vent

  1. N

    Why does it have to be especially hard sometimes

    This has been a horrible week. My back went out a week ago Friday. Since then the spasms have come and gone and I've muddled through. I know others here struggle from back issues as well. Another "lovely" side effect of this danged disease. Yesterday I was feeling pretty good. Headed to...
  2. J

    How can I not be a monster during the night?

    I need to figure out how I can be less crabby during the night when my husband needs me to turn him or suction him. I realize there's no answer for this but this is something I need to work on. I sleep soundly so when I'm awoken by him calling for me I feel aggravated and I know that's not...
  3. N

    I have read the stickies

    Hello all, I have read both the stickies and they were immensely supportive. My symptoms match those which both stickies suggest are not indicative of ALS. I would say what first brought me to ALS fear was a twitch in my shoulder just over a year a go now. I entered the dreaded Dr Google and...
  4. affected

    Rant - CALS only please

    I am so terribly saddened to tears to realise from that incredible PALS thread that there are so many who are in what I find a less than ideal, sometimes less than acceptable situation. I'm not wanting to talk about specifics of any PALS here, definitely not. I'm talking in a general way only...
  5. M

    Medicaid waiver

    I have no where to express how I am feeling, this place is the only place I could think of. Because I am totally paralyzed and on a vent we qualified for the medicaid tech waiver, which allows us 16 hours per day of nursing. We live in rural VA so it is difficult to find nurses. We had one...
  6. J

    Venting about familiar stuff & softening resentment with humor.(at least a little)...

    Venting about familiar stuff & softening resentment with humor.(at least a little)... I logged on primarily to vent....which I intend to do. However....as I was perusing the newer posts, I came across 'Vistra's post about her college roommate coming to visit, and realized that in some...
  7. 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...
  8. N

    Something to Share

    Hi All, I want to share something that has been a help to us. I first want to say this is not meant to be medical advise. I just want to let you know something I've tried and how it has worked out for us. For several years I've been using Oil of Oregano and garlic whenever I feel a cold...
  9. J

    Our ALS story

    I have posted or commented a few times, but wanted to let you know my love and I. My husband, Bob, was diagnosed in March, the day before his 65th birthday and we were told the standard 2-5 years. He had noticed fasciculations just last December. Unfortunately, he has progressed very rapidly...
  10. KatieNBoyd

    Just wondering

    Hello my friends, The words that you all share and the wisdom that you have spread on these forums has been invaluable. I have been told by a friend and his pastor that I will be there at the right time for someone else that is going through this terrible disease and be able to help them. For...
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