Recent content by R9L13026

  1. R9L13026

    Seeking tips/advice for PWC foot plate management

    Hopefully your PALS will be ambulatory for many more years. I was able to use my cane to pull up and push down my foot plates. Definitely could not bend over to adjust the foot plates. Take care.
  2. R9L13026

    Interested in the interface yor using to control the bed. Thanks bob

    Interested in the interface yor using to control the bed. Thanks bob
  3. R9L13026

    Webinar about VA and ALS

    The VA and ALS: An overview for veterans with ALS and clinicians. January 17, 2019 / 12:30 PM - 1:30 PM Speakers: Christina Fournier, MD, MSc, Emory University, Atlanta VA Medical Center and Colin Quinn, MD, Penn Comprehensive ALS Center, CMJC VAMC ALS Multidisciplinary Clinic Topics to be...
  4. R9L13026

    Another Website that May Benefit

    Hmm since your from the San Diego area I'd guess your neuro is Dr. Ravitts? Great Dr. BTW
  5. R9L13026

    Help from MDA

    Two different organizations. As the unicorn noted. At times they seem to be working together at others they are competing for funding and your donations. The MDA has about 40 clinics dedicated to ALS. Back in 1950 & 60's Lou Gehrig wife Eleanor, served as MDA's national campaign chairman...
  6. R9L13026

    Coconut oil

    Do a forum search, many posts on the subject. I started taking it last month, no real way of telling if coconut oil helps ALS. But if it helps with the good cholesterol then its probably a good overall health supplement. I don't think it will be harmful.
  7. R9L13026

    Cancer & als

    Hard to really tell what triggers the destruction of the motor neurons, I think researchers realize it could be several pathways involved making it that much harder to make headway. The year that my symptoms started I had a stent placed. It was done through the artery in my wrist. Was that...
  8. R9L13026


    ColTravis did you get into the trial? Kim any updates on how the drug is affecting your dad? ECpara how is your husband doing? Guess FA is gone anybody else taking it off label? Anybody else here get on the trial?
  9. R9L13026

    Time to retire from work

    Al, sorry to hear you were only 39 at diagnosis. Hope your retirement is working out. I've enjoyed taking and picking up my daughter from school, been going out to dinner more, trying not to think of ALS limitations and enjoying NFL football season.
  10. R9L13026

    Time to retire from work

    Glad to hear its working out for you. Pit crew sounds great! Thanks for the insight.
  11. R9L13026

    Time to retire from work

    It is quite calming being home everyday. The stress at work was really not doing me any favors. Iphone is kind of neat. Used go ogle maps to find my way around the other day. Well actually my daughter showed me. I still have a way to go on figuring out. Still trying to do the swipe...
  12. R9L13026

    Did your genetic panel result positive?

    From our poll results so far, doesn't look like a lot of fALS here. Yes my 1st neuro diagnosed me with ALS Dec 2011 and recommended getting a 2nd opinion. Got my 2nd opinion in Hawaii. Decided to go to the UCSD neuro in Calif for a 3rd opinion because I didn't believe I had a terminal...
  13. R9L13026

    Did your genetic panel result positive?

    For a poll we are limited to 10 items. The Progress Notes from my dr visit for the Athena panel listed these 9 genes. We should consider another poll to ask these questions :D I like polls! My Neuro thought that researchers have only investigated/uncovered maybe 30% of the genes? Tough...
  14. R9L13026

    Did your genetic panel result positive?

    How many persons with ALS had a genetic test done? I did and was found negative:?
  15. R9L13026

    PEG here we go

    Benefit of Coconut Oil I just picked up a jar of this from Wally mart. Seems it has a lot to give to PALS