I remember Marta Pie and Sharon. And many others who have fought the good fight and were tireless advocators for PALS.
I have been around for a while and have expanded my forums to include Facebook PALS groups and PLM.
It is very hard to see so many diagnosed long after me pass on. The double...
Grateful for great supportive family and friends
My online forum and fb PALS with whom I can talk talk candidly
Having slower progression that affords me more time to advocate for a cure, Enjoy nature, friends and family
I asked that people donate to ALS TDI as part of the challenge. If they donated to ALSA that goes to the national level I think.
The Walk money goes to my local ALSA chapter who assists me free of charge with equipment and support. They really help me a lot.
So you may want to spin the local...
My sister took several years of ASL courses. I learned some too. We both have a slow progressing form of ALS. It helped a lot to keep our minds busy and sharp to learn something new.
I use my iPad to communicate mostly as I still have use of my hands.
But it is nice to use ASL to communicate...
I tried a Headmaster collar and didn't like it.
I also use the Shane's neck brace whenever my neck muscles start to hurt, or whenever I will be jerked around. ( like in a boat, on lawnmower etc.
I try to lay down for a few minutes each day to just give my neck a rest.
I use chewable papaya enzyme from GNC whenever I get that thick stuff that almost chokes me. It works great for me. Normal dose is up to 9 daily. I take 5 when I get thick stuff. If not better in a few, I take 4 more.
Dr. Bedlack at Duke had told me about papaya juice in 2009 and I tried it, but...
PALS are needed in these two states. I tried to volunteer, but they had enough volunteers in VA.
Very simple to do. They come to your home to take samples. You must be registered with the CDC's ALS registry to participate.
CDC - Amyotrophic Lateral Sclerosis: ALS BioRegistry
I have been on Nuedexta for years since it was in clinical trials. My neurologist said in bulbar onset people the part of the brain affected sits very close to the emotional center.
My responses laughing crying we're usually in context but WAY out of proportion and I could not stop. It went on...
So sorry for the diagnosis. I have bulbar onset with PSA. The laughing and crying were very stressful and the episodes left me feeling like I was hit by a truck. I take Nuedexta for that. It has helped me greatly by reducing episodes and making me feel more stable.