Figuring out how to manage each stage of ALS for my husband, Todd, is a challenge. Each time Todd experiences another loss, I scramble to find answers and resources. Our latest challenge was trying to get proper support for Todd’s Astral noninvasive ventilator. It doesn’t help that we…
Columns
“And you know that you’re over the hill, When your mind makes a promise that your body can’t fill.” This refrain from the Little Feat song “Old Folks Boogie” could have been written with ALS sufferers in mind. It partly portrays our truncated existence. It humorously depicts making the…
This month, I have a few ALS-related activities scheduled that in the past could have easily left me feeling exhausted. But now that I’m following my own advice, I know my recovery plan will let me sail through the month with ease. I’ve often discussed the ALS symptoms of…
ALS has compromised the breathing of my husband, Todd, to the point where his positioning — unless he is using the Astral noninvasive ventilator — can mean the difference between being able to breathe or not. We only realized how bad it was a couple of weeks ago when we…
“The book I’m not reading is riveting The book I’m not reading keeps me up at night The book I’m not reading is better than TV Giving me insight.” These lyrics from “The Book I’m Not Reading,” by singer and songwriter Patty Larkin, vaguely describe a literary quest of…
Every few months, I stop and check in on what’s working in my life and what’s not. It’s a personal wellness ritual that’s served me well in the years I’ve been living with ALS. Today, I’m evaluating how well I’ve been following my intention for 2022 to “simply…
I set my husband, Todd, up on his computer with his HeadMouse and sip-and-puff clicker. ALS has compromised his breathing, so I put on his noninvasive ventilator. I call my mom, who lives next door. She will keep her mobile phone in her pocket. If Todd needs anything, he…
“Will you still need me, will you still feed me, When I’m sixty-four” Paul McCartney wrote the song “When I’m Sixty-Four” four decades before reaching that age himself. McCartney admitted that the number was chosen arbitrarily. He later quipped during an interview that 65 would have been a…
Columns
What Being Rare Means to Me
Throughout February, many patient columnists like me who write for Bionews, the parent company of this website, are writing columns recognizing Rare Disease Month, which culminates in Rare Disease Day on Feb. 28. Not only are we encouraging our readers to reach across patient community lines to learn…
Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries…
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