Saturday, May 7, 2016

CHOPping away at FA

I had a good, if tiring, visit to CHOP on Thursday for my annual FA check.

I am going to revisit an old friend to try to improve met energy: co-enzyme Q10. The doctor had other advice if that doesn't work, too, though he had less than ringing endorsements. If they do work, he said, it's on energy.

He said a new medicine might help my bladder and recommended one. He also suggested I follow up with a speech therapist, though he warned against letting them do a barium swallow test. They just tell you that you are in fact having swallow issues.

I am definitely going to go to an audiologist this  year, I told him.

I was surprised by the treatment news. Several are due out in a year and a half, including a diet that sounds odd but has some science behind it. It involves eating a lot of fat, so you'd be like Homer Simpson, my niece said. Added my nephew, "Homer Simpson in a wheelchair."

The biggest surprise was the drug that is a few years away that not only stops the ataxia but reverses it. WHAT

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