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10 | InTouch DECEMBER 2022 My FSHD journey began back in 1983. I was fourteen. Not a great time in life to be diagnosed with an incurable, progressive condition. Teenage years are full of enough angst and problems, never mind adding something completely unknown into the mix. Having moved from Scotland to England two years prior to my diagnosis, we found ourselves in the hands of a no-nonsense GP. I had been falling a lot, my shoulder blades were sticking out and raising my hands above my shoulder level was becoming increasingly difficult. In fact, I had been smacked over the back with a ruler by the PE teacher because she thought I was messing about, and in athletics it had taken me 16 minutes to complete 1500m! The GP initially thought mum was being overly dramatic until I took my shirt off. I was asked to dress and then sent out the room while she spoke to mum. I was sent out the room a lot in those first 3 years. My parents only told me what they thought I needed to know but this only left me desperate to know more (no internet then). It was just the way it was. The next few months were spent seeing a number of doctors without much success. Dad was given the name of an excellent neurologist in Manchester and after a barrage of tests, including a very painful muscle biopsy, consultation with a geneticist (no family history), we finally had a diagnosis of FSHD. Suddenly things fell into place, not only the falling and YOUR CONDITION IN REVIEW Michelle shares her inspiring story with In Touch and tells us why she refuses to let her disability define her. Michelle’s journey with FSHD Top : Blair and I and service dog Leah, Wellington 2016. Above : My 40th birthday – a medieval party. Me and Blair. difficulty raising arms, but also the inability to close my eyes properly, give a beaming smile (photographs are my nemesis) or whistle since I was a small child. Told to stop all sporting activities (enter one annoyed PE teacher), I was only allowed to walk and swim. So different from today, where those newly diagnosed are encouraged to do as much as they can for as long as they can. The next few years were spent having twice-yearly visits to the neurologist, visits to an orthopaedic surgeon who did scapular fixation surgery on me when I was 16 (suddenly I could put my hand up in class, and reach those things on a high shelf ), and generally getting on with teenage life. After a while, I did not talk a lot about my condition and never told new people, especially potential boyfriends, that I couldn’t run or that climbing stairs was tricky. I was aware needing a manual wheelchair was possible in the future – the neurologist said maybe when I was around 40 – and that my condition would slowly get worse, but it was all so far off and hard to imagine. In 1989 we moved to NZ and had to start the process of trusting new health professionals. Some of my earlier experiences were not great and one geneticist told me I had only a 10% chance of passing on my condition to any children. Unsure of this, I wrote to my English neurologist who assured me this