CMT Part XI – Pushing Forward

It’s been three months since I wrote about getting new ankle foot orthotics (AFO’s) and getting hearing aids. Having visited the specialist at John’s Hopkins University and following through on the direction and advice I obtained from the neurologist there, I’ve been working hard to push forward. And forward I’ve moved.

My new AFO’s have given me much better agility although the tradeoff seems to be a little less stability. They told me to use a cane on irregular surfaces and in crowded places with people pushing from all sides, but so far my vanity has won out over the cane on all but a few occasions. On the other hand, I’ve only fallen once, which for me is a great improvement. And I think most anyone may have fallen given the particular situation (there was half a brick hidden in the lawn, imbedded in the soil below but protruding up 4 or 5 inches). Nothing was hurt but my pride.

The AFO’s let me go faster and farther. But I’ve also noticed when I wear myself out by walking too far or doing too much my legs just give up all at once. Lately I’ve been trying to learn the boundary and not do so much I hurt myself.

The hearing aids have become a natural extension of my ears. And I’m hearing words and sounds I haven’t heard in thirty years. That, in turn, has helped my attitude improve and my social extensions stay alive. My conclusion is that a good pair of hearing aids is worth their weight in gold (and that’s about what they cost!).

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One area that hasn’t gone so well has to do with returning to statin medication. As I’d written previously, last fall and early winter I experienced intractable back pain that put my in the hospital. Although the doctors didn’t find anything concrete, we did all decide that the statins were a likely culprit and I quit taking them. The extreme back trouble went away. Case solved. Or at least it seemed solved until the John’s Hopkins doctor told me she didn’t think the statins were to blame.

About three weeks ago I had a follow-up appointment with my cardiologist. He put me back on the statin I was taking a year ago. And sure enough, after a couple of weeks I began experiencing back and leg pain that was unique. It felt like Charlie horse cramps and spasms. I haven’t had that feeling since I went to the hospital a year ago. Statins. I called the doc and he said to quit taking them for a couple of weeks and see if the problem fully resolves itself. I’m fascinated to see if indeed that is the trouble. I’m also discouraged because the Cardiologist wants me to take a statin drug. But oh well… it’s all part of pushing forward I guess.

Two steps forward, one step backward.