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BOSE

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Does anyone know of a neck brace for ALS people? My fiancee' has been DX with ALS for 7-8 months now. He has foot drop and wears a leg brace. His hands cramp up like claws and I have to rub them until they let up. Now he is having trouble holding his head up. He cannot eat because he says his head is too heavy and now has a lot of neck pain.

I saw a pattern for a home made neck brace for ALS people but it will not let me see the pictures. The site says I have no priviledges. Can anyone help us? We would be so appreciative. Thank you
 

rose

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BOSE, I think there is a problem with the site. I was thinking maybe it was because you had not posted enough to view photos as new members do have to have a few posts before viewing albums, etc, But I went over and found the tread about the neck brace, and it sounds like there is a glitch and CindyM is going to do something to correct it.

take care, :)
 

CindyM

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Bose- the pictures and directions are on the way to you tonight. They will be sent to your private email. Cindy
 

sisgldnhr

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neck brace

We've had a heck of a time with neck braces! I've made them, bought them, asked the Dr. about them......and Don still has neck pain. The Dr. has ordered a ridgid neck brace (he warned us that it must fit right or Don won't wear it) but the problem with that is we haven't found anyone who will fit him for it! The med supply company is order only, they have none to try on. So once you order it, you're stuck with it. I've bought several different types off of eBay but Don says it feels like its going to break his collar bone. I keep making different size braces here at home, hoping that one of them will feel good to him. Currently he switches to different soft braces thru-out the day.

Sis
 

BOSE

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Hi Cindy
I checked my email and found nothing from you. I may have deleted it thinking it was spam. If I did could you email me the pictures again please...I will be looking for them. This is all new to me and I am trying to fumble my way through all this. I do appreciate the people responding more than you know. It is comforing to know others will take the time to respond.
 

BOSE

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CALS
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03/2008
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Thank you Rose for replying. I haven't heard from Cindy as of yet. I just hope I didn't delete her email thinking it was spam. The site still says I don't get any priviledges yet. Just wish I knew what I could do to change that. Time is so short...
 

BOSE

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Hi Sis
My fiancee' was DX with ALS 7-8 months ago. We went to the Cleveland Clinic for a second opinion and they just concurred. Do you go to the Clinic? I see you are from Ohio.
 

rose

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BOSE, I think its just the number of posts you've made (to gain privileges) I just read on the other neck brace thread that you were able to receive the email from Cindy. I hope this is helpful for you guys. take care, :)
 

CindyM

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Thanks Rose. Forgot there were 2 threads on this subject. For aminute there I got all mixed up!
 

Al

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Bose. You should be able to get the pics and PM now.

AL.
 
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