I have hereditary spastic paraplegia (HSP) and want to raise awareness of this rare genetic disease as well as raising money for the HSP Support group.

I used to run, and have completed several marathons, but with HSP even walking has become difficult, however, I have always wanted to do a 1/2 ironman (2km swim, 90km cycle and 1/2 marathon run). This feels impossible, but recently I entered a short triathlon and expected it to be my last race, however, discovered that if I cycled first it enabled me to run. Now the running has become very difficult even after cycling, so the 1/2 marathon will be a long slow walk (around 6hrs rather than 1hr 45min).

I am viewing my training journey as the key part of the challenge, the more I try to do things, the slower the progression of HSP. I may not be able to do the 1/2 ironman, but I'll never know without giving it a try.

What is HSP? It is a neurological condition where messages do not get through to lower limbs. I waddle around like a penguin, as I forget how to walk without consciously thinking about it. Standing up takes complete focus and carrying anything is difficult. I can manage one cup of coffee, but don't ask me to carry two.

I am not looking for sympathy, I love a challenge and I have very mild HSP relative to others. I only became aware of the HSP in my 50s and I have cycled, swam, run and climbed mountains up until then - and I still hope to be able to do all of these to a lesser extent. However it would be great to help others with HSP. The support group offers support through local groups and meetings, helps patients with acquiring essential mobility aids such as wheel chairs and contributes to research. (https://hspgroup.org/)

Any contributions will be gratefully received. Please let others know to raise the awareness of HSP.

Thanks

Trevor