I grew up in Enoggera Brisbane and still live in the family home which I bought from my mum 32 years ago. I have one sister Gayle. My dad died when I was 16 years old. I am married to Narelle and have two children Lisa 21 and Benjamin 17. I  was a panel beater for 13 years and then worked as a technician in Telstra for 23 years then became redundant. I am on a disability pension and my wife cares for me. I was diagnosed with HSP several years ago but did not get my blood tests back until January 2010. I alternate between walker and wheelchair. HSP not only affects my mobility but also my bowel and bladder and I suffer from back pain.

My hobbies are fishing, computers and tinkering down my shed. I used to do a lot of bicycle riding for fitness but am now limited to riding my electric recumbent trike. I love to get out on the bike track and enjoy the fresh air. I have modified the recumbent to suit my needs. I used to ride a handcycle that I made but with my back pain I can not do this any more.

I hope there will be treatment and eventually a cure one day for HSP. This disease has been in my family for at least four generations. Adult stem cell research gives us hope for the future.

1 comment

  1. I was diagnosed 7 years ago with hsp and the disease is progressing rapidly as now I cannot walk without walking crutches and even then I am having problems with balance. My wife has been very supportive as the disease progresses and we are presently looking into a mobile scooter as I believe my days of walking are just about over. I have been going to the gym for about 4 years trying to at least keep walking but unfortunately the disease has progressed rapidly as I age. My only hope is that someday they will find a cure

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