advocate

  1. Georgia Peach

    BiPAP Recommended Today

    Even though I knew it was coming, I was somewhat surprised when Emory recommended that he now start using the BiPAP. His breathing has really been affected by the PE and pneumonia, His level is now at 38. One more ALS moment that I knew would come. Just like that last time I saw him standing...
  2. J

    Hope Loves Company for ALS Kids

    I was recently interviewed regarding my new non-profit for the children of ALS patients. It's called Hope Loves Company. About me and HLC: Hope Loves Company is new and in the baby stages of helping ALS families but I can't wait to be able to do so! My mission is to provide emotional and...
  3. Georgia Peach

    VA C&P Exam

    Finally after months of waiting, we have the C&P exam scheduled for this afternoon. Besides telling the evaluator about the worst day of his illness (yesterday was pretty typically bad health wise), be on time, don't complain about the VA or services, etc. What should we expect? So far, my...
  4. TedH5

    The ultimate story of hope

    Let me first apologize. I know that I have not been on the forum over the last 3 months. Not a day has gone by that I have not thought of my "forum family" and have continued to keep all of it's members in my prayers. Many have visited me on FB and asked me how I was and relayed everyone's...
    • TedH5
    • Thread
    • ability advocacy advocate als als research awareness back cals cdc cell chair cure decline diagnosed diaphram early emg family guilt heart hope improvement mip mistake night nurses onset planning questions research respiratory respiratory failure stem cell story support surgery symptoms tests trial worry
    • Replies: 31
    • Forum: Stories of hope
  5. Georgia Peach

    I wanted to share some good news

    These past eight months have been the hardest months of my life with my husband diagnosed with ALS and seeing his rapid decline right before my eyes. I felt like I have not made much progress with the VA trying to get his disability rating changed- he is still at 30% which is a joke. We have...
    • Georgia Peach
    • Thread
    • advocate als back bed chair clinical clinical trial decline diagnosed disability eyes friend hoyer hoyer lift life lift power power chair ramp trial wanted
    • Replies: 15
    • Forum: Stories of hope
  6. M

    Mom going in for testing

    First of all I would like to say I have been a lurker here for a few months now. I want you to know my thoughts prayers go out to all of you diagnosed and your families. I have been in tears many times reading the stories of courage on this board. I am searching for some advise. My Mom has not...
    • mommasgirl
    • Thread
    • advocate als diagnosed emg fatigue info mri questions reading respiratory saliva stroke symptoms testing tests tongue weakness
    • Replies: 14
    • Forum: Could this be ALS?
  7. G

    Newbie

    My grandmother was just diagnosed with ALS two weeks ago. She's in her early 70s. Just before I left on a trip during the last week of April, her only sibling called and said he was in the hospital. He died only a few days later. They were never really close, but I think that the stress and...
    • GoodApple
    • Thread
    • advocate age allergies als back decline diagnosed early early symptoms eating family feeding feeding tube health hope lung capacity metabolism newbie night possible a questions stress swallowing symptoms symptoms of als test trip
    • Replies: 3
    • Forum: Current caregivers
  8. B

    Our Sadiemae needs support!

    Please send your prayers and well wishes to Lori! Her husband has suffered a serious fall that would have killed him, if it had not been for their son stopping the bleeding! They are back home now. If it wasn't for Lori and her son, her pALS would be gone. Her son was a HERO and so was...
  9. mare

    Congratulations Zenarcher!

    So, just back from a very busy 3 days in DC at the ALSA Conference & Advocacy Day. Yesterday (Tues.) was the day to go to "the Hill"; there was a "Celebration of Excellence Breakfast" for all first. Some speeches & then 3 different awards are announced, one of which is the Rasmussen Advocate of...
  10. rcharlton

    My little advocate and interpreter

    It's getting to the point where sometimes I have to repeat myself 5 or 6 times to be understood. I'm starting to use Modeltalker but often this is not practical. To make matters worse one of my caregivers is in denial about losing her hearing. She has a heart of gold but it can be so...
    • rcharlton
    • Thread
    • ability advocate bipap caregivers dad denial hearing heart shoulder speech voice
    • Replies: 43
    • Forum: Stories of hope
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