frustrated

  1. 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...
  2. pdcraig

    Need some advice and a bit of a ramble

    It's been a long time since I last posted. My PALS is still hanging in, defying all predictions. It's sometimes hard to believe it's been over 5 years. He's reached the point where swallowing is a real issue. No PEG, he won't consent. He's saying he is choking on his saliva all the time. When I...
  3. Kristina1

    a lot of pain for a supposedly painless disease :(

    My latest complaint is that I can't sleep at all due to pain in legs and arms. You know the stretching exercise where you sit on the floor, stretch your legs out in front of you, and try to touch your toes? You know the pain in your upper legs when you do that stretch? That is the pain I'm...
  4. M

    Golf/tennis enthusiast needs grip help!

    Hi all! I am new to this forum and trying to assist my favorite uncle (newly diagnosed with ALS) with making the most of his progressive grip weakness. He is a lifelong golf and tennis player and coach and still coaches currently. While he is still in the early stages, he is becoming frustrated...
  5. R

    I need help using new hospital bed

    I have Synergy® Air Elite Low Air Loss Therapy and a fully electric hospital bed. I can lower the bed low enough to sit on bed, but I can’t swing my legs into bed. I have ALS that has started in my hips. I ordered a trapeze to mount to headboard. I want to learn how to lean back on raised...
  6. S

    Insurance woes

    Hello,all, I am a non related caregiver for a patient who has completely lost use of all extremities, but retains voice and enough ability to swallow. I am emotionally having difficulty dealing with her family and medical care, although I say nothing while working of course. I am simply sad and...
  7. S

    parent with bvFTD now falling

    Hi Everyone-- Hopefully I'm posting this in the right place. About 6 years ago my father-- longtime academic, loving husband, stay-at-home dad, and just all-around exceptional human being-- started acting...weird... at times. "Insidious" is probably the best word to describe the onset. It...
  8. M

    Drugs and supplements

    All articles talk about drugs and supplements to help with strength and twitching but nobody says what they are. I’m getting frustrated with trying to find what they are. Can someone please help me with this. Mod Note: email deleted. Plz send a Visitor Message if you wish to respond. Or...
  9. W

    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...
  10. G

    Speech Device for Bulbar-onset ALS

    Hi guys, I hope you are well and coping with any difficult situations that you are currently facing. I am after a recommendation for a speech device for my father, a bulbar-onset PALS. He had a trach inserted 3 weeks ago so cannot speak, but his voice was barely discernible in the weeks...
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