I figured it would be a good idea to write more on this blog outside of once a year. 🙂
I have been doing well. Little, it seems to me, of the “roller coaster” that is usually described.
I have been dealing with a couple of things that makes me say “I’m not back to baseline yet.”
First is weakness. I am still using a wheelchair most of the time. I can use my crutches to walk, but only for short distances. Now, I also acknowledge, that I was probably using crutches past when I should have been using a wheelchair, for safety reasons, before the treatment. But I also have appointments, and confidence that Kaiser is going to pay for walk aids for me. So once I have those, it will make things a lot easier to move around.
The other things I have been dealing with, are muscle “tone” and “clonus”. I may have spoken about these before. Tone is when the muscle flexes and won’t let go for several seconds. This happens to me with my quads. If I get close to straightening my knee, the quad will spasm, and not release right away. Certainly not in a way most people expect to be able to “tell” it to release. Clonus is where the calf contracts and relaxes rapidly, causing my heal to bounce up and down off the floor. It’s apparently a flawed manifestation of the bodies natural defensive reaction to flex a muscle it detects is about to be over-stretched. It was cute when I could trigger it when Samantha was small, and use it to bounce her on my knee without feeling fatigue. Now, though, it impedes standing and walking.
Both of these symptoms have gotten worse since the treatment.
In the past few months, the tone seems to have gotten less painful at the very least. I’m hoping this means it’s exacerbation is on the way out.
The clonus is a bit harder to pin down. It gets worse the tighter my calf is. And by the time I have my next massage, it will be 2 months since she’s been out. Normally, if I concentrate on pushing down through my heel and not being up on my toe, the clonus doesn’t tend to show up. The last time I went in to work towards getting my walk aids, the clonus didn’t show up at all. So I am hopeful with more movement, and time, the clonus will become less of a problem.
I also haven’t been able to “wall walk” again. I have gotten more crunched down, and it’s harder to stand straight up. But again, that sort of thing is commonplace when I haven’t had a massage for this long.
In total, I think there is still some hope that the rest of this year can result in more relief of symptoms that were exacerbated by the treatment. But as opposed to how hopeful I was right after the treatment, that I would be able to walk without aids, I think that is a long ways off, if it’s going to be possible at all.