We have a really good family doctor. He's smart and informed and not too condescending by doctor standards. Because he has such a good reputation, he's popular, meaning he sees a lot of patients, but in rural areas, that's to be expected. He knows a lot about stroke, but even as good as he is, he's clueless about spasticity. He refers to it as stiffness, as in, "How's that muscle stiffness on your left side? Getting any worse?"
Me: "It's not really muscle stiffness, it's spasticity."
Doctor, ignoring my clarification: "Still exercising?"
Me: "Yep, I swim every other day, and the days I don't, I stretch and work out with light weights."
Doctor: "Good, good. Does that help with the stiffness?"
Me: "Not really. In fact, in the short term it makes it worse."
Doctor: "Hmmm. That's...odd," forgetting that I've explained this phenomenon to him several times before.
Me: "Yes it is."
Doctor: "You saw Dr. ______, the neurologist I referred you to, didn't you?"
Me: "Yes, I did."
Doctor: "Did he have any suggestions to help with the stiffness?"
Me: "Not really."
Doctor: "Well, that's unfortunate. Well, if it gets too bad, let me know and I can prescribe a muscle relaxant that might help some," forgetting that we've talked about this before and I've told him I'm not interested in taking a muscle relaxant.
The neurologist he referred me to last year also seemed like a nice guy, but was just as clueless about spasticity. To check my condition, he watched me walk around his office, then had me sit on the examination table while he tugged on my left arm and leg. Now I have spasticity all up and down my left side, but it's not uniform, and it hardly affects my bicep at all, so it doesn't cause my left arm to fold itself against my chest as with so many other survivors. In fact, what I experience is just the opposite. So when he grasped my left wrist and pulled it toward him, I had to pull back in order to keep from punching him in the solar plexus. "Yes, yes," he said, "I can feel it in your arm." Similarly with my leg, I had to try to keep it bent so that my foot didn't snap up and knock his teeth out. "Yes, you certainly have a lot of spasticity in your left arm and leg," was his conclusion.
I didn't explain to him that he hadn't actually felt my spasticity where it actually was and how it actually affected me, because, really, why bother. There's no treatment for it, anyway. He did offer to write me a prescription for Baclofen and another for pain medication, but not wanting to spend the rest of my days stoned, I declined.
Mainly based on Dean's blog, I'm aware that there is a substantial amount of stroke research going on. But it seems so haphazard, so unfocused and directionless. It seems much of it covers ground already covered, making no attempt to build on work already done. There seems to be no plan, and no entity that is providing any overarching perspective so that a coherent strategy can be developed to solve the myriad unknowns that stand in the way of stroke recovery. Instead, we have isolated researchers engaging in disconnected research projects, while the stroke organizations take the easy way out and focus on prevention and treatment processes so they can claim nonexistent successes. I'm sure this approach makes for more fun conventions than would reporting on progress toward solving the complex barriers to stroke recovery.
I sincerely believe that a group of stroke survivors could provide doctors and researchers some of the basic information about stroke that could help inform their research efforts. But this is never going to happen. Doctors and researchers actually listening to advice from people who have had strokes? Why the thought of such a thing is inconceivable. What might happen after that? Medical professionals paid for results instead of as an entitlement for having a medical degree? Chaos, I tell you, the upending of the natural order.
So the state of stroke recovery seems hopeless, with the only useful information being provided by Dr. Google and the many smart and informed stroke bloggers. I admire you all, but my time as one of you has come to an end. My blog was about someone who had a stroke who was working. But at some point in the last four years I became someone who was working who had a stroke - a subtle but significant difference. There are still contributions I want to make and goals I want to reach in the time I have left. One of my goals is to get back to the blog I had started prior to my stroke. It's called The Liberal Capitalist, so drop by there and say hello sometime. Be well, do good work, etc., etc.