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  1. M

    He won't let me put the BiPap on!

    Man, reading these posts makes me really glad that I'm alone in my house. I have caregivers during the day at odd hours, but nobody is going to tell me to use a bipap, feeding tube or get a vent. I would love to die during the night while I'm asleep. That would be infinitely better than going...
  2. M

    Q&a

    Excuse me, but this is the internet. If you refuse to use it, please don't read stuff on this forum. Well, I have ALS and I'll just tell you that twitches do not mean you have ALS. I didn't twitch at all until years into the disease. Mine started with cramps and weakness. ALS starts in one...
  3. M

    PhilM

    This is awful. I'm so sorry to hear the news of Phil's death but I'm glad the end was peaceful. He was just a dear man.
  4. M

    limited income for caretaker

    I have had hospice helping me with aides and nurses and pads galore for over 6 months. They are wonderful and would provide even more help if I would let them. I can also eat and breathe on my own and I'm not planning on extending my life with a PEG or a bipap. When I can't eat or even when I...
  5. M

    Limb Onset ALS - How did it feel in your legs/hands

    Mine started in my right foot almost 3 yrs ago. It's been going upwards ever since, took a year to get diagnosed. It's in my tongue really bad and I talk like I have mush in my mouth. Still can swallow. Breathing is ok. But my legs won't hold my weight so I can't stand up. Can move them sideways...
  6. M

    Feeling Afraid

    Hi Rox, I hope like heck you are stronger than I was when I failed TWICE in the catheter game. First time hospice tried it the hose was too short and I couldn't turn over in bed, just clung to the side and didn't sleep. It was gone the next day. Then I had even more trouble standing in the...
  7. M

    Attitudes towards end of life issues among people with MND

    I tried to answer the questions, but they were repetitive and eventually my hand and arm got tired. I quit halfway through. You have to remember that we are ALS patients. Make the surveys SHORT.
  8. M

    Has ANYBODY ever had this happen?

    No worries on that score, Notme, for sure it's ALS that's causing the swelling in my feet. I don't have any other health issues. Just ALS and that's plenty.
  9. M

    Has ANYBODY ever had this happen?

    Well, I guess my aide could help me, but my arms and hands are the very last things to go. I can't lean over and put socks on though so I'd need help. I bet we could get the stockings on. I just wonder why the nurses didn't think of it already. They're always ready to suggest a pill as the solution.
  10. M

    Has ANYBODY ever had this happen?

    Good idea,Jeff. I'll ask my nurse about stockings on Monday.
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