Remember I am not "fighting" this disease. I am trying to outwit it, gaining precious days and weeks of life by anticipating my needs. I think everybody in the ALS community will agree that there are a few "commandments" that we all should follow.
-Keep up your body weight – move to feeding tube to avoid choking and chewing
-Preserve your breathing muscles by starting early with bipap & sleeping at 30-degree angle
-Continue range of motion exercises religiously to avoid freezing up.
-Maintain excellent skin care to avoid pressure sores
-Avoid hospitals at all cost – protect against falling, UTIs, colds, pneumonia
-Be nice to your caregivers
-Communicate what you want while you can
-Include frequent bursts of hearty laughter
-Avoid filling your days with relentless work projects – add a mid-afternoon nap to restore energy and reduce stress
Follow these commandments and, in the words of the immortal Adrian Monk “you’ll thank me later.”
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