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Distinguished member
Oct 31, 2006
Lost a loved one
My dad's version of ALS started in his backand neck. He still had reasonable arm and leg strength, but his back just started to keel over, and he couldn't hold his head up. For 2 years doctors were telling him it was osteoporosis ( but his bone density test didn't show this). I don't know if this is an unusual aspect the disease, or if others have experienced this kyphosis as well. Dad has tried 2 different kinds of neck braces, neither of which works very well, and both of which are uncomfortable. One goes between his chest and his chin, and presses painfully in both locations. It is easily portable and does help him see where he is going, but he hates to wear it. The other is a plastic brace that goes up his back and behind his head with a strap that goes around his forehead. This one requires considerable assistance to put on and hurts his forehead. When he sits down, which he has to do frequently to rest, the strap rides up on his head and has to be readjusted. My questions are: Do other people have kyphosis? What, if anything have you found to help? Any neck braces that work better?
hboyajian, I opperate my computer with a headmouse so I'm moving my head around all day long. Last year my neck became much weaker, to the point where I could only use my computer for a few hours per-day and even that was hard. I now use the brace that I think your Dad tried, the one that goes between my chest and chin... At first, I too found it uncomfortable, it really hurt my chest, it left painful black and blue marks... The person that designed it Obviously didn't have neck weakness. However, after doing some research, I concluded that it was the brace that best fit my needs because it holds my head up, but still allows me enough movement to type on my computer like I'm doing right now. I solved the pain issue by having my wife cut pieces of memory foam and place one between my chest and the brace and another one under my chin. This has worked very well, I use the brace at least eight hours per-day with no discomfort at all. I hope this will work for him.
Memory foam is great for people with ALS, I use it for other things too.
Memory foam is a great idea. He could use some of that to improve seating arrangements as well. Thanks.
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