advocate

  1. F

    Frizzel's journey

    My PLS moving into ALS is being put on hold till December. We had a bathroom that I only use that the pee trap was installed on the wrong side of the tub during a remodel and I was breathing directly in from the septic tank through my over flow vent in to the tub. It was Hydrogen Sulphide...
    • Frizzel
    • Thread
    • advocate als back bed breathing breathing problems brother caregiver cold cramps dad disability emg family foot foot drop heart insurance memorial muscle wasting muscles neurologist night pls problem problems spasms support symptom vent ventilator wanted weakness wrist wrist drop wrong
    • Replies: 8
    • Forum: General discussion about ALS/MND
  2. Lorie

    Congress Passes S.5 Stem Cell Research Enhancement Act

    First of all, I am not a supporter of Abortion. Being that I was blessed at the age of 30 with a beautiful healty baby girl. All the Doctors were telling me I couldn't have children. I also do not support Cloning. Thats why this Bill needs to be passed so there will be Federal regulations. I...
    • Lorie
    • Thread
    • advocate age cell children clinics embryonic questions research stem cell stem cell research voice
    • Replies: 43
    • Forum: Research and trials
  3. Lorie

    H.R. 2295 ALS Registry Act/Help Needed

    I have become involved with ALS Advocacy anywhere I can. Please read the following. If you live in any of the states that have not sponsered the bill please contact your Senators. Please Read! Thank you, Lorie 200 Cosponsors…and Counting! Let’s Get a Majority Dear ALSA Advocate: Your...
    • Lorie
    • Thread
    • advocacy advocate als als registry alsa boston early free information questions senate support website
    • Replies: 0
    • Forum: Research and trials
  4. O

    Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like

    Drug Saf. 2007;30(6):515-25. LinkOut Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase.Edwards IR, Star K, Kiuru A. The WHO Foundation Collaborating Centre for International Drug...
  5. S

    voice support

    I am an advocate for a friend who was Dx about 1 year ago. his speach is deteriorating and I wanted to offer the oppoertunity for him to record some stories of his life journey before his speech deteriorates more. As I contemplated this, I thought maybe there was some kind of technology out...
    • swmn
    • Thread
    • advocate communication digital friend ideas life speech support technology voice wanted
    • Replies: 3
    • Forum: Current caregivers
  6. C

    ALS and a link to firefighting

    I am wondering if anyone is aware of research on links between ALS and fire fighters? Since my fathers(a retired fire fighters) diagnosis in June of bulbar onset ALS, I have heard of three former firefighters who have died from ALS in our city. In this mornings paper, I read an obituary of a man...
  7. S

    Rude and heartless I will not stand for

    Good evening to all, I just wanted to give all a thank you for the kind words you sent my direction. Feeling sad and blue is a true bummer but when there are others out there that say hang in there and we are thinking of you kinda lifts one up. So BIG BIG thanks! :wink: For Pat, I would...
    • ShellyRenee
    • Thread
    • advocate bed children communication dad family feeding feeding tube fingers heart hospice lifts love night sad stupid support wanted worry
    • Replies: 7
    • Forum: General discussion about ALS/MND
  8. D

    Hello/Grandpa

    Hey Everyone! :) I'm just writing to say "Hi" and I'll hopefuly be on here often. The way I am associated with ALS is by my Grandpa. He passed away August of 2002. My grandpa taught me a lot. I was his oldest grandchild and he took pride in me. He liked to take me on hikes and teach my...
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