communication

  1. Nikki J

    Webinar on communication options

    https://www.neals.org/for-people-with-als-caregivers/educational-webinars/proactive-and-collaborative-consideration-of-augmentative-communication-too
  2. T

    I need to know the signs

    My sister was diagnosed with ALS 4/2015. She is at the end and I need to know the signs and what to look for. I need to know how much more time I have left with her. She is currently on a bipap machine, she cannot breath on her own anymore. That has been since August 2017. Monday her chest was...
  3. A

    What do you say when you can't say "It's going to be okay,"?

    I have lingered a lot on these pages the past few months, but not really participated. Thank you to all of you for sharing your stories, insights and experiences. It’s been so helpful to me so often, and comforting to know there is such a supportive community of people here who actually know...
  4. David

    Leapcure Muscle Cramp Trial

    Do you have frequent muscle cramps? Have you been diagnosed with a motor neuron disease like Amyotrophic Lateral Sclerosis (ALS), Primary Lateral Sclerosis (PLS), or Progressive Muscular Atrophy (PMA)? If you’ve been diagnosed with motor neuron disease and meet the requirements listed below, you...
  5. worrieddaughter77

    Some updates and decisions

    My dad is declining very fast. As new changes happening I would like to ask you for an advice/comments on the following points: Fatigue: My dad is very weak. He almost can't walk or stand up from a chair anymore. Taking him to the Dr or clinic is such a draining task on him. Just getting an...
  6. K

    Extending Hospital Stay

    Hi guys, I was wondering if any of you guys had any suggestions on extending a hospital stay. My dad is currently nearing the final stages. He is completely bedridden and has been on a trach for about six weeks. After the trach was done, Kaiser sent him to a subacute facility. However, the...
  7. Ed340hp

    Tirasimptev continues VIGOR ALS

    I'll get to the update. The VitalityALS phase three trial ended or all participants and trials in October. All reports and data were due for submission. They now think it will be March before publication. The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers...
  8. B

    My husband cried today

    For the first time since his diagnosis in June, my husband broke down. He has rapidly lost his ability to speak, and he was trying to tell me something that I just couldn't grasp. He tried to write it down but could only write one word that made no sense to me at all. He can't put his...
  9. O

    Concussion or..? (Warning: looong!)

    Hello everyone in here. First off I want to say that I have been lurking on here for a couple of weeks, and the courage I have seen from people here is beyond anything I would have expected from people in such difficult situations - all you who suffer from ALS or MNDs and all of you who have...
  10. B

    Please help does my father have ALS

    I was wondering if someone knowledgeable would be able to help me with some concerns regarding my fathers condition. He has been tested for over a year now and we still don’t have a final diagnosis but doctor seems to be leaning towards ALS. My father was diagnosed with Ocular melanoma 13 years...
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