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emartin

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Jan 17, 2006
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My husband was diagnosed 8/05 with ALS. The 12/05 we were told it is bulbar ALS. He was been so sleepy the past 2 years. In July his gait was was unsteady and this lead to his hospitalization and diagnosis. He is still able to walk, altho often walks backwards, before getting his balance and going forward. He has fallen a few times. He is still able to eat well, but drools and coughs loudly often. My only problem is he has to have the T.V. on 24 hours a day and sleeps intermittently all day,
Has anyone else had this experience? I am coping well, but the nights are tough. Thanks for sharing. This is a wonderful site.
 

Al

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Country
CA
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On
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NW of Toronto
Hi there. My first inclination would be to sedate him so he can sleep at night. Not the best idea depending on his bulbar symptoms. Check with his doctors. Some days I can stay up most of the night like last night I went to bed at 330 after being on here.
I had found a couple of websites I had never seen before so was checking them out. After going to bed the mind just wouldn't slow down. I was still awake at 5:30. Also sometimes I think that when the doctors tell you that 90% of ALS patients die in their sleep it puts you off going to sleep.
If none of that works there are earphones that can be used with most newer TV's. Plug him in when you go to bed at least then you won't hear the noise. You could wear earplugs. They are cheap and effective. A sleep mask would make it dark.
Hope this helps. Sorry you are here but glad you found us.
Al.
 

john McCarron

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Oct 5, 2004
Messages
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I used to fall asleep and be tired during the day. I was also very restless at night time and only managed 1-2 hours sleep at a time. My consultant arranged for me to have a respiratory check and found that I had high levels of Co2 because of weaken chest muscles. I now use a Nippy at night with result I get 6-7 hours of sleep at night and I am no longer sleepy. With regard to falling and tripping this really serious and it took me a long while to wake up to how serious the consequences could be not only to myself but also my family who care for me. So now if there is a risk I do not do it and I only walk now with assistance.
 

olegrandad

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Jul 19, 2007
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PALS
Country
US
State
Wisconsin
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Oconto
Wife with ALS

My wife would go to bed at 3 or 4 in the afternoon, but then wouldn't sleep thru the the night. She can't swallow so she drools constantly. She often chokes on her own saliva. Even with all that, I miss her terribly and want her back home.
 
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