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Joined
Feb 24, 2014
Messages
9
Reason
Loved one DX
Diagnosis
05/2013
Country
UK
State
LOTHIAN
City
Tranent
Good Morning,

My father was diagnosed with ALS in May 2013, at the moment his upper funtions - ie speech and swallowing are affected.
What I would like to know is this.....
My father cannot settle at night. He is constantly out at 24hr shopping malls and does not seem to want to go to bed. When it get's dark he get's very agetaded and turns all the heating off in the house.
Has anyone seen their loved ones act like this ?
 
I can't speak about this in relation with ALS, but I have seen it in some patients in the past. Does he sleep in the day? We call it sun downer's syndrome, where people become more awake during the night. It is sometimes associated with dementias, so I would probably speak to his doctor about it. I hope that this is not the case, and that he is just dealing with the stress of the diagnosis, but in any case it warrants a talk with the doctor.
So sorry that you have to deal with this.
Paulette
 
I actually get the feeling he is scared to go to sleep at night incase he doesn't wake up, he does sit and sleep alot during the day.
He also cannot lie flat because of his difficulty swallowing, he feels like he is choking when lying flat.
 
Night restlessness is really common with ALS, and there seems to be several causes. As Paulette said their could be some dementia of the frontal lobe involved, it is worth looking at.

But as you said, it could be simple fear.

My husband was diagnosed also May 2013 with bulbar onset. He was always up and down all night, but not out at shopping malls thankfully. Now he cannot walk except very short distances in the house with walker and a person assisting. He is hoisted into a hospital bed at night and he can't move in the bed let alone get out. He can 'just' operate the tv remote and he tends to use the tv as comfort. He does have some fronto temporal dementia too, but I feel a lot of his problem at night is fear as his breathing is diminishing.

I agree, raise this with the doctor as some medications may help, counselling could help if it is simple (well nothing is simple with ALS) fear.

Horrid monster this disease!]]
 
ALS robs people of choices. They can't choose what they want to say or eat. Eventually they can't travel or walk where they choose.

He's an adult with a shortened lifetime. As long as he can move around at his own will, let him.

One good thing to do is to let him do what he wants to do.
 
>My father cannot settle at night.

it is similar for me -- I go to bed (try by midnight), but always wake before 4 AM, sometimes 2-2:30. Then the head-games begin and I cannot get back to sleep. Usually the wakeup is caused by gagging, so I get up and go into the office and vegetate in front of the computer. Usually try for a final hour or two around 6, but the routine is overall tiring.

>He also cannot lie flat because of his difficulty swallowing, he feels like he is choking when lying flat

I have the same situation. For me, I think it is mostly fear.

You can tell him from me that he is not alone!

Max
 
My husband has never had difficulty sleeping at night, but I have. I have discovered that if I listen to a talk show podcast it helps me sleep. I have a very hard time turning off my brain, but when I listen to someone else I am able to. I have listened to the same pod cast several times, but never seem to get past the first 15 min before falling asleep.
Max do you sleep with your head elevated? We finally just got a hospital bed, and it has been nice, not to have to deal with 10 pillows.
 
Hi, Paulette --

>Max do you sleep with your head elevated? We finally just got a hospital bed, and it has been nice, not to have to deal with 10 pillows.

Kind of -- I have to stay on my side, but I can usually turn over (unless the damn dog is laying on the cover). When I do, that is when I am most likely to choke/gag-- which pumps the adrenalin, and then I am up for the count :-(.

I use two pillows now: one for my head (I put the useless left arm under it) and one between my legs -- I had bilateral knee replacements a year ago, before I knew about the ALS.

I can still walk, although I now use a walking stick, as I am a bit shaky. All-in-all, I am pretty lucky so far.
 
If he's restless to the point that he's out wandering malls in the middle of the night, I would suggest you start keeping a behavior notebook... when does this happen, are there other behavior changes that you've noticed, when do they happen? Do there seem to be triggers. If it seems to be developing a pattern, especially since it seems like he had bulbar onset, I would bring it to the attention of his neurologist and talk about whether an FTD evaluation might be a good idea.
 
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