Today I had my first physiotherapy session! At my consultation Friday, my physiotherapist (PT) Vince had me walk and stand for him. I was amazed by how much he learned about me just by watching this! He said I stand with my back back and my shoulders kind of slouched. He also said my gait is stiff. I felt so validated! That ignorant, rude neurologist who said my balance was fine because I could do the heel-to-toe walk was wrong! Vince noticed! He said this is how I compensate for the balance problems.
I feel so angry at that neurologist, first because the heel-to-toe test is a very basic test that doesn't really reveal my problems, second, because according to Vince, my heel-to-toe test does reveals problems. My simply being able to do the test isn't good enough! I told Vince about this neurologist and he gave me a look like, "That doesn't make any sense!" I told him the experience was demoralizing (and also demeaning!). I didn't remember to tell him that the neurologist said that if I saw a PT, the PT would say "Why are you here?" You know... Because I could do the heel-to-toe walk and was therefore fine. That neurologist knew virtually nothing about Dandy Walker Syndrome, by the way. For almost every question I had, he said "I don't know." Well, then look it up, damn it! Call a colleague! Yeesh.
I had described my balance problems in the beginning when he asked me what my problems were. He also asked me about what medications I take, activities I perform and what other health issues I have. I liked seeing him nod his head and ask his subsequent questions. It's fascinating to watch someone try to figure something out! I told him my shoulder slouching is likely at least partly due to the curvature of my spine. It's basically a slight hunch. Also, I told him my neurologist had suggested my stiff neck is contributing to my balance problems and that my nursing-student friend suggested my heart medication can cause fatigue in the legs. He nodded his head again, seeming to agree that the information I offered was at least possible. I felt so smart! I think as patients it's important to put pieces of information together and to be as open with medical professionals as we can.
I'm also glad, in a way, that my issues are actually visible. I mean, I knew they were at least some of the time. A good friend of mine noted a few years ago that I "walk funny" and he demonstrated the same gait Vince described, only exaggeratedly. Over two years ago I opted out of a job during a job interview for a position as an usher at a theatre because I found out the job would require me to stand a lot. I told the interviewer that I couldn't stand for very long. There were also times in university, before I got sick, that I noticed I was unsteady and slow going down the stairs at times. A new friend of mine noted this at the subway station once. "You have trouble on the stairs too! Damn, girl!"
So my disability has always been with me. As I illustrated just now, it seems to have become more of an issue in the past couple of years. That can happen with Dandy Walker Syndrome. I've read that the symptoms can get worse during adulthood. My neurosurgeon told me that weakness can definitely aggravate the symptoms, so it makes sense that I've been having greater issues during my post-viral syndrome. Not only that, but I've been mostly sedentary. Surely that doesn't help. Some of my muscles are weak at least in part because I haven't really been using them. That's going to change!
Vince had me do a bunch of exercises today to further evaluate which muscle areas I need to work on. He told me to do that home, two sets for each exercise, for ten times, three times a day, but I can modify it if I need to focus on improving a particular exercise. I'm so revved up. I know it will take time, but I'm excited to see how things improve.
I'm trying to be optimistic, but this weekend wasn't exactly reassuring. I felt pretty wobbly at times, nearly falling twice and many times losing my balance. I was also a bit fatigued, tired and just generally not feeling well. I'm not feeling great now actually. I walked properly on my way home, like he showed me, and it became painful and fatiguing. When I got home I felt shaky -- and sore of course! That's what happens when you get into shape. I still feel shaky and sore. My heart's been racing all day. I'm just not feeling good and perhaps it wasn't great to have PT when I'm feeling this way, but you know, if I only scheduled sessions for when I felt well, I wouldn't have them frequently enough for them to help me.
I think I will tell Vince how I'm feeling. He did find several areas of muscle weakness, grimacing, saying, "That's not good." Maybe my body's just not used to this. And he did schedule an appointment for tomorrow -- that's two consecutive days of physiotherapy. So he knows there are problems, but nothing I can't improve. I also had a bunch of strong areas, not that I'm surprised. I'm just a bit irritated that he says he doesn't think I'm fatiguing. He said this after having me do certain movements, even though I told him I generally only get fatigued after I endure activity for longer periods.
I didn't tell him I want a cane for long distances and wobbly periods, especially if I'm outside on ground that isn't level and there's nothing for me to hold onto. I have a feeling he would advise against it. I'm thinking maybe using a cane would prevent me from exercising muscles I need to work on. Still, I'm so sick of frequently having to right myself when I tip over. It's tiring. It's also a safety issue, I think. One day I may not catch myself. I'm not too convinced that strengthening my muscles is going to stop this, as it is a neurological issue after all.