Oh My God — I Have ALS
The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people…
Columns
ALS Support Groups Are Going Online
Last week, I joined about 20 other ALS patients in attending an online meeting on Zoom. While the speaker scrolled through her slide program, I thought, “Wow, no parking lots! We’re all here and no one had to deal with a parking lot!” Maybe I should explain my negative association…
Hanging Up the Keys and Other Tough Decisions
I thought my husband, Todd, should quit driving long before he was ready to hang up the keys. When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself.
‘What’s Love Got to Do With It?’
“Without your love, I’d be nowhere at all. I’d be lost if not for you.” The inspiration for that Bob Dylan song is a mystery to the general public. However, the lyrics come close to capturing my indebtedness to…
Caregivers Are Only Human
Ten years ago today, my husband, Todd, was diagnosed with ALS. I’m grateful that our kids have had their dad much longer than we thought they would. When Todd was diagnosed, Sara was 4, and Isaac was just 9 months old, so we thought they might not even remember him.
ALS, Before and After
Author T. H. White‘s collection of novels titled “The Once and Future King” depicts the legend of King Arthur. While the title suggests a symmetrical before and after, in reality, it is rare that such a balance is observed.
Celebrating 3 Years of ‘Living Well with ALS’
This week, I’m celebrating my third anniversary of writing columns for ALS News Today. This special column expresses my gratitude for having the unique opportunity to share my thoughts and wellness knowledge with the ALS community. It is a thank-you to loyal readers for their support, comments, and friendship.
Applying the Science of Happiness to Caregiving
I cried buckets in the months after my husband, Todd, was diagnosed with ALS. When I met with a counselor, I described my overwhelming sadness. “It is sad,” he agreed. “When you read stories, they have happy parts and sad parts. This is a sad part of your story.”…
Houston, We Have a Problem
The hubbub percolating around the SpaceX launch last weekend reminded me of the role a committed and engaged support team plays in averting and staving off peril. In any successful outcome to a human hostage confrontation, two common strategies unfold. First,…
How I Navigate My ‘ALS Time Zone’
During my past 10 years of living with ALS, I’ve had to adapt to a lot of new normals. One of the most important has been learning to navigate what I call my “ALS time zone.” It represents the unique pace or rhythm of my day, versus the pace…
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