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  1. affected
    07-02-2016 01:29 AM - permalink
    affected
    Hi :) Bulbar onset + FTD is often one of the more rapid progressions, but not always. It's all so unpredictable. Yes Chris was gone 11 months after diagnosis. He was diagnosed around 9 months after the real onset of bulbar symptoms. But there were signs of something going on up to a couple of years prior to the slurring and choking. So it could be that he had a very slow onset, but it certainly ramped up once the bulbar really started. However, his rapid weight loss and injuries from falls, and no bipap definitely contributed to his life span being short. I would not have wanted him to live a long time though, he was in a living hell with his rage and paranoia. hugs
  2. affected
    07-01-2016 02:29 PM - permalink
    affected
    I'm sorry that you are now following the same trail.
    Anything I can do to help, you got it xxx

About Me

  • About cookimonster
    What's your relationship with ALS/MND?
    I am a caregiver for someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    01/2016
    City
    Hastings
    State or Province
    MN.
    Country
    US
    Biography
    I am a caregiver for my wonderful husband Jim. We are newlyweds!!!
    Occupation
    Caregiver, Wife, Chief Cook and Bottle-Washer
    Interests
    Horses, Photography, Cooking and Entertaining

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  • Last Activity: 07-14-2016 06:26 AM
  • Join Date: 06-29-2016

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