Ian

Posted - November 2010 in Community Members

Ian

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.

Comments on this story

  1. Mike posted at 6:15 pm on 24 November 2019Reply

    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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