I felt twinges of grief as I shopped for a card for a young couple’s wedding. First card: “Wishes on this special day for happiness, joy, and love, along with a future that will bring everything you are dreaming of.” Sigh. I wish my husband and I had a future.
“And you may find yourself living in a shotgun shack … And you may ask yourself, ‘Well, how did I get here?’ … Letting the days go by, same as it ever was.” Although I’m not proud of it, my life, pre-ALS, was largely a fortunate stream of autopilot idleness.
If you happened to read my column last week, you’re probably thinking I’m writing this while sitting on a sunny beach, gazing at the ocean, and sipping a tropical drink with a little paper umbrella in it. That’s because I wrote about my busy month filled with ALS-related events,…
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…
“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…
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