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My name is Sarah. I have Distal SMA.

This is apparently an even more rare version of the usual SMA! It affects the extremities rather than the whole body. My legs are very weak and mobility very limited. My hands, fingers and wrists are annoyingly weak but I’m hoping it stops there, although I do have trouble with my shoulders but at 50, this may be wear and tear. As my friends GP said to her, "you’re not getting any younger"!

The lockdowns, shielding and avoidance of the general public were the final straw for me this last year, not getting out to move about so much. I had to get a wheelchair. It took a year to sort out having initially tried the NHS wheelchair service but finding their chair was far too heavy for me to get in and out of my car. I went down the private chair route and part funded a lightweight chair myself. I was able to apply to charities for help with the funding.  

At he time of ordering my lightweight GTM Jaguar I was given the opportunity to try a Batec Hybrid Handcycle. This attaches to a bracket installed on the chair making it into a handcycle.

I decided that this would be the way forward for me, to get out and about more easily with family and friends but more crucially on my own too. I find it a lot easier to hand cycle than push the chair wheels round myself.

The Batec Hybrid has a battery, much the same as an electric bike, more of an assist. I have had my Batec since July and have been going out cycling with friends and dragging my parents out to places even though I have to keep circling back for them as I’m faster than walkers but not as fast as cyclists!  

I’d definitely recommend this piece of equipment for anyone who has use of their arms but also longs for some exercise. For anyone unable to cycle with their arms there is a fully electric model.  It is heavy and I am having a hoist installed in my car.

I would like to thank all the charities that helped me to purchase both my chair and my handcycle. It already has made a massive difference to me. I live in Cornwall by the sea and have been able to get out along promenades and tracks that would have been inaccessible otherwise. I did the Camel Trail from Wadebridge to Padstow, which was about 11 miles, with ice cream halfway! Ice cream is always my incentive.

I would also like to thank Jo Spicer, from the Outreach Team at SMA UK, who was extremely helpful to me throughout this process. She helped with applications and was always there with advice and encouragement, thank you.

First published: November 2021