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Thread: Just checking in...

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

    Just checking in...

    Hi folks,
    I haven't been around much lately. I have posted a few pics of some projects I've done over in the flat work forum, but that's about it. As many of you know, life has thrown me a major curve ball and I'm having a hard time dealing with it. I'm doing the best I can, but it's tough.

    I've been diagnosed with Late Onset Tay Sachs disease. It's a very rare disease that has no cure and not even any treatment available. There are three forms of Tay Sachs, infantile, juvenile, and late onset. The infantile and juvenile are fatal, where late onset generally isn't. I'm one of only roughly 100 cases in the entire country! I've known since diagnosis that a wheelchair was a possibility. But at this point, it's looking like more of a probability.

    A few months ago, I found an online support group for Tay Sachs and it has been very helpful. But most of the members are parents of children with the other forms of the disease. About a month ago, I discovered a support group for just late onset patients though. In the past few weeks I've "met" (online) at least ten of the other patients. The scary part is that every one of them are in a wheelchair now. Some have been dealing with the disease for 10-20 years. It's not fatal but debilitating. Unfortunately it appears that the disease is progressing faster than I had hoped. I have had people telling me for over a year to file for disability because it can take up to two years to process and start collecting benefits. Well in doing some research on the Social Security web site, I found that there is something they call the CAL (Compassionate Allowance List). It's a list of diseases that have been "fast tracked" as far as disability goes. Well Tay Sachs is on the list. The SSA web site says that if you're afflicted with a condition on the list, that claim processing can be done in as little as just a matter of days instead of weeks or months. My step father has a friend who is a lawyer and he told her what was going on with me and she said that my claim should be a "slam dunk" and there shouldn't be any problem getting approved.

    I've been hoping to put it off until it was absolutely necessary, but it looks like the time has come. I'm in the process of getting my ducks in a row and I'm going to have her check over all of the info. When it looks like it's ready to go, I'm going to file. Hopefully my claim will be approved. If so, that should take at least SOME of the stress out of my life at this point.

    Take care all!
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  2. #2
    Join Date
    Mar 2008
    Location
    new york city burbs
    Posts
    10,188
    stay positive and feel good john.
    Human Test Dummy

  3. #3
    Join Date
    Jun 2010
    Location
    Vancouver Island, Courtenay/Comox Valley, British Columbia
    Posts
    3,220
    I'm so sorry, John. Chin up, and we're here for you.
    AKA Young Grasshopper Woodworker
    AKA The Rookie

  4. #4
    Join Date
    Oct 2006
    Location
    ABQ NM
    Posts
    30,008
    I'll echo Cynthia...just remember you have a lot of folks here pulling for you.
    When the going gets weird, the weird turn pro. - Hunter S. Thompson
    When the weird get going, they start their own forum. - Vaughn McMillan

    workingwoods.com

  5. #5
    Join Date
    Nov 2006
    Location
    Delton, Michigan
    Posts
    17,470
    its not your fault for being buggered up, and if your up for ss grab it, you have paid for it so dont feel bad for using it..
    If in Doubt, Build it Stout!
    One hand washes the other!
    Don't put off today till tomorrow!

  6. #6
    Join Date
    May 2007
    Location
    Thomasville, GA
    Posts
    5,992
    I'll echo the others: Keep a positive attitude and accept any benefits due. We're all pulling for you!
    Bill Arnold
    Citizen of Texas residing in Georgia.
    NRA Life Member and Member of Mensa
    My Weather Underground station

  7. #7
    Join Date
    Jul 2007
    Location
    DSM, IA
    Posts
    5,719
    Quote Originally Posted by Bill Arnold View Post
    I'll echo the others: Keep a positive attitude and accept any benefits due. We're all pulling for you!
    Yeppers!
    A man is rich in proportion to the number of things he can afford to let alone. -Henry David Thoreau
    My Website


  8. #8
    Join Date
    Apr 2007
    Location
    No, not all of SoCal is Los Angeles!
    Posts
    9,076
    Woodworking or not John, your presence here is a big plus for us all. Hang in there and my thoughts are with you.
    Any sufficiently advanced technology is indistinguishable from magic.
    - Arthur C. Clarke

  9. #9
    Join Date
    Nov 2006
    Location
    Rochester Hills, MI
    Posts
    940
    Thank you all!

    I'm just having a tough day and had to get some things off of my chest. I know you've heard it before, but sometimes it helps to just let it out.
    I know that a wheelchair is NOT the end of the world and it's better than the alternative of my original diagnosis which was ALS. But it's still pretty scary.
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  10. #10
    Join Date
    Dec 2006
    Location
    Independence, Kentucky
    Posts
    1,354
    John anytime you need to unload your burdens we are here for you. That is what Family is for.

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