Recent content by Madison1943

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...

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...

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.

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...

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...

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...

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.

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.

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.

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

Hi Ann, I knew you'd know about elevating feet. thing is the feet aren't hanging--the whole bottom of the bed rises so the feet are supported. They feel dandy during the nap--it's afterward. And my usual Vicodin doesn't do squat. I have a diuretic I can take, but that makes my breathing worse. I...

This stinking disease is so challenging. The hospice nurse told me to elevate my feet becuz they're swollen. So I just took a nap and elevated the feet the whole time. When I put the bed back both my thighs got real heavy and wouldn't move. I'm not doing that again. Have any of you experienced...

An ALS patient I met in my one and only support group 2 yrs ago just died. He donated a kidney--lived in Maryland. His obit was in the Hagerstown Herald Mail. He died in the hospital here with palliative sedation.

Sue, my daughter Amy is taking a long raft trip on the Grand Canyon river this summer. She is a seasoned rafter, owns her own boat, etc. and has taken several trips on other rivers. she says the GC is the most challenging river and she needs to practice, practice. She is very daunted by it even...

If all he wants is for you to sit with him and watch a game or read with him, why don't you hire someone to do all the housework and sit with him? The laundry and cobwebs will always be there, but he won't. Just a thought.