About two years ago when it was first suggested I should have a wheelchair, I found the whole idea upsetting to think about, let alone talk about. Now though, I love thinking and talking about my chair and how it can be improved so I can do even more for myself. My chair has transformed my life by radically improving both my safety and my sense of independence.
It’s not been a quick or easy process to get a chair that meets all my needs. The force of my motor tics, the job I do and my impulsive movements have meant finding the right balance of manoeuvrability and strength has required all the patience and skill of Maria, my wheelchair therapist, and William, my wheelchair technician.
With the current chair I think we’re pretty much there. It’s got an aluminium frame reinforced by having two poles, one inside the other. This is necessary because the power of my movements was enough to bend the back on a previous chair. The wheels are set back to make the chair more stable so I don’t tip it when I’m having a ‘ticcing fit’.
This adjustment means it’s hard for me to move around much under my own steam. I can push myself around indoors when it’s flat and the distances are short. But outside it’s very tough going, and however strong I am, I’ll always need to be pushed by someone else. While my current chair meets all my immediate needs it doesn’t quite match my wish for more independence and greater control.
I talked about this with Maria at my previous appointment. I explained how I’d love to be able to propel my chair by myself when I’m outside and that my ultimate goal would be to cruise along next to my friends and support workers rather than be pushed by them.
After some careful questioning and thought, Maria told me about some powered wheels which can be fitted to most chairs and work a bit like power-steering in a car. You move the chair in the normal way but with less effort because there are motors in the wheels that mechanically propel each push. These wheels are amazing, but they’re expensive too, over £4,000 for the pair and not available on the NHS. Maria told me she’d already discussed their suitability for me with her supervisor and they’d felt they wouldn’t be any help. But Maria thought it might be worth re-visiting this.
Maria’s parting words to me that day had been ‘Don’t get your hopes up.’ Hearing this, I instantly got my hopes up. I did a load of research online and watched all the videos I could find on YouTube. I even looked for charities that I could apply to for help with the cost. I tried not to raise my expectations too much, but I was thrilled and relieved when Maria called to say that while the Wheelchair Service couldn’t provide or fund these wheels, they could support me to determine whether they’d be a safe and suitable option for me. I know that if I’m ever going to get them, it’ll only be once she’s decided they’re safe and of benefit to me. It would need her agreement for them to be fitted to my NHS chair, and any charity I applied to for funding would need a letter of support from her.
Today I test-drove the wheels! Maria had arranged for a rep from a company that sells them to come to our appointment so I could try them.
I’d been worried that I’d set myself up for a massive disappointment and that they’d either not be right for me, or worse, that I’d love them but Maria would say no way.
Here’s what actually happened. I wasn’t able to try the wheels on my own chair so I had to use a very light, very tippy frame that didn’t even have any anti-tips or a seat belt. This was obviously not the safest set up for me, but I tried them and I loved them – they felt like magic.
The wheels can be programmed to different sensitivities and they were set to be very sensitive, needing only a very light touch – I could move them with just one finger – and I would obviously need them on a much less sensitive setting. Leftwing Idiot, Maria and William all tried them out too. Leftwing Idiot observed (with surprise) that I controlled them better than any of them.
The thought of what these wheels could offer me was hugely exciting, but there are things I’d need to be much more sure about before making such a huge investment. I’d want to be confident that the benefit I’d get from them would justify the expense, and that they’d be safe, and it was hard to gauge either of these things by testing them on a chair so different from my own.
The outcome of today’s trial is that neither Maria nor I have ruled the wheels out. We’re going to move tentatively to the next step, which will be to try them on own my chair. This’ll be logistically complicated and the rep still needs to confirm if it’s even possible.
I need to assess what difference the wheels would make day to day. I can’t be sure, but I suspect that they’d improve my experience of using the chair in lots of small ways that would add up to a feeling of much greater independence and control. I know from previous experiences with different wheelchairs that what might look like a very small gain from the outside can feel like a monumental improvement to me.
While I wait for the next trial to be arranged I’m aiming to try some other activities and chairs that will give me a new sense of freedom. For example I plan to go cycling with the accessible cycling organisation Wheels for Wellbeing, to try a Mountain Trike in the Forest of Dean and to have a drive at the go-kart track at work. These experiences won’t offer the same sort of independence that the power wheels could, but I do feel the need to explore all the ways I can of meeting my craving for more mobility.
I’ll keep you posted.