Hi all,
I am now in NYC, the plane ride was long but largely uneventful and once here, I visited my folks who are 94 and 92-- Mom. I travelled w my husband which is like traveling alone but still that "alone" was better then nothing.
Here, too, is where I fell badly--I generally try not do this. Who says NYers are indifferent. Lie. In seconds, people, total strangers, materialized with ice and jumped into action. Soon fire fighters and police (don't know why) came and took over. A very nice cop, went by foot to get my husband. Soon an ambulance showed up and though I kept saying it wasn't necessary, we went to St Lukes Hospital now called: Mount Sinai-Roosevelt. Anyway there I met a bevy of superb doctors and nurses. most of whom had no idea what ataxia was/is and preferred to see me as a heat victim. (It was very hot.)
Bottom line: no broken bones but a big bump on my head plus a raccoon look; also some vertigo related to the bump. Again no fractures and I was sent home. I ordered a walker-- till then I used a stick or two.
Two days, Dr Tom Clouse came to see me with some English guy whom I will call Peter. Clouse told me that I am not so bad--better than Peter was upon arrival--- and that he can fix me up in a jiffy. I felt very encouraged. Peter, a man in his fifties or sixties swore by Tom. He travelled to see him by plane from the UK, from the area called Sussex=Brighton. He said Tom, who no longer operates but is quite active and normal looking, changed his life. Peter did have a stick but he said mainly 4 the NYC crowds.
My husband had gone upstate with his grandson, as planned. (He's not one to change plans no matter what.) The grandson, almost 8, was not too freaked out about my eyes. He said, "I also had a panda face." Later, my daughter came and she was a huge help. My NYC PT also showed up one evening and we went out. He made me promise that I will not go out alone nor w/o the walker.
One day (recently) I watched a you tube of how babies learn to walk. Not so easy. They use their arms a lot for balance and start off taking small, short steps, never locking their knees, never looking down.. if that helps.
Tell me more about Clouse because I am about to invest in him and what he says. I now have 3 advisers-- no, four: Clouse, who says to ignore most drs and PT's, because they never had ataxia; my NYC PT; my Aussie PT; my neurologist.
BTW, my speech is lower and lower. Close says to ignore this (its a function of learning to shut up) and try to articulate and to shout. Trying.... Advice?? BTW, Peter says that Clouse helped him walk normally again and even jog. We all have diff. ataxia sources but the same darn symptoms...
In health N
64 with Friedreich's Ataxia
help I am scared of losing everything
I can barely walk but I can dance!
