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Over the last few years I’ve gone from a reasonably fit active person to someone who struggles to walk more than 20 yards. A year and a half ago it looked likely that I had Motor Neurone Disease of some sort, fortunately (in relative terms) it seems to be a rare genetic condition called Hereditary Spastic Paraplegia (HSP), as yet I’m not officially diagnosed but talking to other people with the condition the symptoms match closely.
If I’m going somewhere where I can’t drive I generally use a bike, I can still ride a few miles on the flat, but where that isn’t possible it’s out with the wheelchair, which is very difficult to push myself in and I rely on my wife a lot. Yesterday I visited a company that will custom make me a chair that is light and manoeuvrable, I tried one that they had as a demonstrator, and even tho’ it wasn’t designed for me it was like going from riding a £99 supermarket BSO to high-end carbon bike. It’s about £3 ½ grand but that’s the price of a good bike and I’m lucky that I can afford it. Now to work on my upper body strength and away we go, a whole new sport beckons.
I met one of the directors of the company that makes the chairs, he is the driving force behind them moving into sport wheelchairs, I’d heard of wheelchair rugby and basketball but wheelchair dancing, wheelchair boxing were new to me, there’s a young woman who was on the HSP Support Group zoom call who is women’s WCMX (like BMX tricks but in a wheelchair) champion, she directed me to the company. I’m not going to be doing wheelchair backflips any time soon (ever) but the new possibilities have put a smile on my face and I’m looking forward to the future for the first time in ages.
I’ve posted about my problems on here before and got a lot of support, this forum can be full of self-righteousness and petty bickering but when the chips are down pretty much everyone on here is a decent person. I thought I’d share some good news for once.
If this is TLDR then: I used to be active, then I became disabled, now I’ve found I can do wheelchair sports. Hurrah!
Hurrah!
I'm sorry to read about your health struggles OP, but am very happy to read about your new chair and your positive outlook is inspirational - all the very best!
Glad to hear you've managed to find some positives, all the best for the future
Cool, don't forget to post some pictures when you get it. Will it have go-faster stripes 🙂
That's excellent, sounds like exciting and fun times ahead 😎👍
Great news!
You must do a post on the new chair, love to know more about it.....
Excellent news. I look forward to the crash videos
It sounds like an ebike might also be beneficial to you? have you tried one?
Inspiring stuff and bought a smile to my face. Have you seen Martyn Ashtons TED talk. Similarly uplifting 🙂
Thanks all, it's an 8 week lead time to get the chair and the process won't start for a few weeks, so photos will take a while.
Good idea julians. Ebike is next on the list to buy, it might have to wait a bit as we're trying to move house and I need to save as much money as possible. Ebike would be nice but a good wheelchair is a life changer.
Excellent news.
So where do you go for debates about 'what tyres for...?" And will you be going tubeless?
Excellent news for you, OP. I can imagine upgrade-itis on a wheelchair being similarly addictive to doing it on a bike. Next thread:- "What (tubeless) tyres for my chair?"
It is shit being in a chair but a descent powered one really does change the whole game. There are so many new options. This was me in a borrowed BOMA shortly after snapping my foot off. It is still in bandages and cast with a plastic bag wrapped around it to keep it clean if you look closely.
I don't know where you are based but if it is anywhere near Southampton just give me a shout and I will lend you my e-Bike for a weekend so you can see what you think of them. Again, a real game changer as suddenly i was able to ride with my friends again rather than being a dead weight at the end of the group. PM me if you want.
Fantastic you have found a solution to keep you going
A year and a half ago it looked likely that I had Motor Neurone Disease
Well that Sucks.
it seems to be a rare genetic condition called Hereditary Spastic Paraplegia (HSP)
but that sucks slightly less. Having been on the receiving end of a diagnosis (nothing like as serious as yours) finding things you can do is something I've realised is important. For me this involves walking with poles but I'm lucky as I can still ride bikes.
Good to hear that you finding ways to keep active though.
WCA, that BOMA looks great. but please stop showing me amazing things or I'll spend all my money on more gadgets!
This is Lily who I talked to on the zoom call. Great story.
https://www.bbc.co.uk/sport/av/disability-sport/51031189
Titanium? steel? alu? What wheel size? and of course what tyres?
Good luck and don't forget the go pro mount so we can see the crashes! Admire your outlook and keep us updated 🙂
Chris King headsets, discs but lacked top end speed and comfortable suspension.
If it was going to be long term anbd I could afford it I would try and get something like this : https://notawheelchair.com/
@HughStew - love the positivity in the post, wishing you all the best
loving also how this thread has turned into a gadget fest - good work people! 🙂
When my son went for his last wheelchair fitting he asked if he could do WCMX on it- the look on the assistant's face was priceless. Unfortunately his CP affects his arms too so h hasn't the reflexes or range of movement to do it. He looks the freedom his Ice trike gives him- they do electric versions as well.
Great News OP.
I don't really have a grasp of how mobile you are, or will be.....but have you seen the Bowhead?!
As demonstrated here, by that absolute lunatic Martyn Ashton:
And this STW podcast from the creator of the Bowhead is well worth a listen, whether in need of such a vehicle or just for a great listen:
https://singletrackworld.com/wp-content/uploads/2021/03/podcast-bowhead-corp-making-bikes-for-life/
Where's that damn like button?
Nice one OP.