My husband, Frank, has had increasing neck flexion (chin resting on chest) and tilt to the right. His head is now so far forward that the wheelchair headrest supplies no support. He has a neck brace but even this no longer helps.
I am applying heat and he is taking extra strength Tylenol with...
I was finally diagnosed in September after making an appointment at another neurology center. My first neurologist said I was too old (77) for ALS and gave a DX of sensorimotor polyneuropathy. It turns out that I have both and was told by the ALS clinic that it is not unusual for older patients...
a neck support that looks like it will work! it was developed and tested under the name sheffield snood, and it is being marketed under the name headup collar. here is some info on it...
My mom passed away today after a long two years of holding on with ALS. I must say that even though I've read how this disease progresses and that there's no cure, I still thought that we had more time with her. Her sudden passing still feels raw and I'm sitting in my room across the hall from...
I have bulbar ALS and have decided to get a tracheostomy next week. Now, my head hangs down from weak neck muscles. I have tried a couple neck braces, but never found one that didn't hurt my chin. Once I get the trach, I have been told that I can't allow my head to hang down. I'm looking for...
My PALS has bulbar onset.
Today he told me he is having a hard time holding his head up. Does anyone have any tips or tricks for this besides a neck brace?
Hi. I want to share my ALS journey with others to let them know that it is possible to be misdiagnosed with ALS.
Since my story spans 8 years, I will try to give a brief synopsis of what cured (yes, I said CURED) me.
It started in 2009 when I lost strength in my left hand. It quickly spread to...
ability
als
autoimmune
back
biopsy
brain
breathing
cpap
cured
diagnosis
hope
insurance
lyme
mistake
money
neckbrace
neurologist
night
progression
shoulder
sleep
story
support
symptom
test
tests
unknown
weakness