My name is Ian, and I was diagnosed with the rare disease HSP about 20 years ago. In those days, there was no support group in Australia.
The knowledge I gained about the disease at the time was found on the internet relating to overseas information, mainly in America and Belgium.
I am now 66 years of age, and am wheelchair bound. Not only has HSP impacted on my mobility, but I also have significant bowel and bladder issues.
As a result, it would be easy not to exercise. But I have chosen to keep myself as fit as possible. I love my hand cycling and have several recumbents both hand and leg powered and electric assist.
I love to tinker down in my shed and building my own hand cycles. I am a cycling club organiser and go out riding once or twice a week. Sometimes there are early starts to beat the heat, but the natural high experience and social interaction make it worthwhile.
I enjoy my rides from Enoggera to as far as Samford, Shorncliffe and Redcliffe.
Inside activities include playing computer games and watching motor sports on the television. I also enjoy watching Netflix in the afternoon with my treasured wife, Narelle, of nearly 43 years. I also have a beautiful 17month old granddaughter who I adore and am blessed that I am able to see her frequently.
Narelle and I are fortunate to be on the NDIS. We have been blessed to have 3 wonderful support workers who come into our home and help us each day. We also have community access time where we can go on outings. We have been for short term accommodation stays at both the Gold and Sunshine Coasts with the assistance of a support worker who drives our car and cares for us for the duration of our 2 night stay.
I am a firm believer in “life is what you make it”. There are always going to be challenges, and some days are harder than others. I live in hope that there will be a treatment or cure available for HSP one day, perhaps not in my generation, but in the generations to come.
Congratulations to the Australian HSP Research Foundation, established in 2005, for the amazing work that they are doing.