Muscle Owl Podcast: Recent Episodes
Muscle Owl Media
We're a cheeky trio talking politics, disability and events. We provide updates and engage in discussion on topics within the neuromuscular and disabled community.
Just us for another throwback episode of Muscle Owl Talks from December 2016! We discussed employment and disability, from a muscular dystrophy perspective. Featuring Vivek and Sulaiman.
“That sense of being able to work, the sense of feeling valued, it is so important.”
Here’s a throwback episode of our Muscle Owl Talks video show from December 2016!
Peter and Jon Hastie discuss the importance of adults with Duchenne (of all ages!) getting access to treatment.
Here’s a throwback episode of Muscle Owl Talks from November 2016! We discussed muscular dystrophy and life expectancy with Vivek and Jon Hastie.
“If you outlive the age that they say you’re going to live, you can feel lost!”
Using life expectancy for muscular dystrophy conditions? What do we think of it? Jon Hastie and Vivek discuss how talking life expectancy can often be unhelpful for Duchenne patients, and Michaela muses on her own experiences with SMA.
“I don’t think we realize how commonplace this is. And it is quite commonplace. We need to question where people’s legal protections are from this.” Join us in Muscle Owl Talks Episode 21 as we discuss the threats of care homes to people with a disability.
“There is so much focus on us living longer lives, but if we don’t have the right care, and if nobody is accountable, then what is the point?” Vivek discusses the latest All Party Parliamentary Group for neuromuscular care, which was hosted by Muscular Dystrophy UK. Muscle Owl Talks Episode 18 is OUT NOW!
In October 2016, we welcomed Jon Hastie onto the show for the first time, and discussed his charity DMD Pathfinders. We also spoke on how people with Duchenne can inspire each other!
Here is our Muscle Owl Talks episode 16 for your listening ears!
Back in July 2016, Muscular Dystrophy UK hosted an All Party Parliamentary Group on Physiotherapy. One of our co-editors, Vivek, gave a speech on his experiences of physio, as a young man with Duchenne muscular dystrophy. Here is the Muscle Owl Talks episode we followed up with immediately afterwards, as we spoke of our own experiences, and how we think health care should lead.
We look back to episode 11 of Muscle Owl Talks, which concluded our discussion on ableism in society.
“Being talked to like you’re not like everybody else is just tiring, but at the same time, you don’t want to be mean to people.”
“People are so afraid to say the wrong thing that they’ll often say nothing.”
What are you views on ableism?
Are some newspaper articles ABLEIST?! What is ableism?! We’re throwing way back to episode 9 of Muscle Owl Talks with the first half of our ableism introductory chat from 2016.
An AMAZING new episode of Muscle Owl Talks from last year! We discussed Zoe’s debacle on a train, and Michaela and Sara keep us entertained with their experiences.
August is SMA Awareness Month - so check out our episode from just a couple of months back! We all know spinal muscular atrophy is a form of muscular dystrophy, but how do its different types vary? Hear our co-editor Michaela Hollywood (who has SMAtype2) explain in our recent edition of Muscle Owl Talks!
We sat down to discuss travelling by bus for disabled people! Back in January the Supreme Court ruled a partial victory where bus drivers and operators are expected to use “moral force” if someone other than a wheelchair user is occupying the priority space on the bus. In recent weeks, bus operators and disabled people have said that more power to remove people is required.
Here is our Muscle Owl Talks episode on the topic from March 2017!
Limb Girdle Awareness Day 2017 was a great success. Here is our special episode on the condition from the day! One of our fabulous team members, Zoe - who has limb girdle muscular dystrophy herself - explains diagnosis, adapting, and the fairly broad diversity that exists between the various condition types.
One for all families in the Duchenne muscular dystrophy community! This is our Muscle Owl Talks show previewing the Action Duchenne Conference in November 2017.
We are joined by Action Duchenne CEO Diana Ribeiro and Lynnette Ellison!
Today’s Muscle Owl Talks episode features an annecdote from one of our co-editors, Vivek! We talk accessibility, and in particular, Vivek’s recent visit to the airbase and Imperial War Museum in Duxford, UK with Action Duchenne and the Duchenne Family Support Group!
With Limb Girdle Day fast approaching, here is last year’s episode from 2016, featuring Peter Zoe and Michaela.
In the UK, the latest changes to Personal Independence Payments mean many disabled people are having their motability cars taken away from them. A large amount of these people have conditions such as becker muscular dystrophy, and may struggle to walk even short distances. Here’s our update from earlier in 2017.
In May, the Equality and Human Rights Commission launched their 2017 Disability Report, which covered six key areas of life. It concluded progress towards real equality for disabled people over the past twenty years is insufficient and littered with missed opportunities and failures. Here are our views and response.
Tune in to our episode on the report as we investigated its findings and gave our thoughts.
Today is World Duchenne Awareness Day. It was also 4 year old Fraser’s first day of school! However Fraser - who unlike many with DMD, has never been able to walk - has been refused a motorised wheelchair by the NHS in England, and has been left with no autonomy in his manual chair.
We discuss the situation with Fraser’s mother, our good friend, Shelley. And we raise the very concerning normalisation of people having to fund their own wheelchairs.
Tune in to the first of our two special episodes for World Duchenne Awareness Day! We are joined by our friend and regular guest Jon Hastie, who is 36 and has Duchenne muscular dystrophy.
This year’s theme is DREAMS, so we discuss how young people with Duchenne muscular dystrophy can overcome any obstacles, plan out, and effectively accomplish their dreams! Jon himself has a Phd and runs his own charity DMD Pathfinders!
“What would we do, if he and I were out, and something like this happened?”
After the Grenfell Towers fire, and the disasters involving acts of terrorism this year, we recorded an episode discussing what happens to disabled people in such situations. With some time having passed since these events, we have decided to post this episode.
In some parts we talk very seriously, in some we add a little humour. We hope you find it another interesting discussion.
This week, BuzzFeed published a report finding that tens of thousands of disabled children and adults are being denied NHS wheelchairs in England because of a postcode lottery in services.
Michaela and Peter discuss their views on this; why it is a problem, and how it needs to be fixed.
This week on Muscle Owl Talks, we spoke to gaming expert, Ian Hamilton. He and Vivek discussed how the gaming industry is making games more accessible for a wide range of people with disabilities.
Do you play video games? What type of assistance do you use?
Muscle Owl Talks Ep60: Trains, the London Tube, and Accessibility!
Zoe was taken an hour out of her way last week, when her tube train decided not to stop at the station without prior warning! All this when she was on her way to one of her professional qualification exams!
Tune in for another chucklesome episode!
Muscle Owl Talks Episode 59: We’re joined by Action Duchenne CEO Diana Ribeiro, as she explains the Early Access to Medicines Scheme (EAMS), which is helping many adults in the UK with Duchenne muscular dystrophy access new treatment.
Questions from Ravi and Peter also touch on the topic of the European Union, and whether the upcoming Brexit decision will affect how drugs are approved in the UK.
The senate vote on the latest US healthcare bill is upcoming, and many Americans are fearful it will finally pass.
Watch Steve and Hannah as they give their reactions to last week’s ADAPT protests, and explain why they are very much concerned!
Muscle Owl Talks Ep57: We hope you’re enjoying the heat wave (depending on where you are in the world!)
With it being Summer in the northern hemisphere, and all the sports day videos across Facebook, we decided to reminisce on sports days gone by. We ask what is best for young children with a physical disability, and how best to adapt races!
Tune in here and on iTunes, and as always, feel free to like, share, and comment below!
Vivek has been developing some solutions to help make his gadgets more accessible! From his PS4 controller to a new extendible cup holder for his wheelchair!
Do you have any handy accessories for gaming?? Tune in to our latest chat and leave a comment below!
It’s a week since Shelley Simmonds took her son, Fraser, up Snowdon on her back! Tune in as we chat about how it went!
Fraser is 4 years old and has Duchenne muscular dystrophy. However, unlike many other boys with the condition, Fraser has never been able to walk. So Shelley decided to embark on a mammoth hike and fundraise over £11,000 for research into Duchenne muscular dystrophy while she was at it!
Charlie Gard is a young child who is currently being cared for at Great Ormond Street Hospital in London; he is currently on life support.
A last chance potential treatment for his condition lies in the US, but his parents are being refused the right to take him out and try the treatment. The doctors now want to turn the life support off, and end his life.
What is the right option? Peter and Michaela discuss…
It’s a late night edition Muscle Owl Talks!
We discuss the latest regarding SMA and Spinraza (nusinersen) in the UK. 70 children still not on the drug? What is causing the delay?
This weekend, our friend Shelley will be climbing Mount Snowdon in the UK - with her young son Fraser on her back!!!
Fraser, who is 4 years old, has Duchenne muscular dystrophy, and their fundraising efforts will support research into the condition.
You can check out Fraser’s page here: Fraser & Friends
and their fundraising page: https://www.justgiving.com/fundraising/frasersimmonds
Join us as Peter and Andrew look back at their wild race in the Manchester 10k! As we had been discussing earlier, it was Andrew’s first race in his powerchair - who says guys with Duchenne muscular dystrophy can’t run races?!
This episode was recorded LIVE on Facebook the evening after the race!
Join us for Muscle Owl Talks episode 51, as Peter’s brother Andrew makes his first appearance on the show!
Both brothers will be running the Manchester 10k this weekend - in two very different styles!
Join us for Andrew Duffy’s first podcast episode, as he introduces the audio of our Muscle Owl Talks ep45 discussion with our editor Peter.
In the debate, Peter, Michaela, and Zoe to discuss the latest Supreme Court ruling for taxis serving disabled people in the UK.
As always, you can find us at www.muscleowl.com and on www.facebook.com/muscleowl!
The AHCA is ready to replace the ACA (Obamacare). What does that mean at this moment in time?
This week Michaela and Peter are joined by Iowa native, Hannah Soyer, who shares her views on the current issues surrounding the US healthcare bill. What does a pre-existing condition mean? Will disabled people be forced to pay huge sums for their health insurance? What is the future for US healthcare? We will be discussing and investigating through the coming months.
As always, you can find our chats on iTunes (http://apple.co/2rniygJ), and at www.muscleowl.com!
So, our editor Peter ran the Belfast Marathon dressed as an owl! Tune in to hear how it went, as he sits down with Michaela. And hear about the upcoming Manchester 10k at the end of the month too!
As always, don’t forget to check us out on Facebook, Twitter and at www.muscleowl.com!
Check out our latest episode (which featured in video form as Muscle Owl Talks #48), where Peter and Michaela chat live from Belfast about Michaela’s upcoming speech at Bristol University on disability rights!
As always, you can find us at www.muscleowl.com and www.facebook.com/muscleowl!
On Friday we received the news that Spinraza - the latest (and first) treatment for spinal muscular atrophy - had been approved by the EMA for use in all types of SMA across Europe.
Here’s our catch up chat on the subject, and you can read the full EMA report here: https://www.muscleowl.com/
An episode from our Muscle Owl Talks show (episode30) on Feeding Tubes!
If you like, you can watch the discussion on Facebook or our YouTube channel. But it’s here too for when you’re on the move!
Sulaiman and Vivek discuss their experiences with feeding tubes, and how they can have such a positive influence on your life!