As one of the moderators for the ALS News Today Forums, I get to welcome new members and learn a little bit about each person. Many of these new members are newly diagnosed patients. Besides wanting to learn as much as possible about ALS, they also tell me they…
I’ve written before about how the world has been shrinking for my husband, Todd, and me. Some activities, such as going on vacation or visiting people in their homes, became too difficult, even before social distancing mandates, due to Todd’s worsening ALS symptoms. But we still made an effort…
“Run away, run away/ It’s the restless age/ Look away, look away/ You can turn the page/ … Take away, take away/ This house of mirrors/ Give away, give away/ All the souvenirs.” The other night, I awoke to a…
ALS is certainly a serious condition, and there is nothing funny about it, but many funny moments can happen. For my caregiver husband and me, holding on to a sense of humor is such an important part of our relationship that we can’t imagine letting a day go by without…
My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives. Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then…
“Your lifelong membership is free, Keep a-giving each brother all you can. Oh, aren’t you proud to be in that fraternity, The great big brotherhood of man?” Those lines, written by Frank Loesser for the musical…
Although it’s hard to find much to celebrate in 2020, this year happens to mark an important milestone for my husband and me. I’m celebrating achieving 10 years of living with ALS, and for my husband, 2020 marks a decade of his role as a caregiver — to me. I…
Last week, we had an early snowfall, even for Michigan’s Keweenaw Peninsula. Snow frosted the tips of trees and blanketed the grass, leaving small bits of green peeking through. I posted a picture on social media and wrote, “It’s beginning to look a lot like Christmas. Gearing up for…
“The world is covered by our trails / Scars we cover up with paint / Watch them preach in sour lies / I would rather see this world through the eyes of a child.” Those lyrics…
I love being in win-win situations. We all do. Especially while world events continue to push the boundaries of our patience. And my latest project offers me many wins: It’s the perfect addition to my current home voice program, and I’m helping to research ALS voice issues. Like 80%…
