Episodios
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This episode features Sam and Alex, twins who have Type 2 spinal muscular atrophy and are media students with bold aspirations.
Sam and Alex are pursuing their passion to enter the media world while also making it accessible to the disabled community. They have their sights set on knocking Ant & Dec off the top presenting spot!
They have recently created a documentary titled “Disabled or not” to highlight the various issues around navigating the media world alongside their disability.
As always, I hope you enjoy this episode! Please give this episode a thumbs up and subscribe if you haven’t already 🥰 thank you for your continued support!
If you would like to watch Sam and Alex’s documentary, it is available on YouTube under “Disabled or not”
#accessibility #awareness #disability #musculardystrophy #wheelchair #podcast #disabledpodcast #media #filming
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Welcome back to a new episode of Dystrophy Diaries!
This episode features Georgie, who has Cerebral Palsy and has completed a first class law degree.
Georgie chats about her condition and how it impacts her while also discussing what inspired her to gain a degree in law!
Georgie wants to use her degree to help those who may have faced discrimination.
We also chat about the journey to accepting using a wheelchair and navigating a disability at a young age!
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This episode features Alyssa who I met via the PINNT charity. We both recieve parenteral nutrition and have had similar journeys with feeding!
We wanted to chat about navigating life on #TPN and try to raise awareness that there is a community of young people recieving this treatment!
I hope you enjoy 🩷
#disabilitypodcast #accessibility #awareness #cardiomyopathy #disability #musculardystrophy #podcast #wheelchair #nutrition #feeding #tubefeeding #piccline #ehlersdanlossyndromeawareness #chronicillness
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I am joined by Dana Halliwell (AKA DyslexicDayna) for episode 32 where we talk all about Dana's social media rise, her disabilities and how society could be more inclusive for all access needs.
Dana is part of my husbands family and so it was really interesting to get to know more about her health journey in recent years.
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This episode is all about the NMC in Winsford and the incredible work they do.
Ben has Muscular Dystrophy and has also worked at the NMC for many years now. Listen to all the exciting things on offer at the NMC and how you can be referred!
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Episode 30 is here 🥳
Please forgive my laidback look, I was so eager to film this episode I did it straight out of my evening shower!
In this episode, I talk about a recent shopping trip I went on this week with my personal assistant and the little blips we navigated! I took this opportunity to talk about the power of having a PA and what this looks like in my daily life. It is not an easy part of the journey, accepting help from an outside person. However, I hope hearing my experience and advice may help ease some peoples anxieties around the topic ☺️
#awareness #cardiomyopathy #disability #disabilitypodcast #musculardystrophy #podcast #accessibility #viralvideo #accessibletravel #limbgirdlemusculardystrophy #wheelchair #wheelchairgirl #mobilityaid #personalassistant #care #shopping #shoppinghaul #disabilitypodcast #inspiringstories
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I am joined by the powerhouse that is Luis Canto E Castro for this episode to dive into accessibility in the workplace and the changes Luis is implementing.
Luis is an inclusion & accessibility consultant, as well as a strong advocate within the disabled community. Luis has built a reputation as one of the most trusted voices in the community and is well respected throughout the world of employment. He is known for the incredible inclusivity work he has done and for championing change in the workplace!
In this episode, we look at what it was like for Luis growing up in South Africa with SMA and his growth as a founder of his own company!
If you would like to work with Luis then please contact him via LinkedIn, his profile is Luis Canto E Castro
#disability #disabilitypodcast #musculardystrophy #podcast #awareness #viralvideo #cardiomyopathy #SMA #spinalmuscularatrophy #inclusion #accessibility #founder #founderstory #consultant #linkedin #workplaceculture #viral
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I am back, after a lovely break (courtesy of Willow Foundation) at Centre Parcs!
Here I wanted to discuss their accessible lodges and have a little chat about my thoughts on body image and confidence!
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I hope you enjoy listening to this episode, I know I really enjoyed my chat with Ryan!
Ryan was one of the first people I spoke to when I joined the online MD community and he welcomed me with such enthusiasm and kindness!
In this episode, Ryan talks about his journey to a diagnosis in his early 20s, family life, and much more!
#disability #musculardystrophy #awareness #podcast #viralvideo #cardiomyopathy #disabilitypodcast #lgmd #disabledcreator #disabledpodcast #family #community
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Part 2 is here of the wedding series!
I am really appreciative of how excited you have all been to relive my wedding day with me, thank you so much for all of your wonderful messages and comments!
This second part dives into what it was like navigating my wedding day and managing my disability. It looks at what I was nervous about and what I put in place to reassure me. Whilst also discussing how I felt using my wheelchair for parts of the day!
I hope you enjoy this episode and that anyone else who may be able to relate to my own worries can find some comfort in my suggestions :)
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The Big Day!!
I am so excited to bring you with me on my wedding journey :) this is going to be a two part series. Part 1, will focus on the build-up, logistics and exciting moments of my wedding day.
Part 2, will focus on what it was like being a disabled bride, the adjustments I made, advice for other disabled brides etc.
I will be uploading this episode to my YouTube channel and will be adding in clips of the big day!
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Welcome to Episode 24!!
I am joined by Author Tiffany Yu to talk about her incredible story that inspired her book "The Anti-Ableist Manifesto" and the fantastic disabled projects she has helped to fund through her foundation work.
Tiffany's book is available to buy via her website www.tiffanyyu,com
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I am so happy to have Hope back on the Pod! So many listeners really enjoyed our first episode together last year and we have both had quite a few hurdles to tackle since then.
It seemed fitting that we reunite and round off our difficult chapters by debriefing and sharing our feelings together! Often sharing your difficult times can be a way of processing everything and finding a way through the difficult chapter.
Thank you to Hope for being wonderfully transparent and thank you to everyone for listening and helping create a safe space! :)
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Hiii!
I am super excited to be joined by Nina Tame for this episode.
Nina wears many hats, one of them being passionate about using social media to tackle societal views on disability and ableism!
During this episode we talk about our experiences with ableism, awkward interactions, setting boundaries and social media!
PSA: it wouldn’t be a podcast episode without my sausage dog causing chaos 🥴 I apologise for the excited cries in the background and squeaking dog toy! Bobby has lost his podcast privileges and will no longer be present during filming 🤣!
Also, we struggled with some technical issues during filming, so I apologise for the choppy moments and the distorted picture midway!
#podcast #ninatame #disabilitypodcast #duet #awareness #interview #musculardystrophy #viralvideo #ableism #disability #socialmedia #viral #trending
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You asked and so you shall receive!
I am really excited to share my little story time all about my recent hen do! I am enjoying being able to share different aspects of my life on this podcast and not just focus solely on my disability. Muscular Dystrophy is a part of me but it is not all of me and that is something I want to try and display more on this pod!
Let me know what you think of this short but sweet episode and what parts of the upcoming wedding you would like to hear most about :)
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Episode 20 is an exciting one!!
In this part 1, I am joined by the talented Danny Kurtzman to chat about his Journey of self-love, his incredible film "Good Bad Things", and his FSHD diagnosis.
This is a two part episode, this initial one is prior to me watching Danny's new film and we will do a part two once I have watched it!
Enjoy :)
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I really wanted to do an episode where I talk about my journey. I realised I have never really properly shared my journey with LGMD1B and so I thought why not get to know me!
I want you to get to know the person behind the podcast!
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Episode 18 - Wow that has come round quick!
This episode dives into the hurdles around flying with a disability and ways we think this can be improved.
We also discuss the latest Traitor series (spoiler alert if you haven't finished!!)
As well as our individual Therapy journeys.
Have a little watch with a cup of tea and a biscuit - oh and if you haven't already, please leave a 5 star rating of the pod!
See you next week :)
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Episode 17 is all about movement and the impact it has on our health! By movement, we mean moving to the best of your ability and what is comfortable/safe for you!
I am joined by George Pollock Jr who has FSH Muscular Dystrophy and has been a passionate cyclist for most of his adult life. George has used this passion to create a strong community that fundraise regularly for research into FSH and Muscular Dystrophy as a whole.
I was really inspired by George’s positivity and his dedication to helping others move safely!
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I am really excited to share this episode with you all.
I am joined by Liv Ruston to talk about how fashion could become more accessible and Inclusive. I met Liv through her Mum and Sister during my younger years in Hospital. Liv is a young carer for her sister Jess who has complex needs - Liv offers insight into her experiences and shares valuable advice for other young carers.
Liv is a fashion student at University in London and is very passionate about how fashion can become more inclusive for disabled people. As someone who is obsessed with clothes, I really enjoyed being able to discuss this with Liv and hear her exciting ideas for future designs.
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