It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any game that requires writing or moving is a challenge. That would include most games, but we can make some…
Lately, living with ALS amid the continuing world health crisis has me dialing my resilience-meter up to “high.” Why? Both have limited treatments and no cure in sight, and convert our old “normal” lives into an ever-changing world of new normal. And both require resilience. Resilience is our ability to…
“How am I supposed to drive when I can’t see anything?” my nearly 16-year-old daughter asked. Sara and I were logging night-driving hours, which are required before she can take the second segment of driver’s education in January. She already has 12 hours behind the wheel, mostly during the day,…
“Catch a Cannonball, now, to take me down the line My bag is sinkin’ low and I do believe it’s time To get back to Miss Fanny, you know she’s the only one Who sent me here with her regards for everyone Take a load off Fanny Take a load…
We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, carried it back to our house, and we put it in the tree stand in the living room. When we…
“And I hope when I get old I don’t sit around thinking about it But I probably will Yeah, just sitting back trying to recapture A little of the glory Well time slips away and leaves you with nothing, mister, but Boring stories of Glory days …” Bruce Springsteen’s…
When I was diagnosed with ALS, one of the many things that changed was my relationship with clothes. I used to buy and wear clothes that caught my fancy. Now, living with ALS means I’m choosing comfort and the ease of getting myself dressed over the latest trend. Has this…
My husband Todd’s lung strength is weak from ALS. He’s gotten sick a few times in the last several years, and each time we wondered if he would pull through. It was scary, and it has caused us to calculate the risk of going out in public or receiving…
“In-A-Gadda-Da-Vida” Last week, my pastor humorously suggested I should challenge folks to put forth songs or lyrics they believed I wouldn’t be able to kick-start a column with. He further suggested the above mentioned track by Iron Butterfly would be such a stumper. I respectfully submit that he…
My ALS symptoms showed up in my feet and legs in 2010. Normally strong and coordinated from years of gymnastics and fitness classes, my lower limbs became weak and unreliable. That’s when my neurologist recommended I begin using a walker. To be precise, she meant I use a…
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