Dystrophy Diaries

Welcome to episode 40 (I can’t quite believe it!) I’m sorry I’ve been a bit MIA lately, I’ve had a few personal things to manage - but I’m back now and can’t wait to get back into the swing of filming 🤍 First up, is this episode featuring Ross Hovey! You may know Ross from LinkedIn as he is a powerful voice in the world of workplace inclusion and disabled advocacy. Ross has Spinal Muscular Atroph...

What an episode to share! Meet Hannah, you may know her from her social media page ‪@heartcharged‬ that she created with her sister Bethany! Hannah and Bethany both have cardiomyopathy, with Hannah having suffered a cardiac arrest at age 17. They created HeartCharged, a nonprofit that helps to advocate and support for the cardiomyopathy community! I had such a lovely chat with Hannah and felt so g...

Over the summer, Alex joined me on my podcast to chat about his neurodivergent journey and what advice he would give to people about how best to support people like himself!

Welcome Emma Partlow - disability advocate and a powerhouse in the world of disabled travel!

This is a special episode to chat about LGMD awareness day and also muscular dystrophy awareness month. If you enjoy this episode - please like and subscribe xx

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”...

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 usi...

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 #p...

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.

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!

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 o...

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 employmen...

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!

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 #cardio...

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...

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...

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

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...

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...

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...