Mike has set himself the personal challenge of 100 miles in one month, as part of the HSP 1000 Mile Challenge! & he is doing brilliantly!
Mike’s 100 miles will be made up of: 1 mile walking with sticks, 1 mile walking with a rollator, 8 miles in a powerchair and 90 miles on a trike. Two weeks into the challenge and Mike has been out and about, locally and further afield.
And has a new addition to his powerchair – a cup holder for his beer 🙂
Keep going Mike – you are doing great!
“Some, but not all of you, will know that I now appear to be suffering from a rare neurological condition called Hereditary Spastic Paraplegia (HSP). Basically my legs are very slow to respond to signals from my brain, and it’s started to affect my hands too. 3 years ago I was fine, but then I started stumbling and tripping in the street, and by 2 years ago I was walking around like I was drunk – even when sober!
Nearly 3 years on I can walk about half a mile very slowly with 2 sticks. On rough ground I use a rollator (a walking frame on wheels). For exercise I bought a pedal-assist electric trike. Most recently, finding the pub out of walking range, I’ve acquired a powerchair – electric wheelchair. Sadly I’ve given up flying, sold the Jaguar, and my Velocette motorcycle restoration project is shelved.
When I was provisionally diagnosed I was told not to worry, you haven’t got a life-shortening condition. Although grateful for that I’m still coming to terms with the inability to do basic things, mainly due to a lack of balance. So frying an egg requires planning and bracing myself against the worktop so I can use 2 hands. Like most people with a disability I’m finding it’s day-shortening, my capacity to do things is greatly diminished.
There is no known cure for HSP, and what treatment that can be offered is relatively primitive and limited. As it’s a rare condition (my doctor hadn’t heard of it), little research is carried out either. In the UK the HSP Support Group provides advice and help to members, provides grants for mobility equipment and encourages and funds research programmes.
This summer we are looking to both raise awareness of HSP and funds for the group by completing a 1,000 mile challenge of a virtual route from Land’s End to John O’Groats and I’m taking part. I’m aiming to complete a total of 100 miles in a month as follows: 1 mile walking with sticks. 1 mile walking with the rollator. 8 miles driving the powerchair – not easy to control, I’m glad I have some taildragger experience! 90 miles on the trike.
I’d be very grateful for any support for this, either verbal or if you can spare some cash, a donation to the HSP Support group via the JustGiving page at https://www.justgiving.com/campaign/HSP1000MileChallenge “
Comments 1
Good man. Cheers on the beers, I’m intrigued to work a way of fitting one to my wheelchair.
First I need to fit a quiver on the back, as I’m starting archery today. The Walking Group nickname for me is now ‘Sitting Bull’