Living with ALS certainly has its challenges, which lead many of us to rely on workarounds. These are creative, temporary solutions that solve an everyday problem; I first wrote about mine in “The ALS Workaround Dilemma.” But the key word here is “temporary,” because workarounds run the risk…
About a year ago, I wrote about how ALS patients may receive home healthcare on an uninterrupted basis, with expenses covered by Medicare. Since then, there has been both good news and bad news. The good news is that I recently “celebrated” my two-year anniversary of getting that coverage.
I’ve always believed that I was open to new ways of doing things, but having ALS has put me to the test. My pride and a little denial have often gotten in the way of my seeing the obvious solutions to a problem. Thank goodness an “aha” moment came…
Awareness Breeds Compassion. Compassion Drives Enhanced Funding. Funding Generates Heightened Innovative Intervention Ideas. It all starts with awareness. May is ALS Awareness Month. It is not a coincidence that I chose three words beginning with the letter “I.” I believe that a single measure of awareness yields…
Sometimes we need a nudge to help us get over a mental funk and back into the swing of life. My nudge came from a pair of white ankle-foot orthoses (AFO) with whom I had been having a love-hate relationship. Love ’em or hate ’em, they did end up becoming an…
A zero-sum game is a situation in which the accumulation of gain is accompanied by a sum of loss of equal value. The net result is always zero. From the get-go, ALS seeks to make that outcome an impossibility. It strives to force a plunging and irreversible deficit. In the…
“If anything can go wrong, it will.” — Murphy’s Law That adage could be the ALS anthem. From the onset of mysterious symptoms to the serpentine-like diagnostic process and worst-case outcome, and by watching your body unfailingly obey his maxim, the prophet Murphy is seemingly ever-present. The…
Recently, I attended an “Ask the Experts” educational seminar sponsored by my local chapter of the ALS Association. It’s an annual event that presents current information on ALS-related topics and allows attendees to exchange ideas with fellow ALS patients. This year’s theme was “ALS clinical trials…
It doesn’t matter if you are a patient living with ALS, or the person who provides care, ALS can feel overwhelming. Too many changes, too many decisions, and our own energy ups and downs can make us want to throw in the towel and holler, “I give…
*** Instant Karma’s gonna get you, Gonna knock you right on the head, You better get yourself together, Pretty soon you’re gonna be dead. — John Lennon *** One of the dictionary definitions of karma…
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