quality of life

  1. M

    Microsoft Research survey for caregivers of PALS

    Microsoft Research is working on developing communications technologies to improve quality of life for people with ALS and their families. We have a short (5 - 10 minute) online survey that caretakers of people with ALS can take that will help inform some of these technologies. You can take the...
  2. E

    Transferring Vent PALS to Nursing Facility

    Hi fellow CALS, My name is Ariel. It's been many years since I've posted on this forum but our family has determined we need some help form those that might have more experience than us. My mother has had ALS for 10 years now. She's completely paralyzed except for eyes and mouth (which have...
    • elengeniero
    • Thread
    • ability cals caretakers conversation crying dad diagnosis emotional lability eyes family father hospice insurance life love medicare muscle palliative care pals paralyzed quality of life research software support vent ventilator
    • Replies: 4
    • Forum: Current caregivers
  3. Buckhorn

    Seeking opinions on lightweight, foldable power chairs?

    I was wondering if anyone out there has experience with a lightweight, foldable power chair? I have been looking on line for at least a week. There are many options, actually, but they vary in pricing and somewhat on cosmetics, power, and weight. My husband is still able to walk, but only...
  4. Lkaibel

    And So It Is...

    We were diagnosed this morning. As I think some part of me has actually known since April 2nd when he came and showed me that his left toes did not rise up as high as his right (drop foot) my husband was told he has ALS. We had a whole clinic day actually, and Brian is very interested in...
    • Lkaibel
    • Thread
    • age als als registry back clinic clinical diagnosed dihals foot genetic genetic testing hope info life love pain planning progression quality of life reading slow progression testing wrong
    • Replies: 39
    • Forum: Newly diagnosed
  5. SLAUGHTER1555

    Tired and Broken

    Its been a while since I've posted on the forum and lots has happen. I absolutely hate ALS!!!!!! This has been so brutal on us both to the point i cant even care for him anymore i have hurt my back so bad i can barely walk and move. We've called in hospice to help. It has been 1yr since this...
  6. tripete

    Quality Of Life

    This past week I had another clinic visit. One of the the things that has struck me as I have been thinking about what was said to me was how many times the phrase "Quality Of Life" was brought up. I refuse to take medicine for the pain and cramps as I do not react well and they make me foggy...
    • tripete
    • Thread
    • bipap clinic cramps depression ice life medical medicare medicine meds pain progression psychology quality of life support treatment trilogy wheelchair work
    • Replies: 32
    • Forum: General discussion about ALS/MND
  7. twitchykitty

    Update re: overnight breathing

    My last thread closed so just a quick recap ( from 6 weeks ago) I added daytime issues I don't breathe well enough on my back when I wake up so I have to roll on my side where it's much easier (but uncomfortable) My last FVC was 33% August 2015 (local dr is chasing the new test up this week...
    • twitchykitty
    • Thread
    • abdomen ache als clinics back bipap breathing clinics confused diaphragm eating fvc hours life morphine muscles night quality of life respiratory sleep symptoms test update weakness
    • Replies: 14
    • Forum: General discussion about ALS/MND
  8. K

    Exercise!

    I have been going to a workout place, three times a week now. I started 4 weeks ago. It is 100 degrees in the room, it with a lot of elite athletes. It's hard to describe, but I would say it's mostly calisthenics, and stretching. It's about an hour or so, he starts with a motivational "lecture"...
    • kenschatz
    • Thread
    • afo balance bipap breathing chair clinic exercise feeding feeding tube foot fvc helpful hours life motivational muscle peg quality of life shower sleep trilogy wanted
    • Replies: 19
    • Forum: General discussion about ALS/MND
  9. S

    New CAL Member and Equipment Information

    Hi Everyone, Although I have visited this forum from time to time, this is actually my first posting but I hope the information that we want to share will also be of help to other PALS and CALS out there: But first I thought I would start off by giving you some background on our story so you...
    • SJFBC
    • Thread
    • ability age biopsy clinic cramping cramps diagnosis exercise eyes fasciculations father hope hours lift mobility morale muscles neurologist pneumonia pressure pressure sores progression quality of life sad story swelling symptoms tests twitching wheelchair worry
    • Replies: 29
    • Forum: Newly diagnosed
  10. C

    Helpless and scared

    My mom was diagnosed with FTD in February of this year and then diagnosed with ALS in September. We were told that it's rare for the FTD to happen first but not unheard of. We started noticing changes about two years ago and after taking her to numerous doctors we were told its FTD. I feel like...
    • Corina
    • Thread
    • ability als back breathing dad diagnosed feeding feeding tube ftd hours life quality of life rant reading scared tracheotomy
    • Replies: 10
    • Forum: ALS and frontotemporal dementia
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