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  1. Ken15

    Father with late-stage ALS, seeking advice on spending valuable time and quality of life

    Something my PALS enjoyed was looking at (and reminiscing about) family photos from earlier times to the present. Our children growing up through the ages and more recently, our grand children. From earlier times, you can do this with the physical photos and with digital cameras/smart phones...
  2. Ken15

    C9 Question

    An alternative choice for your sister: she does NOT have to get tested (and/or receive the results). If it fits her emotional demeanor, she could continue to live her life ALS-free and IF she begins to develop symptoms, she knows exactly what to do. As background, my PALS had the C9 mutation...
  3. Ken15

    reliable info for offspring considering c9orf72 testing

    My wife was diagnosed with ALS in October, 2017 at the Mayo (FL); diagnosis was confirmed in November, 2017 at Johns Hopkins. Upon deciding to know, she was notified that she had the C9 mutation in January, 2018 (again, confirmed by Johns Hopkins). The Mayo and JH offered our 4 adult children...
  4. Ken15

    What happens to my pALS if something happens to me?

    If your local Emergency Services supports Smart911, it could save precious time in an emergency. Ken
  5. Ken15

    CALS Roll Call Continued

    CALS tread a fine line between past, present and future. It's terribly hard to do, but we can't dwell on the past - ALS doesn't allow for it - it will eat you up. The future is scary as heck, but this forum and a good support network can help tremendously. The present is where the majority of...
  6. Ken15

    CALS Roll Call Continued

    I, too, am very appreciative of the information and support provided by this forum during our ALS "journey". Did it make it "easier"? A resounding NO. Did it make it more understandable? YES, indeed. Understanding the (general) progression of ALS, though individual the actual path may be...
  7. Ken15

    Raising the white flag

    Karen, Thank you! Ken
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  9. Ken15


    As my PALS time winds down, the pandemic has afforded our children (and grand children) the ability to visit more frequently. At the end of her latest visit, last week, our 6-yr old grand daughter left this with Kathy. Gabby's favorite color has always been purple, the color she gave to...
  10. Ken15


    A mind-numbing list of alternative treatments: ALS Untangled Completed Reviews Ken