I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms.
The only question I had was, “Will this lead to me being in a wheelchair?”
The answer was one she must have regularly opined: “No one knows. Possibly.”
The mantra “use it or lose it” was also trotted out. It’s true to an extent, but I’ve found that however much I use it — there comes a time with this disease that you will lose it. All you can do is keep going as best you can. I’ve recently been seeing a neurophysiologist, and she’s given me a regime of exercises I can apply in my present state. So, yes, I do accept I can keep going better for longer if I put in the work.
If I put too much work in my dead right leg jumps up and down with clonus. I let it. I figure it’s getting some exercise. I can stop it by changing the angle of my leg, but I think it’s a bonus having it go at it without any thought from me. A sort of inbuilt body vibration machine supplied by my neurological condition.
Six years ago I was forced to accept I had to use a wheelchair. The emphasis is very much on the word “forced.” We were going on a family day out — an all-day music festival in central London to celebrate the end of the London Olympics. We booked a taxi to Hyde Park, and I grabbed a camping chair in case I got tired.
The site of the festival was about a mile into the park. I was never going to make that distance. There were innumerable electric buggies buzzing around, but they were for the staff — and not insured for the disabled. The mantra of the Olympics had been about accessibility, but as soon as private enterprise got involved, it was every (as Star Trek now politically-correctly puts it) person for themselves.
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I made a considerable distance toward the end by going a few yards then collapsing into the camping chair. I’d recover, then give it another go. Irate phone calls to the organizers followed. I was incensed, as we’d shelled out for incredibly expensive VIP tickets and it looked like I would be marooned in a park! I would have sent my family on without me — see, very Star Trek.
Begrudgingly, they sent out the one wheelchair they had from the medical tent, which I adopted for the day. Up to this moment, I’d never needed a chair, though years before, during a long family walk in France, I’d just stopped. My wife had to fetch our car to bring me back. Luckily I’d collapsed by a country lane. If I’d been in the middle of the woods who knows? Can you get mountain rescue in a glade?
This morning, I had my first meeting to get a powered chair. Two years ago, I was playing wheelchair tennis. Now it can take an age to get between the living room and the kitchen. It also turns out there are laws in the U.K. that just aren’t known: you can be breathalyzed in a power chair, and if you end up on the road and use your phone, you can be fined. What’s really galling is that if you have a driving license, these infringements are set against it. In theory, you could lose your license for a year just for going to the pub!
Everywhere I go, especially for my innumerable medical appointments, I am courteously invited to “take a seat.”
I equally courteously reply: “It’s all right — I’ve brought mine with me.”
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