Hi, my name is David. I grew up in Canberra. I have led a somewhat normal active life, but HSP has now very much slowed me down. When I was about 15 I had surgery on my right foot to treat a condition known as Pes Cavus. I didn’t understand at the time what it was all about, but in short it was supposed to help with my abnormally high arches. They released a lot of tendons and cut me up somewhat (I still have the scars) but generally it didn’t slow me down much. I continued to actively pursue all of the sports I enjoyed playing (footy, cricket, golf, tennis etc).
At age 26, I met my wife (a Queenslander) in Canberra and a few years later we got married. She got homesick and missed the sun, so we moved to Brisbane and we started a family. Normal life ensued and we were kept busy raising two young boys. As I moved into my forties, my ability to run started to reduce, and gradually over time my gait and balance took on some abnormality. Around the same time my wife Melissa was diagnosed with Melanoma. It had metastasised and reached her brain, however through famous surgeon Charlie Teo’s help, she had some successful surgeries that kept her well. In 2011 she suffered further complications and passed away in November. Hamish was 12 and Lucas 10. Needless to say, we were devastated.
My mobility issues continued to get worse, but I could still get around unaided. With all the cards I had been dealt, I was determined to fight the good fight and stay strong for my boys. I had appointments with various Neurologists over the years and have been told that my symptoms align with that of HSP. Gradually over the years, I sought to learn more and joined various support groups and also sought confirmation through a gene test. My frustration has grown over the years as ongoing attempts to visit or revisit neurologists has proved difficult and the wait for my gene tests (which was expected to be 3-6 months) took well over a year, and came back as negative for the current “known” mutations. My GP suggested I still present clinically for HSP, so advised me not to dismiss it. More recently, the degeneration has picked up some pace and is starting to slow me a good deal more. The accompanying fatigue is the most debilitating aspect however. I continue to work full time in a high pressure job, which is becoming more and more difficult. Thankfully I get support from my employer, and they have made arrangements to help where they can with my mobility issues.
The boys are now 21 and 19 so it is all happening. For me the difficulty is in the “unknowns”, which makes it’s so hard to plan forward. Should I keep fighting the good fight until I can no longer? Or is it time to reassess, slow down and try and look after myself a bit more? Easy answer might be the latter, but it’s a big decision to risk a lot of what you have worked so hard for with so many unknowns in the mix. The ongoing degeneration is very hard to accept and get used to. As a young man I got so used to the amazing recuperative powers of the human body, and through that I got used to being healed. But now, after seeing my dear wife fail to heal, I also have to endure another slow decline of my own ability to carry out basic day to day tasks. It makes it hard to play on positively. But that’s what I have to do. So I do. For my boys…