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“Fear takes control — fear of the unknown Aware of what will hurt you You’re prepared to remain this way So sad yet safe with your afflictions Afraid to start a brand new day.” Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and…

I inspected the fish through the curved glass of a refrigerated display case. Wild-caught Lake Superior whitefish and trout — both raw and smoked — lay in metal trays. “I’d like that piece of smoked trout in the middle. Underneath the top one,” I specified. I picked a plump…

“Just what makes that little old ant Think he’ll move that rubber tree plant Anyone knows an ant can’t Move a rubber tree plant But he’s got high hopes …” — Frank Sinatra, “High Hopes” Recently, I watched the movie “A Hole in the Head” for the first time…

Even though I believe I’m a pretty good planner and can strategize with the best of ‘em, last week threw me into a planning frenzy. I was anticipating my first in-person ALS clinic visit after nearly a year of online appointments with my neurologist. Pre-pandemic, I had many in-person…

I watched a tribute video to a husband and father who recently died from ALS. Tears filled my eyes over tender moments of a toddler kissing and hugging his dad, jumping on his lap, and driving matchbox cars on his head while the dad smiled. The man radiated love for…

“But if I had the Chance to start all over I would be wishing today On a four-leaf clover … If I could turn back The hands of time.” The 45 rpm single “Turn Back the Hands of Time” by rhythm and blues artist Tyrone Davis was a…

Last week, I had several email exchanges with ALS patients who wrote about their feelings of anger because ALS had robbed them of the life they had planned to live. I certainly can relate. I felt exactly the same way after my diagnosis. I told them what had helped…

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is…

“Ch-ch-ch-ch-changes (turn and face the strange), Ch-ch-changes, just gonna have to be a different man.” — David Bowie Many people dislike change, some to the point of fearing it. According to author and motivational speaker Scott Mautz, writing for Inc.com, “Overcoming a fear of change can be as…

My husband, Todd, and I marked 18 years of marriage on Tuesday. The memory of our seventh anniversary is seared into my mind. He bought me flowers from a Mayo Clinic gift shop. We were in Rochester, Minnesota, getting a second opinion on his ALS diagnosis. After a battery of…