Day 28 11/12/08
November 12th, 2008
Better night, but not perfect. Fell in the shower, with 5 guardrails! Didn’t call the nurse, because she ratted me out to the doctors last time, which had something to do with the IV decision.
This morning, they came in as I was coming out of the shower Fortunately, they didn’t seem to notice the scrape on my knee. They had considered my (Jim’s) Valium hypothesis (I had mentioned it to Dr. Bing, my spinal proponent) and after tests on reflexes, touching my nose with my eyes shut (really officer, I’m not drunk, I have ataxia) they agreed that a spinal would be best for the last treatment. Stubborn wins again!
Actually, I’m amazed at their willingness to listen to the patient, something you don’t see very often from the tin god specialists in the states . I also think they won’t change their minds because they don’t see the results. I’ll tell my general neurologist, but I’m not trucking up to Columbia Presbyterian, waiting 3 hours, and paying $900 just to prove a point. I may be crazy, but I’m not stupid.
Anyway, I felt better today, but not 100%. This was reflected in PT. There’s nothing like therapy to tell you where you stand. You’re doing the same exercises, and how you do is a great frame of reference.
I met another newcomer today, Emanuel. He has a form of ataxia called SCA-3, or Muchado Joseph’s disease. Worse than mine. I tried to give him the heads up on things (lidocaine good, Valium bad) he’s a nice fellow, I hope this works for him.
Tomorrow, I go on my shopping trip with Jack. Jim’s wife Carolyn spotted eveything I want at the RT mall. So we’ll have a little KFC for lunch, get the bootie, and head home. Then, one last trip to the Holiday Inn buffet with some friends. Friday, some photos and gift giving with the nurses, therapists, interpreters and doctors, and the last spinal. Saturday therapy, rest and packing. And Sunday, I am outta here!
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2 Comments Add your own
1. melissa tantillo | November 13th, 2008 at 12:27 am
Good Morning~ As I read today’s blog, I realized that you only have 3 more to write. You should keep writing when you get back. In fact, if you have your laptop w/you on the plane, you should start putting it all down in writing. The diagnosis, the options, the research, and the end result. People need to know about this, many many people. I’m going to go to Barnes and Noble soon and start snooping around to see if there is anything similar to what we’re talking about. If there isn’t, and I’m right, and you do and it gets published, well, I’m sure that you can see where this is going!! Is 25% too much to be asking??
You are in for a little shock when you land in NY, brother. It is pretty cold here of late, and it doesn’t appear to be getting any warmer. The rest of us had October to ‘thicken’ our blood, you’ll have to wear a few sweaters to catch up! Can’t tell you how much I hate this weather, I can only dream of the crashing waves and the warm sand of Montauk!!
Ok, so no more falling. Get that last spinal and let those stem cells work their magic!!! I wish I had tons of $, I’d send Geo a ticket to come home for the weekend so that he could see you for himself and join in on the group hug!!!
3 more days……
LOTS of love, Melissa
2. Aunt Sandy | November 13th, 2008 at 11:54 pm
Hope you’ve quit falling and today was better – I know we’re all counting the hours till you’re home and that’s plus your feeling better is the focus – hey the crashing waves and warm sand of Hilton Head are beautiful also – would love to have you ALL down here to enjoy — maybe sometime I can get you all away from the cold weather???? OOO XXXX’s Aunt Sandy
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