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ALS/ Lou Gehrig's Disease
Caring for someone with ALS has its own challenges and blessings. Come get help with ALS-related matters and be part of a community that cares about you.
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My sister was diagnosed with ALS in August, 2013 - after a year of doctor visits. She has said she does not want visitor's, which also includes me, my sisters and my mom. She does not want us coming to her house. She cannot speak, has had a peg tube since last Christmas, has lost use of her hands and arms, and is wheelchair bound. Her 2 youngest children, her husband and mo... more
Oh my god i dont' think I can take this another minute! i amso tired and over whellmed. I am trying to finish my degree so I am taking a full time load this summer plue care for my husband. Our adult children are tired but hanging in there. My husband gets so frustrated that he can't talk that he just screams at us when we don't understand him. A few weekends ago I finally sai... more
Everyday seems to get harder and harder. If I am home my husband won't allow anyone else to help him except me. He complains that he isn't sitting right in this chair I might only have to move him 1/4" to make him more comfortable, but it gets so tiring. Night and day 24 /7 care. Can anyone tell me what Hospice can do for us? We have home health from the hospital but all she can do for us is "nurse" stuff like Blood Pressure etc. I need a break badly! Any ideas?
My fiancé "T" was diagnosed with ALS in August 2012. We had/have a wonderful relationship... Easy. We had such dreams. We were both 49 when he was diagnosed. Now instead of his wife I am his caregiver. It always seemed he had such a great family and was close to his son, parents, and siblings. One if the most upsetting and hurtful aspects of his illness has been how litt... more
I am caring for my husband he is 55 years old. His ALS is coming on fast, In January 2013 he was walking, working talking. He was doing everything independently, now he has to have help with everything. He can not get in and out of the bed without a hoyler lift and 1-2 asst. He has always been our rock, now he's so helpless.It is so hard to watch on one hand I am afraid the end will be soon on the other I am afraid it won't. How do you deal with this, how do you survive it?
I am the sole full time caregiver for my partner who is in the advanced stages of Limb-Girdle Muscular Dystrophy. She no longer has the use of her arms or legs and requires assistance for almost everything. We have no family support and she is too young for in-home assistance programs. I know that ALS is a form of muscular dystrophy and I'm looking for someone who is a full... more
I found out I have ALS on Sept 6th 2013. It took 3 months of testing so we kinda knew back then. It progressed to where my wife had to quit her job in December. We sold our house before the diagnosis and are in an apartment. No income, living off of savings, 401k, and house equity money. We started building a smaller house that wil be equipt for my needs but don't have enough ... more
So my daughter and I met with the MD yesterday. It is his opinion that my husband, due to his duel diagnosis of ALS and PSP, will lose all ability to communicate before he will fail due to respiratory failure or sepsis. That will leave me with the decision to withhold his tube feedings and let him pass vs keeping him alive with the feedings but without the ability to make any ... more
In reading the comments, people talk about pain. It was my understanding that ALS does not hurt. I'm confused. My husband was diagnosed 12/12/13. He has been in pain for a few years, mostly lower back, and is even having surgery on his back next month. He is in a power chair, and can take a few steps with his walker. He can't dress himself, bathe himself....I am his careg... more
My Mother was just diagnosed with ALS this past summer. Although she was just recently diagnosed, I firmly believe she has had this for the past 5 years. I believe she was misdiagnosed and was being treated for RA when it was really ALS. Anyhow, We have been to a MDA specaility clinic once so far, and were told that it seems to be in the first stages. She is so "boney" in her ... more