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ECpara

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My husband has Bulbar onset ALS. I'm noticing his whole neck and jaw area getting thinner, flabby skin under neck, too. He's also having Charlie horses in his neck. Will he lose the ability to hold up his head? Does it sound like this will be soon? He's otherwise very mobile. Has anyone else experienced this with bulbar onset?. Is a neck brace in the near future? Thanks!
 

Ms. Pie

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Mar 26, 2011
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1,794
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It is quite common for PALS to not have the neck strength to hold up their heads. There are neck braces for this. See if your local ALSA Loaner closet has one that you can borrow or maybe someone here can recommend a brand that's comfortable. I don't need one yet but will one of these days. Good luck!
 

momap53

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There are some older threads about neck braces, who liked one over another and why. Maybe Lori or someone else can recall and post some links. I think Abbaschild and Shanethepain talked about them.
 

rachelg

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My husband - bulbar onset - got weakness in his neck early on. He described it as his neck just literally not being strong enough to hold his very heavy feeling head up.

He started using a collar quite early on just to feel well balanced and when sitting without a collar on he would have a pillow snuggled round his shoulders just to try and support it.

He started with a fairly soft foam bead filled collar which just gave enough support to relieve the discomfort. He also had a h e a d m a s t e r collar which was very good.

Travel neck pillows are quite good but a bit sweaty.

Hope this helps.
 

Sharks1967

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AU
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Queensland
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I've had the same thing with my neck. It started about 12 weeks ago and now mornings are good but by the afternoon it becomes very hard to hold my head up. I've invested in a soft coller which I tend to use a bit, or if I have a lie down for an hour or so and give my neck a rest it will come good for a while.
Danny
 

Luke

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Same issue here. Started noticing the flaccid skin / thinning of face and neck months ago, and then my neck was the first area to start showing clinical weakness. At 32, I was about to call a dermatologist, then learned its this condition causing it. No diagnosed yet, and not yet in need of a brace, but can relate with the heavy head and loose skin. I'll keep an eye on this thread.
 

sadiemae

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Do a search on this forum using the search tool at the top of the page in blue. Just type in neck brace. The one we like has been banned from being mentioned on here, Shanes Brace, but it is the only one my husband can wear. More sophisticated ones are the Headmaster.
 

rub87ST

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There are some older threads about neck braces, who liked one over another and why. Maybe Lori or someone else can recall and post some links.
 

rub87ST

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Buy Eligible Print Magazines & Get Digital Kindle Subscriptions Free
 

marypat

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Joined
Jan 3, 2012
Messages
272
Reason
PALS
Diagnosis
11/2010
Country
US
State
OHIO
City
london
i have neck weakness and use a head master and another one called s ha n e ' s b r a c e. the second isn't covered by insurence but i like it more and it can get wet, i use it on our boat.
 
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