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12 | InTouch DECEMBER 2022 MICHELLE’S JOURNEY WITH FSHD health professionals who have some knowledge and understanding of your condition, or who are keen to know more and will listen rather than impose their textbook reading onto you. When you need them, finding good support workers is important. These are people you rely on every day. And, consider individualised funding so you have more control – I am a real advocate for this now having spent years terrified of a process that is actually easy to navigate. Better than arguing with the support worker agency when they fail to provide the services you need. Use the MDA for advocacy and support if you are feeling let down, or don’t have the energy or capacity to speak for yourself, and remember you have the right to change personnel and/or providers if you are unhappy (although this is not always possible in under- resourced areas). Over the years I have dipped into the reservoir of services the MDA offers, especially around information about this condition and health services. There were physios, OTs and annual reviews when I joined the association in 1991. I have made some lovely Abseiling in wheelchair down 30ft wall, 1994. The past 40 years have taught me to surround yourself with people who will support and encourage you, be well informed and ask for help when you need it. The Bradley Jenkin Memorial Fund helps MDANZ members with a neuromuscular condition receive funding for access opportunities and specialised resources that enable them to achieve freedom. The fund has helped members purchase specialised sports The Bradley Jenkin Memorial Fund Applications close Jan 31 • Apr 30 • Jul 31 • Oct 31 For criteria, info and to apply, go to www.mda.org.nz > What We Offer Funds must be spent within three months. equipment, participate in sporting events, it has contributed towards the cost of obtaining a mobility dog, provided mobility equipment, and assisted with career development such as university and course fees. friends through my connection with the organisation, who provide support and guidance when needed. Having worked for the MDA, I am lucky to have a vast knowledge of what is out there and how to work within the health and disability system. As a result, I probably do not use MDA’s services much now, but the newly-formed FSHD facebook group is one way I stay connected. That said, I know MDA is always there should I ever need any support now or in the future. The past 40 years have taught me to surround yourself with people who will support and encourage you, be well informed and ask for help when you need it. And, you are allowed to have rough days and to say you are feeling like crap. You don’t need to put on a brave face as it helps no-one, least of all yourself (best piece of advice I was ever given). Finally, do the things you want to do. They might not always be easy or straightforward, but with a little foresight, planning and help … anything is possible.