Sticky Post

Rolling Out Into The New World | Shielding with Muscular Dystrophy During the COVID Pandemic

Talking through my concerns as shielding drew to an end, the extra challenges disabled people face in the COVID era. What was it like coming out of hiding after 5 months? Read to find out… Continue reading Rolling Out Into The New World | Shielding with Muscular Dystrophy During the COVID Pandemic

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

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

100,000 Genome Project | Answers for Ava

(Title Image: Photo of Ava and I reading a book, coming off a strand of DNA) Yesterday Ava had her annual physical exam at St Mary’s, Manchester Genetics department. Our old geneticist Dr Kingston had recently retired sadly, but we were transferred to the capable hands of her replacement Dr Browynn. Although we came out no further knowing Ava’s future, we came away with something we didn’t have before… HOPE. The Back Story (IMAGE: Diagram showing the autosomal dominant inheritance pattern if one parent is affected. Showing 25% probability child will be affected) If you’re new to our journey, we … Continue reading 100,000 Genome Project | Answers for Ava

My Journey Adjusting to NIV | 5 Years to Acceptance!

(Pictured: A 2 part title image. The first features a ventilator where the display screen instead of graphs and breath rates reads; “5 Years to Acceptance.” Next to it is a photo of me with my vent mask on with long tubing, over it is a comical SnapChat filter where it puts cartoon cat ears and nose on me on my vent) I didn’t think I’d ever be writing about myself using NIV (Non-Invasive Ventilation), never mind felt bold and at peace enough with it to pubically display a picture of me on it! This may in fact be the … Continue reading My Journey Adjusting to NIV | 5 Years to Acceptance!