Talking Dementia with Heckle & Jeckle: Recent Episodes
Heckle Jeckle
Heckle and Jeckle are two Mental Health professionals diagnosed with Early Onset Dementia. They are funny, serious and smart as they explore all facets of daily life living with this baffling and challenging disease. Laugh, Cry, Learn and Explore Lives Lived Well with Dementia.
This is it! Our Final Episode!
In this episode Heckle & Jeckle share their final thoughts together about creating this series.
Some of the topics they explore further are: Promoting paid work done by those living with dementia & The desire to be told the truth throughout the course of their dementia . .
Jeckle describes the need for continued truth seeking as her best path to maintaining insight.
Heckle & Jeckle further discuss Grief & Loss as part of life and how some case management plans may use distracting techniques to redirect people away from strong emotions about loss.
Comfort & comforters . . . "Don't strap a huge doll to me!!"
Heckle & Jeckle share identifying this podcast as a time capsule of information for their families to visit when ready.
And what now for the future? Heckle describes some of her ongoing projects as an advocate and an author of her new book helping grandchildren to better understand a loved family member experiencing dementia.
Jeckle reveals she has never made a cake and discovers the symbolism of the 'cake' and a renewed understanding of what drives her desire to make this happen with Heckle's help.
Thank you to all our guests and a very special thank you to everyone who listened... x x
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Today Heckle & Jeckle are joined by two people involved in Dementia research across the international information highway.
Dr Jane Thompson is an advocate for public involvement in dementia research. She has a lived experience as a carer of her husband, who died of Alzheimer's disease in 2007. This painful experience led her to become actively involved in dementia research as a public contributor and shares a passion to improve the experiences of those affected by dementia.
Alison Kileen Works as a researcher at Newcastle University UK and is also a health psychologist.
Alison has discovered families of people with Lewy body Dementia benefited in a variety of ways from group activities and exploring the condition and ways to manage together. Importantly family members also felt more able to cope. She ran experimental groups several times with different people and made changes using suggestions from those who took part.
Happily, Heckle has joined Dr Jane & Alison in the Cobolt study that is looking at the benefits of medication.
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Today we revisit the Gp Clinic and discuss sooo much together we feel like we know these wonderful doctors well. It's comforting to know there are General Practitioners willing to join the pathway alongside their patient as the explore a diagnosis and enduring medical care thereafter.
Hilton, Steph & Marita share more about the maintenance of care a Gp provides and the safe & ongoing relationship that develops through the 'slow medicine' approach. Heckle & Jeckle also wonder how the doctors care for a vulnerable patient after diagnosis and what they watch for in follow up appointments.
General practitioners: Dr Hilton Koppe, Dr Marita Long & Dr Steph Daly speak candidly with Heckle & Jeckle in their pursuit to know more about dementia and their experiences with Gp's.
Again, Heckle & Jeckle relate to each other through a shared purpose, meaning and laughter.
General Practitioners Dr Hilton Koppe, Dr Marita Long & Dr Steph Daly are members of Dementia Training Australia’s GP Clinical Education Group. They are the hosts of Dementia in Practice, an excellent new series of podcasts released by Dementia Training Australia (DTA).
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In this episode Heckle & Jeckle invite Oliver to be our special guest after meeting him at the recording studio and discovering a thoughtful young man with an Open Mind, a Big Heart and a Welcoming of all people.
Oliver believes communication is the key to Listening, Empathising and Understanding each other.
Meeting and talking openly with Oliver was a refreshing experience, there was no prejudice, judgement or presumption....
Simply an enquiring mind eager to learn!
We know you will enjoy listening to Oliver as he generously joined us in conversation about dementia.
The future is looking good when the next generation is represented by young adults like Oliver.
Very Cool.
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,In today’s episode Heckle& Jeckle share in a group discussion across the pond and find out how alike we really are. In the first part of today’s episode, we are joined by three guests living with Lewy Body Dementia from Ireland & the United Kingdom. Christine Maddocks, Naomi Gleeson & Kevin Quaid share a part of their own story to assist a greater understanding about what this type of dementia is like.
The women describe the value they experience by being a part of a support group online and feeling understood. Naomi shakes her 'good thing' now she permanently has Jazz hands! Christine is an advocate and speaks at conferences educating the medical world about the lived experience of Lewy body Dementia.
Jeckle shares a hilarious story about being on an aeroplane and her long relationship with her seat 1A.
Kevin tells us how many health practitioners still have never heard of Lewy body Disease and shares an an enlightening point about the eradication of stigma beginning at home!
In the second part of this episode we meet the incredible Karen Meenan!
She has a special interest in Lewy Body Disease (LBD) as co-founder and director of Lewy Body Ireland. Karen is a part of developing reminiscence theatre and radio broadcasts. Karen shares the stories of those living with different neurodegenerative diseases on radio and in theatre. She founded 'Making Hay' dementia-inclusive theatre in 2017 and has produced and directed three co-created plays from intergenerational workshops. Karen shares with us some of her creative productions and her interest in the arts & dementia.
Heckle helps guide the the episode with care, compassion and interest to know more from her peers diagnosed with Lewy Body Dementia.
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In this episode Heckle & Jeckle speak with Speech & Language Pathologist Sheree Brisbane.
Sheree works to assess, diagnose, and treat speech, language, cognitive-communication, and swallowing disorders in people with dementia.
Sheree describes Heckle's voice banking like running a 'marathon' due to the work required to save her voice to a device in preparation of not being able to communicate verbally. Jeckle shares her experience of a break in connection whilst drinking water and nearly drowning!
Sheree explains how even the smallest changes in one's ability to swallow can interrupt one's life in a massive way.
Heckle & Jeckle continue to use humour to help them better understand the changes they face. . .and they all agree the "Nosy Cup" needs a new name.
Sheree is an amazing guest and we are thrilled she spent time with us to share her knowledge.
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Please join us for this incredible conversation with
Mario Gregorio, a Patient Research Partner diagnosed with Vascular Dementia and Dr. Lillian Hung, an Alzheimer Society Postdoctoral Fellow; Clinical Nurse Specialist in Older Adult Mental Health and a Clinical Assistant Professor at the University of British Columbia Nursing.
Both our guests have a unique research project and interest in robotics assisting dementia care.
Mario will share with us why and how he contributes to this interesting dementia research, and they will explain how matching patient needs and the technological solution is vital to knowledge adoption.
Mario & Lillian share with us about 'PARO' the seal, an advanced interactive robot that responds to touch with movements & sound, and 'Dorothy' a remotely controlled robot allowing families geographically separated to stay close.
It was fascinating to hear about all that is new in technology assisting greater engagement with patient and residents and families living with Dementia.
Ironically, our discussion was cut short by a technical disruption just before we could thank our guests whole heartedly with a big smile. So, thank you Mario and Lillian! You are doing amazing work!
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Heckle & Jeckle are thrilled to be joined today by a Specialist Neuroscientist Associate Professor Laura Middleton - from Waterloo University Ontario, Canada.
Laura investigates the relationship between physical exercise, cognition, and brain function using techniques from several disciplines including neuroscience, exercise physiology, and epidemiology. Her research aims to identify ways to optimize cognition across the life course.
Laura explains the effects of physical activity on both the risk of having dementia, and also improving the well-being of people who live with dementia.
Jeckle confesses she may have lived a naughtier life than Heckle after discovering Heckle used to run marathons and skip rope for fun!
Heckle & Jeckle continue to use their humour and as they discuss with Laura her amazing knowledge about the brain and how different areas of the brain and sensory stimulation contribute to movement.
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In today's episode Heckle & Jeckle meet Fran, an expert Occupational Therapist .
"My role as an occupational therapist is to reduce any barriers that stop an excellent life!"
Heckle & Jeckle explore with Fran living with risk in the home, keeping family close and the tale of throwing the fish in the garden!
As usual Heckle & Jeckle share their lived experience with humour and a touch of laughter bringing us all closer together.
Fran's interest throughout her Occupational Therapy career has been to empower and enable people to thrive, and this very much drives her work with people living with dementia. Her work is evidenced based and informed by the lived experience of people with dementia.
During Fran's NHS career she has worked with people living with dementia from pre-diagnosis to end of life, within the community, acute hospital and care home settings. She has devised and delivered training programmes for hospital, care home staff and community groups, and provides consulting and mentoring, within the NHS and on a freelance basis.
Fran believes wellbeing is possible at all stages of the dementia and later life.Fran describes in her expert way how she works with individuals whilst supporting the family to better understand living with risk and the invisible risk of taking away activities that mean so much to the person living with dementia.
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In this episode Heckle & Jeckle are thrilled to talk with Associate Professor Fiona Kumfor. She is a clinical neuropsychologist and researcher based at the University of Sydney. Her research focuses on understanding the social and behavioural changes that occur in people with dementia. The overarching aim of her research is to enable early and accurate diagnosis of dementia, and to develop new intervention and management strategies to support functional independence and maintain quality of life for people with dementia and their families.
Fiona is a fascinating guest and shares her knowledge about the different dementia syndromes and we learn why not all dementia's are the same.
Fiona tells of the emergence of a heightened creativity in individuals diagnosed with Semantic Dementia.
Listen as both Heckle & Jeckle's eyes widen as they learn even more about what is happening for them. . . .
Wow! This is an incredible look into the brain.
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Today Heckle & Jeckle meet three doctors leading the light to help other Gp's find there way back to their patients through the dementia fog!
General practitioners: Dr Hilton Koppe, Dr Marita Long & Dr Steph Daly speak candidly and with a healthy dose of humour together with Heckle & Jeckle about their pursuit to know more about dementia. We discovered a surprising and shocking reality that Gp's receive as little as two hours of training about dementia!!
Heckle & Jeckle share more of their experiences with the doctors in the hope of contributing a greater understanding of Dementia as an umbrella term for many types of Neuro degenerative diseases.
Again, Heckle & Jeckle relate to each other through a shared purpose, meaning and laughter.
General Practitioners Dr Hilton Koppe, Dr Marita Long & Dr Steph Daly are members of Dementia Training Australia’s GP Clinical Education Group. They are the hosts of Dementia in Practice, an excellent new series of podcasts released by Dementia Training Australia (DTA).
We also had a surprise cameo visit with Professor Andrew Robinson, Professor of Aged Care Nursing, Co-director, Wicking Dementia Research and Education Centre, University of Tasmania.
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Season 2 Prologue: It's a Small World After All!
Heckle & Jeckle share what they are up to now and describe what they hope to bring to listeners this season.
This time we travel across the globe and talk to the most interesting minds working across the dementia sector with experts, clinicians, volunteers and those with a lived experience of Dementia.
We explore what drives Researchers, Doctors, Nurses and Allied Health Professionals to work in this sector? How do they cope when they experience patients slip despite all they have done as the disease takes hold, and how do they celebrate the remarkable abilities of patients sustaining wellness against the odds?
Join us each week for candid discussions and interesting group talks!
. . . . And as always, you will hear our humour remains a shared strength against all that still confronts us.
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Today is the final episode in this season.
We talk about all the amazing people that created a pathway igniting our imaginations for us to develop a creative way to share experiences. To all the neurologists, scientists, nurses, support staff, families, friends and loved ones that care enough to know more. . . We love you all. Thank you for all your help. x
“If the brain is to stay as healthy as it can, it must remain active, wondering, playing, exploring, and experimenting right to the end.”― Oliver Sacks.
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In today’s episode Heckle & Jeckle discuss some of the controversial issues that swirl about dementia. They continue to use humour to help them explore difficult topics including: Being seen as a burden to society, End of life decisions, Nursing home relationships, Euthanasia, & staying Reflective.
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Today Heckle & Jeckle explore the massive identity crisis one goes through after dementia becomes your new first name.
Listen as they recall the personal conflict of letting go who they can never be again, and begin to find a way that embraces a new way of life. Still academically driven, both Heckle and Jeckle find pathways unique to themselves that are creative and expressive. Maintaining insight into what is happening to them and those all about them is part of the plan forward to maintain rich and rewarding lives.
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Today Heckle & Jeckle discuss the impact of dementia on the body. Tremor, a quietening voice, rigidity & stiffness are just the beginning of progressive symptoms caused by all types of dementia on the body. . . And for no reason other than it just came to mind, Jeckle tells her hilarious "potato story" as they continue bonding together though humour.
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Today Heckle & Jeckle interview each other's support worker and assistant to find out what they first thought about working with someone with dementia. Discover how their thinking has changed about dementia and some of the challenges of working with unique individuals with this complex and challenging disease. Heckle & Jeckle continue to use their humour as they negotiate their lives with strangers.
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In today's episode Heckle & Jeckle discuss the difficulty of accepting help to maintain independence and autonomy. Discover as you listen to Heckle & Jeckle share their early experiences of 'carers' and the truth not all support workers are ethical, honest & respectful. As always, Heckle & Jeckle use humour to help them share their stories with each other in a way that promotes empowerment over all the hurdles that are thrown their way.
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Join Heckle & Jeckle as they share the ongoing and rolling impact after receiving a diagnosis of Dementia. After the painful loss of careers as mental health clinicians, Heckle & Jeckle then face a new struggle as they come to terms with the inevitability of losing one's driving licence.
The loss of independence and their own identities as professional women are further explored together with their usual humour, laughter and stoicism.
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In today's episode Heckle & Jeckle continue their discussion, exploring the process of gaining a diagnosis of dementia and the "Grey Area" that doesn't exist. . . One neurologist explains: "This is a horrendous diagnosis with a horrific outcome. . ."
Heckle & Jeckle further discuss talking to family about the diagnosis of dementia and being forced to leave long held and cherished professional roles as mental health clinicians.
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Today we introduce ourself as Heckle and Jeckle. We were both once Mental health professionals getting about busy and exciting lives, unaware a disease was insidiously taking shape in our brains. Listen as we share what began as small but ever mounting experiences that were hard to explain. Then, finally being forced to wonder out loud and seek medical investigation into the beginning of discovering a shocking truth. . . Early Onset Dementia had found its way into two more lives with a devastating result. . .
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