>I’ve been waiting to write until I had something grand to say. Finally I realized that I need to get the minutiae out of the way first. It’s wonderful to think that I will be philosophical and creative in my approach to disability, but the reality is that I have to spend a certain amount of time and energy dealing with the physical aspects of it. Living in the muck is part of the job. This posting is about the muck.
Last Wednesday, I had my long-awaited visit to the rehab doctor. I’m happy to report that I liked her: she has a sense of humor and, more importantly, she “gets it.” she seems to understand living with a disability in ways my neurologist, sadly, doesn’t.
She started by explaining that her role is to do what she can to improve my functioning. Her specialty is spasticity, and that has been my biggest challenge of late. She explained what she called a “pyramid approach” to treating spasticity. exercise first, then medication, then (perhaps) surgery.
My body is so clenched that stretching is a challenge. Ralph wrestles with my legs each morning to try to stretch my Achilles tendons. It’s a workout for both of us. To add any more stretching would be difficult. But I have a standing frame, so we’ll start by doing what I’ve been meaning to do anyway: use it three times a week.
The doctor also gave me a protocol for increasing my baclofen dosage to (potentially) quadruple what I’ve been taking.
We will reconvene in six weeks.
Looking at the bigger picture, she did not offer me a return to what was. It’s possible, she said, that the spasticity will subside, but if it does it will probably leave total paralysis of my legs in its wake.
It was surprisingly easy, after four months of struggle, to give up the idea of “getting my legs back.” From that standpoint, the long wait to get in to see a specialist worked in my favor: I am ready to move on to whatever is next.
I’ve been delaying the hunt to find a PCA because it’s obvious it won’t be easy. Getting the prognosis has given me a sense of energy about doing that. It won’t be wasted effort.
The doctor also suggested that I talk to my urologist about urinary diversion surgery. She realizes that if I didn’t have to transfer to the toilet, I could probably get away without a PCA as long as Ralph is in town.
It’s interesting to notice that our health care system is more willing to pay for an invasive procedure then it is for ongoing care. If I do end up taking this route, I intend to make some political noise about it.