Recent content by ltbeauti

  1. L

    I love ...

    I love enjoying nature and sitting on my porch. Also love having great neighbors. I go for a walk around the neighborhood when my neighbor walks his dog. I ride around in my c300.
  2. L

    Our eulogy: to Elaine, Sharon, Barney, Chris, and to those preparing to leave ......

    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...
  3. L

    I love ...

    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
  4. L

    ALS Walk vs Ice Water Challenge

    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...
  5. L

    ASL sign language ?

    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...
  6. L

    Neck brace

    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.
  7. L

    very thick saliva in back of throat ...

    I also use a tongue scraper before and after I eat.
  8. L

    very thick saliva in back of throat ...

    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...
  9. L

    Just stopping in to say hello. Hope you are hanging in there. I have been getting weaker, but...

    Just stopping in to say hello. Hope you are hanging in there. I have been getting weaker, but still able to do most things for myself.
  10. Siblings n Mom

    Siblings n Mom

  11. L

    PALS in Vt and. Rhode Island

    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 Contact...
  12. L

    Crying more

    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...
  13. L

    New BCI News

    Listen up: new tool to help people who are locked in - health - 09 November 2013 - New Scientist
  14. L

    First Bad Fall

    I still use a rollator every morning and night. I was diagnosed. 2008. I am in PWC about 75% of the time"
  15. L

    So many questions!

    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.
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