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Thread: Hi all! I'm back with an update.

  1. #1
    Join Date
    Nov 2006
    Location
    Rochester Hills, MI
    Posts
    940

    Hi all! I'm back with an update.

    I'm feeling pretty good now, but I was having a very bad time for almost three weeks. We think we've figured out what the problem was and we're handling it so I am feeling better.

    Unfortunately, I have seen a definite progression of the disease over the past 8-9 months. Thing are getting very difficult for me to do. About two years ago, I installed ADA approved handicapped height toilets because I could barely get up off of a regular toilet. It was wonderful for a while, that solved the problem. But my quads are getting so bad that I'm having a very hard time getting up from even an ADA approved toilet. I've had to install grab bars by the toilets so I can get up when done.

    Stairs are a real issue too. I can barely go up and down stairs now. If there's no handrail, I can't use the stairs. I finally broke down about a month ago and started using the electric stair lift that I installed a couple years ago. I was being stubborn and decided I'd fight it as long as I could. But now it's more of a safety issue than a convenience.

    I have a 9" step up from my family room to the kitchen area. Two years ago, I built an intermediate step for that area to make it into two 4-1/2" steps. Again, it was wonderful for a while. I could go up and down with no problem. But over the past few months, I've had to install a grab bar on the corner of the room by that step. I'm having a hard time getting up even a 4-1/2" step!

    I really need to raise the level of this floor in the family room to make it the same level as the rest of the house. But I can't afford it. I could do it for the cost of materials because I have a builder friend that would work with me on it. The materials for raising the floor are only about $500. But it would cost another probably grand to put flooring on it and the kitchen. The kitchen now has ceramic tile that's slippery as heck when it's wet. So if and when I can raise the floor, I'll put commercial grade strip vinyl over the whole area. That way it will be accessible and easy for me if and when I get to the point where I need a wheelchair.

    A week from tomorrow, I'm headed back to Minneapolis for the third time. They're doing more lab work for the study. It's only for a couple of days though. I've also been accepted into another research study at the National Institute of Health in Bethesda, MD. They are the biggest and best research hospital in the world! In the middle of April, I'm going to spend three days in the hospital there, and then I'm going to the annual family conference put on by the foundation doing research into this disease. I'm so happy because I just found out that there should be thirteen of us patients there. I was hoping to maybe meet three or four. I am one of only roughly a hundred confirmed cases of this disease in the entire world! So having thirteen of us there is going to be a good thing. I'll be able to talk to other patients who know exactly what I'm dealing with.

    I should come by here more often and check in, but I spend a lot of time on FB which is where my support groups are located.

    I'll let you guys know how it goes in Minneapolis.
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  2. #2
    Join Date
    Dec 2006
    Location
    Yorktown, Virginia
    Posts
    5,011
    John, It sounds like you are doing all you can to keep yourself mobile. Lets hope the research study can help. We are all rooting for you.

  3. #3
    Join Date
    Apr 2009
    Location
    Outside the beltway
    Posts
    5,250
    John I agree with Ted and I also I get your prayers best of luck to you.
    I dream a lot. I do more painting when I'm not painting. It's in the subconscious.
    ::: Andrew Wyeth :::
    colonialrestorationstudio.com

  4. #4
    Join Date
    Nov 2006
    Location
    Rochester Hills, MI
    Posts
    940
    Thank you guys!

    This has been the hardest thing I've ever had to deal with, but I refuse to lie down and give up. I'm fighting as hard as I can.
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  5. #5
    Join Date
    Apr 2010
    Location
    North of Reno, NV...middle of the desert
    Posts
    1,930
    I enjoy following your posts on FB, John. So glad you'll get to participate and share experiences and I'm confident that it will help them find a cure.

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