When I went to the Children’s Hospital of Pennsylvania last summer, I didn’t have to do the nine-hole peg test. Silently I cheered as this torture seemed behind me.
Fast forward to last week. I had to do it four times.
Actually I didn’t have to. The woman asked me several times if I wanted to, especially after the first try when I must have taken a minute a peg.
But one of the reasons I go to CHOP is so they can study me. I’d almost anything for them.
Other than that, not much.
The neurologist liked the idea of the standing chair. He said it will help my bones, which in Friedreich's ataxia people are prone to weakness. That part about bone weakness was news to me and would be news too to my insurance doctor who said standing does nothing for FA.
The neuro said the first FA treatment would be out in about a year. The drug essentially takes you back two years FA-wise and keeps you there. Unfortunately, he made the same prediction last year.
Finally, he said it sounds like I had a good year. So yay.
1 comment:
Good report to hear Matt, you are a glutton for punishment ie; the peg test. I am all for you doing it per your reasoning. dad
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