Who would’ve guessed that wearing a pair of ankle-foot orthoses (AFOs) while on a simple haircut trip would turn into a near disaster? But with two mini-miracles and one big lesson about living with ALS, the day was saved. Although I can tell this story in many ways, I…
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This afternoon, I loaded our household trash into the back of my husband’s accessible van. After opening the rear hatch and lowering the ramp, I simply dragged our three 33-gallon trash cans up the ramp to where Todd would normally park his power wheelchair, then I drove to the transfer…
Over the past six years, I’ve welcomed over 2,000 people to the ALS News Today Forums. It’s one of my many duties as a forums co-moderator. The other things I do include being alert for spammers, adding interesting topics to spark group discussions, and answering members’ questions. Although a high…
Moments of daily life with my husband Todd’s ALS frequently put both of us in panic mode. It makes me wonder if we should take more precautions — but there are trade-offs. The other day, for example, food got stuck in Todd’s throat while I was feeding him chicken…
Last week, I fully intended to write a new “Living Well With ALS” column. I sat down, flipped open my laptop, gazed out the window, and got lost in a stare. As the minutes ticked by, my computer screen finally clicked off, my mind blanked out, and I had…
I was enchanted on the first date with my late husband, Jeff, when our conversation turned to work. It’s an odd thing to say, because we can be conditioned to believe that work should be a less important aspect of our lives. But what I noticed in Jeff was a…
For more than a decade living with my husband Todd’s ALS, I’ve been the finder and procurer of equipment that makes both of our lives better. Since disease progression has made travel to our closest ALS clinic too difficult, we’ve had to figure out how to manage the…
With shorter days and overcast skies lasting for weeks due to lake-effect snow, darkness comes quickly after sunset here on Michigan’s Keweenaw Peninsula. Because our nights are long, many of our cross-country ski trails are lit so that people can use them after work. I try to ski at…
Do you have an ALS “inspiration folder?” I do. And I just added another name to my ever-growing list. Even though most people in my folder don’t have ALS, what inspires me is that despite their dire circumstances, they dare to have goals and find ways to…
As we head into the new year, I’ve been in decluttering mode. I sorted through my linen closet and discarded worn sheets and pillowcases. I sorted through files and found old tax returns, bank statements, and receipts, and I burned sensitive papers in my mom’s sauna stove. And then I…
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