Photo of a Mercedes Sprinter with tail-gate wheelchair ramp deployed with a wheelchair user icon with long hair boarding. In the passenger window is the emoji family to represent my partner and two little girls. Above the van is a childlike drawing of a rainbow and sunshine.

First Driving Experience|Motability Journey

Part 2 of my Motability Journey series. In this blog I get behind the wheel for the first time in my life, being plunged in at the deep end with a beast of a WAV (wheelchair accessible vehicle) and am assessed on my capability to drive with high tech controls as somebody with a progressive, muscle-wasting condition. Do I pass or fail? Read to find out… Continue reading First Driving Experience|Motability Journey

Physio After 18 | The Neuromuscular Centre Part II

This post is part of a mini-series that focuses on Physiotherapy for individuals with muscle-wasting condition, transitioning from children’s to adults services at age 18. I recommend you read *Part I* to gain a better insight to this topic. I left off in Part I briefly touching on the light at the end of the tunnel for many in the North of England and that is The Neuromuscular Centre!   The Neuromuscular Centre is a non-profit organisation based in Winsford, Cheshire that provides a centre of excellence in Physiotherapy for young people aging out of the system with all sorts … Continue reading Physio After 18 | The Neuromuscular Centre Part II

Physio After 18 | Incurable muscle-wasting conditions ¦ Part I

Here in the UK on the NHS, physiotherapy for progressive muscle-wasting conditions stop once you reach age 18. The way it was told to my parents was that the NHS could no longer justify the cost of weekly/fortnightly therapy that would never better the young persons ultimately incurable condition, despite if maintain physiotherapy benefited the individual in some shape or form. Here’s my story trying to re-access this vital therapy… Continue reading Physio After 18 | Incurable muscle-wasting conditions ¦ Part I

My Rare Complications from Scoliosis Surgery

*SENSITIVE CONTENT* I open up about the rare lifelong complications of my Spinal Fusion surgery I underwent aged 14 for severe Scoliosis. When the chronic pain began exactly, how it’s changed over the years, what my medical team and I have trialled to manage it, aswell as coming to terms with the very real likelihood I’ll live with it for the rest of my life. Continue reading My Rare Complications from Scoliosis Surgery

How My Parents Told Me I Had MD

(Title Image: Childhood photo of me during Physio, standing with a walker) I don’t recall a clear cut day that either of my parents sat down to break the news to me, “Fi, I’m sorry to have to tell you this but you have a muscle disease.” I guess that’s how one would expect to be given such a revelation thanks to the movies! No, I always knew. My parents were very open about my condition. They’d told be bits and pieces (age appropriately) from since before you retain memories, mainly before age 3 I believe. There was no way … Continue reading How My Parents Told Me I Had MD