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...
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...
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...