“It wasn’t me she was foolin’, ‘Cause she knew what was she was doin’, When she told me how to walk this way.” Run-DMC’s hip hop adaptation of the Aerosmith classic “Walk This Way” conjures up images of every therapy session I’ve had during the ALS portion of my…
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The other day while watching TV, I heard the newscaster announce, “We’re in the ‘new normal’ folks, and everybody wants to get out and travel again!” “Well, I don’t,” I thought, and just as quickly wondered, “Am I the only one who doesn’t feel comfortable yet to go out…
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ALS + a Cold = Stress x 10
My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out. Todd had a sore throat and a runny…
“He wants to give the answers but his words are only Answers to nothing … They think this is the answer, But their thoughts are only Answers to nothing.” — Midge Ure “And the vision that was planted in my brain Still remains Within the sound of silence.” —…
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How I Shift Into ALS Manual Mode
To help me get through the ups and downs of living with ALS, I’ve created several mental games. Perhaps they’ll help you, too. For example, when life around me isn’t cooperating, I imagine I’m in a driver’s ed training film. When my body isn’t following orders, I tell…
“Can you believe our little Fafa finished ninth grade?” I asked my husband, Todd, as I flushed his feeding tube. He laughed, and we took a trip down memory lane. Our daughter, Sara, gave herself the nickname. Before she was even 2, she said something like, “Fafa wants that.”…
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Bearing Down With Equine Intent
“Welcome to my nightmare, whoa, “Welcome to my breakdown, “I hope I didn’t scare you …” If there were a “Welcome Wagon” function in the ALS community — whereby incumbent residents indoctrinated new arrivals — surely the introduction would resemble those lyrics from Alice Cooper. Grim statistics and personal…
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When Second Opinions Get Social
Lately, I’ve noticed a strange trend happening in several online ALS communities I belong to. I’ve seen an increase in posts from people who haven’t yet been diagnosed with ALS asking members of the group to essentially offer medical opinions. A typical post begins with a list of physical symptoms,…
On occasion, I’ll page through the photo books my husband, Todd, made for me as Christmas gifts. I feel a sense of gratitude as I look back on all we’ve been able to do since his ALS diagnosis. Family game nights. Outings to sporting events. Family movie nights. Several…
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In Pursuit of the Perfect Omelet
“No one knows what it’s like, “To be the bad man, “To be the sad man, “Behind blue eyes.” – The Who Last week, it was time for the annual agency performance audit of my aides. Actually, owing to COVID-19, the one for 2020 hadn’t taken place. Consequently, the…
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