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  1. R

    Fvc and the end

    Sorry for the topic but curious about Fvc and life expectancy. My fvc held steady in the 60s for about a year but dropped from 64 to 44 from Feb to May. Started Trilogy in early June and use at night, but Fvc down to 31% at Clinic visit a couple of days ago. At this rate wondering how much time...
  2. R

    Use it or lose it?

    Sorry I stole that from someone else's post but I couldn't think of a better description of what I wanted to ask. I was diagnosed in January 2014. I quit working in July. Once I quit working, I start spending more more time at home either sitting in the chair or laying down in bed using my iPad...
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    Positive ALS Support Group Experience

    I was recently diagnosed with ALS and am 42. I went to my first ALS support group in my hometown last night and met many wonderful people whose lives have been affected or touched by ALS. I was a little nervous about attending but I am so glad I did. I was the second person there and met a...
  4. R

    Back ache/pain with ALS

    Hi, was recently diagnosed with ALS in late January and had it confirmed by Dr. Glass at Emory earlier this month. So far symptoms include weakness in left hand, some light cramping in hands and legs, and just a touch of weakness in leg at times. Fasciculations started in mid December in left...
  5. R

    resources for telling young children about diagnosis

    Was just curious if anyone had any resources or tips on how to handle telling small kids. Was diagnosed a little over two weeks ago and got confirmation this week. Have two boys, 12 and 7. Part of me wants to tell them about this as it will mean lots of changes (selling our house which is not...
  6. R

    recently diagnosed - checking on ALS clinics for second opinion

    Hi, my name is Rick. I was diagnosed yesterday with ALS by a neurologist in Louisville. He said nothing is 100% and I need to get a second opinion at an ALS specialty clinic. He researched around and recommended the one at Emory University. I was also considering the Mayo Clinic. Was...
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