s):
Yeah. I think you've said that all very eloquently. From my perspective, that's exactly how I've raised it for the people that I take care of with MS. It's that there's this very clear association that people with lower vitamin D levels have a greater risk for MS. Those who have MS tend to do worse. We don't know for certain how much of a difference it makes it to give them vitamin D. There's some research suggesting that, as you mentioned, having a low vitamin D level is related to your risk for MS, but it doesn't necessarily help it taking supplements. On the flip side, as long as you are not overdosing, just like you said, there's no downside to it.

Dr. Michael Kornberg (37m 3s):
It can only help. There are no risks so generally, I do have all my patients take the vitamin D supplements if their levels are low. I think that's exactly my take on it as well.

Geoff Allix (37m 17s):
Okay. Another area I'll be particularly interested in is where you see things going in the future. In the relatively short term, in five to 10 years, is there anything on the horizon where you think that there's a new treatment or any changes to advice you'd be giving to people with MS upcoming?

Dr. Michael Kornberg (37m 47s):
There are a number of interesting things on the immediate horizon. If I'm really thinking of the short-term horizon or the next couple of years, there's been this debate in MS care between two strategies of therapies. One is called the escalation approach where you start with an MS treatment that maybe has low risk but is also overall less effective, then you only escalate someone with something more aggressive if they have a breakthrough disease, meaning they have an attack or they have new lesions on their MRI.

Dr. Michael Kornberg (38m 32s):
The other camp says we should be starting everyone on these high efficacy therapies very early on in order to stamp out their disease early on. The whole field has moved more towards being aggressive early on. Talking about Dr. Giavonnoni earlier, and he certainly was a proponent of being aggressive early on. My own view is that there are still some unknowns there in terms of long-term safety. There are studies ongoing right now to randomize people in between those approaches, meaning an escalation approach versus a higher efficacy approach, to figure out if we can identify patients that we know need an aggressive therapy early on and are going to benefit from it, and those who may be better off starting with the safer option.

   Dr. Michael Kornberg (39m 30s):

I think that's one big debate that will likely have an answer to some extent within the next few years. Along those lines, there's been some interest in blood stem cell transplant as a way to almost cure MS. I use that in a very cautious way, cure the underlying problem in MS, meaning to reboot the immune system.

Geoff Allix (40m 5s): Homeopathic stem cell therapy?

Dr. Michael Kornberg (40m 7s):
It's nanopoetic. It just means blood stem cells. The idea is that people are treated with high doses of essentially chemotherapy agents to basically obliterate your immune system to get rid of all of those autoreactive cells. Then they're given back their own homeopathic stem cells from their bone marrow to repopulate their immune system. It's like rebooting a computer. The hope is that you now solve their auto-immunity problem. It doesn't mean that you're going to repair the damage that's already been done but the hope is that you're preventing further damage. There are studies going on to compare that approach to standard therapy.

Dr. Michael Kornberg (40m 53s):
I think that it might make a practical difference in care over the next few years. In terms of new therapies, there are a number of things on the horizon that may or may not have a big impact over the next few years. There are a number of therapies that are being designed largely for relapsing MS but there's some, at least, a reason to believe or some hope that they might have a role in progressive disease. There is a new class of drugs called BTK inhibitors that targets cells in the brain that we think play a role in progressive disease.

Dr. Michael Kornberg (41m 39s):
There's some hope there. There are some treatments being tested that target immune cells that have been infected with the Epstein-Barr virus (EBV). There's this long-standing association between EBV and MS risks so there's some interest there in terms of what that might mean, even for progressive MS. There's a number of other treatments that are targeted either at preventing brain atrophy or myelin repair that I think in the span of five or six years, we'll have some data about it. I don't think those are going to be home runs in that period of time, but I think they're going to possibly give us something to actually protect the brain beyond just our treatment of the immune system, essentially.

Dr. Michael Kornberg (42m 29s):
That's a little summary of what I see happening over the next few years.

Geoff Allix (42m 38s):
Okay. Finally, so we're quite a long way into the coronavirus COVID-19 pandemic now. Depending on what part of the world you're from, mostly we're well into a vaccination response now. Something that's particularly of interest to people with MS is would they take a vaccine? Depending on what disease-modifying therapy they are on, whether that would have an effect, and which vaccines? Are some vaccines safer than other vaccines? Would you encourage people generally to get vaccinated if they're on a disease-modifying therapy?

Dr. Michael Kornberg (43m 19s):
The short answer is yes, absolutely. People should get vaccinated. The longer answer is that when it comes to vaccinations and MS, there are generally two concerns that arise, both for people with MS and the doctors that care for them. One is the concern about whether a vaccine might actually induce a relapse and induce a flare-up. That has been a concern for decades. There is a theoretical basis for it that you think of MS as an autoimmune disease. If you're giving someone a vaccine that's designed to create an inflammatory immune response, could you trigger a relapse?

Dr. Michael Kornberg (44m 1s):
Generally speaking, when we look at a wide variety of vaccines in terms of the risk of causing an MS attack, we don't see any risk there. That has been very well studied with the flu vaccine, but it's been studied with a number of other

   vaccines. Generally speaking, we have not seen any increased risk of MS attack with a vaccine. Extrapolating from that, we think that the COVID vaccine will be safe from that perspective. There now has been one study and it was real, where they vaccinated the majority of the population. One study is looking specifically at people with MS who have gotten COVID vaccines there, and there has not been any increased risk of having an attack from the vaccine.

Dr. Michael Kornberg (44m 52s):
Generally speaking, there's not a reason to be concerned about that. The other concern is if you're on a medication that affects your immune system, is the vaccine going to be as effective? There are some considerations there so generally, we know that people on medicines like Interferons, Glatiramer acetate, or Tecfidera, those kinds of immunomodulatory treatments don't have any impact on vaccine response. They're not going to decrease the efficacy of the vaccine. There are certain medications that you do have to think about timing and the potential for affecting your response to the vaccine, most notably is the B cell therapy.

Dr. Michael Kornberg (45m 42s):
That's Ocrevus, now Kesimpta, or someone who is on Rituximab. Those work by getting rid of cells that are important for antibody production. We know from other vaccines that they can decrease your response to the vaccine. We think that by delaying your vaccine, depending on the guidelines, from four to 12 weeks after your dose, you might be more likely to have a protective response. If you're about to start on one of those medications, if you can, getting vaccinated before you start on the medication.

Dr. Michael Kornberg (46m 23s):
The bottom line is that even for people on those medications, they may not have the same level of a protective response as someone else, but most people still developed some level of a protective response. It's still worth being vaccinated. We think everyone should get vaccinated. Depending on your medication, there may be some timing issues that are worth discussing with your neurologist.

Geoff Allix (46m 52s):
Okay. That's very reassuring. I've been vaccinated so I'm glad to hear that. With that, thank you very much for joining us, Dr. Michael Kornberg.

Dr. Michael Kornberg (47m 5s):
It was my pleasure. Thank you for having me.

Geoff Allix (48m 13s):
Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

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Welcome to Living Well with MS Coffee Break #21, where we are pleased to welcome Julie Pankhurst as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Julie, coming to you straight from Surrey, England.

Julie’s Professional Bio (in her own words):

I trained to be a software engineer straight out of school in the mid 80s. There weren’t many female engineers at that time, which appealed to me a lot as at age 18, I wanted to prove that I was just as good as any man out there! This perhaps stemmed from the friendly competitive nature between my brother and me (a friendly rivalry that still exists today!)

In 1999, while pregnant with my first of two daughters, I used a website called phonenumbers.net and literally over a weekend I was able to track down my grandfather, who had left his wife and child (my father) in the 1940s to set up home in Denmark. This was the first time that I recognized the enormous power of the Internet. In the 1990s it seemed that everyone was looking for the next big Dotcom idea. While many people were putting their shop online, I sought ideas that could appeal to an even wider range of people. This was when I had the thought that everyone in the UK went to school and might like to know what had happened to their old primary school friends, just like I did in the case of a friend who had left London to live in Edinburgh when she was 10. This was the simple idea behind FriendsReunited, which was set up in 2000: a UK website through which people could easily track down their old school chums by searching for the year group within their school.

My husband and I sold the company in 2005 and since then have taken great delight in being parents, philanthropists, and travelling.

Julie’s MS Bio (in her own words):

Over the last seven years or so I’d seen my GP once a year with issues that were niggling me: memory problems, pins and needles in my feet, incontinence, balance, and walking issues, etc. These were all dismissed as nothing significant. My memory problems concerned me greatly but when I suggested that I wanted to pay for a full health check I was told not to waste my money. A year later, on Valentine’s Day 2019, my husband and I each had a full health checkup which included brain MRIs. The doctor first thought my symptoms were due to being peri-menopausal until she saw the results from the brain MRI. This is when it was pointed out to me that I had lesions in my brain which could be MS.

I visited a neurologist who diagnosed me with primary progressive MS. My world fell apart. All the dreams that I had to travel the world once our daughters left school disappeared. In June 2019 a friend mentioned the OMS program. On researching further, I learned that there was going to be an OMS retreat the next month. I signed up straight away. I did not know anyone with MS and went to this retreat feeling very alone and scared of seeing how my future was going to be. I left the retreat having made many supportive friends and incredibly positive about my future. OMS gave me the tools to be proactive daily rather than simply seeing a neurologist just once a year.

In November 2019, an agonizingly long time after my first diagnosis, I got to meet a NHS neurologist who almost immediately said that she did not believe I had primary progressive MS but instead she thought it was relapsing remitting MS.

I still am not sure what type of MS I have but whatever it is I am hopeful that by following the OMS lifestyle and having Ocrevus infusions I can stop it in its tracks!

Questions:

Julie, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
I understand you used to be a vegetarian and then a pescatarian pre-OMS for over 15 years. Did that help you adjust to the OMS diet?
You also have quite an interesting daily fitness regimen. Tell us more about Zoom yoga.
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
In looking at your professional past, you and your husband started a company in the early days of the Internet boom, which you then sold in 2005 allowing you to focus much of your time on philanthropy. In full disclosure, your charitable trust is one of the supporters of this podcast, for which we’re very grateful. Why is philanthropy so important to you? What kind of impact would you like to make in the world?
Why was it important for you to offer philanthropic support to OMS, and what advice would you give to others about supporting OMS?
I learned about an interesting hobby you have – exploring family ancestry. In fact, your ancestry was indirectly responsible for the successful Internet company you and your husband launched. Can you share a little more about your genealogical bug?
Back to the topic of MS, something quite topical these days is the question of people with MS and the need to get vaccinated. You’ve been vaccinated but the DMD you’re on has had a strange effect on your antibodies. Can you speak to that and share your thoughts on what it might mean to our audience?
Julie, we are ever so grateful for you being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Interesting Factoids About Julie

Julie loves photography, and she intends to focus (pun intended) on it more in the future.
Julie is passionate about researching her family ancestry through a website she created, genesreunited. Through the site, she has been in contact with her father’s half-sister, who never knew she and her brother even existed!
Julie keeps fit physically and mentally through daily Zoom yoga sessions.
Julie and her husband are active philanthropists (including support provided to this podcast through The Happy Charitable Trust). Two of her other favorite charities to support are Plan International and Kiva, as their focus is to empower people in less economically-developed countries. Through Plan International UK, Julie and her husband have sponsored children and helped to build several schools around the world and have been privileged to visit them, too.

Julie’s Links:

Follow Julie on Twitter
Check out other Twitter feeds Julie loves: Aaron Boster, Dr. Brandon Beaber, and Prof. Gavin Giovannoni
Julie loves the yoga website Taming the Walrus, run by OMS facilitator Veronique Gauthier-Simmons
Julie gets great health tips from Chatterjee

Coming up on our next episode:

Tune in on September 8, 2021, for the next episode of Living Well with MS, where Geoff sits down with Dr. Michael Kornberg, an Assistant Professor of Neurology at the world-renowned Johns Hopkins University in Baltimore, Maryland. Dr. Kornberg is on the forefront of scientific research in MS, and he’ll share some of his insights into what’s on the research horizon for today and beyond.

Don’t miss out:

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Ritu Kaur is no ordinary woman. She is creative, accomplished, life-loving and, after getting diagnosed with MS, has made it her single-handed mission to educate people about MS to reduce the stigma around it and lessen undiagnosed and misdiagnosed cases. MS is not the same for everyone. Nor does MS define a person; only their courage and strength do. With love and kindness in her heart, Ritu has taken to spreading awareness about MS and building community around the globe to create acceptance of MS among people with MS and their families, friends, colleagues, and society. Through her deft use of social media, Ritu is building a platform where people with MS and their supporter can get counsel and emotional support… where they feel loved, accepted, and confident.

Questions:

Welcome to Living Well with MS, Ritu! I believe your full name is Surjeet. Is Ritu a nickname?
There are many thousands of people around the world that know the name Ritu thanks to the work you’ve undertaken to build a community around the cause of raising MS awareness. First off, can you share a little bit about your personal background and connection to MS?
After receiving your diagnosis, what were some of the chief factors that pointed you in the direction of the work you do to raise awareness of MS?
Why do you think it’s so important for MS awareness to improve? How does what you’re doing supplement the work of MS organizations like the MS Society? Where’s the gap that you saw from your own personal experience with MS?
You’ve been quoted as saying “through my efforts I am trying to remove the fear about MS and the taboo associated with the disease.” Can you speak to the stigma around MS you’ve witnessed and how you’ve decided to confront and overcome it?
You’ve built an amazing global community of over 17k people on Instagram, the link to which can be found in our show notes, and as I understand it you have 121 personal relationships with many of them. Why do you feel community is so important?
How do you feel the community you’ve built has made a difference in the lives of people with MS?
You’re based in India. What do you see as the specific challenges there in terms of MS awareness and acceptance, and how are you working to address this closer to home?
Shifting gears a bit, you have a background in marketing, and I know you’ve applied some of these skills to creating some pretty amazing awareness campaigns, the links to which can be found in our show notes. How have these made an impact?
If all the work you do building community and raising MS awareness isn’t enough, you’re also giving me a run for the money by being a creator and host of a podcast, 10 Minutes for MS. I suppose that’s yet another great way to reach people with your message, but since we’re chatting as part of a podcast, what do you think that platform provides you for advancing your cause that others don’t?
On a personal note, how do you find time to stay healthy and balanced given how much time you dedicate to the cause of MS awareness?
Your motto is to “spread awareness with love and happiness”, which is beautiful. But sometimes, and hopefully rarely, you might find yourself suffering the blues. How do you personally cope with that, and what advice would you give to others?
Thanks so much for being on our program, Ritu. You are truly an inspiration to the MS community, and the work you’ve done has already helped transform the MS landscape. On a final note, if you look back 5 or 10 years from now, what is the single greatest change or impact you would have liked to have made with the work you’re doing?

Bio:

Since her diagnosis in 2012, Ritu has gone on to create a global community for MS patients and caregivers. Ritu has created a hub for education, awareness and acceptance of MS amongst the PwMS’ families, friends, colleagues and society. Through her efforts, she is also trying to remove the fear, social stigma and taboos associated with MS to create acceptance. She believes that anything can be overcome with Love and Positivity and that is her motto: Spread Awareness with Love and Happiness. With the support of her family and using her marketing skills, she has single-handedly taken up this mission of bring a change to the way MS is perceived today around the world.

Links:

Ritu and multiplesclerosis.awareness on Instagram
Ritu’s story as featured in Rare Revolution Magazine
Ritu’s YouTube channel
Ritu’s Facebook page
Ritu’s podcast, 10 Minutes for MS
Check out some of Ritu’s global MS awareness campaigns:
- BeatMSWith
- WeSwitchMS
- WorkOutMS
- HowMSFeels
Some of Ritu’s live interviews with doctors on IGTV and MS Warriors:
- Ingels:MS and Covid 19
- Michael Murray:Diet & MS
- Tom O’Bryan:Gut Health & MS
- E Stem Cells Therapy:Part 1 , Part 2

Coming up on our next episode:

Pack your listening bags for Surrey, England on the next episode of Living Well with MS Coffee Break #21, premiering August 30, 2021, when we introduce you to entrepreneur and philanthropist Julie Pankhurst. You won’t want to miss her fascinating personal story, and hopefully her shared experience with MS and the OMS program will enlighten and inspire you!

Don’t miss out:

S3E40 Transcript

Ritu Kaur: A One-Woman MS Awareness Machine

Geoff Allix (1s):

Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingMS.org/podcast. If you enjoy the show. Please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.

Geoff Allix (44s):

Now, without further ado, on with the show. Ritu Kaur is no ordinary woman. She's creative, accomplished, life-loving, and after getting diagnosed with MS, has made it her single-handed mission to educate people about MS to reduce the stigma around it and lessen undiagnosed and misdiagnosed cases. MS is not the same for everyone, nor does MS define a person. Only their courage and strength do. With love and kindness in her heart, Ritu has taken to spreading awareness about MS and building a community around the globe to create acceptance of MS among people with MS and their families, friends, colleagues, and society. Through her adept use of social media, Ritu is building a platform where people with MS and their supporters can get counsel and emotional support, where they feel loved, accepted, and confident.

Geoff Allix (1m 32s):

Welcome to Living Well with MS, Ritu.

Ritu Kaur (1m 35s):

Thank you so much.

Geoff Allix (1m 36s):

I believe your actual name is Surjeet. Is Ritu a nickname?

Ritu Kaur (2m 6s):

Yes, Geoff. Ritu is my nickname, but people love this name Ritu. It’s just easy to pronounce. They feel that it's more comfortable for people to say Ritu. They feel that closeness to me when they call me Ritu so yes. Surjeet Kaur is my official name, but people call me Ritu as well.

Geoff Allix (2m 25s):

Okay. If you see the two names, it's the same person. There are many thousands of people around the world that know the name Ritu, thanks to the work you’ve undertaken to build a community around the cause of raising MS awareness. First off, could you share a little bit about your personal background and connection to MS?

Ritu Kaur (3m 10s):

Thank you so much for this wonderful introduction. When it comes to me, I was diagnosed with MS in December 2012. I got this as a Christmas gift from God. I know that it was given to me for a reason, and the reason was to help people all around the globe. That's why I took up this mission of spreading awareness. Yes, MS was unknown to me, and I was too scared. I did not know if I'll be able to see my birthday coming up the next month in January, but it all passed.

Ritu Kaur (3m 50s):

I sailed through everything. I sailed through the storms, through horrible symptoms I had, everything. I believe the support of my family and God's blessing really helped me through that. When I was diagnosed initially, I had symptoms. I had my right-side numbness. The symptoms got so bad that I could not even pick up a spoon to eat. My mom had to feed me with her hands. I had sensitivity over my right side that even with a strand of hair touching my skin, I would scream out in pain.

Ritu Kaur (4m 39s):

All these symptoms lasted over three weeks’ time and doctors could not diagnose them initially. Then I met the right doctor in Mumbai. He did my MRI and he said, “It looks like MS. We will have to do your lumbar puncture as well.” It was all quick. He did my lumbar puncture; my report came within two to three days. It said I had MS. I spent Christmas celebrating it in the hospital. From the New Year, I started DMDs, which was Avonex. Ever since then, I have been on a mission to spread awareness.

Ritu Kaur (5m 19s):

The main thing here was I felt very lucky to know that I was diagnosed with a problem. I know what I had. My sister is a neuro-specialized physiotherapist. She was a valuable help with my complete diagnosis and contacting the doctors. I had guidance but what about the people who do not have people to guide them to the right doctors to meet? They are not in the right city wherein they have such qualified neurologists, especially in India. I also realized that the treatment is so expensive in India.

Ritu Kaur (6m 11s):

My one Avonex injection would cost me 10,000 rupees. How many people can afford that? There are people who have a salary of just 10,000 rupees. All those things really touched me. I said, “I have to do something.” One more thing I saw, when I was diagnosed, there were so many friends and colleagues who said, “You should not talk about these kinds of problems to people. Those issues, keep it to yourself.” Some of the people also said, “You should get married immediately because you can't live alone.” I said, “No. Even though I have MS, I want to be independent the way I have always been. Trust me, I will prove to be stronger than I ever was.” I have two challenges here.

Ritu Kaur (6m 57s):

I had to prove to myself that I am perfect. I’m fine, there’s nothing wrong with me. I also had to face a society who said, “You should keep your identity hidden. You should not tell people that you have MS,” because people see someone with a disease, they feel, “She has a problem. Let's stay away from that person. Maybe I'll get it. Maybe it's contagious. You never know. Maybe you'll have problems getting married. You will not get a guy who would like to marry you in the later years of life so get married immediately.” Why is there so much social stigma? Why is there so much of a misconception? Why don't people come to know that they have MS for years of staying with this disease? If someone has MS, will that person ever know they have MS at the right time? Also, the expensive treatments. It was all, together, running in my mind. That's what inspired me to take up this challenge and do something.

Geoff Allix (7m 34s):

How do you think what you do fits with big organizations like MS Society around the world? How is your work different from theirs? Has it supplemented them?

Ritu Kaur (8m 17s):

MS Societies are societies. They have lots of contacts. They are politically driven. They are doing their own jobs but I, as an MS patient myself, understand what MS feels like. It’s a different game altogether. How I connect to people personally is something maybe the societies cannot give. If you write a message to the MS Society, maybe one of the employees will message you. They will connect you with someone else and the other person. Yes, of course, they have more contact with doctors.

Ritu Kaur (8m 58s):

They might be able to help in more detail but what I give it to MS patients personally is precious. Tomorrow, if someone writes a message to me, I have the responsibility to answer them myself, not a second, third, or fourth person. They get answers from me. It’s just me here. That is the personal connection, the personal touch, and the language I can give which the other societies do not give. Trust me, when some other patients messaged me, they have a problem and they are in Africa, India, or any other country, even in Pakistan, or any place, I message their respective MS Societies and connect them.

Ritu Kaur (9m 45s):

This is a patient in your place, in your area, can you help them with the required doctor, required facility, medical assistance, financial assistance, or anything that they are asking for. Here, I'm a connection between the societies and the patients. Whatever I can give them personally, like mental support, I'd give them. Of course, I know that something is beyond my capability. I can't have a connection with doctors in South Africa. I don't know who to connect with. For that, of course, you must reach out to the societies.

Geoff Allix (10m 4s):

You've talked about your relationship as an individual, but you've got a community of over 17,000 people on Instagram. As well as being an individual, do you feel that there's a community between those people?

Ritu Kaur (10m 46s):

Yes, of course. There's a strong community between those people as well. What I do is I just provide them with a platform wherein all MS patients can meet and connect with each other. Sometimes, I take Zoom meetings wherein I invite people to join and we have a community forum there. People can discuss their problems, guide each other. That is one way. Otherwise, if someone has a problem, I post it on my page and there are other people answering with some tips they have to that problem. They interact with each other.

Ritu Kaur (11m 35s):

The introduction that you see on my page, I think I'm very proud of that. In fact, I know that MS Patients in my community have become such good friends, they have met each other offline, and they are like best of friends. Not just them, it was me also because I'm an MS patient myself. Even I have made friends and families all over the world now. Tomorrow, if I go to the US or UK, anywhere, I know I have a sister there, or maybe I have a best friend. That's the kind of community I have created. You can feel comfortable in that community. You have people who can understand you and love you.

Geoff Allix (11m 52s):

You're based in India. What do you see as specific challenges in India in terms of MS awareness and acceptance? Are there things that you can do to address those in your homeland?

Ritu Kaur (12m 36s):

Yes, absolutely. When I got the MS initially, I did not know MS. That is the first thing that there is no awareness about MS. When I had visited New York previously, I saw that there were banners and posters about multiple sclerosis in the metros. People could read that there is something known as MS. We do not have a banner or anything like that in India. I have not seen it, at least. The other thing is that the MS Society should shout out and see we are doing MS Walk, MS Marathon. It is also done in India but on a smaller scale. It has not given much of the media limelight.

Ritu Kaur (13m 28s):

That is something that should have been here, I feel. Initially, when people are diagnosed with MS, they don't want to talk about MS. They have a lot of fear. Like I said, to me, people are advising, “Get married,” or they were saying, “Keep it to yourself. Don’t share the news that you have a problem or a disease.” That's the social stigma that is in India. I think that is the biggest challenge right now, but I'm happy to see that people are now breaking away from that social stigma. When I had started this stage, I started it on Twitter and Facebook initially, and then on Instagram. I saw for so many years, I had not gotten a single follower from India.

Geoff Allix (13m 44s):

You've mentioned about fear of a stigma. Is it a fear of a stigma or is there actually taboo? Do you get treated differently in India because of having MS?

Ritu Kaur (14m 24s):

Yes, it's a very important question. It is taboo, of course. That's the reason why people don't want to talk about it. They feel, “If I tell someone that I have the disease, they will not hire me.” If I am a working professional, they will say, “She or he is not capable. Tomorrow, something wrong can happen. Why should we take responsibility for that person?” Of course, it's a big taboo. At the same time, the taboo gives rise to fear in a person. Once someone is diagnosed with MS, they don't want to talk about it because they don't want to be treated differently.

Ritu Kaur (15m 7s):

That's the thing. That's why people are scared to disclose that they have MS. When I had started these pages earlier on Twitter and Facebook, and then on Instagram, I did not have any of the Indian followers. Now, I'm very proud to see that I've got so many Indian followers. It really feels good to receive messages from some of the followers saying, “Thank you for being an Indian and raising this kind of awareness because this really gives us a lot of strength that someone, a person like me, is doing this social work.”

Ritu Kaur (16m 10s):

This is the kind of strength I am personally giving to the Indian people, which I'm really happy about. In fact, I also do live sessions on my Instagram page, wherein I invite MS Warriors to come and share their stories. I was very happy to see that some of the Indian patients also joined my live Instagram and shared their stories, which earlier, they did not even want to talk about or accept the MS. Yes, India is a different country with lots of cultures and lots of different thoughts and different kinds of perceptions to deal with. I think it's getting quite modern now and people want to talk about the things which are once considered to be taboo. I'm just really proud to be one of them to bring that change to India.

Geoff Allix (16m 30s):

Just to change the subject, you've got a background in marketing, and you've applied some of your marketing skills to some pretty amazing awareness campaigns. There are links to all those in the show notes, as well as your social media channels. How do you think those awareness campaigns have made an impact?

Ritu Kaur (17m 13s):

Yes, I'm a marketing professional and I have done a lot of video campaigns. This was the aim of spreading awareness in a fun manner. We do see videos wherein someone comes and sees, “MS is bad. MS gives me this kind of problem. I'm having this kind of pain.” We had those kinds of crowdsource videos. What about showing people a different side of MS? “Yes, I have a problem, but you know what? MS can’t stop me. I still can do and achieve the dreams that I want to.” That's what my campaigns are mostly about.

Ritu Kaur (17m 56s):

My recent campaign was we switched MS, which showed initially that I've got pain in my leg. I've got numbness in my leg, but the next flip of the switch was, I'm running. I'm still running in the marathon. This kind of fun campaign is actually admired. People really liked to participate in it worldwide. I've got an audience from the US, UK, Australia, India, Africa participating in these kinds of campaigns. The other campaign was “Beat MS with a campaign.” It was on the similar lines that I have problems, but do you know what, I beat MS with a proper diet.

Ritu Kaur (18m 36s):

I beat MS With proper exercise. I beat MS with just music or just dancing. I think these kinds of campaigns have a very strong meaning. With these kinds of campaigns, I can actually change the perception of how MS is seen now all over the world. It is seen as a serious illness or chronic disease, but it is not seen as MS is there, but it cannot stop and cannot crumble anyone’s spirit. The message of all the campaigns is this. It cannot crumble a spirit.

Geoff Allix (19m 1s):

As well as all the things you've talked about already, building community and raising awareness, you're also like me, a host of a podcast, 10 Minutes for MS, which is presumably for you and another great way to get your message out to people. What do you think that podcasts provide to advance the cause compared to other media?

Ritu Kaur (19m 45s):

I've always been talking about community building and creating awareness. This podcast is not just about awareness but it's also about education. It is about educating people about MS. That's the reason why I've got doctors worldwide talking about different factors of MS. Some doctors are talking about fatigue. The other doctor is talking about exercise. The other is talking about diet, stem cell therapy, or different kinds of treatments available. This is more focused on education. Other podcasts are also there. It is in the MS community. They are also very good podcasts talking about inspiring stories and creating awareness. Mine is totally focused on educating people about MS, which I think is very much required. In fact, I've got feedback from many people that they have learned so much from my podcast. They said, “We don't even hear from the nurses and the doctors.” That’s the kind of education I’m providing. The podcast is for education and my pages are for awareness and community.

Geoff Allix (20m 19s):

So, on the personal note, how do you personally find time to stay healthy and balance? Given how much time do you spend on your MS awareness work?

Ritu Kaur (21m 11s):

They say you should practice what you preach so that's what I follow. When I say that workout is important, no matter what, I have to take time even if it is late at night, even after dinner. If I have to walk, it means I have to walk. I have to clock my timing that yes, I have to definitely do two hours of workout every day, whether it is yoga, strength training, or just walking. It has to be a workout. I have disciplined myself that way. My health is my priority, so I have to take care of it. My workout schedule is very much strict as is my diet. I'm an Indian.

Ritu Kaur (21m 52s):

They say that gluten is very much of a staple diet for us because we have rotis, chapatis, parathas. Trust me, I love those. It was difficult for me to leave aside gluten and wheat, but where there is a will, there's a way. I managed to do that. For example, I replaced my gluten, my wheat with quinoa flour. We have alternatives available. Only if you want to really look for it, you will. That's how I have done. I have when taking care of my diet, my exercise, my sleep pattern. It has to be eight to 10 hours of sleep definitely.

Ritu Kaur (22m 41s):

Like I said, I give priority to my health. I stay away from stress as much I can. I do whatever makes me happy. If something is giving me stress or burden, I just want to quit that thing. I'm not a quitter, I'm a fighter I know, but my health is my priority. I don't want to disturb it in any way. Other than that, I am still on DMDs. Like I said, my first DMD prescribed by the doctor was Avonex. I'm still on that. It is a weekly injection that I had to take myself so I’m following that.

Geoff Allix (23m 3s):

You mentioned about avoiding stress but is there anything specific that you do day-to-day to keep your mental health? There's definitely a mental side to MS as well and there's a tendency for people to get depressed or feel blue. Do you do anything the day-to-day to help with that side of things?

Ritu Kaur (23m 42s):

I just feel that my positive outlook has really helped me through this journey. I believe in looking at things from a positive aspect. If something is going wrong, I see it as wrong, but if I look at the other side of the picture, maybe it's something for good. I just believe in three things. Whatever happens, it’s for good. This is one mantra. The second is if God is putting you in a trouble, then it's his responsibility to take care of all of it so you don't have to worry about it. He will take care of you. You are his child, so you don't worry about anything. The third thing is, of course, my family environment is really good.

Ritu Kaur (24m 22s):

I have a very supportive family. My parents, my siblings, my husband, everybody's very supportive. They know how I am. They, themselves, help me keep my positive spirits alive. I am today, a 36-year-old lady, a woman. If you see me at home, I don't behave like anybody older than 20. I still dance and jump around in my house like I’m 20 years old. Keep yourself young with all the positive ways that you can. Meditation is really important, I have to say that. I do 45 minutes of exercises including meditations every day. It not only calms the mind, but it will also help to gain a lot of patience and it really helps you cool down your mind. That is one thing which I think a person should follow. So, keep yourself young or by all the positive ways that we can.

Geoff Allix (25m 17s):

Well, thank you so much for being on our program, Ritu. You are truly an inspiration to the MS community. The work that you've done has helped transform the MS landscape. On a final note, if you looked forward five or 10 years into the future, what would be the single greatest change or impact you would have liked to have made with the work you're doing?

Ritu Kaur (25m 57s):

I have already started seeing the change. Like I said, I am seeing the changes that people have started accepting this as a disease that cannot stop and crumble them. I'm changing the perception of how it is seen in India. Now, people are talking about MS as a disease in India. I really pray to God that someday, this taboo just breaks away. There’s no more there. There is no problem for MS patients to find jobs. There is no problem for MS patients to have partners in their life. There is no problem for MS patients to live confidently because MS is not a punishment. It is definitely not your fault so why shy away or be scared? Live confidently. I think I'm getting closer to this, and I really want to see a 100% change or total turnaround from what it is right now in the next five to 10 years.

Geoff Allix (26m 34s):

Thank you very much for joining us.

Ritu Kaur (26m 37s):

Thank you so much, Geoff, for your wonderful time.

Geoff Allix (27m 16s):

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingMS.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingMS.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by Grant from the Happy Charitable Trust. If you'd to support the Overcoming MS Charity and help keep our podcast advertising free, you can donate online at www.overcomingMS.org/donate. Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingMS.org. Thanks again for tuning in and see you next time.

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Welcome to Living Well with MS Coffee Break #20, where we are pleased to welcome Gillian Robertson as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Gillian, beaming to you straight from Grimentz in Switzerland.

Gillian’s Story

Gillian has been living in the ski resort of Grimentz in Switzerland for 14 years, after relocating for work 18 years ago from the UK to Switzerland. She and her husband have three grown daughters and two grandchildren, all now living in England. In April 2016, Gillian began feeling numbness and pins and needles in her feet, which gradually spread causing problems with her walking and balance. After various tests and referrals, she was diagnosed with RRMS in January 2017. Following physiotherapy, she started to take a disease modifying drug and decided to follow the OMS program, which she learned about after doing a lot of her own research on MS. She has since been able to return to her favorite sports: hiking, running, yoga, and skiing. She also completed a two-year Diploma in cuisine and patisserie at the Cordon Bleu culinary school and has started a new career as a private chef. Gillian volunteers for Overcoming MS by contributing and testing recipes. She is also a member of the OMS Communications Advisory Group.

Questions

Gillian, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Gillian Robertson is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’ve been a valuable contributor to the OMS community. For example, contribute recipes to the OMS website. What’s that experience like?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
If you tap into your personal experience for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

3 Fun Facts About Gillian (in her own words)

I am passionate about food, cooking and eating! Always have been. I am someone who lives to eat, rather than eats to live. Following the OMS program has not changed that, and whilst there are some limitations on the types of food I can eat now, meals can still be just as delicious at the same time as being OMS-friendly.
I love the outdoors and feel very lucky to be living in the mountains, where I can ski in the winter and run, hike, and bike in the summer. I really believe that making the most of the outdoors greatly improves our physical AND mental health.
I am always working to improve my foreign language skills. Having lived in Italy and Switzerland I have had plenty of opportunity to do so, and can now speak French, German, and Italian to varying degrees. Great brain-training!

Gillian’s Links

Follow Gillian on Instagram, where she posts OMS-friendly recipe ideas, as well as photos of her cooking and life in Switzerland.
This is a great site for vegan and vegetarian recipes, many of which are OMS-friendly or easily adaptable.
This is a great Swiss recipe resource to browse through, with lots of vegan and fish recipes which are OMS-friendly or easily adaptable.
Here’s a free app for guided meditations/music for relaxation.
Here are some free yoga videos for all levels.
Gillian clearly loves languages, and she thinks this app makes learning a language a lot of fun.

Coming up on our next episode

On August 18, you can “meet” India’s Ritu Kaur, who has taken up a one-woman effort to raise awareness about and destigmatize MS. She truly is an MS awareness machine! And don’t forget to submit your questions for Ask Jack #4 by August 23 by emailing them to podcast@overcomingms.org. Ask Jack #4 premieres on September 15.

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We all know that exercise is a key component of healthy living, and particularly important too if you have MS, which is why it plays such a prominent role as one of the steps of the OMS Program. But did you know that when you’re exercising your body, you’re working out your nervous system as well? Our guest on this episode of Living Well with MS, Dr. Gretchen Hawley, will explain neuroplasticity (for us lay people, that’s the brain’s ability to continually change, a sign of brain health) and how exercise can impact it, as well as share her insights on helping people with MS improve their strength, balance and mobility.

Bio:

Gretchen Hawley is a Doctor of Physical Therapy and a Multiple Sclerosis Certified Specialist. After graduating from Simmons University in Boston, she developed a Multiple Sclerosis program alongside two of the city's top MS neurologists. Dr. Hawley utilizes the concept of neuroplasticity to improve strength, balance and walking in those with MS by using specific, functional exercises. She has been a keynote speaker at several National MS Society events and other MS focused conferences in 2018 and 2019 and presents frequently to MS groups. Dr. Hawley brings a keen understanding of the challenges faced by people living with MS and has developed a virtual physical therapy program to help people improve their MS symptoms while in the comfort of their own home and guided by an MS specialist. Dr. Hawley resides in Buffalo with her dog, Finn.

Questions:

We hear a lot about new training methods, such as HIIT (high intensity interval training); is it effective for people with MS?
How long should the intensity intervals be?
If you’re doing strength training as well, should you do cardio before or after?
What are different types of strengthening for people with MS?
How does an “MS-specific” exercise differ from regular training?
Can you provide some examples of “MS-specific” exercise?
What’s the right exercise order for different types of exercises?
Is it better to do an exercise like walking even if you’re having an off day and do it badly or wait till you can do it well with good form?
How do you find the motivation to exercise consistently?
Do you recommend days off from exercise?
You have an online wellness program called The MSing Link. Can you tell our audience a bit about it?

Links:

Learn more about Dr. Gretchen Hawley’s online MS wellness program, The MSing Link (SPECIAL OFFER! $15 off any membership if you use promo code OMS2021)
Check our Dr. Gretchen Hawley on YouTube
Check out Dr. Gretchen Hawley on Facebook
Check out Dr. Gretchen Hawley on Instagram
Watch Dr. Gretchen Hawley’s Behind the Scenes video
Learn more about Gretchen Hawley

Coming up on our next episode:

Next up from the OMS podcast family: starting August 9, meet Gillian Robertson, who lives in the UK and volunteers as a recipe contributor to the OMS website, on Living Well with MS Coffee Break #20, part of our ongoing series introducing you to members of the dynamic OMS community from around the globe.

Don’t miss out:

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Welcome to our third installment of Ask Jack, featuring the prodigious culinary talents of professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Set your dials to this station when Ask Jack #4 premieres on September 15, 2021, just in time to kick off autumn (for one half of the world, at least). Don’t forget to submit your questions for Jack by emailing them to podcast@overcomingms.org.

Introduction

Now, on to this episode’s main theme: Summer is for Eating Well!

In this episode, we dig into (literally) into some topical questions about foods and activities that are part of every summer culinary package, and Jack makes sure to advise you on how to make sure they align with your OMS diet and still taste great. Given how central a role grilling (or BBQing to some of our listeners) plays in summer eating, we focus mostly on understanding the growing segment of meat replacers and how they fit into the OMS diet, plus addressing summer cooking ideas and techniques.

Questions 1 + 2

Our first question comes from Mathilde in London, and it harkens back to a popular theme on earlier episodes – cooking appliances:

I know that Jack already talked about various cooking appliances, but I was wondering what were his thoughts about induction? My understanding is that it is a great one when it comes to controlling temperature. Is that true?

Our next question, from Gina in Bristol (UK) is about reheating food, which is relevant for summer and all seasons:

When I make a stir fry or soup, I sometimes add olive oil or sesame oil after cooking while the food is still hot. I also like to batch-cook and am wondering what is the best way to reheat foods that have some oil in or on them (roasted vegetables come to mind)? Is it problematic to microwave leftovers?

Question 3

There was a flurry of questions from our audience about how healthy meat substitutes and chicken substitutes are, given they often have loads of chemicals or other “unnatural” ingredients. Jack and Geoff dig into this topic to unpack some of the key points to be mindful of when considering whether to consume one of the many meat alternatives and plant-based “meat” options on the market.

Question 4

Eating outdoors and picnicking are summer fixtures. Many of our listeners wanted to know what are the best types of OMS-friendly foods to bring with you to a picnic?

Question 5

On a sizzling BBQ note, Nicola from Canterbury (UK) wanted to hear ideas for things to try on a BBQ. In her experience, most homemade bean burgers just fall apart, and she worries about cooking fish over direct heat. She has had some success with mushrooms in foil but otherwise is out of ideas. Any tips?

Question 6

What are the main factors and considerations to ensure your summer cooking is healthy and fun? Jack provides some great overall guidelines to make sure you spend more time enjoying your summer fare and less time deliberating over it.

Question 7

Most people associate grilling with proteins, but many of our listeners are curious about the best veggies to make on an open flame and wanted to get some good tips on grilling vegetables. Jack offers some great advice on this topic. Here are some further thoughts on how best to cook veggies.

Question 8

Most meals end with dessert, and so does this episode. One of our listeners asked the following:

Do you have any suggestions on what I can bring as a dessert if I'm invited to a picnic?

Links:

Connect with Jack: Website | Instagram | Twitter | Facebook

Coming up on our next episode:

On July 28, tune into the next episode of Living Well with MS for a topic that’s critical to everyone’s good health: exercise. Specifically, one of our favorite guests – Dr. Gretchen Hawley – rejoins us to discuss ways in which we can rethink exercise to make it more accessible to everyone. You’ll really get a great dose of advice on how to get into the great exercise groove at all levels of ability, tapping into Dr. Gretchen Hawley’s expertise as a Doctor of Physical Therapy specializing in MS and creator of The MSing Link, and online MS wellness program.

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #19, where we are pleased to welcome Joia Lewis as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Joia, beaming to you straight from the Estoril in Portugal.

Bio:

Joia Lewis was born in Portugal to missionary parents and lived there for 10 years until the family returned to the United States. In college she studied violin at the Boston Conservatory and Russian at the Pushkin Institute in Moscow, before spending a year traveling throughout Europe, Africa, India and the Middle East. Seeking to continue studies in both the humanities and sciences, she completed graduate work at Indiana University for a PhD in the Philosophy of Science. 30 years of teaching scientific reasoning, logic and medical ethics also include raising her daughter in California and working for a software company there and in Minnesota. She was diagnosed with PPMS in 2009 and taught 5 more years until full medical retirement and disability in 2014. Her symptoms were fortunately stable enough to allow for moving back to her birthplace in Portugal in 2018, where she currently lives near Lisbon and works on her many writing projects.

Questions:

Joia, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and we couldn’t have a more representative example than you. You’ve had quite an international and multicultural life, which has taken you full circle back to Portugal. Can you tell us a bit about this whirlwind trajectory?
When were you diagnosed with PPMS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
You have had a rich career as an academic, serving as a professor of philosophy of science. And now you’re an essaying, blogger and occasional editor. How did your academic focus at all inform your approach to dealing with the realities of experiencing MS?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
As I understand it, you have some thoughts to share with our community about ways in which one can deal with the anxieties surrounding experiencing MS symptoms. As this is a critical area for anyone with MS, do you have any personal lessons or tips to share?
You’ve been a valuable member of the OMS community. As an example, you’re the ambassador of the OMS Circle currently covering all of Portugal. What’s that experience like?
Shifting gears, literally, I’m curious to understand how you work exercise and meditation into your daily regimen. What kind of exercise do you do regularly, and how do you feel it impacts you physically and emotionally?
If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Joia’s Links:

Check out Joia’s blog
Read Joia’s essay about her PPMS journey
Joia’s interview on the Women Who Walk podcast
Joia’s LinkedIn profile
Joia’s Twitter feed

Coming up on our next episode:

Tune in on July 21, 2021 for the third installment and special summer edition of Ask Jack, our special 5-part series where certified OMS foodie and professional chef Jack McNulty answers cooking- and food-related questions from you, our OMS community. This episode is all about picnics and grilling, so have a listen and you’ll be sure your summer meals are both tasty and OMS-friendly. And remember, you can submit your questions for future Ask Jack episodes by emailing them to podcast@overcomingms.org.

Don’t miss out:

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Meet David Lyons, bodybuilding champion, media personality and founder of a global fitness training program. Did we mention David also has MS? Through the MS Fitness Challenge among many other endeavors, David has dedicated his personal and professional life to helping people with MS of all abilities learn how to overcome their physical challenges and lead healthier lives.

Questions:

Welcome to Living Well with MS, David! Can you tell us a little bit about yourself, your background and anything our audience should know to get a sense of who you are?
You’re the creator of the MS Fitness Challenge. What exactly is that?
What are the key things people with MS are missing when it comes to fitness, in your view?
Does the MS Fitness Challenge program work for people with different kinds of MS, different levels of mobility, etc.?
How does your approach to helping people with MS improve mobility through exercise and strength training differ from other offerings out there?
Have your methods been part of any scientific research or published studies that support their efficacy?
If you could give someone with MS 3 quick hacks to fitness that would allow them to see a difference in the way they feel relatively quickly, what would these be?
You established an MS Fitness Challenge as a nonprofit organization. How come?
What is the difference between MS Fitness Challenge and your virtual personal fitness program, Optimal Body Personal Fitness?
What’s next for you in the MS fitness space? Any new programs or ideas on the horizon to enable you to reach more people with MS?

Bio:

David Lyons was diagnosed with multiple sclerosis (MS) in 2006 at the age of 47. A bodybuilder and former owner of fitness centers, Lyons made the choice to fight MS head-on through bodybuilding. He founded the MS Bodybuilding Challenge in 2008, and in 2009, at age 50, competed in his first bodybuilding contest with MS, winning a Most Inspirational trophy. He went on to be presented with the Milestone Award by the National MS Society for his accomplishments. In 2012, Lyons and his wife, Kendra, a registered nurse, created the MS Fitness Challenge to support people with MS in their efforts to stay as fit as possible, overcome limitations, and keep their bodies moving. The cause also educates trainers on fitness for MS.

In 2013 Lyons received the Health Advocate of the Year Award alongside fitness icon Lou Ferrigno and in 2015, he was honored by bodybuilding legend Arnold Schwarzenegger with the Health Advocate Lifetime Achievement Award. In 2016 Lyons received the Lifetime Fitness Inspiration Award from the Global Bodybuilding Organization, an international fitness federation, and in 2017 was acknowledged by the National Fitness Hall of Fame (NFHOF) with a Special Recognition Award. Later that year he was asked to be one of the Founding Partners of the NFHOF Institute for education and in 2019 David was the only fitness expert with MS to be inducted into the National Fitness Hall of Fame. Lyons has been named the Most Dedicated MS Fitness Expert worldwide by both Global Health and Pharma and Global 200 in 2019, 2020, and 2021. He was voted as one of the Top 100 Healthcare Leaders by the International Forum on Advancements in Healthcare in 2020.

Lyons is the author of David's Goliath, an autobiographical story of his journey with MS, and his fitness book, Everyday Health and Fitness with Multiple Sclerosis, a #1 New Release on Amazon is for anyone who wants to get in top shape while battling physical or emotional obstacles to getting started.

David is engaged in many fitness initiatives for MS, including being the author of the MS trainers’ courses for both the National Federation of Professional Trainers (NFPT) and the MedFit Education Foundation; and speaking on MS and fitness at the nationwide Medical Fitness Tour.

In his latest branding venture, David has created a unique fitness website for the MS community under his OptimalBody brand called the OptimalBody Training Program for MS. This interactive platform educates and trains people with MS in his one-of-a-kind training methods that create neuroplasticity, muscle fiber activation, and brain to muscle reconnection.

Links:

Learn more about MS Fitness Challenge founder David Lyons
Check out the MS Fitness Challenge charity organization
Read David’s articles on Everyday Health
Watch a recent interview with David
Learn more about David becoming a finalist for the 2021 MS Innovation Challenge
Check out Optimal Body Personal Fitness, David’s virtual fitness training program

Coming up on our next episode:

Join Geoff on July 12th for the 19th instalment of Living Well with MS Coffee Break, beaming to you straight from Portugal, as he welcomes Joia Lewis, a writer and former professor of philosophy who shares her OMS journey with PPMS.

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #18, where we are pleased to welcome Rachel Knight as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Rachel, beaming to you straight from the New Zealand.

Bio

Rachel moved to New Zealand from Chester, England in 1996 while working in the electricity industry. She left the corporate world nine years later to start her own business helping people grow their own food. She was diagnosed with MS in March 2017 but was fortunate to go to an OMS retreat in Australia six weeks later. She is the OMS Ambassador for the Hawke’s Bay OMS Circle and develops and tests recipes for the OMS website.

Rachel enjoys getting out and about with her two Labradors, she makes many of her own clothes and has recently upgraded to an e-bike for more comfortable local commuting.

Questions:

Rachel, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Rachel Knight is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’ve been a valuable member of the OMS community. As an example, you’re the ambassador for the OMS Circle in Hawke’s Bay. What’s that experience like?
You also test OMS-friendly recipes for our website. What does that entail?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Coming up on our next episode:

Get your fitness hat on June 30 for the next episode of Living Well with MS, when Geoff Allix talks to MS Fitness Challenge creator and exercise maestro David Lyons about the life-changing power of exercise and fitness to people with MS at all ranges of ability.

Don’t miss out:

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Bio:

Hana is an event project manager, traveler, health freak, and most importantly, an OMS volunteer coordinator. She started following the OMS program after being told she might have MS. After reading everything about the brain, neurons, nutrition and the health benefits of a plant-based diet and finding the OMS website, she decided to give it a try. Her efforts slowed down the progression of her condition and now, after five years, many OMS-friendly recipes, countless liters of flaxseed oil and hours of yoga and journaling, her neurologist informed her that whatever she’s been doing she should keep it up, and her file was placed in the ‘let's observe’ folder indefinitely. Hana believes following the OMS protocols was one of the best decisions she has ever made.

Questions:

Welcome to Living Well with MS, Hana! Can you tell us a little bit about yourself, your background and anything our audience should know to get a sense of who you are?
How did you discover the OMS program… describe the path that led you there?
What’s your experience been like on the OMS program… tell us about the ups and the downs?
OMS is marking this month to recognize the amazing contributions our volunteers make to the organization. You’re a volunteer coordinator for OMS. What exactly is that role about?
What kind of impact do you think the volunteers you work with make in helping OMS further its mission to make more people aware of the positive impact of healthy lifestyle changes for people with MS?
Do you have a history of volunteering for other causes or organizations? What inspires you personally to be a volunteer?
Why did you decide to dedicate so much of your volunteer energy to OMS?
If you had to provide some advice to people considering volunteering for OMS, what would it be?
Can you share any inspirational moments or experiences you’ve had as an OMS volunteer?
Thanks for much for sharing these perspectives on volunteering, Hana, and for the service you provide to the OMS community. Before we part, I wanted to ask you one last thing: if there is one tip or piece of advice you can give to new members of the OMS community, perhaps something that’s served you well in your own journey, what would it be?

Hana’s Favorite Instagram Feeds:

Gretchen Hawley
MS Diet for Life
Staying Healthy with MS
Tanya’s Living (Organic Raw Deli in London)
Amy Levin (Healthy Chocolates and Desserts)
Vegan Bowls (Vegan Recipes)

Coming up on our next episode:

Next up from the OMS podcast family: starting June 21, meet Rachel Knight, the OMS Ambassador for the Circle in Hawke’s Bay, New Zealand on Living Well with MS Coffee Break #18, part of our ongoing series introducing you to members of the dynamic OMS community from around the globe.

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #17, where we are pleased to welcome Yasmin Neves as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Yasmin, coming to you straight from Cardiff, Wales.

Bio

Yasmin owns and runs several successful businesses and has expertise in human resources, property and coaching. Yasmin is a Master Coach of Neuro Linguistics Programming, which means she really understands how the unconscious mind works and has a whole range of tools to help people achieve long lasting change in their personal and professional lives. Yasmin has overcome a number of personal challenges in her life and is currently learning to live well after a diagnosis of MS. She is passionate about wellbeing, mindsets, self-sufficiency and helping others to achieve their goals. Yasmin has transformed every aspect of her life and isn’t afraid of living a slightly unconventional life in the country.

Questions:

Yasmin, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Yasmin Neves is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’ve been a valuable member of the OMS community. As an example, you’re part of an OMS Circle in Cardiff. What’s that experience like?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Yasmin’s Top 3 Passions (in her own words):

I am passionate about the mind-body connection and how our thoughts become our reality.
Reconnecting with nature is a powerful healing tool for me and it can be so simple. Just taking a moment to really look at a flower or listen to water or taking your shoes off and feeling the ground beneath me are daily habits which help keep me grounded and reduce my stress levels.
Self-sufficiency and the environment are two additional key areas (along with health) which drive me to live a holistic life.

Yasmin’s Links:

Check out Yasmin’s HR and coaching website here.
Yasmin is very active on Instagram; check out some of her feeds:
- Yasmin’s personal page
- Yasmin’s farm page
- The food page from the OMS Circle in Cardiff

Coming up on our next episode:

Starting June 9, tap into the joys of volunteering by meeting one of our volunteer coordinators, Hana Javurkova, as OMS honors those who give so much of their time and expertise in the service of our community. And remember to submit your questions by June 15 for the next Ask Jack episode on summer eating, picnics and grilling by emailing them to podcast@overcomingms.org.

Don’t miss out:

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Just in time for World MS Day, we take you to the forefront of research into lifestyle modification and its impact on MS health outcomes by welcoming Dr. Sandra Neate, Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at the University of Melbourne in Australia. Dr. Neate and her team are undertaking some of the most forward-facing work in this field of MS research, so unfasten your scientific curiosity and tune into this episode.

Bio

Sandra is a clinician researcher who is the Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at the University of Melbourne in Australia. The NEU researches lifestyle related risk factors in MS and health outcomes and the experiences of people who adopt lifestyle modification. The NEU is also developing and researching novel ways to deliver evidence-based information about lifestyle modification to people with MS, including online modalities. Sandra's personal research interest is in talking with people with MS and their families regarding the experiences of lifestyle modification.

Questions

Welcome to the program Dr. Neate, or may I call you Sandra?
You’re presently the head of the Neuroepidemiology Unit at the University of Melbourne, aka the NEU. Can you tell what the NEU actually is?
Is the NEU carrying on the research studies begun by Professor George Jelinek, such as HOLISM and STOP-MS?
What is the overarching aim of the NEU as a research body?
Who are the researchers that work for the NEU?
What kind of research projects is the NEU presently working on?
The MS Online Course sounds fascinating… what do you think its future impact will be?
The collaboration with the UK MS Registry sounds extremely promising too. What are your expectations for this relationship and how can it advance the cause of elevating lifestyle intervention or modification approaches?
What’s on the horizon for the NEU? What kind of projects and collaborations are you shaping for the future?
How does the NEU engage with OMS?
What can the next generation realistically expect for MS treatment?

Links

Learn more about the NEU here and on the University of Melbourne School of Population and Global Health website
Follow the NEU’s research updates on Twitter
Read about a recent study connecting fatigue and diet
See Prof. George Jelinek’s publication links on PubMed

Episode Disclaimer

Please note that the online course Dr. Neate refers to in this episode is funded by OMS. OMS is excited to work with the NEU once the course is ready to be made more widely available.

Coming up on our next episode

Up next, we invite you to join us on May 31 (and anytime thereafter on your favorite podcast platform or the OMS website) for Living Well with MS Coffee Break #17. There and then, you’ll get inspired by Debbie Emick, a Colorado-based author and podcaster who have overcome multiple chronic illnesses by tapping into the mind-body connection.

Don’t miss out

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Welcome to our second installment of Ask Jack, featuring the prodigious culinary talents of professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Set your dials to this station when Ask Jack #3 premieres on July 21, 2021, just in time to get great cooking tips for summer fun (at least for our listeners in the Northern Hemisphere)! Don’t forget to submit your questions for Jack by emailing them to podcast@overcomingms.org.

Now, on to this episode’s topics and questions:

What Shall I Eat?

First, a question from Annemieke in the Netherlands about peanuts, though what she’s asking about is no small matter for many of you:

In Dutch cooking, peanut butter sauce is quite common. To make the sauce you peanut butter. In stores, 100% peanut butter from raw peanuts is available and is unprocessed. BUT, on the OMS website it says: peanuts are defined as a ground nut and not recommended due to their higher saturated fat content. Some people replace the peanut butter with sunflower butter, tahini (sesame seed butter), cashew butter or almond butter or a mix of those four. But I’m confused about the sat fat and Omega 3/6 content of these different nuts and seeds versus peanuts. Jack, is it really a problem to have some peanut butter (from 100% raw peanuts) since we can eat also tahini, sunflower seeds and cashew nuts?

From Kiril in Bulgaria, let’s get to the slippery topic of oils:

Can we use grapeseed oil? And is it OK for baking too?

From Nick in Lincoln, Rhode Island, an important question about a really trending topic – plant-based meat alternatives:

Jack, are impossible burgers OK for people with MS who want to follow an anti-inflammatory diet?

Now on to canned foods, with a question from Duarte in Poland:

What's your view on canned legumes and fruits? Are there some to avoid? If so, which ones?

Helpful Tips and Cooking Techniques

From Marie in the United Kingdom, a question about coconut milk replacements:

She uses coconut essence and oat milk, but these don’t quite hit the mark. Any recommendations, Jack?

Still on the coconut theme, here’s a question from Ann, from the OMS Circle in Hertfordshire, UK:

What are some suitable substitutes for coconut oil in vegan recipes? Unlike coconut oil, olive oil doesn’t always work due to being liquid at room temperature. Jack, what do you think?

This other question from Marie in the UK may activate some pleasure centers in our listener’s food brains:

On the subject of chips, or French Fries for our American friends, she never used to eat them but her family, who also follow the OMS diet, often request them and she hasn’t succeeded to get them to really crisp up. Jack, any helpful tips?

Fun Recipe Ideas

Here’s a question from a listener in the UK on sour cream:

How can you make it at home in a whole food, plant-based way? Jack, any thoughts?

Now on to something we find very tasty here in the UK, but which isn’t always OMS-friendly: Yorkshire Pudding. Ann, from the OMS Circle in Hertfordshire, wanted to know:

Any recipe suggestions for OMS-compliant Yorkshire Puddings which replicate as near as possible the original in which the batter contains eggs and fat. A particular member of her Circle in Hertfordshire always complains that everything she tries leads to Yorkshire Puddings as “flat as pancakes!” Jack, any tips?

Since we are on a sweets kick, Ann had another question that might be relevant to many of our listeners who love to bake:

How do you make cakes taste light and moist when many of the ingredients needed to do so aren’t OMS-friendly?

And let’s end this episode on a crunchy note:

Jack, do you have any recipe ideas for gluten-free crackers and snacks, or anything savory that packs a crunch?

Bonus Content from Jack:

The Bottom Line on Peanut Butter

Even though you shouldn’t use peanut butter as a dominant food source in your diet, it is probably fine to eat some in small amounts every now and then. Minor consumption of peanut butter is unlikely to have any major negative effects as long as you are also avoiding harmful foods like sugary sodas, trans fats and other highly processed junk foods.

Grapeseed Oil

Grape seeds are waste products from pressing grapes for wine or juice. There is very little nutritional benefit in the oil and lots of downside. It is an oil that is considered to promote inflammation. Consider alternatives such as unprocessed rapeseed oil, extra virgin olive oil or no oil at all!

Impossible Burgers

Impossible burgers are made from a large list of unhealthy ingredients. It is probably best to avoid these burgers completely. Look for 100% plant-based alternatives, or better yet, consider making your own.

Impossible Burger Ingredients

Burger recipes on the OMS website

Black Bean & Mushroom Burger

Canned Legumes and Fruit

BPA is the biggest concern when it comes to canned food products. BPA is a chemical used in making plastics which may accelerate formation of fat cells. 90% of BPA in humans comes from canned foods and processed foods. Choose foods that are packed in Tetra Paks, Jars or BPA-free cans… or make your food fresh!

Coconut Essence and Oat Milk

Coconut essence can be added to non-dairy milk to help replicate the flavor and consistency of coconut milk (or cream). It is helpful to add a thickening ingredient to the mix to create the right texture. I recommend blending soy milk, chickpea flour, nut butter and some coconut water or essence. Read my complete thoughts here.

Substitutes for Coconut Oil in Baking

Coconut oil is used extensively in the vegan world. Quite a number of vegan baking recipes rely heavily on the use of coconut oil. In most cases, substituting a healthier oil like unprocessed rapeseed oil or extra virgin olive oil works fine. To create a richer texture for pastries, consider adding a tablespoon of nut butter.

Get Jack’s Vegan Pastry Dough Recipe

Getting Crispy Textures on Vegetables

Crispy textures on vegetables are created by caramelizing natural sugars/starches on the surface. Caramelization begins when sugars/starches reach a temperature of 120°C (250°F). This is also the point when all oils begin breaking down, although harmful elements are not produced until temperatures rise substantially more to 190°C (375°F) and held at this point for 10-20 minutes. Coating vegetables with a light amount of oil is considered OMS-safe because the surface moisture evaporating from the vegetables will prevent the oils from rising above 120°C (250°F). The oil coating will also speed the cooking/caramelization process and prevent too much moisture loss from the vegetable. Crispy textures can be accomplished without oil, although the vegetable will taste dry, a factor that can be overcome by coating the vegetable with a dip or vinaigrette after cooking. Adding a starch to the vegetable surface prior to cooking (corn starch, rice starch, tapioca starch) can help create a crispier surface without adding oils.

Get Jack’s Oil-Free Baked Potato Fries and Tangy Ketchup recipe

Sour Cream Recipe

Here is how Jack makes a vegan soy sour cream:

250 grams (1/2-pound) semi-firm tofu (or firm silken tofu)

3 tablespoons soy yogurt

25 ml. (2 tablespoons) extra virgin olive oil (optional)

juice of one half lemon

2 tablespoons apple vinegar

1-2 teaspoons sea salt

Combine all the ingredients in the bowl of a high-speed blender. Process until creamy smooth. Taste the soy sour cream and make any adjustments to the seasoning or acidic content, then blend again. Serve immediately or store in an airtight container in the refrigerator for up to 3-4 days.

Yorkshire Puddings

This classic recipe relies heavily on eggs and fat in the traditional preparation. The biggest problem in making a light and crispy version is the technique in the classic version, which is essentially a deep-fried preparation in a small tin like a muffin tin.

The key steps in making vegan (or OMS-friendly) cakes moist and light are to follow these guidelines:

Make sure all of your ingredients are prepared and your oven is preheated.
Measure all of your ingredients – preferably with a scale.
Sift all your dry ingredients into a bowl. Mix your wet ingredients in a separate bowl.
Use baking powder and/or baking soda as a leavening agent to replace eggs. Always include some acidic ingredient if using baking soda. Don’t use too much of either ingredient or your cake will taste soapy.
Fats create a cake-like structure and aid in making the cake moist. Consider a nut butter as an alternative to oil. If using oil, replace butter in recipes by using 80% or less of the butter total.
Always add wet ingredients to dry ingredients and mix just long enough to incorporate the batter evenly. Overmixing will create a heavy final product.
Make sure the cake is completely baked. Underbaking will make the cake taste heavy. Insert a knife or skewer into the center of the cake. It should be free of any cake batter when removed.

Making Gluten-free Crackers and Snacks

The key to making a crisp cracker is to get the dough rolled out very thinly. Sandwich the dough in between two pieces of baking paper and use a rolling pin to get the dough very thin. Place on a baking tray and carefully remove the top sheet. Baking is usually at 200°C (400°F) for about 10-12 minutes.

Links:

Connect with Jack: Website | Instagram | Twitter | Facebook

Coming up on our next episode:

Join us starting May 19 for the next episode of Living Well with MS for a very special and insightful interview with Dr. Sandra Neate, the Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at the University of Melbourne in Australia. The NEU is at the forefront of research into lifestyle related risk factors in MS and health outcomes, and the experiences of people who adopt lifestyle modification. Have a listen to hear what’s on the NEU’s research horizon and how it may impact you!

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #16, where we are pleased to welcome Rick Nelson as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Rick, beaming to you straight from the Philadelphia, Pennsylvania in the USA.

Rick’s Story (in his own words)

I am Rick Nelson. I live in Cherry Hill, New Jersey, in the United States. I’m married to Solange and am a father of three adult children – Anthony, Alice and Richard – and I’m very proud of all of them.

My Aunt Mary Jean had MS. As a family we experienced her advancing disability through my teenage and early adult years, culminating in her death at an early age from MS-related causes. Mary Jean took everything that the medical establishment had to offer in those days, yet she missed out on many of life’s joys, and never met her grandchildren.

A couple of decades later, in late 2004, I was diagnosed with MS.

I dove into the research found and embraced the Swank Diet. I was persuaded by long-range study, conducted by Dr. Roy Swank commencing in 1948, which found that people with MS who consumed less than 20 grams of saturated fat per day essentially didn’t progress to disability over the more than three-decade course of the study.

I was all in.

Later, I came upon Dr. George Jelinek’s book, Overcoming Multiple Sclerosis. With a family history similar to mine plus his background as a physician and medical journal editor, I felt Dr. Jelinek incorporated extensive research to take Dr. Swank’s work to the next level.

After devouring Dr. Jelinek’s book, I embraced the OMS Recovery Program.

Leading a busy life with a demanding corporate job and family duties, I struggled with stress control. I was less than successful in embracing meditation, so a few years later I traveled to Melbourne, Australia and participated in the OMS retreat at Gawler Centre. At the retreat I came away deeply moved by the knowledge, care and selfless humanness demonstrated by Dr. Jelinek, Zig and other members of staff.

It was my first time in a community of people with MS, and I came away impressed with the strength and the passion of the other participants. These were people who challenged the status quo.

I have been an advocate for OMS ever since.

OMS has been life-changing for me, it has provided hope, and allowed me to regain control of my health. The result has been many years of vitality and contribution to my family and community.

Questions:

Rick, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Rick Nelson is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’ve been a valuable contributor to the OMS community. For example, you established the OMS Circle in Philadelphia and serve as its ambassador. What’s that experience like?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
You’re also a successful entrepreneur and management consultant. If you tap into that expertise for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

Rick’s Links:

Check out Rick’s LinkedIn profile
Check out the work Rick does to help entrepreneurs

Coming up on our next episode:

Tune in on May 12, 2021 for the second installment of Ask Jack, our special 5-part series where certified OMS foodie and professional chef Jack McNulty answers cooking- and food-related questions from you, our OMS community. This is a tasty morsel you won’t want to miss. And remember, you can submit your questions for future Ask Jack episodes by emailing them to podcast@overcomingms.org.

Don’t miss out:

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Dr. Amy Novotny is a highly trained physical therapist who has committed herself to helping people with varying medical conditions, including multiple sclerosis, learn how to manage and overcome the pain and discomfort their conditions cause. She is the creator of the PABR® method, a holistic approach to restoring the body to its full potential using its own nervous system. PABR (which stands for Pain Awareness Breathing Relief) is a combination of breathwork and body positioning that calms the nervous system, and on this episode, Geoff Allix dives into this fascinating and transformative practice with the creator herself.

We hope you continue to tune in to more episodes of Living Well with MS, our Coffee Break series and our brand new limited series Ask Jack, featuring professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Watch this space as well as the OMS website and social channels for more updates.

Questions:

Welcome to the show, Dr. Novotny. May I call you Amy?
Can you tell our audience a little bit about your background?
You’re the creator of the PABR (pain awareness breathing relief) method and its main practitioner through your work under the PABR Institute. Can you give our audience an overview of this technique?
How can PABR be helpful for people with MS?
Why does a combination of body positioning and breathing calm the sympathetic nervous system?
What are the types of pain or discomfort specific to MS that PABR is especially well suited to helping people manage?
Are there specific types of MS your technique is better suited to than others, like primary progressive vs. relapsing remitting?
Can you share any case studies or success stories you’ve had working with people with MS?
How do you train people to learn and apply this method?
What led you to create the PABR method?
Has PABR helped you personally in any way to deal with pain?
What’s your vision for making the PABR method accessible to more people with MS and beyond?
Given we are still emerging from 2020’s Covid tunnel, what’s the light at the end of the tunnel you see in 2021?

Bio:

Dr. Amy Novotny founded the PABR® Institute with the mission to provide pain, stress and anxiety relief to those who seek a naturalistic form of treatment when other treatment methods have fallen short. Her unique approach comes from her experience treating in a variety of settings and with a wide range of patient populations over the past 12 years. Her background is in orthopedics, sports, geriatrics, balance disorders, nerve injuries, and most recently, chronic pain; and her influences from coursework at the Postural Restoration Institute gave her the foundation to develop this treatment method to address a wide variety of painful and restrictive conditions. Her methods have helped countless people reduce and eliminate pain, stress, anxiety, orthopedic surgeries, sleep issues and the need for medications. She co-authored two Amazon #1 Best-Selling books Don’t Quit: Stories of Persistence, Courage and Faith and Success Habits of Super Achievers, which share her journey on how and why she developed the PABR® Method. Her ability to speak French and Spanish has allowed her to communicate with and help various clients from all around the world, including France, Mexico, Central America and South America. She has a variety of interests including running 40+ marathons, running 10 ultra marathons (including two 100 milers), completing an Ironman triathlon, photographing wildlife and landscapes all over the world that has led to several of her images being chosen as Photos of the Day, most notably National Geographic Your Shot World Top Photo of the Day.

Links:

Learn more about Novotny
See Amy’s photography portfolio
Check out Amy on Facebook
Check out Amy on LinkedIn
Check out Amy on Instagram
Check out Amy on Twitter
Schedule a free 15m consultation with Dr. Novotny

Coming up on our next episode:

On our next episode, launching May 3, 2021, join us for our 16th installment of Living Well with MS Coffee Break as Geoff Allix sits down with Rick Nelson, the OMS Circle Ambassador in Philadelphia, Pennsylvania. You’ll love getting to know the face of our community from the City of Brotherly Love!

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #15, where we are pleased to welcome Rebecca Stonor as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Rebecca, beaming to you straight from the Adelaide, South Australia.

Bio:

Rebecca Stonor is a Wellbeing Officer, Plant Scientist and Plant-Based Nutrition Wellness Advocate. She has worked for nearly two decades in plant science and is certified in plant-based nutrition through eCornell University. After being diagnosed with multiple sclerosis she has used whole food, plant-based nutrition to reverse all symptoms and halt any further progression of her MS. A passion for helping others has led her to share her inspiring story via workshops, plant-based cooking classes and public speaking engagements. Rebecca is passionate about online cooking classes, private culinary instruction and personal cooking services as a way to show others how nourishing food truly is medicine.

Questions:

Rebecca, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Rebecca Stonor is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You’re really into plant-based nutrition and spreading the word to others have how food can truly be like medicine. How do you do that and what’s the reception been?
You’re also an avid meditator, with a daily 5am meditation ritual. How did you build up to that?
Any tips for our audience on how to work fitness and exercise into their daily routines?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
If there is one piece of advice you can share with people new to the OMS program, what would that be?

Rebecca’s Links:

Check out Rebecca’s site on plant-based nutrition
Check out Rebecca’s Instagram feed for recipes and mouth-watering food photos
Check out Rebecca’s Facebook page

Coming up on our next episode:

Ever wonder if there is a way to manage pain holistically? If so, you’ll want to be sure to catch the next episode of Living Well with MS, landing on your favorite podcast platform on April 21, 2021. On that day and anytime you want thereafter, you’ll be able to hear Geoff’s fascinating interview with Dr. Amy Novotny, a highly trained physical therapist who has committed herself to helping people with varying medical conditions, including multiple sclerosis, learn how to manage and overcome the pain and discomfort their conditions cause through the PABR® method, a holistic approach she has created to restoring the body to its full potential using its own nervous system.

Don’t miss out:

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On this episode of Living Well with MS, we are excited and honored to have as our guest OMS Chair and charity Founder Linda Bloom, whose personal story arc – going from the depths of despair after receiving her MS diagnosis to finding and realizing a path of realistic hope to healthy life through the OMS Program – mimics the experience of so many members of the OMS community. Linda shares details of her personal story, along with how her journey informed and inspired her to launch a global charity that has positively impacted the lives of many thousands of people with MS around the world.

Questions:

What it is like to be the Chair of such a unique MS charity as Overcoming MS?
Can you tell us about your personal experience with MS? How did you deal with your initial diagnosis?
At what point did you discover Overcoming MS? What were the immediate impacts you felt?
Once you kept going with the program, what were the changes you experienced longer term?
You mentioned self-hypnosis, can you tell us a little bit more about that?
What were some of the biggest challenges you faced in adopting the OMS program, and how did you manage them? What kept you motivated in sticking with the program?
Tell us about your relationship with Professor George Jelinek, and how it inspired you to found Overcoming MS the charity?
Why did you decide to found the charity in the UK as opposed to Australia or elsewhere?
What were some of the challenges in establishing and growing the charity? Did you face any resistance?
Tell us about the inspiration you get from the people you’ve met from among the OMS community.
OMS recently brought on a new CEO, Grazina Berry. How did you manage that transition in leadership after so many years working with the founding CEO?
How have the OMS team managed the transition?
What is your vision for OMS? Where would you like to see it be in 5 years?
If there are 3 key tips or pieces of advice you could share with anyone new to or considering trying the OMS program, what would they be?

Bio:

Linda Bloom is the Chair of Overcoming Multiple Sclerosis (OMS). A psychologist who specializes in counselling and hypnotherapy, Linda previously held positions at Monash University and the William Angliss Institute of TAFE in Melbourne, Australia, as well as working in private practice.

In 2002, she was diagnosed with MS following a significant relapse. After attending a retreat held by Professor Jelinek in Melbourne, Australia, she followed the OMS Program and attributes her own healing to this evidence-based approach.

In 2007, Linda moved to the UK where she recognized a gap in the provision of a lifestyle-based approach in MS management, and in 2011 began promoting the OMS approach. She established the OMS charity in June 2012.

She is passionate about empowering people with MS to take control of their own lives and hopes that the program will offer people with MS a new, but realistic way of regaining their health and improving their quality of life. Linda is married, has two children, and lives in central London.

Links:

Read more about Linda’s story and background here
Watch Linda’s Story of Hope here
If you’re looking for an inspirational read, Linda recommends The Gift by Dr. Edith Eva Eger
Linda is a big fan of The Connection, a documentary about the mind-body connection

Coming up on our next episode:

On the next episode of Living Well with MS, launching April 12, 2021, join us for Coffee Break #15, where Geoff Allix travels (virtually) to Australia to interview plant scientist and plant-based nutrition advocate Rebecca Stonor. Tune in and bring a new shade of green into your life in this lush interview.

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #14, where we are pleased to welcome Katy Deacon as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Katy, beaming to you straight from the United Kingdom.

Bio:

Katy is a Chartered Electrical Engineer, a wife and mother to two young children. She enjoyed her work project managing the installation of renewable energy systems and overseeing building energy management up until her MS symptoms appeared nine years ago. Katy still works full time, but she changed her technical focus as the inability to walk restricts the amount of scrambling around building sites that one can do.

Questions:

Katy, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Katy is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
You have experienced some mobility issues. Can you share some of your experiences in dealing with these and how you’ve learned to adapt?
How have you had to adapt your daily healthy habits to the new realities imposed by Covid-19? And has following the OMS program helped you deal with the new realities of Covid-19 times?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
If there is one piece of advice you can share with people new to the OMS program, what would that be?

Katy’s Favorite Links:

Backup Trust’s wheelchair skills app and website are excellent resources for new wheelchair users who might need some additional training and support.
Apple Watch’s activity goals are great – Katy is an achievement-focused person and the Apple Watch tracks her pushes.
Powering a manual wheelchair can be tough, so Katy has found these strengthening techniques really useful.
Katy likes the MyFitnessPal app for tracking food intake.
Katy loves this checklist for healthy eating from Veganuary.
Foothold is a UK support charity Katy is proud to be involved with.
This is a great blog entry Katy wrote for OMS in 2019.

Coming up on our next episode:

On the next episode of Living Well with MS, join us for a very special interview with Overcoming MS Chair and charity founder Linda Bloom, who discusses her own personal journey on the OMS Program and how it paved the way to the founding of a charity that has touched the lives of thousands of people with MS around the world. This moving and illuminating interview launches on March 31, 2021, so please tune in.

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Welcome to the inaugural episode of Ask Jack, featuring the prodigious culinary talents of professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Set your dials to this station when Ask Jack #2 premieres on May 12, 2021, and don’t forget to submit your questions for Jack by emailing them to podcast@overcomingms.org.

Healthiest Cookware Options

The goal of any cookware is to conduct heat evenly and efficiently while remaining chemically non-reactive. No single pan meets these goals completely. Here’s a brief breakdown on the plusses and minuses of different cookware options:

Ceramics (Earthenware, Stoneware and Glass): chemically stable and non-reactive. No impact on taste/flavors. Not good at higher temperatures. Always avoid any ceramic with lead glazing.
Enamelware: thin layer of powdered glass infused on steel or iron creates a non-reactive surface with some degree of non-sticking. Holds heat well over a long time. Not good in conditions of rapid heating or cooling. Susceptible to chipping. Particularly suited for slow cooking using lower temperatures either on the stovetop or in an oven.
Aluminum: lower cost and lightweight. Excellent heat conductivity providing fast and even heating. Anodized aluminum means they have been treated with a thin protective layer that is non-sticking. Aluminum cookware without treatments reacts to acids and alkaline foods, altering appearance and flavor.
Copper: best material in terms of conductivity. Expensive option. Most copper pans are lined with stainless steel or tin. They are not good when heated or cooled rapidly. Susceptible to rapid degradation when used in higher temperature cooking (230°C or 450°F).
Iron and Carbon Steel: good conductor of heat but can be uneven. Can also react with and discolor food. Absorbs and holds heat extremely well over longer periods. Once preheated, cooking temperatures can be reduced. Non-stick surface can be created when ‘seasoning’ the cookware. Heat unsaturated oil for several hours in a moderate oven, then cool and wipe clean. Appropriate 1-2 times per year. Avoid abrasives and dishwashers to keep surface ‘seasoned’. Use of oil in pan during seasoning process has no negative effect on food – it is OMS safe.
Stainless Steel: iron and carbon mixture. Expensive option, but also long-lasting when cared for. Decent heat conduction and non-reactive to food. Closest to meeting ultimate objective of a good pan. Always preheat pan over moderate to low temperatures before adding food or liquids. Avoid dishwashers to prolong life.
Non-Stick Pans: non-stick surfaces are created from thin layer of a chemical compound (Teflon or other modern versions). Short shelf life of less than 3 years. Not appropriate at high temperatures, which could cause toxins or warping of pans. Easily scratched. Avoid dishwashers, abrasive cleaners and abrasive utensils. Can be used for effective non-stick cooking at low temperatures. Light coating of oil in pre-heated pan enhances non-stick surface.
Green Pans: a type of non-stick pan. Thin layer of ceramic applied to surface rather than a chemical compound. Safer non-stick option than most non-stick pans, but still perform poorly at higher temperatures. Susceptible to cracking and chipping. Short shelf life.

Extra Tips: how to limit use of oil in cooking for cookware types…

Cast Iron and Carbon Steel: make sure your pan is well-seasoned at all times. Preheat the pan before adding your food. Avoid using any kind of cooking utensil that will scratch the surface. It is ok to allow food to stick briefly to the pan; just release the food with a small amount of liquid.
Ceramics: preheat the pan or pot slowly over low heat. Avoid using temperatures above medium and make sure to cool the pan or pot slowly at room temperature. Preheat before oven use.
Non-Stick pans (including new generation varieties): heat the pot or pan slowly over low heat. Never exceed medium temperatures and avoid using cooking utensils that will scratch the surface. Cool the pan slowly to preserve the non-stick surface. Avoid dishwashers.
Aluminum and Stainless Steel: preheat before adding food. Allow the food to stick to the bottom of the pan or pot and release it with 1-2 tablespoons of water or other liquid. For best results, use medium temperatures and avoid high temperature cooking. Always cool to room temperature before cleaning. Avoid dishwashers.

Benefit of Organic vs. Traditional Farming

Organic foods are the healthiest option when compared to traditionally produced fruits and vegetables. They will have lower amounts of pesticides or other harmful elements in the soil. Jack’s suggestion is to choose organic whenever there is an option, but never allow pesticide-stress to prevent eating a wide variety of fruits and vegetables regardless of how they are grown.

Using Oils to Roast Vegetables

The use of oils in cooking is a personal choice. Most recipes can be made entirely oil-free. Oils are mostly used in cooking to create flavor, texture and preserve moisture in the food. In other words, using oils usually amounts to personal satisfaction. Vegetables are normally 60-80% water. As the water evaporates from the surface of the vegetable it will begin to rapidly dry out. Coating the vegetable first in oil slows the loss of liquid and helps exterior sugars to caramelize – creating both flavor and texture.

Water and Oil in Cooking

Water alone boils at a standard temperature. Adding elements to the water, such as salt, can alter the boiling point but only by a small amount. Adding pressure to water (pressure cooker) can also alter the boiling point (maximum temperatures of a pressure cooker are 120°C (250°F). Adding oils to water slightly reduces the boiling point but the change is marginal. As long as water exists, oils cannot exceed the effective boiling point.

Getting Crispy Textures on Vegetables

Crispy textures on vegetables are created by caramelizing natural sugars/starches on the surface. Caramelization begins when sugars/starches reach a temperature of 120°C (250°F). This is also the point when all oils begin breaking down, although harmful elements are not produced until temperatures rise substantially more to 190°C (375°F) and held at this point for 10-20 minutes. Coating vegetables with a light amount of oil is considered OMS-safe because the surface moisture evaporating from the vegetables will prevent the oils from rising above 120°C (250°F). The oil coating will also speed the cooking, caramelization process and prevent too much moisture loss from the vegetable. Crispy textures can be accomplished without oil, although the vegetable will taste dry, a factor that can be overcome by coating the vegetable with a dip or vinaigrette after cooking. Adding a starch to the vegetable surface prior to cooking (corn starch, rice starch, tapioca starch) can help create a crispier surface without adding oils.

Air Fryer vs. Oven

Air-fryers are essentially miniature convection ovens. They rapidly circulate hot air in a small and enclosed area to promote rapid and even heat conduction. Air-fryers rely on temperature cooking of 180° – 190°C (350° - 375°F). The enclosed space and rapid air movement means surface temperatures of food will rise faster than in a larger convection oven – 165° vs 120°C (330° vs 250°F). Most manufacturers recommend using small amounts of oil to coat the food in order to enhance the crispy textures and prevent too much moisture loss.

Applying Thin Layer of Oil to a Pan

Certain food preparations work best when a thin layer of oil is applied to the surface of a pre-heated pan then wiped clean. Cooking thin pancakes (like crepes) is an example. When a pan is heated, metals expand and open microscopic pores (also true in non-stick pans). These pores are where food will go first and the reason something sticks to a pan. Certain pans minimize this effect with their coatings. Applying a thin layer of oil to the pan and wiping it to remove the excess fills the pores and removes the problem. This is effective when cooking thin batters. It is not necessary before each pancake or crepe, as the first one will aid in closing the pores. High heat will cause the pores to expand further and create the sticking problem faster than cooking at lower temperatures. The oils used in the coating have a minimal effect on the food’s surface and are not carried over into the food. Careful application and wiping the pan ensures this method is completely OMS compliant.

Links:

Connect with Jack: Website | Instagram | Twitter | Facebook

Jack’s podcast on fats: S2 Episode 28 Oils and OMS: Separating Fats from Fiction

Medium article: Why Some Professional Chefs Hate Nonstick Pans

Expanded article on cookware: Healthiest Cookware Options

Coming up on our next episode:

Join us on March 22 for the premiere of the next Living Well with MS Coffee Break episode, where we travel to the UK to hear Katy Deacon’s fascinating story. Learn more about interesting and inspiring OMSers like you by catching up on past Coffee Break episodes

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Mark Webb is one amazing human: he’s a writer, wheelchair rugby athlete and head of communications for Shift.ms, an amazing community of people with MS. Amidst all that still manages to find time to be a champion of all things MS, especially as it relates to diversity and inclusion. Join Geoff Allix in his fascinating interview with Mark and get one exceptional person’s “view from Shift.ms”.

We hope you continue to tune in to more episodes of Living Well with MS, our Coffee Break series a brand new limited series call Ask Jack, launching in March 2021, and featuring professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Stay tuned and watch this space as well as the OMS website and social channels for more updates.

Questions:

Welcome to the show, Mark. Can you tell our audience a little bit about yourself?
Mark, you’re affiliated with Shift.ms. Can you tell us a little about the organization?
What do you do for Shift.ms?
As a person with MS, how does it feel to have this impact on the MS community?
In terms of your MS, when were you diagnosed and how did it impact your life?
What’s your personal mission in helping the MS community?
Exercise is very important to you. I know you’re active in wheelchair rugby… can you tell us what that’s about?
How has wheelchair rugby helped you build strength and confidence?
What would your advice be for people with MS that have mobility issues about getting more active?
Since MS affects everyone differently, and some people experience more mobility issues and other symptoms than others, what’s your view on how this diversity in the MS community is treated?
How do you think we can all make the MS community more inclusive?
You’re a pretty busy guy, but you still find time for public speaking, including a TED talk. What do you present on?
2020 was a tough year for all of us. What are you most hopeful about for 2021?

Bio:

Mark Webb is a public speaker and campaigner for all things Multiple Sclerosis, disability and diversity. He is also Head of Communications for the worldwide social network for MSers, Shift.ms.

He blogs at onemanandhiscatheters.com, is writing a book slowly, and plays Wheelchair Rugby very badly.

Links:

Learn more about Shift.ms

Check out Mark’s Twitter feed

Check out Mark’s blog

Check out Mark’s Instagram

Coming up on our next episode:

Tune in on March 17, 2021 for the premiere episode of Ask Jack, our special 5-part series where every couple of months, certified OMS foodie and professional chef Jack McNulty answers cooking- and food-related questions from you, our OMS community. This is a tasty morsel you won’t want to miss. And remember, you can submit your questions for future Ask Jack episodes by emailing them to podcast@overcomingms.org.

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Welcome to our 13th installment of Living Well with MS Coffee Break, and the first Coffee Break episode for 2021, where we welcome Luke Johnson as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Luke Johnson, beaming to you straight from Western Massachusetts.

Bio:

Luke is an artist and college fitness director based in the United States in Western Massachusetts, where he also grew up. He attended university in New York City and worked for many years in wilderness therapy and immersion programs in places as diverse as Costa Rica and Nepal. Eight years ago, after returning from the West Coast of the US and completing his graduate studies, Luke developed his first signs of MS. Since then, Luke’s life has been a journey in rebuilding his health, discovering the new, and unpacking the old.

Questions:

Luke, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Luke is?
How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it?
At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
How have you had to adapt your daily healthy habits to the new realities imposed by Covid-19? And has following the OMS program helped you deal with the new realities of Covid-19 times?
On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend?
If there is one piece of advice you can share with people new to the OMS program, what would that be?

Links

Check out Luke’s amazing photography
Follow Luke on Instagram
Luke’s favorite comprehensive resource on plant-based lifestyle
A great online course on well-being from Yale University
Rhona Patrick is a scientist and she explores a lot of useful lifestyle tweaks that are beneficial to anyone pursuing better health or managing chronic conditions
Another great site for healthy lifestyle change
A podcast on plant-based eating, exercise and wellness Luke really likes

Coming up on our next episode:

On the next episode of Living Well with MS, launching March 10, 2021, help Geoff welcome Mark Webb – writer, wheelchair rugby athlete and head of communications for Shift.ms, an amazing community of people with MS. Mark will share the View from Shift.ms and talk about his role as a champion of all things MS, especially as it relates to diversity and inclusion.

Don’t miss out:

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2020 was a rough year, or perhaps that’s just the understatement of the century (and this has been a pretty eventful century, so that’s saying a lot.) I am sure many of us are breathing a sigh of relief in the early days of 2021, especially with Covid-19 vaccine rollouts gaining steam and life in some places starting to resemble a shade of normal, or at least offering the realistic hope of that soon. Many of us, though, are still struggling for perspective on the surreal year we just left behind, and even more of us are eager to understand what 2021 might bring.

To offer us some much needed guidance and perspective, and to kick off the third season of the Living Well with MS podcast, we are pleased to welcome back one of our absolute favorite guests, and one of our favorite people in general, Dr. Jonathan White. Dr. White will help us understand how Covid-19 has impacted people with MS and the challenges that still remain, vaccine rollout notwithstanding. He’ll also provide us with some useful understanding of the implications of the vaccine for people with MS, and what we can all do to maintain our health and emotional stability until it’s our time in the vaccination queue.

We hope this episode provides you with a useful roadmap to navigating the early days of a hopeful 2021, and that you continue to tune in to more episodes of Living Well with MS, our Coffee Break series a brand new limited series call Ask Jack, launching in March 2021, and featuring professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Stay tuned and watch this space as well as the OMS website and social channels for more updates.

Questions:

I’d like to start by simply asking what just happened in reference to 2020? Can you put it all in context from a personal health and wellness perspective?
What’s your take on the main ways Covid 19 has impacted the community of people with MS?
There have been some pronounced fumbles in the way the pandemic was managed in the UK and US; do you think these nations and others in the same leaky Covid boat have righted the ship, and if so, how?
What’s your take on positive changes 2021 will bring in terms of eradicating Covid 19? I guess we can start with the vaccines.
Are there any implications for people with MS getting vaccinated? Any known or associated risks?
What’s the difference between the main approved vaccines? Do you recommend people with MS try to get one over another?
From an OMS program perspective, what would you suggest people with MS can do to stay healthy while awaiting vaccination?
Are you concerned that the prolific focus of the medical community on developing a Covid vaccine has caused a radical shift in scientific research priorities, slowing progress on MS research?
Are there any positive by products in terms of MS research that have come from Covid 19-related efforts? Any findings that may point the way to progress on treating MS?
Are you concerned about a Covid-21 or Covid-22 in terms of virus mutations or new strains that may outpace the effectiveness of the vaccine?
What are you most hopeful about for 2021, personally and professionally?

Bio:

Dr. Jonathan White, a practicing medical doctor in Belfast, Northern Ireland, also works with Overcoming MS as a medical consultant and event facilitator. You can learn more about Dr. White’s professional background here.

Disclaimer:

Vaccine views on this podcast episode reflect current consensus among medical professionals but we always recommend consulting your own team about your medical care, including vaccines. OMS is committed to bringing you up to date advice on our website on this topic if such advice is updated. Please refrain from making any defamatory remarks if posting about this on our or other social channels, and please keep responses to comments on content. Information on this topic was up to date at time of recording on February 1, 2021.

Links:

Here are some great links Dr. White recommends for more information on the new batch of Covid-19 vaccines and their potential impacts on people with MS:

Link 1

Link 2

Link 3

Coming up on our next episode:

Our popular Coffee Break series returns on Monday February 22, when we travel to Western Massachusetts to chat with Luke Johnson. Tune in to learn more about the lives and experiences of your fellow OMS community members. Our next Living Well with MS episode will launch March 10, when we get the View from Shift.ms with their head of communications, Mark Webb.

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Bio:

Rachel is a highly specialized Neurological Physiotherapist with a Masters Diploma in Neurological Rehabilitation. She teaches for the Neuro Academy supporting the development of doctors and allied healthcare professionals into MS as their specialization. Rachel is also an Associate Trainer for the NHS England commissioned Bridges Self-Management Programme.

She became a Pilates instructor in 2014 and specialized in teaching the method to people living with MS in 2016. For three years, Rachel managed the Pilates Studio at an MS Centre teaching mat and large apparatus Pilates to people living with MS.

“My love of Pilates comes from the fact that I coach and empower individuals to look within, to experience movement with a sense of introspection – learning to think, feel and understand their bodies. This facilitates an understanding of what is normal, what changes, and how to accept, self-monitor and regulate the condition.”

Questions:

Can you tell us a little bit about yourself, your background, and your experience working with people with MS?
What is Pilates? Can you also touch on differences between Pilates and other Eastern practices such as Yoga, meditation, Tai Chi, etc.?
Do you need special equipment to do Pilates?
What are the benefits of Pilates for people with MS?
What are the downsides?
How can people with more progressive disability do Pilates and stay motivated? What are its benefits to them?
How can you modify Pilates for all levels of ability?
How do you choose the right Pilates instructor or class? Can you do it on your own?
Can you share a final thought with our audience on what motivates or inspires you as a human being?

Links:

Learn more about Rachel Changer

Find out about Rachel’s online Pilates classes for people with MS

Learn more about the Neuro Academy

Learn more about the Bridges Self-Management Programme

Read this blog from OMSer Sarah Johnson about her experience with Pilates

Coming up next:

Coming up next week is the start to what we hope will be a lovely holiday season for you all! From all of us at Living Well with MS, we wish you a joyous holiday season and an auspicious kickoff to 2021. We can’t be prouder to serve our listener community, and the OMS community at large, and we look forward to returning early in 2021 with a brand new third season of Living Well with MS and our Coffee Break series. Till then, stay safe, happy and healthy!

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Welcome to our 12th installment of Living Well with MS Coffee Break, and final Coffee Break episode for 2020, where we welcome Alexandra (“Alex”) Storey as our guest!

As you may know, tomorrow (December 1st) is Giving Tuesday, and Alexandra is participating in our campaign to help raise much-needed funds for the work OMS delivers to our community, so thank you to her and our gratitude to everyone else in our community, from those who choose to donate to others engaged in the campaign itself.

We hope you’ve enjoyed and learned from these intermezzos between our regular episodes, and we look forward to bringing you an exciting new assortment of Living Well with MS full-length and Coffee Break episodes when we return with Season 3 in February 2021! And as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Alex Storey lives in Essex with her husband Sam and their dog Elsa. She was diagnosed with RRMS in 2019 and has been following the OMS program since even earlier when she realized it could take a while to receive an official diagnosis. The diet element has been her favorite part of the program to adopt, and she loves how creative it has enabled her to be in the kitchen. It has also opened her eyes to how the food industry and the products we eat have changed over the last century. Alex is also a participant OMS’ 2020 Giving Tuesday campaign.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the OMS Program?
You’re quite a creative chef and active in posting on Instagram… can you share a little about your culinary pastime, what it means to you, how it’s helped, especially with MS during Covid-19?
How else have you had to adapt your daily healthy habits to the new realities imposed by Covid-19?
How has following the OMS program helped you deal with the new realities of Covid-19 times?
You’re also actively involved in supporting OMS in its Giving Tuesday campaign. Can you share with our listeners what Giving Tuesday is?
What are the reasons you’re helping drive giving to OMS for Giving Tuesday?
Do you have any other tips or tricks you can share with our audience that might help them on their own health journeys?

Links

Check out Alex’s Instagram feed

View Alex’s Giving Tuesday video

Coming up on our next episode:

On the final episode of Living Well with MS for 2020, landing on your favorite podcast platform on December 16, 2020, Geoff Allix welcomes Rachel Changer, who will literally help you change your body’s flexibility and stretch your way into a healthy 2021 with a special episode on how Pilates can help all people with MS build strength and resilience. Join us again in February 2021 when we launch a brand-new season of Living Well with MS and our special Coffee Break series. Until then, happy holidays, and stay safe healthy and positive!

Don’t miss out:

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Bio:

Questions:

Can you please tell us a bit about yourself, where you’re from, what you do, family, etc.
Let’s understand a little bit about your MS journey – when were you diagnosed and how did you initially handle it?
When did you discover OMS and why did you decide to follow the program?
You’re a member of the OMS community with PPMS – can you shed some light on what PPMS is and what life is like with that specific type of MS?
How does the OMS program fit into the realities of someone with PPMS?
What are the biggest obstacles to someone with PPMS adopting the program?
How do you personally suggest dealing with these obstacles?
In your own experience with both PPMS and OMS, how do you measure progress?
If you could articulate one specific outcome that five ago, looking forward, you can say you really wanted to achieve and which you’ve now really nailed through adopting OMS, what would that be and why?
As someone with PPMS, what can you share with others that have PPMS that motivates or inspires you?

Links:

Follow Helen on Instagram

Learn more about Feldenkrais in the UK and globally

Coming up next:

On our final Coffee Break installment for 2020, travel to the UK to meet Alexandra Storey and hear how she’s helping do her part to ensure OMS has a successful outing on Giving Tuesday, all on Living Well with MS Coffee Break #12, which premieres on Monday, November 30, just one day before Giving Tuesday. And to our friends and community members in North America, Happy Thanksgiving!

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Welcome to our 11th installment of Living Well with MS Coffee Break, where we welcome fellow podcast host and producer Bron Webster as our guest!

As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Bron Webster is many things – blogger, podcast creator/host, entrepreneur – but above all, she is committed. Bron is an expert in MS patient advocacy who works with a leading university in the UK and their neurology medical students, so she's used to representing the MS community with a ‘no agenda’ approach. Bron was diagnosed with MS in 1996 and is still mobile (though much slower these days). She also has 3 members of her family living with MS (1 blood-relative and 2 in-law relatives). She also had a brush with cancer (salivary gland, very rare) in 2014, so it’s fair for her to say this: “I’m a survivor!” Bron is the creator, host and producer of a new podcast about MS, The MS Show.

Questions:

Can you tell us a little about yourself and your personal experience with MS?
You’ve recently launched a new MS podcast called The MS Show. Tell us a bit about that and your motivation for becoming a podcaster?
How did your personal experience with MS inform the work you do on the podcast and in the broader MS community?
What other projects or ventures are you involved in that have some impact on people with MS?
If there is one lesson your experience with MS has taught you that you’d like to impart to others, what would that be?
Finally, what advice would you give to people with MS on how to cope with some of the new realities in this post-Covid world?

Links:

Bron’s podcast, The MS Show

Bron’s website, Multiple Success

Bron’s Facebook group

Coming up on our next episode:

On our second-to-last full-length episode of Living Well with MS, launching in just 10 days on November 11, 2020, Geoff Allix is proud to welcome Helen Rees Leahy, a former university professor from North Wales, who discusses her journey with PPMS and how it intertwines with the OMS approach. Join us for this fascinating, first-person exploration of what it’s like to have a rarer form of MS and still tap into the benefits of the OMS program.

Don’t miss out:

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Bio:

Erika started her career in the music industry at the tender age of 16, working for a PR company who represented The Rolling Stones, U2, Prince, The Spice Girls and many more. One of her earliest highlights was when Cher sent her flowers by Cher to thank her for finding her favorite brand of mineral water when she ran out of it in the middle of the night!

She fell into the world of radio by complete accident in the mid-90s, co-hosting a show on London's Heart 106.2, a job she performed happily for 14 years. Since then, she has presented national breakfast shows, broadcast from the top of Sydney Harbor Bridge during the 2000 Olympics opening ceremony and can now be heard on the airwaves of BBC Radio Kent.

Erika was diagnosed with MS in 2008 and is now happy to put a spotlight on the trials and tribulations her condition bring, with a trademark sense of humor her listeners will be very familiar with!

Discussion Topics:

Erika’s life and MS journey
How an MS diagnosis affects someone in a public-facing role
How the public impression of MS is changing
How Erika has adapted her lifestyle tothe OMS program
How OMS is a healthy lifestyle for all
How COVID-19 has affected Erika’s healthy habits

Links:

Erika's Twitter Feed

Coming up next:

Coming up next on Living Well with MS Coffee Break #11, premiering Monday, November 2, travel to the UK to meet Bron Webster, creator, producer and host of the new podcast, The MS Show.

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Happy 10th anniversary and welcome to our tenth installment of Living Well with MS Coffee Break, where we welcome Roy Bartlett as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Although diagnosed with multiple sclerosis in 1988, Roy doesn’t let anything much slow him down. He is no stranger to working in charitable organizations and was the founding president of the Eastern Bay of Plenty Asthma Society at the beginning of the 1980s. From 1986 to the end of 2004 he worked for four different charities, including Alzheimer’s Auckland (1989-99). Professor Sir Richard Faull, Director of the Centre for Brain Research and Patron of Alzheimer’s Auckland, describes Roy as “significantly changing the landscape of caring for people with dementia during the 1990s”. In 2002 Roy and his wife Julie co-founded the award-winning charity StarJam, whose mission was to be the leading and most innovative catalyst for facilitating a positive societal change in attitude toward people with disabilities. Together they set about creating national and international performance and limelight opportunities for young people with disabilities. StarJam continues today to help provide disabled children with a chance to build their confidence, develop their character, discover new friendships and enjoy the thrill of new hope and purpose, the benefits of which are also felt by their family, friends and the wider community. Currently, Roy is an Ambassador for the Auckland OMS Circle. He is also a foundation trustee of the The Sources of Unconditional Love Charitable Trust (SOUL), founded by his wife Julie in 2015. SOUL’s mission is to replace prejudice and discrimination with unconditional love and respect. Its position is an exclusively positive one aiming to empower teenage girls and young women to be free from the effects of prejudice and to inspire those who discriminate to instead choose unconditional love and respect.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share.
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
I know you’re quite active in the OMS community, and the ambassador of the Auckland Circle in New Zealand. Can you tell us how being a part of the community has informed your journey?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching in just one week on October 21, 2020, Geoff Allix welcomes Erika North, a veteran voice on UK radio and current a presenter for BBC Radio Kent, to discuss her personal OMS journey. Please have a listen to hear Erika’s unique and mellifluous perspective!

Don’t miss out:

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Bio:

Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. Throughout his life and career, he’s explored different food cultures, grown his own vegetables and fruit and ate a lot of meat and fish along the way. He’s been a vegetarian, carnivore, omnivore and fish-eating vegan before landing on his current lifestyle as a vegan.

Jack has worked for some talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy and France. He’s operated his own catering business and cooking school, while finding enough time to write about cooking. Jack is currently operating his own subscription-based website providing instruction and recipes supporting a vegan life.

Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website and was the contributing editor to the OMS cookbook.

Questions:

Are all oils bad, or are there some beneficial and healthy ones?
Is it OK to heat oils when cooking?
What happens to oils when they are heated? Does it change their properties for the worst?
Do all oils have a similar heat point where their properties change?
Is it true that you should never bake higher than 180°C (350°F) if you are using oil?
There are many recipes that call for fried veggies, such as onions. How do you substitute this with a healthier alternative?
Why can’t I cook with flaxseed oil?
If I cook Mediterranean food without olive oil it doesn’t taste the same. Is there anything I can do?
Olive oil doesn’t have the right flavor for all recipes. Are there other oils that I can use, such as rapeseed oil or hemp oil, to capture that flavor?
What can I use instead of butter for baking?

Links:

You can discover more about Jack or do some impressive window-shopping on his website. The recipes require a subscription, but the rest of the content is free!
Here’s a free travel guide listing OMS-friendly places to eat worldwide.
A great place to window shop for inspiration and work up an appetite is Jack’s Instagram
Follow Jack on Facebook.

Coming up next:

Coming up next, we pop down to the Southern Hemisphere to land in Auckland, New Zealand and meet Roy Bartlett, an OMS Ambassador with a life-changing story. Hear his story on Living Well with MS Coffee Break #10, which premieres on Monday, October 12.

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Welcome to our ninth installment of Living Well with MS Coffee Break, where we welcome Rowan Baker as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Rowan is a UK-based nurse who has been following the OMS Recovery Program for nearly two years. She enjoys yoga and running, crafting and cooking up OMS feasts. She’s currently training towards a half marathon, on the back of a long-distance walk for an MS charity last year. She has written a number of blogs for OMS and her cooking inspiration can be found on Instagram.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
I know you’re quite active in the OMS community, and a frequent blogger. Can you tell us how being a part of the community has informed your journey?
You also work for the NHS. Can you share a perspective on how that interconnects with your MS and experiences with OMS?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Links:

Check out Rowan’s blogs on the OMS website

Rowan’s Instagram feed

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching September 30, 2020, Geoff Allix is joined by OMS culinary favorite Jack McNulty to demystify the questions of oils – separating fact from fiction – in this important conversation for anyone confused about the benefits and drawbacks of which oils to use in your OMS-friendly kitchen.

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Bio:

Trevor Wicken is the founder of The MS Gym, the largest and most comprehensive platform for movement and mindset training for those living with MS and other neurological conditions. Since its inception, it has transformed the lives of thousands of people throughout the world. To read more about The MS Gym and Trevor’s story, please click here.

Questions:

What is The MS Gym?
Can you tell us a little bit about yourself, where you’re from, and the journey that brought you to launching The MS Gym?
How is your fitness philosophy particularly tailored to people with MS?
What’s so important about exercise for people with MS and other neurological conditions?
How is your approach different from the type of support a person with MS might get from a PT or personal trainer?
What are the biggest obstacles to getting people – with or without MS – to adopt a regular exercise regimen?
How do you personally suggest overcoming these obstacles?
For the people you serve under The MS Gym umbrella, how do you measure their success or progress?
If you could articulate one specific outcome that five years from now, looking back, you can say you really nailed in your work through The MS Gym, what would that be and why?
In trying to better understand the person behind The MS Gym, what motivates or inspires you as a human being?

Links:

The MS Gym

MS Gym Free Exercise Guides

MS Gym Link Tree

About Trevor Wicken

Coming up next:

Coming up next, we land back in the UK and meet Rowan Baker, a Registered Nurse who also frequently blogs for OMS about her journey. Hear her story on Living Well with MS Coffee Break #9, which launches on Monday, September 21.

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #8, where we turn the tables and welcome Geoff Allix as our guest!

Bio:

To read Geoff’s bio, please click here.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
What’s it like to be the host of Living Well with MS and engage with so many diverse members of the OMS and broader MS communities?
Apart from hosting Living Well with MS, I know you’re quite active in the OMS community in your role as Ambassador for the OMS Circle in North Devon. Can you tell us about how that experience has informed your journey?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any closing thoughts to encourage and inspire our audience?

Links:

Geoff Allix's Twitter Feed

Living Well with MS

OMS Circles

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up next:

On the next full-length episode of Living Well with MS, launching September 9, 2020, Geoff Allix welcomes Trevor Wicken, founder of The MS Gym, to the podcast. If you’d like to get to know how to juice up your exercise routine straight from a master like Trevor, please tune in!

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Bio:

Grazina Berry joined Overcoming MS in July 2020 as CEO. She has had an extensive career, as a senior and board executive, in the public and not-for-profit sectors.

She was previously CEO of The Aplastic Anaemia Trust (dedicated to research and support for those living with rare bone marrow failures) and held leadership roles at the Richmond Fellowship, a mental health and substance use services provider in the UK.

Grazina is passionate, driven and committed to making a positive difference to the lives of all communities and helping OMS achieve its goal to reach everyone diagnosed with MS around the world. She is looking forward to leading OMS, through organizational strategy, using data and digital technology and crucially via close collaboration with people who live with MS, their support networks, the medical community and experts in the MS field. A powerful motivating force behind Grazina’s drive to raise the profile of our charity is a close family member who lives with MS. Grazina lives in Cambridgeshire, in England, and speaks Lithuanian, English, German and Russian.

Questions:

Can you tell our audience and the OMS community a bit about yourself personally so we can get to know the person behind the new chief executive of the OMS charity?
You’ve held senior leadership roles at other charities, most recently as CEO of the Aplastic Anaemia Trust. What attracted you to OMS?
What’s your personal philosophy on the place a charity like OMS should have in the communities it serves?
What do you think OMS offers to people with MS?
What do you see as the most crucial influencing factors in continuing the important work the charity does but also charting a new direction for the future?
What opportunities would you like to embrace and explore in your early tenure at OMS?
What are some of the challenges of running a global charity and how do you personally handle them?
If you were to look ahead, where would you like to see OMS in a few years’ time?
Is there a massive difference in running a charity that’s in the MS space versus some of the varying focal areas of your earlier work?
What are you most excited about in your new role as OMS’ CEO?
And finally, on a totally different note, can you share something from your life that happened to you that left you thinking, “oh wow, we live in an amazing world”?

Links:

About Grazina Berry

About The Aplastic Anaemia Trust

About Overcoming MS

Coming up next:

Coming up next, join Geoff Allix as he interviews fellow podcaster Bron Webster, producer and host of The MS Show, on Living Well with MS Coffee Break #8, which launches on Monday, August 31.

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Welcome to Living Well with MS Coffee Break #7, where we welcome Trishna Bharadia as our guest!

Bio:

Trishna Bharadia is multi-award-winning patient advocate and a well-known face in the MS world. Diagnosed at the age of 28 in 2008, she has since worked hard to ensure that the voices of people with MS are heard throughout the healthcare journey. She is an Ambassador/Patron for several local, national and international charities. In 2015 she was chosen as one of six people out of over 11,000 nominations to take part in a special four-part series of Strictly Come Dancing on BBC1. "The People's Strictly for Comic Relief" broadcast Trishna's MS story to millions of people in the UK and beyond, highlighting many of the hidden symptoms of the condition. She has won multiple awards for her work, including being recognized by the UK Prime Minister's Office with a Points of Light Award in 2018. In her spare time, she loves keeping active and regularly attends inclusive dance and Zumba classes.

Questions:

Can you tell us a little about yourself and your personal experience with MS?
Tell us about your work as a health advocate and patient engagement consultant. What do these entail?
How did your personal backstory influence your career trajectory?
There is a diversity angle in your work; do you feel there is an inclusivity gap in available health services for people with MS?
As an expert on the MS patient experience, what do you feel are the key issues to focus in order to broaden the sense of MS community and support?
Finally, on a lighter note, you were featured on the BBC’s “Strictly Come Dancing”. For the benefit of our global audience, can you tell us a bit about that show and your experience on it.
As someone with MS, did appearing on “Strictly Come Dancing” represent some sort of milestone?

Links:

Facebook

Twitter

Instagram

YouTube

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up next:

On the next full-length episode of Living Well with MS, launching August 19, 2020, Geoff Allix welcomes Grazina Berry, new Chief Executive Officer of the Overcoming MS charity, to the podcast. If you’d like to get to new Grazina and her vision for OMS, this is an episode not to be missed!

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Living Well with MS is proud to welcome back Dr. Brandon Beaber to the guest seat. Dr. Beaber will offer a neurologist’s point of view on the OMS program, and how to achieve better health through lifestyle intervention approaches.

Questions:

What’s your specific clinical philosophy as a neurologist for treating patients with MS?
From your perspective as a neurologist, how important is lifestyle modification in managing your MS?
Can you walk us through your thoughts on the main pillars of the OMS approach?
- Diet?
- Exercise?
- Stress reduction?
- Vitamin D / Omega 3?
- Medication?
Is there anything critical you think the OMS program leaves out?
Are there any downside risks to following a diet and lifestyle modification program like OMS?
The MS research space is evolving rapidly. What, in your opinion, are the most promising areas on the horizon that we should be monitoring most closely?

Bio:

Dr. Brandon Beaber is a board-certified neurologist with a subspecialty in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on Twitter where he regularly posts about MS news and research.

Links:

Resilience in the Face of Multiple Sclerosis (Dr. Beaber’s book)

Dr. Brandon Beaber Medical Profile

Dr. Beaber’s YouTube Review of Prof. Jelinek’s Book, Overcoming Multiple Sclerosis

Coming up next:

Coming up next, we are pleased to welcome MS advocate and patient engagement consultant Trishna Bharadia on Living Well with MS Coffee Break #7, which launches on Monday, August 10. (Fun fact: Trishna has appeared on the BBC’s Strictly Come Dancing!)

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Welcome to our sixth installment of Living Well with MS Coffee Break, where we welcome Johanna Lahr as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

My name is Johanna Lahr, I live in Berlin, I am married, and I have a daughter. I work as a Senior Product Data Manager in a company in the medical field. I have been living with MS since 2008, with MS being one in a long string of autoimmune diseases. I have been following the OMS program for about 9 years. Today, I look back and even though my journey was very bumpy and at times seemed to be hopeless, I am grateful for the hope the OMS program has given me. It gave me not only the strength and confidence to believe that things could get better even though nobody around me believed it, but more importantly, the OMS program has given me all the tools I need to succeed, not just with MS but with all the other autoimmune conditions I’m contending.

I am actively engaged in several support initiatives. For almost 7 years, I’ve been involved with Overcoming MS Lifestyle Support, a Facebook group dedicated to supporting people with MS following the OMS program. In 2018, I created the first OMS Circle in my city and at work, together with another colleague, I created an employee-driven initiative that strives to build an inclusive workplace and enable access and career opportunities for people with disabilities. These groups not only became a way for me to help others, they have given me the opportunity to meet the most amazing and inspiring people I know.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
I know you’re quite active in the OMS community, such as your role as Ambassador for the OMS Circle in Berlin. Can you tell us about how that experience has informed your journey?
You also run a dynamic support community on Facebook which has over 4,000 members. Can you tell us a little more about that, and the impact you feel this group has had in helping people with MS in Germany?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Links:

Overcoming MS Lifestyle Support

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching August 5, 2020, Geoff Allix welcomes back to the podcast guest seat neurologist Dr. Brandon Beaber to get his medical point of view on the benefits of the OMS Recovery Program. If you’d like to understand the medical science behind OMS, this is an episode not to be missed!

Don’t miss out:

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Bio:

Alison teaches Instinctive Meditation, which is natural, healing and life-affirming. Alison is a meditation coach, wellbeing mentor, meditation teacher-trainer writer and teacher in self-care, meditation and wellness. Originally from Great Britain, she now lives in Brisbane, Australia with her husband and daughter. Her work is dedicated to teaching practices for greater self-connection, self-worth and thriving, including yoga, meditation and personal coaching. She runs sessions, workshops and retreats in Australia and overseas and in schools and workplaces. Her guided meditations on Soundcloud and Insight Timer have been listened to over a quarter of a million times. She has trained intensively with Lorin Roche PhD – an author, meditation expert and the leading developer of instinctive meditation in the West – and has a 200 Hour Yoga Alliance certification with Pranava Meditation Teacher-Training. Largely due to her own healing journey with MS, she is passionate about teaching the power of cherishing our individuality and intuition, sharing practices to connection to our innate states of freedom, healing, creativity, spontaneity and joy.

Questions:

Tell us about yourself and your experience having MS and following the OMS program.
What is your relationship to meditation? What’s Innate Being?
How has your experience with meditation had an impact on your quality of life with MS?
What are the main obstacles you find people face in getting into a regular meditation practice?
Why are so many people “intimidated” by meditation?
Tell us about your top hacks for getting into the meditation groove and making it a healthy habit:
- Making it personal
- Finding your natural spontaneous meditation moments
- Creating a sanctuary for the self
- Letting your body have the experience
- Giving your busy mind permission to drift and dream
- Taking your time
Alison conducts a mini guided meditation (5m)
Any final words of wisdom or thoughts on embracing a meditation practice?

Links:

Check out Alison’s website, Innate Being

Check out Alison’s Facebook page

Check out Alison’s Instagram

The View from Here: Life Lessons After 24 Years With MS

Coming up next:

Coming up next, travel to Berlin to join OMSer Johanna Lahr to hear her story on Living Well with MS Coffee Break #6, which launches on Monday, July 20.

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Welcome to our fifth installment of Living Well with MS Coffee Break, where straight from Cornwall (UK) we welcome Sean Kressinger as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

I’m Sean Kressinger and I live in Cornwall, England. I was diagnosed with RRMS 5 years ago though I may well have had it for 25 years. It’s rather prolific in my family, with an aunt, sister and many cousins having it, so the diagnosis wasn’t a complete shock.

I spent the early part of my career as an RSPCA Inspector (animal welfare) in Lincolnshire and Derbyshire, which was enjoyable at times but highly stressful. This is when my first symptoms appeared but were largely ignored. For relaxation I started to paint portraits and do carpentry projects which eventually gave me a reason to leave my stressful job behind and move to Cornwall. I became self-employed, as a gardener at first, painting portraits whenever possible and eventually re-training as a carpenter specializing in furniture. I’m still a carpenter, working around 2/3 full time, though the ability to paint seems to have vanished!

I jumped at the OMS program as soon as I read about it. It seemed logical, evidence-based, extremely well-researched and wasn’t trying to sell me anything! I was already a vegetarian on the whole, so the dietary aspect wasn’t going to be a huge leap, plus I knew I needed to exercise more, and I had an interest in mindfulness/meditation although I hadn’t tried it. It all made sense to me and it was a huge relief that I could help myself with the condition rather than rely purely on the drugs offered.

At the time, OMS was looking for local Ambassadors to form regional Circles and I applied without hesitation. I became the OMS Ambassador for Cornwall and recently the other ambassadors and circle members of Devon and Cornwall joined forces to alleviate any isolation issues amid the Covid-19 lockdown. For me, the OMS Recovery Program is for life now. I’ve been on it long enough to feel the benefits and I’ll continue to promote it whenever I can.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
Can you tell us a bit about the video “Fighting Multiple Sclerosis” that your daughter Holly made?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Links:

Fighting Multiple Sclerosis video

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching July 8, 2020, Geoff Allix digs into the Top Hacks for Getting into a Meditation Habit with meditation coach and wellbeing mentor Alison Potts. And keep an eye out for Coffee Break #6 with Johanna Lahr, coming to you straight from Berlin, Germany on July 20, 2020.

Don’t miss out:

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Bio:

Vickie serves as an OMS Ambassador in Connecticut. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2011. She lives well with her MS by following the OMS program and encourages others to do the same through her OMS Circle.

Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees, as well as cooking for and hosting her family and friends. She is deeply committed to helping others: her family, community, clients and her OMS Circle members.

You can see more of Vickie on her YouTube channel, where she shares her thoughts on living well with chronic illness.

Questions:

Please tell our audience a bit about yourself and your MS journey.
When did you discover OMS, and what was it like in the early days trying to follow the recovery program?
How important a role did your local “community” play, such as your family and close friends, in helping you adopt the OMS recovery program and make progress on your MS journey in general?
What were some of the challenges that having a strong support community helped you overcome?
What is an OMS Circle and when did you become an OMS Circle Ambassador?
Can you tell us a bit about your process in deciding to undertake this community-building role?
Can you tell us a little about the OMS Circle you represent?
How would you describe the role of an OMS Circle, and specifically your OMS Circle in Connecticut, in helping people new to OMS successfully adapt to the realities of diet and lifestyle changes?
How can a sense of community play an important role for people, like yourself, who have lots of experience following the OMS recovery program? Do they need this as much as the newbies might?
Are there any anecdotes you can relay that convey the impact you feel you’re making in your corner of the OMS community?

Links:

Vickie’s YouTube Channel

Learn more about OMS Circles

Coming up next:

Coming up next, treat yourself to some insight from fellow OMSer Sean Kressinger on Living Well with MS Coffee Break #5, which launches on Monday, June 29, beaming to you straight from the UK.

Don’t miss out:

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Welcome to our fourth installment of Living Well with MS Coffee Break, where we welcome Natalie Cooper as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Natalie currently lives in Los Gallardos, Spain with her parents, which at 41 is a little embarrassing (by her own admission). If the world had not been locked down, she would be enjoying the scenery somewhere else in Spain or Portugal or one of the Balearic Islands, in her campervan with her dog.

A few months before her diagnosis, Natalie had decided to sell her house and move to Spain and work online selling travel holidays. A few months after that she woke up one morning with blurred vision and was eventually diagnosed with MS. She was told by many to wait and start medication, so she put everything on hold and did so. That was a really depressing time for her, with everything seeming to go wrong, all her plans cancelled. How could she travel if she needed medications, blood tests, etc., so it seemed like it would never happen. Then she came across the OMS book and started the program, and after a few months, she was feeling really good and much more positive. So, she stopped her Copaxone treatment and put her travel plans back on track.

Fast forward to last year: Natalie started a 6-month hiatus from her career to hit the road in her motorhome with her dog Mylo. She saw amazing places and met lovely people. That's when she started her Facebook page, which was a diary of her travels. It started as something quite personal and grew into a project she began sharing with friends and the wider MS community. In July 2019, while back in the UK, she caught the travel bug again and took the leap of leaving her job of nearly 9 years to come back to Spain in December. She didn't have any specific plans but was excited about the idea of setting up OMS-friendly holidays. Then COVID-19 arrived and the entire world shut down. But Natalie is not deterred. She will try to relaunch her vision in 2021 and strike a balance between working half the year and hitting the road with Mylo for the other half. If Natalie has learned anything on her journey, it’s to remain flexible, positive and open to all the possibilities in life.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Links:

Me, My Dog, a Motorhome and a Midlife Crisis

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching June 17, 2020, join Geoff Allix as he explores Building Community through OMS Circles with Vickie Hadge, Ambassador of the OMS Circle (aka community support group) in Connecticut. Vickie is deeply committed to helping others – her family, community, clients and her OMS Circle members – and her enthusiasm is contagious!

Don’t miss out:

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Bio:

Caroline Clarke was appointed group chief executive of the Royal Free London NHS Foundation Trust in February 2019, following her role as deputy chief executive over the past seven years.

Caroline was the trust’s chief finance officer between 2011 and 2018 and in 2012 she was made the finance director of the year by the Healthcare Financial Management Association. She was formerly director of strategy at NHS North Central London. Prior to that she was an associate partner in KPMG's health strategy team.

She has spent most of her career in NHS finance, having been director of finance at the Homerton University Hospital NHS Foundation Trust and City and Hackney Primary Care Trust.

Caroline is a trustee of Overcoming MS and the 2020 President of the Healthcare Financial Management Association (HFMA), the representative body for finance staff in healthcare.

Links:

About Caroline Clarke

About Royal Free London NHS Foundation Trust

Coming up next:

Coming up next, treat yourself to a morsel of insight from the OMS community on Living Well with MS Coffee Break #4, which launches on Monday, June 8.

On the next full-length episode of Living Well with MS, launching June 17, 2020, we have the pleasure of welcoming Vickie Hadge, who serves as Ambassador for the OMS Circle in Connecticut. Vickie will tell us all about the importance of building community and the role it plays in helping people with MS find answers, support and hope.

Don’t miss out:

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Welcome to Living Well with MS Coffee Break #3, where we travel to the San Francisco Bay Area to welcome Sarah T as our guest!

We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Sarah lives in the San Francisco Bay Area with her husband and two young children. She has spent 15 years consulting in pharmaceutical and academic health outcomes research, and she is most recently a Director of Research at a health technology company. When she was first diagnosed with MS, she was devastated. She immediately dove into the research on MS, and Dr. Roy Swank’s findings gave her much hope. Sarah adopted the Swank diet along with starting a disease modifying medication. She discovered George Jelinek’s book and OMS in late 2012 and has appreciated its evidence-based and holistic approach to managing the disease. She is currently sheltering in place with her family, and, like many other parents across the world, she is appreciating teachers like never before.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Links:

OMS COVID-19 main resource page

Excellent COVID-19 resource page from Dr. Gavin Giovannoni

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching May 27, 2020, we have the honor of welcoming Caroline Clarke, Chief Executive of the Royal Free London NHS Foundation Trust, to hear both her personal and professional insights on Overcoming MS.

Don’t miss out:

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Bio:

Kim Venter is a British South African currently living in London who was diagnosed with MS in 2010. Kim is a trained teacher, professional psychological counsellor and nutritional consultant who thoroughly enjoys working with people and helping them overcome various challenges in their lives. Kim is particularly interested in Health Psychology, which is to say exploring the impact on the mind of what is going in the body. She feels that this training has increased her awareness of the psychological impact MS has and how the food we eat affects the health of our minds. Kim’s website offers a huge amount of resources as well as a course covering diet, exercise and mindfulness.

Questions:

What is the microbiome and why is it so important?
The gut-immune system connection – how does what we eat affect our immune system?
What is Leaky Gut Syndrome and how it can give rise to symptoms?
The gut brain axis – isn’t there a blood-brain barrier that stops foreign substances from injuring the brain?
How do you keep the gut healthy with probiotics and prebiotics (food for the good bacteria)?
Is it best to take prebiotic and probiotic tablets, or can we use certain foods to the same effect?
How does gut health or lack thereof impact MS?

Links:

FODMAP Food Database App

About Kim Venter

Coming up next:

Coming up next, treat yourself to a morsel of insight from the OMS community on Living Well with MS Coffee Break #3, which launches on Monday, May 11.

Don’t miss out:

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Welcome to our second installment of Living Well with MS Coffee Break, where we welcome Vicky Argyle as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Bio:

Vicky originally worked as a music publisher in London before moving to Scotland in the late 1980s and retraining as a massage and reflexology therapist and teacher of Aura-Soma. 15 years later, she moved back to England where she ran a Soil Association Organic Box Scheme in Herefordshire before going on to work in the Renewable Energy Industry. Vicky was diagnosed with MS in 2013, and now works part-time for her partner, a farmer in South Somerset. Finally, she has a chance to put some focus into her true passion, writing.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Links:

OMS COVID-19 main resource page

Excellent COVID-19 resource page from Dr. Gavin Giovannoni

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full-length episode of Living Well with MS, launching May 6, 2020, Geoff Allix gets a “macro” view on a critically important “micro” topic, Gut Health: Your Microbiome and You, from Kim Venter, a trained teacher, professional psychological counsellor and nutritional consultant, who helps us understand the connection between gut health and the immune system.

Don’t miss out:

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Bio:

Mari L. McCarthy is an award-winning and international bestselling author whose books Journaling Power: How to Create the Happy, Healthy Life You Want to Live and Heal Yourself with Journaling Power have introduced people around the world to the power journaling has to help heal the body. After losing feeling and function in the right side of her body in 1998, Mari was diagnosed with MS. Undaunted, she took up a daily journaling practice which over time helped improve her MS symptoms to the extent that she is now an accomplished recording artist with three full-length albums. Mari’s website, CreateWriteNow.com, is the platform she runs to share her methods, expertise and passion for journaling.

Questions:

Can you please share with our audience a bit about your own personal story, and your journey since being diagnosed with MS?
What are the key benefits of keeping a journal?
Is there any link between journaling and healing?
Do you think there’s a connection between your journaling and your music?
Can keeping a journal actually improve our health?
What are your best tips for someone who has never journaled to start journaling?
Is it important to journal using pen and paper, or would a journaling app work just as well?

Links:

CreateWriteNow

About Mari McCarthy

CreateWriteNow Facebook

CreateWriteNow Twitter

CreateWriteNow YouTube

Coming up on our next episode:

Coming up next, treat yourself to a morsel of insight from OMS community member Vicky Argyle on Living Well with MS Coffee Break #2, which launches on Monday, April 20.

Don’t miss out:

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Welcome to our first Living Well with MS Coffee Break episode! We decided to do something a little different in expanding the range of content we produce here at Living Well with MS. Since our community forms the beating heart of Overcoming MS, we are commencing this special series called Coffee Break, which features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Recovery Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.

Questions:

Can you tell us a little about yourself, your family, your life, where you live and anything about yourself you’d like to share?
When were you diagnosed with MS and how long have you been following the Overcoming MS 7 Step Recovery Program?
What is your favorite thing about the program, namely what do you feel has made the biggest positive impact?
What was your greatest challenge in adopting the OMS program, and how did you overcome it?
How have you had to adapt your daily healthy habits to the new realities imposed by COVID-19?
Do you have any other tips or tricks you can share with our audience that might help them on their journeys?

Bio:

Maisie lives in the Cotswolds of England where she settled in 2018 after travelling the world and being constantly on the move with the British Army. She has two grown children. In 2016, while training for the Berlin marathon, she noticed numbness in her feet, initially thinking it was due to the stress of marathon prep. The numbness continued to spread and caused her difficulty in walking. Running was out of the question. Six months later, after medical referrals and testing, she was diagnosed with MS. Since then, Maisie has left the Army, discovered OMS and is just about to finish an MSc in Nutritional Therapy. She is back to running and last year completed the London and Snowdonia marathons and took part in the Thames Path Challenge for OMS. She is currently cocooned in the Cotswolds due to COVID-19 and the immune suppressing drugs she is taking for her MS.

Links:

OMS COVID-19 main resource page

Excellent COVID-19 resource page from Dr. Gavin Giovannoni

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next full episode of Living Well with MS, launching April 15, 2020, Geoff Allix explores the power journaling has to help heal the body with Mari L. McCarthy, an award-winning and international bestselling author of books such as Journaling Power: How to Create the Happy, Healthy Life You Want to Live and Heal Yourself with Journaling Power. The power of Mari’s own story and the impact she has had on people all over the world will open your eyes.

Don’t miss out:

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Whether one has MS or not, the world is going through an unprecedented and difficult time. So, we have created this special episode of Living Well with MS, featuring Dr. Jonathan White, to better understand the coronavirus, or COVID-19, pandemic and how it affects people with MS. Please be aware that knowledge of this virus is changing rapidly, and we are presenting the best information that we have at time of recording, but you should check for updates regularly, with your healthcare professionals and from credible sources on the Web, including the links below in the show notes, to ensure that you have the latest advice. And remember, stay safe, healthy and sane while we work our way through this chapter in history.

Questions:

What is Coronavirus/COVID-19?
What are the early signs that might indicate you’ve contracted it?
What are the key steps you should take if you think you have COVID-19?
Is it especially dangerous if you have a condition like MS? Why?
We have been hearing a lot about social distancing and self-isolation. Is this especially important for people with MS?
What’s the difference between self-isolation and social distancing and what are your recommendations for implementation?
Do DMTs affect COVID-19? What happens in these scenarios?
- Likely low-risk DMTs
- Likely medium-risk DMTs
- Likely high-risk DMTs
- HSCT (Hematopoietic Stem Cell Transplantation)
- What if I’ve just had a round of treatment… which extra precautions should I take?
- Possible positive effects of DMTs
How do you keep a sound mind and maintain a healthy exercise regimen at a time when things seem so bleak and the world is grinding to a halt?
Should I attend hospital visits?
I know that in the OMS book, George says not to take multi vitamins. Does this advice still stand during the pandemic if people are struggling to get enough nutrients from food as they either can’t get to a shop or there is very little food in the shops?

Bio:

Links:

OMS COVID-19 main resource page

Excellent COVID-19 resource page from Dr. Gavin Giovannoni

A video on COVID-19 from neurologist Dr. Brandon Beaber

A video on COVID-19 from neurologist Dr. Aaron Boster

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Coming up on our next episode:

On the next episode of Living Well with MS, launching April 15, 2020, Geoff Allix explores the power journaling has to help heal the body with Mari L. McCarthy, an award-winning and international bestselling author of books such as Journaling Power: How to Create the Happy, Healthy Life You Want to Live and Heal Yourself with Journaling Power. The power of Mari’s own story and the impact she has had on people all over the world will open your eyes.

Don’t miss out:

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We all know that exercise is a key component of healthy living, and particularly important too if you have MS, which is why it plays such a prominent role as one of the steps of the OMS 7 Step Recovery Program. But did you know that when you’re exercising your body, you’re working out your nervous system as well? Our guest on this episode of Living Well with MS, Dr. Gretchen Hawley, will explain neuroplasticity (for us lay people, that’s the brain’s ability to continually change, a sign of brain health) and how exercise can impact it, as well as share her insights on helping people with MS improve their strength, balance and mobility.

Bio:

Questions:

How is MS physical therapy different from orthopedic/"regular" physical therapy?
What are some of the pitfalls for someone with MS who doesn’t get specialized PT?
What is neuroplasticity and how does it work?
What are some tips to manage fatigue when exercising, and how can exercise help with fatigue?
How do you handle goal setting with your PT?
Tell us about your program, MSing Link?
How is it designed to help people with MS who don’t have access to a PT who specializes in MS?

Links:

The MSing Link

Behind the Scenes Video

About Gretchen Hawley

Coming up on our next episode:

On the next episode of Living Well with MS, Geoff Allix explores the power journaling has to help heal the body with Mari L. McCarthy, an award-winning and international bestselling author of books such as Journaling Power: How to Create the Happy, Healthy Life You Want to Live and Heal Yourself with Journaling Power. The power of Mari’s own story and the impact she has had on people all over the world will open your eyes.

Don’t miss out:

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Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based neurologist specializing in MS, whom we featured last season on an episode exploring how to make the right medication choices when you have MS. Now we tap his expertise to help us understand the complicated calculus of how the lifestyle choices we make might impact MS and our overall health. We are surrounded by temptations – from that delicious pint of ice cream to the lure of sleeping in instead of hitting the gym – but the lifestyle choices we make come at a price. Whether or not you have MS (but particularly if you do), it’s important to understand the bargain you’re making between living a healthy life and enjoying some of your favorite vices. We hope this episode helps spark your thinking on this crucial topic.

Dr. Aaron Boster’s Bio:

Dr. Aaron Boster is an award-winning, widely published and Board-certified neurologist who currently serves as the Director of the Neuroscience Infusion Center at OhioHealth. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experienced informed Dr. Boster’s drive to do things differently. At OhioHealth, he spearheads a revolutionary model in MS treatment and patient care drawing on interdisciplinary resources and putting patients and families first. Dr. Boster is also an Adjunct Assistant Professor of Neurology at Ohio University Heritage College of Osteopathic Medicine, and a former Assistant Professor of Neurology at The Ohio State University, where he also formerly headed the Neuroimmunology division. Dr. Boster received his MD from the University of Cincinnati College of Medicine. He also manages a popular YouTube channel covering all aspects of MS.

Questions in this episode include:

What comprises your “4 for 4” approach?
The OMS 7 Step Recovery Program includes stress reduction and specifically encourages mindfulness. How does this align with your “4 for 4” approach?
Another OMS pillar is to encourage a healthy lifestyle for family members because they have an increased risk of possibly getting MS. Do you agree with this thinking?

Coming up on our next episode:

Did you know exercise can help build neuroplasticity (for us lay people, that’s the brain’s ability to continually change, a sign of brain health)? On the following installment of Living Well with MS, Geoff Allix dives into this mind-expanding topic with Dr. Gretchen Hawley, a physical therapist and MS specialist based in Boston who is also the founder of the MS wellness program, The MSing Link.

Don’t miss out:

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Thanks for listening in to our second season’s second episode. Deuces are wild, so we are breaking with our usual format and setting the stage for two podcasters to have a frank and intimate conversation about their respective journeys. Joining Geoff for this episode is the talented Jessie Ace – blogger, illustrator and host of the DISabled to ENabled, a podcast that aims to inspire people living with chronic illness.

Jessie has interviewed everyone from Paralympians and radio DJs to chronic illness bloggers and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide, such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others, and has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary, so she wants to change this for other young people and support them through the process by being a patient advocate.

In lieu of specific questions, Jessie and Geoff discuss their respective MS diagnoses and the challenges they faced, as well as focusing a bit on OMS and how its 7 Step Recovery Program can help add a ray of hope to people with MS.

Links:

Jessie Ace’s Website

From DISabled to ENabled Podcast

Jessie Ace’s Blog

Enabled Warriors on Facebook

Enabled Warriors on Instagram

Geoff Allix’s Bio

Our next episode, Dr. Aaron Boster, an Ohio-based board-certified clinical neuroimmunologist specializing in MS, returns to the guest chair to rejoin Geoff in discussing lifestyle choices and how many the right (or the wrong) ones can impact your MS. Be sure to tune in!

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Welcome to Season 2 of Living Well with MS and thank you for being part of our growing podcast audience. Thanks to you and listeners like you, the podcast’s first season was a hit, with audience stats that landed us in the top 20% of all podcasts out there. Please keep tuning in and spread the word. Regardless of how people hear about Overcoming MS, the important thing is that they hear about it, and Living Well with MS is an informative tool to help make that happen!

On this first episode of our second season, we are pleased to welcome a very special guest to Living Well with MS, Dr. Valter Longo, the scientist behind the Fasting Mimicking Diet. Dr. Longo is a bio-gerontologist and cell biologist serves as a professor at the USC Davis School of Gerontology and as the director of the USC Longevity Institute. He is the creator of the fasting-mimicking diet, a low-calorie, low-protein, low-carbohydrate, high-fat meal program that claims to mimic the effects of periodic fasting. Despite the implication, this is a juicy and timely topic, so tune in to hear what Dr. Longo has to say. To read Dr. Longo’s full bio, click here.

Questions:

Thanks for joining us, Dr. Longo. Before we dive into your dietary recommendations, can you enlighten us a bit about today’s rising fascination with fasting diets?
Tell us a bit about the fasting-mimicking diet and what you consider its primary benefits.
What are the main differences between the fasting-mimicking diet and other fasting diets?
What are blue zones?
Your research shows that fasting mimicking can help people live longer, but can it also help people with MS live better?
Can you tell us a bit more about 5:2, 16:8 and occasional water fasting, and is there a difference in effects between them?
What should we eat between fasts?
Can we drink alcohol?
What is the Prolon diet?
If people can’t afford Prolon, can they get some of the benefits on their own?

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. Our next episode is a special one, with one podcaster talking to another as Geoff Allix interviews Jessie Ace, host of the podcast, From DISabled to ENabled.

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Bio:

Since the 1980s, Andy McKenna has been a dedicated mountain biker, spending his life poring over maps, dreaming and exploring the mountains of Scotland and beyond. Turning his passion for two-wheeled adventure into a multi-award-winning mountain bike guiding and tour business in 2008, Andy is an experienced mountain bike guide and reluctant administrator who along with his wife Aneela balance their busy working lives by making sure they both takes their 'medicine’ regularly, meaning together getting out of the office, into the hills on their bikes as often as possible.

Andy has been living with MS without use of MS medication since 2007 and is the driving force behind ‘Stoked on MS’ (irony intentional) and through this hopes to shine a light of hope on the reality of leading a healthy, productive and active existence by adopting the Overcoming MS way of life.

Questions:

Can you tell us a little about yourself: where are you from? What do you do?
How did you find your passion for cycling? Tell us a little about your journey to becoming an avid mountain biker.
What is Go-Where?
How did your MS diagnosis change your relationship with your cycling passion? What did you do about it?
What limitations has your MS introduced to your active lifestyle, and how have you dealt with or overcome them?
What is Stoked on MS?
How did you discover OMS and what has your experience been with its approach to MS management?
What compelled you to dedicate some of your fundraising efforts to OMS (which, by the way, resulted in over GBP 70K in collective contributions to date)?
If you had one piece of wisdom or inspiration to impart to someone newly diagnosed with MS, what would it be?

Links:

Stoked on MS

Andy’s Cycling Tours Company

Andy’s GoFundMe Page

Andy’s Facebook Group (membership request required)

Andy’s Instagram

Andy’s YouTube Channel (cool mountain biking videos)

Swank MS Foundation

Subscribe to this podcast and never miss an episode. We will be taking a few weeks off to celebrate the holidays, and we certainly hope you will too, though you can catch any episode of Living Well with MS here or on your favorite podcast listening app. We will kick off season 2 of this podcast on January 15, 2020 with a very special episode on intermittent fasting featuring world-renowned expert in the subject, Dr. Valter Longo. Till then, have a wonderful holiday season and Happy 2020!

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If you’re diagnosed with MS, your thoughts naturally gravitate to your own health and what you can do to improve it post-diagnosis. Once you’ve settled into a course of action and considered positive steps you can take to improve your health outcome, such as the OMS 7 Step Recovery Program, you might start thinking about your family. Given there is a genetic component to MS, prevention in family members (and this doesn’t just apply to kids, but siblings too) is a vital topic when considering a comprehensive approach to MS management. In fact, prevention is so important that it constitutes an entire step in the OMS 7 Step Recovery Program. And there are specific steps you can take to help ensure that your genetically-related immediate family steers clear of MS.

Joining this crucial discussion on today’s episode is Lorna Wilson, who has firsthand experience with both MS and preventing it in family members. Lorna learned of Overcoming MS shortly after being diagnosed with Relapsing-Remitting MS (RRMS). As a mother of three – with a love of family, food, travel and adventure – she enjoys life with family, friends and community. With a family keen on delicious food, the OMS diet keeps those she loves happy and well-fed while positively impacting her own health. Lorna is focused on MS prevention and empowering her daughters to take measures for their future health and well-being.

Questions:

Tell us about the genetic component to MS.
If you have MS and have children, how likely are they to get MS?
How did you break the news of your diagnosis to your children?
Have you changed how you act as a parent because of MS?
What are they key factors in preventing children and family members from getting MS?
If you follow the OMS program, should your kids and family members be following it too?
Is it just diet or should they follow the other pillars?
Should children follow the OMS diet to the letter?
What do the numbers show in terms of reduced chance of getting MS if you are a child or sibling of someone with MS and you follow the OMS program?
Teenagers can be quite rebellious in general, so what are some tips to encourage them to adopt the right lifestyle choices to aid prevention?
How do you persuade children to continue with healthy practices once they leave home?
Any other prevention tips for kids and family members of people with MS?

Subscribe to this podcast and never miss an episode. Please review our podcast on Apple Podcasts or your favorite podcast listening app. On the final episode of Living Well with MS’ first season, we welcome Scotland’s own Andy McKenna, mountain biker extraordinaire, owner of a cycling trekking business called Go-Where and creator of the inspiring documentary film, Stoked on MS. Thanks to all our listeners for making Season 1 of Living Well with MS such a big success. We are excited to have you back for Season 2, launching on January 15, 2020 with a special kickoff episode on intermittent fasting, featuring world-renowned expert on the subject, Prof. Valter Longo.

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The holidays will soon be upon us, and we all know food is a big part of the fun. Whether it’s Thanksgiving, Christmas, Hanukkah, New Year or any other festive occasion that you may celebrate, this time of year presents the temptation of delicious meals whose ingredients don’t always fit the dietary guidelines OMS recommends. So how do you draw the line between keeping your palate happy come holiday time versus sticking to a diet that will keep you healthy?

Well, that’s what we will discover by talking to Ashley Madden, a full-time food lover and health enthusiast. She’s a pharmacist, plant-based chef, certified holistic nutrition consultant and food photographer. A diagnosis of MS in her early 20s triggered an overhaul of her personal and professional life and, ultimately, she traded prescriptions for plants! She shares her plant-based, gluten-free and oil-free recipes on her blog RiseShineCook.ca and creates recipes for health and wellness outlets like Forks Over Knives and Mind Body Green in addition to working on her first cookbook, to be released in the fall of 2020. Originally from Canada, Ashley has moved around the world over the last 10 years, from New York to the Netherlands, and currently she lives in Taiwan. You can learn more about Ashley and her taste bud-tempting work here and here.

Questions:

Can you tell us a little about your background and your passion for cooking?
How long have you been following OMS?
- Has it been challenging to change your dietary habits?
- What are you best tips for making the transition to an OMS diet easier?
Holidays can be a stressful time for meal preparation. What is some overall solid advice for reducing that pressure?
Lots of holiday meals are heavy on ingredients that are not OMS-friendly, like meat and dairy. What are some tips for making holiday meals that are consistent with OMS guidelines yet still delicious?
Would your tips for making OMS-friendly holiday meals differ if you’re talking about cooking for large groups versus smaller more intimate gatherings?
Let’s talk about some specific holidays to see if you have any special tips or meal ideas for these:
- For our friends in Canada and the United States, Thanksgiving?
- Christmas?
- Hanukkah?
- New Year?
- Any other holidays come to mind that inspire any special advice?
If there is one nugget of advice from your experience with preparing meals that you’d like to impart to our audience in closing, what would that be?

Recipe links:

Christmas Spice Cake:

https://riseshinecook.ca/blog/festive-vegan-christmas-spice-cake-gluten-free--oil-free

Some pudding recipes:

https://riseshinecook.ca/blog/5-minute-cashew-mango-mousse

https://riseshinecook.ca/blog/vegan-chocolate-almond-pudding-5-minutes-5-ingredients

Kale Potato Pie:

https://riseshinecook.ca/blog/vegan-holiday-dinner-recipe-herbed-potato-kale-pie-with-savoury-buckwheat-crust-gluten-free--oil-free

Holiday Platter:

https://riseshinecook.ca/blog/plant-based-mezze-platter--vegan-gluten-free-sunflower-seed-falafel-balls-raw--baked

Subscribe to this podcast and never miss an episode. On the next installment of Living Well with MS, we tackle the vital topic of preventing MS in family members through a candid interview with from Lorna Wilson, a member of the OMS community who offers a firsthand perspective on taking the necessary steps to ensure her kids steer clear of MS.

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Navigating the range of medication choices for people with MS can feel like walking through a maze blindfolded. There are so many factors to consider – from effectiveness to side-effects – so we are fortunate to have Dr. Aaron Boster, an Ohio-based neurologist specializing in MS, as this episode’s guest to help demystify the sea of Disease Modifying Drugs that are presently available to manage the symptoms of MS.

Questions in this episode include:

What are the levels that neurologists talk about when referring to medication?
What does it mean to a patient if they are getting a level 1, 2 or 3 medication?
Can you describe some of the most commonly prescribed disease modifying therapies that would help someone with MS make the right choice?
Do you think that someone with MS should start with the mildest therapy first and then work up to a stronger therapy if symptoms progress, or use the strongest possible therapy at the outset?
Do the most effective medications always have the most side-effects?

Subscribe to this podcast and never miss an episode. The cascade of holidays is around the corner, and you’re probably already prepping your palate for some rich meals. On our next episode, join Geoff as he chats with Ashley Madden about OMS-friendly holiday cooking tips, just in time to ensure your holiday meals will be healthy and delicious!

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Multiple Sclerosis is the focus of burgeoning medical research, which can seem like a scientific maze to the layperson. So on this episode of Living Well with MS, we are fortunate to have as our special guest one of the most qualified guides through the MS research labyrinth, Professor Gavin Giovannoni.

Professor Giovannoni is an academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London. His current research is focused on Epstein Barr virus as a possible cause of multiple sclerosis, MS-related neurodegeneration, biomarker discovery and validation, and MS clinical outcomes. In his spare time when he is not busy pursuing new frontiers in MS research, Professor Giovannoni is an avid reader, blogger, runner, gardener, husband, father, dog-owner, cook and wine and food lover.

Questions in this episode include:

What got you interested in specializing in MS?
In what ways have you seen MS clinical and research objectives shifting over the past decade?
Do you see lifestyle modification as playing an increasing role in patient care?
Why are lifestyle factors so critical in managing autoimmune conditions such as MS?
Has generally accepted clinical practice for MS care been slow to adopt some of the best practices in terms of integrating lifestyle modification into mainstream care that we’ve seen in heart disease, diabetes and certain forms of cancer? If so, why?
What are the most promising research frontiers in MS today?
What can we expect to see as possible outcomes of today’s MS research in the next 10-20 years?
What’s the most important advice would you give today to people newly diagnosed with MS?

Subscribe to this podcast and never miss an episode. Our next episode will feature Dr. Aaron Boster, an Ohio-based board-certified clinical neuroimmunologist specializing in MS. Dr. Boster will discuss how to navigate the array of medication choices available for managing the symptoms of MS, and how to make the right choices. Be sure to tune in!

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Many experts believe that vitamin D is a key regulator of the incidence and severity of MS, and this is one of the reasons why ensuring sufficient intake of this critical natural resource is one of the pillars of the Overcoming MS (OMS) 7-Step Recovery Program. So, it’s timely that this episode of Living Well with MS picks the topic apart with a guest well-versed in his own right on the topic, Dr. Conor Kerley.

Conor was diagnosed with MS at the age of 15 and fully expected to be forced to curtail his active lifestyle. He was surprised at the lack of focus on diet and lifestyle in his medical consultations, so he undertook his own research, eventually finding OMS and making the necessary adjustments to his diet and lifestyle that have kept him active, symptom-free and relapse-free to this day. Inspired by his experiences, he went on to study human nutrition and dietetics, and received his PhD from University College Dublin in 2016. You can read Conor’s full bio here.

Questions about vitamin D include:

Why is Vitamin D important in general?
Why is Vitamin D especially important if you have MS?
Could MS cause low vitamin D rather than the other way around?
How do you measure your own Vitamin D level? What’s a healthy level of Vitamin D to have?
What type of vitamin D should I take?
How about getting Vitamin D naturally, from the sun? How do I do that?
How do you balance the benefits of getting Vitamin D from the sun with the risks of too much UV exposure?
My doctor said to take 1000 IU per week because my level is at 100 nmol. Should I follow that advice?
Is vitamin D safe to take? Can you overdo it?
Anything else we should know about Vitamin D? Any interesting facts, side benefits or risks?

Questions about other supplements include:

Are there any other supplements someone with MS should consider taking?
Rather than taking Vitamin D, flaxseed oil and Vitamin B12 separately, should I just take a multivitamin tablet?
What are the pros and cons of other supplements? Let’s go through a short list and tell me what you think:
- Cannabis
- CBD oil
- High dose biotin
- Vitamin K2
- Magnesium
And last but not least, everyone’s favorite and perhaps controversial topic: cannabis. What are your thoughts on its benefits and drawback for people with MS?

Subscribe to this podcast and never miss an episode. Our next episode is quite the hot ticket, because Geoff will be discussing research priorities in MS with one of the foremost experts in the field, Professor Gavin Giovannoni, Chair of Neurology, Blizard Institute of Cell and Molecular Science, Barts and The London School of Medicine and Dentistry, Queen Mary University of London and the Department of Neurology, Barts and The London NHS Trust. The topic and guest promise one of the most insightful episodes yet!

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Most people, regardless of whether or not they have MS, may think running a marathon is, simply put, crazy. While exercise is an important part of the Overcoming MS (OMS) 7-Step Recovery Program, we make no claim to making everyone (or anyone) a marathon runner. Many people with MS will have symptoms that preclude them from running long distances, or indeed running at all. But inspiration is open to all, and this episode’s special guest, Alex Tsirigotis, is someone who not only runs, but has pushed his body to his limits by regularly running marathons. And the fact that he has MS is just a footnote in his story.

About Alex Tsirigotis:

Alex lives in North London with his wife and two children. He was a keen footballer (that’s soccer for our US audience), playing three times a week, when in 2012 he suffered a knee injury which kept him out of action for 6 months. During his rehabilitation he began to experience visual impairments when engaging in light physical activity. Following several medical referrals and tests, he eventually received a diagnosis of Relapsing-remitting MS in 2013. Discovering OMS shortly after diagnosis, Alex has embraced all aspects of the lifestyle for the past six years and despite not being able to continue playing football and contact sports, he developed a love for running and cycling and has successfully completed a London to Paris cycle, several marathons and an ultra-marathon, something his neurologist told him would not be possible in the early days of his diagnosis.

In his interview, Alex mentions his OMS Athens video and the OMS Strava Club.

Questions include:

How about your experience with MS?
When were you diagnosed?
How did you find out that you had MS?
What changes did that mean for your life?
What were your symptoms?
When did you find out about OMS and how did you learn about it?
How long was it after you started following OMS that you started to come into yourself?
When did you start to see noticeable improvements?
Any tips on implementing the OMS program?
Tell us a little about your fascination with marathon running. How does it feel to run a marathon? Why do you do it?
When you’re doing endurance exercise, do you notice any differences between yourself and other runners?
Do you have any long-term side effects from running marathons?
What, in your opinion, is the single most important piece of advice you have for anyone contemplating starting the OMS program?

Subscribe to this podcast and never miss an episode. In our next episode, Geoff interviews Dr. Conor Kerley and dives into the world of vitamin D and other supplements. This is a key topic in MS and overall health that you won’t want to miss!

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Meditation is an important facet of the Overcoming MS (OMS) 7-Step Recovery Program, but many people find it hard to work it into their daily lives, while others think that it might be too “out there” for their more practical sensibilities. We are very pleased to have Dr. Craig Hassed as our guest on this episode of Living Well with MS to demystify the practice of meditation and provide very sound reasons for why you should consider its wondrous stress-relieving effects as reason enough to consider trying it. Dr. Hassed, an expert on mindfulness-based stress reduction, will also provide some common sense tips about how to successfully work meditation into your daily life.

Dr. Hassed works at the Department of General Practice and is coordinator of mindfulness programs at Monash University in Melbourne, Australia. He is regularly invited to speak and run courses in Australia and overseas in health, professional and educational contexts. He is the author of 11 books, was the founding president of the Australian Teachers of Meditation Association and is a regular media commentator.

You can learn more about Dr. Hassed’s professional background here.

Questions include:

Is mindfulness really scientific?
What happens to the body under stress?
Is there a difference between long-term stress and short-term stress?
Should you get professional help as well as mindfulness training if you experience anxiety or depression?
Does religious faith reduce stress?
Should we keep a journal?
Is mindfulness the same as meditation?
Is it necessary to follow guided meditations?

Subscribe to this podcast and never miss an episode. In our next installment, join Geoff as he interviews Alex Tsirigotis on how he has conquered running numerous marathons in spite of having MS.

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You can probably feel your heart racing a bit, and that’s even before you’ve listened to episode 6 of the Living Well with MS podcast, which is all about getting and staying fit. In this episode, host Geoff Allix dons his proverbial trainers (or sneakers, depending on where in the world you’re wearing athletic shoes) to discuss the importance of implementing a balanced fitness regimen when you have MS. Joining Geoff is Véronique Gauthier-Simmons, originally from France and now residing in Portugal, is an OMS facilitator and qualified yoga instructor and yoga therapist. Véronique was diagnosed with MS at the age of 34, but through the Overcoming MS (OMS) 7-Step Recovery Program and her love of exercise found a way to make staying fit a meaningful part of her life. Since exercise is such a key pillar of the OMS approach, Véronique now helps others do the same, always hewing to her personal motto, “stop being afraid of what could go wrong and think of what could go right!”

You can learn more about Véronique’s professional background here.

Questions include:

How does you decide which exercise – running, swimming, biking, weights, yoga – is right for you?
If you’re not fully mobile, what kind of exercises can you do?
Should one stay within their comfort zone, or push their boundaries?
Is it better to watch exercise videos or take a fitness class?

Subscribe to this podcast and never miss an episode. In our next installment, join Geoff as he speaks with mindfulness expert Assoc. Professor Craig Hassed on stress relief and working meditation into your daily routine.

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Welcome to episode 5 of the Living Well with MS podcast. This episode is a bit of a departure from our usual interview format, as our host Geoff Allix packs his mic and travels to the stunning city of Edinburgh, Scotland to attend a powerful one-day event, Recovering from MS: Wishful Thinking or Realistic Optimism? This OMS event took place on Saturday June 8, 2019, with featured guest Professor George Jelinek, founder of the OMS program. Among the 400+ attendees joining George were numerous OMS facilitators, neurologists and other health professionals, and well as hundreds of people from around the world who are on the OMS program. Geoff snagged impromptu chats with some of the many fascinating people in attendance, including Professor Jelinek.

You can learn more about future OMS events here, or as always, visit and explore our website and all its resources here. Subscribe to this podcast and never miss an episode. In our next installment, Geoff explores the OMS Guide to Getting Fit with his special guest, certified yoga instructor, OMS facilitator and overall fitness maven Veronique Gauthier-Simmons.

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Welcome to episode 4 of the Living Well with MS podcast. In this episode, host Geoff Allix digs into the second part of his interview with nutritionist Sam Josephs, BA (Hons), DipBCNH, mBANT, CNHC Registered. They continue discussing diet as a key pillar of the Overcoming MS (OMS) 7-Step Recovery Program, and how to integrate the OMS diet dos and don’ts into one’s daily routine.

You can learn more about Sam’s professional background here.

Questions include:

What are the basic rules of the OMS diet?
Do you just end up eating salad?
Can I eat at restaurants?
What do you do about cooking for the holidays?
What about chicken breast? Is it that bad?
Any tips to make cooking easier?

Subscribe to this podcast and never miss an episode. In our next installment, join Geoff for a very special “live” episode, as he captures spontaneous interviews with Prof. George Jelinek, OMS staff and OMSers themselves from the Recovering from MS event in Edinburgh, Scotland to be held on June 8, 2019.

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Welcome to episode 3 of the Living Well with MS podcast. In this episode, host Geoff Allix gets out his knife and fork in a savory two-part interview with nutritionist Sam Josephs, BA (Hons), DipBCNH, mBANT, CNHC Registered. As you can tell by all the acronyms after Sam’s name, she is a highly experienced nutritionist who works in North London. Sam’s husband was diagnosed with MS in 2002, and has been doing quite well following the Overcoming MS (OMS) 7-Step Recovery Program. Since diet is such a key pillar of the OMS approach, Sam has become an expert in how to integrate the OMS diet dos and don’ts into one’s daily routine.

You can learn more about Sam’s professional background here. And given the importance of the topic and the extent of the tasty questions Geoff had in store for Sam, this episode will be broadcast in two parts.

Questions include:

What are the basic rules of the OMS diet?
Do you just end up eating salad?
Can I eat at restaurants?
What do you do about cooking for the holidays?
What about chicken breast? Is it that bad?
Any tips to make cooking easier?

Subscribe to this podcast and never miss an episode. In our next installment, join us for part two of our nourishing chat with Sam Josephs on the OMS diet in a nutshell.

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Welcome to episode 2 of the Living Well with MS podcast. In this episode, our host Geoff Allix has a lively discussion with Dr. Jonathan White, a practicing medical doctor in Coleraine, Northern Ireland who also works with Overcoming MS (OMS) as a medical consultant and event facilitator. You can learn more about Dr. White’s professional background here. In speaking with Dr. White, we dig into some of the research that supports and helps advance the Overcoming MS (OMS) 7-Step Recovery Program.

Questions include:

What is the science that supports OMS?
What are the pros and cons of following the OMS 7-Step Recovery Program?
What is the history of the research behind OMS?
What has changed between the release of the first and second editions of Prof. Jelinek’s book?
Are there likely to be future changes to the OMS 7-Step Recovery Program?

Subscribe to this podcast and never miss an episode. In our next installment, we’ll talk to Sam Josephs to discuss the OMS diet in a nutshell.

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Welcome to the inaugural episode of the Living Well with MS podcast. In this podcast, we are going to take a journey together to explore how extensive scientific research is illuminating new ways to help people with MS live better and healthier lives through changes made to their diets and lifestyles. This evidence-based approach to MS management is reflected in the Overcoming MS (OMS) 7-Step Recovery Program.

In this episode, we speak with Professor George Jelinek, the founder of OMS. You can learn more about his illustrious medical and scientific research career here. We talk about Professor Jelinek’s incredible journey, from losing his mother to MS to his own diagnosis to discovering the science behind recovering from MS, and how he shaped his pioneering work to help people with MS all over the world live healthier lives. We ask Professor Jelinek some key questions to gain his insights on Overcoming MS:

Why did you step down as head of the Neuro-Epidemiology Unit at the University of Melbourne, and what will you be doing next?
Can you give us an overview of OMS?
Is OMS essentially just a diet?
Meditationis part of the OMS 7-Step Recovery Program, but it doesn’t sound very scientific. Is there any science behind it?
Most other MS protocols outside of health services tell you not to medicate, but OMS doesn’t; why is that?
Do you think lifestyle factorswill enter into the mainstream treatment?
Any prevention tips for people with MS who have children?

Subscribe to this podcast above and never miss an episode. In our next instalment, we’ll talk to Dr. Jonathan Whiteon the evidence behind the OMS approach.

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Welcome to Overcoming MS’ Living Well with MS podcast. In this episode, Geoff introduces listeners to the OMS podcast and previews some of the exciting topics and interviews in store in future episodes. Geoff shares his excitement about hosting the OMS podcast because he is passionate about sharing as much information about OMS as possible with both current OMS community members and newbies alike. Also, as someone who has MS and has experienced the positive effects of following the Overcoming MS (OMS) 7-Step Recovery Program, Geoff wanted to pay it forward and raise even more awareness about OMS in places only a podcast can reach.

Subscribe to this podcast and never miss an episode. In our first episode, we’ll talk to none other than Professor George Jelinek, and get his take on each of the 7 steps in the OMS program.

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