Dystrophy Diaries

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 sho...

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 :)

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!

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 ratin...

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 M...

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 s...

I am joined by Issy who has Cerebral Palsy, and was inspired to educate others online after she faced discrimination for her condition. We discuss how Issy fought back and used her experience to help others and raise awareness of living with a disability. We also talk about how going to University helped us gain confidence as well as independence, and what it was like learning to drive with our di...

Katharina is a social media creator from Germany who has LGMD, she uses her large platform to raise awareness of life with LGMD and also showcase her passion for fashion. In this episode, it was so interesting to hear her personal journey with LGMD and her perspective on upcoming treatments. We also discussed the differences in healthcare and support available in Germany and the UK.

I am joined by Chloe Docker to discuss her upcoming role with MDUK, exciting research happening, marriage and many other topics. Watch our episode to find out more :)

In episode 12 I am joined by the Charity Joining Jacks, very own Jack Johnson to discuss all about the work he is doing within the DMD community, future aspirations and his experience as a disabled athlete. Jack has accomplished a lot within the world of sporting at a young age and is very passionate about helping other disabled people immerse themselves in the world of sports! I really enjoyed le...

The world of employment is a minefield at the best of times but add in a disability and it can be quite overwhelming! That’s why I wanted to do this episode to outline the positive examples of disabled people building careers, support that’s out there, and what to do if you feel you’re struggling. I’m joined by Jack McLellan from Muscular Dystrophy UK who is their employability officer! Jack tells...

Welcome to episode 10 (double digits!!) This is a very personal episode that I wanted to share after a lot of messages and questions about what is TPN (parental nutrition). In this episode I talk about my long journey with nutrition and feeding and how this impacted my relationship with food. I wasn’t able to upload the video version of this episode on here but I have uploaded a video attached wit...

For this episode I’m joined by Cerys who is a fellow Limb Girdle Muscular Dystrophy girly, where we chat all about our differentiating abilities, sports day memories, supportive partners and our mission to help others! It was wonderful having Cerys on and being able to hear all about her journey and the incredible work she is doing within the muscular dystrophy community. Cerys has her own podcast...

In Episode 8, I am joined by Joe Aka DystrophyDad. We talk about his experiences with employment where he is helping tackle accessibility hurdles. We also discuss Joe’s recent opportunity to take part in a clinical trial and what inspired his passion for poetry! 
 Joe has published a fabulous poetry book, if you’d like to take a look then follow this link: https://dystrophydad.com/joe-logue-writes...

Episode 7 is here! I’m joined by Dr Tye Martin, to discuss his journey to his PhD and navigating his muscular dystrophy diagnosis! Tye has achieved some incredible things all while raising awareness and advocating for the muscular dystrophy community! I really feel I learnt a lot from Tye and can’t wait for our Part 2 episode over on his platform! #Musculardystrophy #disabilitypodcast #disabledpod...

I am overjoyed to be joined by Gabby Logan, television, radio and sports presenter, as well as the President of Muscular Dystrophy UK! It was a fantastic opportunity to discuss the condition whilst also highlighting the important work MDUK do! The episode speaks for itself really… give it a watch!! ✨❤️

Episode 5 is here ✨ welcome Maya to the pod! Maya is known on TikTok as Mayasquashingtoes and has accumulated a loyal following thanks to her day in the life videos and makeup tutorials! Maya has Spinal Muscular Atrophy and has been in a wheelchair since childhood. In this episode, Maya and I discuss her TikTok journey, how we’ve adapted things around our disability but most importantly, how happ...

In Episode 4, I am joined by my friend Hope who I met via Cardiomyopathy UK. We both have different forms of Cardiomyopathy and wanted to shed a light on what it’s like living with the condition. It can be a very daunting diagnosis but we wanted to show that it is possible to live a normal, happy life alongside it! We both approach it with humour, as you will see from this video, as that is how we...

I am joined by Kalvin, aka Dudeability, on this episode to talk all things life and MD! Kalvin and I discussed our journeys from being diagnosed up to where we are in life now, highlighting aspects such as accepting mobility aids, being honest with friends about our abilities and how we have adapted to our “normal”. Kalvin discusses his passion for sports and how he has kept that present in his li...

This episode looks at our personal experience of our interabled relationship and the anxieties we both felt when we first met. It examines common misconceptions about dating and disabilities while also discussing what we have personally found helpful. This episode features my Fiance Karl and even a surprise appearance from our little Dachshund Bobby (who took great pleasure at disrupting in the ba...

A discussion about navigating life’s hurdles alongside Muscular Dystrophy. How it impacts day-to-day, employment, relationships etc. Jed shares his experience of being diagnosed and how he got to where he is today, whilst also discussing his incredible fundraising for MD research.