In 2017 I was diagnosed with MSA, a variation of Parkinson’s. I was 40 years old.
At the first stage of diagnosis, it wasn’t that bad, and I could do most things. But, over time it progressed, and I am able to do less and less. I was a keen swimmer and cyclist, but I can’t swim anymore; I don’t have the coordination required. My cycling is restricted to an indoor trainer.
My wife and I and our 5-year-old son moved to where my parents and family live for extra support.
My neurologist recommended Parkinson's New Zealand as a support network, as there is no formal group for MSA.
I was most grateful because you can really feel overwhelmed and alone as the condition changes your life.
When things started to worsen, I reached out to Parkinson’s New Zealand.
The educators who have supported me have been very thorough, especially when it comes to health professional referrals.
I now get support from a speech therapist, physio and occupational therapist.
Without the educators help and knowledge I would still be waiting to get support, so Ican maintain daily skills.
My Parkinson’s Educator will ring me to see how things are going. She checks in to see how I am managing my symptoms and if I am getting the right support.
It really shows that someone cares.
Bronwyn has recommended some groups to go to such as boxing classes, which I attend. The people there are really lovely, very inclusive.
My wife has also felt the support of the educators as they have called to check and see how she is and always offered their help at any time, if needed.
I also got support and managed to seek counselling to help manage the huge change the condition has put on me mentally and physically.
Without Parkinson’s New Zealand it would be much harder for me to get the help I need.
I know that Parkinson’s New Zealand will find the right support for me and my family whenever we need it.