I am 65 years old and have SPG 4 which is slowly progressing and I now need to use 2 walking sticks to move around. I didn’t start feeling the effects of HSP until I was well into my working life but, even then, progression was slow and I didn’t know what it was.
I was born in Albury living on farms there and at Gunnedah in North West New South Wales until going to University. Farm life with five brothers and sisters was great and, while somewhat isolated, it meant you were faced with a variety of different tasks and fun activities. There was never a dull moment. I loved running, bushwalking, horse riding and hunting on the farm and would play team sports such as cricket and rugby league in town on weekends.
I married Dianne in 1980 and we have two boys who are now married. We were all very concerned wondering if the boys carried the HSP gene. Before starting their families, they were tested to see if they had it. Happily, both were negative. One son now has a daughter and the other one is expecting a little boy any day now.
My career in education began in 1978 which gave me the opportunity to move to different towns around the state of NSW, which I loved. I had no obvious signs of HSP and being involved in sport was a great way to exercise. Basketball was a regular pastime but my stint at AFL was short lived as I just couldn’t kick far enough. I took on golf with more success and kept playing that until HSP put a stop to it.
Sadly, I was medically retired in 2009 as I was unable to do my job safely. This led to finding a new direction and I was offered the opportunity to teach seniors how to use computers.
I had hand controls installed in the car allowing me to be independent for travelling. An automatic boot opener assists me with my walker and wheelchair.
When I moved to Wollongong for work, my HSP steadily became worse. I was diagnosed at St Vincent’s Hospital in Sydney by a neurologist. I now visit Royal North Shore Hospital where some great doctors with knowledge of HSP are still helping me today. I started receiving Botox in my legs to reduce the stiffness.
I have slowed down a bit now but still want to keep as active as possible. I still teach computers to seniors and am a member of a local service club. Having a garden is a very good reason to go outside to get busy. I do exercise daily and having a pilates machine and a recumbent exercise bike. I am very fortunate to be in the NDIS and receive excellent help from support workers regularly.
We would now like to start to travel again but will be reducing the distance travelled to keep the time away down to a few days as I find being away from exercising causes my leg muscles to stiffen. It means that you plan the holiday carefully. It also helps to have a terrific wife to push when it becomes too steep for the wheelchair.