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There’s a military saying – “no battle plan ever survives the first encounter with the enemy” – this is doubly true for ALS patients. Spend any amount of time on this forum and you will see the spectrum of experiences; they vary far and wide. So, what’s the plan for K.O.? Don’t know, but the...

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...

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...

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...

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

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...

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...

Karen, Thank you! Ken

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...