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I was dx in October ’92 at 31yo, with limb onset sporadic ALS. I had a 15 month old son & the Neuro said ‘You have 2-5 years’. I was enrolled in a double-blind drug trial for CNTF, at UVM, in July 93. I was on the low dose of the drug and was able to use it open label after the trial. I don’t know if I was blessed with slow progression or if the drug trial had an affect, 30 years later & I’m still here! My son is 31 and is a chef in Chicago. I’m totally dependent, I use my 3rd E/W to get around, I use a HeadMouse to control my desktop PC & laptop, I use Dasher to write. I see my Neuro, and ALS clinic team, every 6 months, I don’t have any breathing, eating equipment. I can eat & drink whatever is given to me, with a few tweaks. I’m 61 yo & I feel good!
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