- 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?