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The remarkable thing about this session is just how unremarkable it felt. I had a physio gym session with my physio and my carer, two people keeping a close eye on me, making sure I stayed balanced and safe.
As I’ve mentioned recently, my ability to see goes from time to time, with increasing occurrence. Often it is triggered by moments of activity, such as exercise. Yesterday, almost from the first minute of starting exercises, my eyelids clamped shut, not because of my eyes, but because of my eyelids themselves, closing for at least 75-80% of the session, and on the whole wheelchair ride home.
We were careful and deliberate, and it was a good session. But the fact that I was lifting weights and doing exercises completely blind, and then had to figure out where my wheelchair was just to get back to it, is simply insane.
That I have a carer and a wheelchair, I’ve come to accept. That increasingly significant stretches of my day I experience Involuntary Eyelid Closure a.k.a Blindness, that’s still pretty hard to swallow.
There may be a solution coming on May 13th: botulinum injections (Botox, to you and me) into my eyelids, needing to be repeated every three months. It’s not without downsides and potential side effects, and the thought of multiple injections into my eyelids is not exactly appealing. But if it works, it’s worth it.
What amazes me, as I said at the start, is that this feels normal now. As the expression goes, I hardly bat an eyelid when thinking about it.
PSP is horrific, and this is one small case study from the patient’s view, one small example of how things have changed in such a short time. I am not looking for sympathy. In fact, I have accepted my situation, and the exercise itself was good for me. But this is a glimpse through the window of the patient, and into the ferocity of this disease, even though the storm of full-on PSP has not even shown itself on the horizon.
