Old 01-23-2014, 03:51 PM #16 (permalink)
Pkmado's Avatar
New Member
 
Join Date: 2012
City: Niantic
State: CT
Country: US
Diagnosed: 07/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 48
Pkmado is on a distinguished road
Pkmado Pkmado is offline
New Member
Pkmado's Avatar
Join Date: 2012
City: Niantic
State: CT
Country: US
Diagnosed: 07/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 48
Pkmado is on a distinguished road
Default Re: Sleep and neck weakness

My husband is having the same problems. I keep telling him people are using pillows. he only uses one, a memory foam molded pillow. I bought it two years ago and he is just now using it. His legs still work so he hoists his hands up and uses them for supporting his head. however he constantly turns from one side to the other all night long. He is exhausted from little sleep.
I am searching for the best bed for us. Bed positioning in CALS forum was informative however I now feel lost with so many choices. Wanting to make the best choice to forsee changes in future. It is a pricey investment.
Pkmado is offline  
Old 01-24-2014, 02:45 AM #17 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 4,925
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 4,925
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Sleep and neck weakness

I was going to mention also that my husband uses a Roho pillow of the kind that you can add more air in back than in front. So that helps keep the head more stable, along w/ the "sandbag."
lgelb is offline  
Old 01-25-2014, 06:48 AM #18 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 9,761
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 9,761
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Sleep and neck weakness

I wish there was a one size fits all solution. We have so many pillows! We cycle through their use - some stay favourites, some get used and loved for a while, then suddenly one is crap and we start using another size or shape, until it is crap. Day time he has 2 - 3 pillows when sitting in the recliner, and in bed 4 - 6, depending on his position.

I think we are getting to the point we need another assessment about keeping his head up and him straight when other chairs or pwc.

He definitely needs good neck support at night and this is partly achieved by the hospital bed being raised at the head and partly by pillows.
affected is online now  
Old 01-25-2014, 03:40 PM #19 (permalink)
zoohouse's Avatar
Senior Member
 
Join Date: 2013
City: Salmon Arm
State: B.C.
Country: CA
Diagnosed: 07/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 960
zoohouse is on a very distinguished road
zoohouse zoohouse is offline
Senior Member
zoohouse's Avatar
Join Date: 2013
City: Salmon Arm
State: B.C.
Country: CA
Diagnosed: 07/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 960
zoohouse is on a very distinguished road
Default Re: Sleep and neck weakness

My husband's head has a tendency to fall to the right when he sleeps, and then he wakes up with a sore neck. I found this lumbar support pillow that is roughly shaped like a butterfly with the wings being highly stuffed, that actually works fairly well under his head, keeping his head upright. It was a bit wide so I stuffed a small pillow under the right side. Unfortunately it would fall out and his head rolls a bit again.
Well last night I reminded myself that I was and ER nurse and stabilized necks all the time, what did I do? Of course I wasn't going to tape his head down (yet), so I took a bath sheet, folded it in 3rds length wise. I then rolled both ends up equally leaving room for his head. I taped it so that it would unroll, and put it under his head tape side down. He only sleeps on his back, so it kept his head perfectly straight. It was free, and it can be washed. I told him if that didn't work I was going to tape his head, so maybe he actually stayed awake all night to keep his head up, but I don't think so.
Tillie, because we still have 2 weeks before his hospital bed comes I am using 10-12 king sized pillows, and 1 body pillow. Then I use one of those chair looking pillow (the ones that have chair back and arms, people use to sit up in bed with) under his knees with it on its back with the arms facing up to the ceiling. I works really well as a knee bolster and doesn't allow his legs to spread apart. I threw it in the washing machine this week under gentle and it washed up really well, I then hung it to dry.

I am looking forward to not having to do the pillow dance every night and morning, although I know I will still have to bolster his arms and head. Although Canadians really like their "duct tape", so I might resort to that, one never knows.
zoohouse is offline  
Closed Thread

Tags
age, hours, muscles, neck pain, pain, sleep, stiffness, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
als in the neck sullysullivan Do I Have ALS? Is This ALS? 8 01-03-2015 04:06 PM
The Age Old Question: Perceived Weakness Vs. Clinical Weakness max777 Do I Have ALS? Is This ALS? 30 01-31-2014 02:23 PM
Neck weakness, Disability? Janie H General Discussions About PBP 8 09-29-2013 10:32 AM
Neck weakness / Tinnitus AtTheCircleK Do I Have ALS? Is This ALS? 22 03-16-2013 03:24 PM
For The New People: Perceived Weakness and True Weakness notme Do I Have ALS? Is This ALS? 29 11-07-2012 09:02 PM
weakness in body/weakness in neck/mouth edwards5257 Do I Have ALS? Is This ALS? 9 07-18-2012 06:56 AM
onset of neck weakness in last month victor jara Do I Have ALS? Is This ALS? 14 04-25-2012 11:30 AM
Can a pinch nerve in neck cause muscle weakness and twitching aumaliwmedu Do I Have ALS? Is This ALS? 6 06-04-2009 12:21 PM
MRI of neck dldred Do I Have ALS? Is This ALS? 3 04-13-2009 05:28 PM
Neck Twitches PDaddy People With ALS - "PALS" 1 05-20-2008 03:10 PM


All times are GMT -5. The time now is 12:57 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016