Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From…
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While living with ALS, I have days when I’m low in spirit and need something to lift me out of the doldrums. When this happens, two things help me: a visit from my daughter and some great music. Recently, I got both at the same time. What a…
“I’ve noticed a decline in my mental health this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but…
ALS challenges our sense of self and ability to accept change. However, the triggers that motivate us toward acceptance can be different for each patient. Recently, on the ALS News Today Forums, we’ve been having a lively response to the question, “What is the most difficult thing for…
Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…
I have an imaginary toolkit filled with a variety of stress-reduction strategies to help me when life’s speed bumps appear. Living with ALS is stressful enough, but add in TV news, social media, and other minor dramas and I can quickly feel overwhelmed. In addition, I was bored…
A couple of weeks ago, I lined up a daytime caregiver for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the “Bellied Up” podcast, a call-in advice show with comedians…
“Do as much as you can, but be careful. And don’t overdo.” Those were the words of advice bouncing around in my head during the long drive home from one of my first ALS clinic appointments. I’d brought a list of questions for my neurologist, including one asking if…
On Feb. 17, a party was thrown in Atlanta, Georgia, in celebration of ALS patients and their caregivers. It was a chance to promote awareness about the ongoing needs of the victims of this treacherous and unrelenting disease. A party for ALS? Why not? Like the Ice…
After years of living on the edge of life and death with my husband’s ALS, I sometimes wonder if my body has quit reacting to stress in a normal way. Trying to squeeze in lunch before I ran to town for our 18-year-old daughter’s doctor appointment, I reheated…
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