Well, I’m usually fairly upbeat, but this time, it’s going to be beyond me.
We’ve all had relapses — I think I’m in the fitting cliché of being on my last legs. I can, on a good day, transfer on my own from the bed to my trusty commode. But that’s about it. There’s no getting to the lavatory anymore.
I/we are going to have to reorganize our lives. A bedroom downstairs for me, a bathroom that’s more accessible for a wheelchair, a drive designed for wheelchair access, a wheelchair-accessible vehicle (WAV). The list goes on and on.
My days of driving are over. You can get a WAV that you can drive from your wheelchair, but it’s far too excessive for the one time a week I’ve actually been going somewhere on my own (my exercise class). For the moment, I’ve put that in abeyance, too. My wife now has to fill out a 25-page form for both of us (I can’t face it!) and supply it to our local council’s occupational therapists. It can’t be done online as yet — the disabled in crises are confronted by an antediluvian world.
I’ve done what I can to fight this monster. I’ve done two courses of Lemtrada (alemtuzumab), which, believe me, is a hard, hard road in itself. From the moment the drug was infused, my mobility declined and my right hand was also immediately affected. I’m not wimping about it. If you’re lucky enough to get the chance to gamble in extremis, you take it. It doesn’t seem to have worked for me, but hopefully, evidence from my experience will feed into Lemtrada’s development.
On my recent visit with my neurologist, my MRI was good — no changes. The doctor mentioned then that if Lemtrada doesn’t work, they’ve now learned not to continue it.
Well, that’s something.
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