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Tuesday, February 15, 2011

Candour and quakes

I would love to have called this 'Candour, quakes and quacks' but to use the last of those terms would be a terrible injustice to my GP, who's been fantastic through all this. He might enjoy the joke but - better to be on the safe side....

   So we visited my doctor this afternoon. We talked about things with a candour that might shock many sensitive souls. We used terms that would make some people want to run a mile. But that's between him and us, and now's not the time to speak of it. Maybe later, maybe not at all. I'm perfectly comfortable with things I've had fifteen months to consider deeply and to demystify. That's why I like him so much as my GP. One thing's for sure, he's no quack!

   It’s a funny thing. With the practice I’ve been doing to walk well i.e., to make the right foot movement resemble the left one as much as possible, I’m able to walk down the hallway of our house reasonably normally. Anyone would know something wasn’t right, but it wouldn’t be like it was a few weeks ago when I was dragging the foot along like a log being snigged to the sawmill. 

   However, when I go out, and the terrain is just that bit different, it all falls to pieces, and I start the Quasimodo thing. Even when I walk to the doctor’s room down their hall, I feel different. I stumble and drag the foot and have to tell it to behave. Maybe it’s that I know the doctor’s watching as I walk, to see how my coordination is, and I want to put on a good show.

   I guess it’s a bit like if the metre-wide plank was raised 50 metres in the air and you had to use it to get from one building to the other. You think about it differently, hesitating, even though it would be no problem if it were your own hallway. Nothing has changed, only your way of thinking about it.

   Now that the last infusion of Avastin has well and truly kicked in and I’ve been feeling at my best, I’ve been doing a lot recently to improve strength, agility and coordination on my right side. There’s so much that can be done just lying on the bed – even crunches or leg raising to pull that sloppy gut in. I do things in lots of 5, 10 or 20 depending on what it is. It can be very simple or more complicated. Maybe it’s just lying on the bed on my back, lifting my right arm as far as possible, and seeing if I can lower my fingers down to my forehead. (This is a good one because if I get lazy, I smack myself in the forehead with the hand as it comes down uncontrolled. Or nearly poke my eye out. It does tend to concentrate the mind!)

   The weirdest sensation of all is just lying on the bed, putting my arms out in a crucifix position (or as near as I can get to it with the crooked right arm) and then slowly raising both arms from the elbow to fingers into a vertical position. At the right angle point, the right hand starts to wave or spasm slowly and rhythmically, and I can stop it only by grasping the right hand with the left, or moving the position of the arm altogether. I don’t know how long the slow tremor would continue if I let it, but the fear of its ending in a seizure makes me deal with it very quickly. Tremors are not seizures. There's a world of difference.

   I have tried ways of training my left side brain to take control of it when it starts doing that, but so far to no avail. Maybe I’ll work it out. It happens doing other exercises as well. Gross tremors while doing physiotherapy are the biggest interference in it and they happen most when the muscles get tired.

   If anyone has real experience in this area, please let me know.

   Or, I can stand up and do a kind of vertical press-up against a wall. Then again, I can stand flatfooted and then raise my heels so I am standing on tiptoes – or my version of tiptoes, which probably isn’t yours! What shocks me is if I do either of these right hand or right foot only, the muscles seem so weak that I can barely support the action, and only with huge effort. I mean, it seems as if both left and right arms or ankles are doing the same thing, taking the same weight, but using both together, the reality is that the left arm or leg is doing 90% of the work.

   How easily we can fool ourselves. But it’s all a learning process, in many more ways than one.


  1. It's not the same, but I think retraining after a stroke is probably similar to some degree (not that I've had a stroke, people; just watched someone with one). A woman doctor from the US wrote a book about her own experience that was really unusual and highly acclaimed (Joan R, do you remember what that was?) and perhaps there was even a dvd..I'll look it this spiel is just all words and no information!! Back later.

  2. I'm certain that stroke recovery is very similar to what I'm trying to do. The principles are the same. Teach another part of the brain to do what the damaged part was doing before. I think I have a pretty good handle now on what to do - the only question is how much time I have to do it in and the undoing of good new work that new seizures can do. At the same time, the more active I am physically, the better I can use the weapons to fight off the effects of growth of the tumour and the resulting inflammation.


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