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MICHELLE’S JOURNEY WITH FSHD was not true and it was indeed 50%. I wondered how someone could get something so crucial so wrong. One neurologist I detested, but I changed tack and found one I did like, had more tests as now there was a query over my diagnosis. Nope, I definitely had FSHD, and in 2020 this was confirmed as FSHD1 – a necessary piece of information should there ever be a clinical trial I can be involved in. My early 20s saw some significant changes and all of a sudden trying to hide my condition got harder. Terrified I wouldn’t get a job if employers knew about my disability, staying silent bit me in the bum when I started falling at work and had to explain why. I decided I needed to be honest with people, and would just deal with any fallout. My walking deteriorating. Spinal surgery, foot drop surgery, 3 broken ankles from falls, a power wheelchair, a variety of mobility aids, the need for support workers to assist with personal cares, an adapted vehicle and then the inability to drive all got thrown into the mix over a 20-year period. All came with their own set of emotional outbursts. All became a blessing in their own way from reducing fatigue, making getting around easier, to taking away pain. For me, deciding not to have children because of the genetic risks, having to give up tennis and dancing, unable to give a proper hug, or driving the car to the dairy on a Me being hoisted up rigging of Soren Larsen for MDA charity event with Auckland HOG, Nov 1994. My early 20s saw some significant changes and all of a sudden trying to hide my condition got harder. wet day to get milk, are some of the sticking points of living with this condition. The simple things are the hardest to do. Today, fatigue and pain are constant companions and everyday tasks take just that bit longer. Getting older brings its own issues. However, I refuse to give in just as I refuse to let my disability define me. I get frustrated and angry and I yell and cry. And sometimes I talk to the right people. Then I move on. Life, however difficult, has much to offer. I married an awesome man, have travelled, ridden pillion on the back of Harley Davidsons, have an amazing service dog, and attended university. I graduated with a PhD in medieval history at 40, and became historian/curator of a community museum, a job I loved and where my disability sat well in the background. Now I work for myself as an independent historian in the Hawke’s Bay. Having FSHD is not all bad. Because of it, I have experienced some amazing things and met some amazing people. But in the end, it is family, my home, travel, work, my service dog, friends, cooking and wine that fill my life and make me happy. Sadly, NZ’s health system and its disability services are not always up to scratch, and many find the whole thing difficult to negotiate. Time spent repeating oneself to various professionals is tiring and often emotional, and usually we know more about our specific condition and how it affects us than the person we are speaking with. My GP, neurologist and urologist are my key health professionals, although I occasionally see an OT, wheelchair therapist and physio when required. It’s all about maintenance rather than any real intervention these days. The biggest challenge is finding Continued over ... DECEMBER 2022 InTouch | 11 got slower, stairs were difficult, I had terrible foot drop and fell a lot. At age 21 I had to get a walking stick. This was hard to accept but I didn’t have a choice especially when having fallen people stepped over you and left you lying there. I needed to show there was a problem and help was required. A manual wheelchair appeared when I was 25, and was duly relegated to the garage where it sat gathering dust. I worked for MDANZ and then CCS trying to make a difference and using my voice to influence and encourage professionals to think outside the box when dealing with NMCs, and treating people with disabilities more equitably. But I got a bit burned out living, breathing, working disability especially as my own condition was