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I have to say, I’m a complete idiot.
When I bought my last wheelchair (No. 8), I focused almost entirely on my weight and not my height. The supplier, when I asked over WhatsApp, assured me it would suit my height as well, but I never double-checked. Height matters. That, it turns out, is part of the reason I’ve been in such pain in my legs, hips, thighs and back. Squeezing into a chair too small for me certainly didn’t help. Nor did sitting in it and in my reclining armchair for so many hours each day, together with the muscle rigidity that comes with PSP. Put the three together and you have a recipe for misery.
I’m entitled to a free wheelchair from my HMO, or so I discovered last week. A physio, a lovely man, came round yesterday to assess my requirements for a wheelchair, a bed for when I need it, and a hoist to transfer me from chair to bed. He informed me in no uncertain terms that my current wheelchair is completely inappropriate for my body. Duh. I should have realised much sooner, but that’s the idiot in me.
So this morning we went to Ezra Hamarpeh, a local charity, a little like Yad Sarah for those familiar with it here, that lends out wheelchairs. A truly remarkable expert fitted me with one that is perfect for my height, perfect for my weight, and perfect in every way except that it is absolutely hideous. It looks like something hauled out of retirement from the nineteenth century to serve me until the new one arrives, but it has already made a huge difference. The staff were extraordinary. I feel much more comfortable and far less tight in the areas where the pain was worst. It will take a few weeks for the new one to arrive, but I am relieved to have a proper option for now. The new one will, incredibly, be number 10.
By my reckoning, that averages out at roughly one wheelchair per month, an impressive rate of turnover by anyone’s standards. With the treatments I’ve started, together with new pain medication for my legs, I am hopeful this chair will make a real difference. I already feel more comfortable in it. It fits.
Here is the lesson for anyone going through this experience. With PSP, everything happens at frightening speed. A wheelchair is not an accessory. It is where you live. Like the armchair where I spend hours each day, it has to be fitted properly: weight, height, posture, leg position, everything. Even if it is only temporary.
And don’t rely on a supplier’s reassurance over WhatsApp, however well-meaning. Get fitted properly, in person, by someone who knows what they are doing. My impulsiveness, my rush simply to get a wheelchair, landed me in a perfectly good chair that was perfectly wrong for me, unless, as the physio joked yesterday, I fancied chopping a few inches off the bottom of my legs.
Thankfully, the physio said that all the home improvements, apart from the recliner chair, had been managed by my wife to a very high standard. That tells its own story.
With PSP, trial and error becomes part of survival. You rarely have the time, energy or expertise to do everything perfectly from the start. Most of the learning comes only after the mistakes have already been made. So learn from mine.
Meanwhile, my wife and children now have yet another spare part cluttering the house. Wheelchair number 9 will not fit in our shelter room, so number 8 will have to stay nearby for the hopefully non-event of an emergency. Hopefully the new one will be slightly narrower, better fitting, and, with a bit of luck and the new medication, my legs will soon feel much better in it.
I used to think a wheelchair was just equipment. It turns out it is closer to a second skeleton. If it doesn’t fit properly, eventually neither do you.
Who knew there was so much to wheelchairs?
In one year, I think I have almost equalled the number of motorcars I owned throughout my entire life. That is a sentence I never imagined writing.
