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195Re: [Myotubular_Myopathy] Re: Number of People with Centronuclear Myopathy

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  • redscootee@webtv.net
    Nov 5, 2003
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      Toni,
      I am going to email the lady in Canada again. to get statistics. She has
      a new email addy so I am not sure if she got the first one I sent her or
      not.
      I will try and get my story to you in the next week. Eventually I will
      send the picture and also post it on the mtm group also.
      I think getting a job with more security for the future is a great idea.
      With the way the mtm affects everyone differently looking at the big
      picture is the best way to go. I never dreamed I would have to go out
      on disability in 95 . I ended up having a congenital break in my back.
      It was the reason I went out but eventually I would have had to with the
      md also. I was a purchasing agent for a healthcare company, Baxter at
      the time. They would not accomodate the building for me to get about
      easily in my wheelchair so my doc put me out on disability.
      I used to be on flex time and really was glad our company offered it.
      Made it much easier to schedule appointments right when I got off work.
      How did you like the class on the Human Gnome? I took a course on
      writing childrens books. I have had a couple of my articles published
      but have not taken the time to write on a regular basis yet.
      Like you said the web site takes up a lot of time. I worked on different
      programs at work on the computer. Before I went out on disability I was
      going to college to get my degree in computer science. I did not pursue
      it after I went out on disability since getting the degree was mainly
      to advance at work.
      Thanks for the heads up on Beggs Lab research. I do not have a sample
      from when I had my biopsy. The place that read my biopsy said it was
      inconclusive since I was a woman and they tossed the rest of it out even
      though they were supposed to save it. (GRR) I will check with them
      before I decide whether to get in on the research or not.
      Do you feel the stander is helping you at all? I went to pt a few years
      back for my back but the difference was not that great so I stopped
      going.
      take care pat
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