We are thrown into this abyss unprepared and with overwhelming feelings of fear and sadness. Other than this forum, there is no day to day support for us. Unless you have provided care 24/7 for someone with ALS,
You will never truly understand what it's like.
Did I feel inadequate? Absolutely...
It troubles me to read about PALS who fear suffocation and choking when those fears are not warranted. When doctors say “respiratory failure,” they need to do a better job explaining that this does not mean "suffocating" or “choking.” Virtually all researchers have found that the vast majority...
It is with sadness that I post to remember a beautiful woman Laura (known here as fionae).
Laura had bulbar onset and lived alone. I don't know how she did it, she will always have my deepest respect and admiration. We emailed constantly, but I felt so totally helpless from the other side of...
Hello,
..... I'm not sure where to begin. I've never written or have been part of a support group, but I know I need advice and maybe vent a little. My name is Erika and my mom was diagnosed with ALS last June. Her symptoms began with her foot dropping about 2 1/2 years. Her symptoms...
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Hi I was a typical 56 year old female healthy just retired in April and enjoying life golfing 4-5 times s week
At end of July I just had this feeling of malaise come over me. I never felt like that before. I noticed I had been really stuffed up for a couple months because of the record rain we...
I decided to write this message as I understand that my first post in the DIHALS section has caused some concern among some of our undiagnosed members. The purpose of this post is to clarify a few things and to explain why you should not compare your situations with mine.
To begin with, at no...
Is anyone aware of some type of medic alert wrist band which functions like a Medic Alert, but instead of notifying medical personnel it would alert the person wearing the matching band? A PALS to CALS alert device. I have lost my ability to speak and fear if I were to fall I can't call out to...
Hello everybody
I hope this is my last post here, it's been a bumpy ride trough last half year by I'm getting over my fear of mnd
My symptoms that are consistent with fasciculations, jerks and spasm are not any better, in reality they are worse
No weakness or any other signs of als
I'm just...
Hello to this site. First and foremost, I want to say to the people already dx'd that I mean no disrespect in visiting here for more information. I simply am worried to the point of losing my sanity and want help from those who know best.
My symptoms began three months ago with numbness in my...
My husband was complaining of pain this evening that seemed to migrate from chest to lower - stomach / trunk. He has a fear of his heart failing and becomes anxious when he has anything resembling chest (heart) pain. I'm just wondering how one would know if it were heart vs. other muscular...