“I’m afraid you have amyotrophic lateral sclerosis.” My neurologist continued, “Anyone can get it, even myself,” and like Charlie Brown in the classroom, I shut him off completely, reducing his vocal output to a series of horn mutes. I then went home and googled ALS. Devastated by what I…
Just as no two ALS journeys are alike, there is no one-size-fits-all method for dealing with the emotional stress of living with this disease. During this past year of columns, I’ve shared many of the tips and strategies that I use to maintain a positive mindset…
I know I have no control over how quickly or slowly my ALS progresses, but I can try to hold off the negative effects that come from long periods of sitting and shallow breathing. Because most people with ALS experience breathing difficulties somewhere along the course of their…
There’s no doubt about it — living with ALS has sure slowed me down! And if you have ALS, you probably feel your life slowing down as well. It’s good to know that you’re not alone. Moving, eating, and talking more slowly, and feeling fatigued are common…
The other day, I watched a celebrity interview on TV. The soft-spoken man had short, neat hair and wore a blue button-down shirt. He looked like a banker or an accountant. But he was the bass guitarist in a rock-and-roll band! Boy, looks can be deceiving! It’s the same…
My family recently made a welcome discovery. It turns out that home healthcare for ALS patients is covered by Medicare. The revelation came as we faced a dilemma: my care needs had eclipsed my wife’s capacity to provide them. We had wondered how we could be assured of…
Are you ready? Then let’s GO! We can climb a mountain, walk a mile, drink a beer, or just shop online — all to raise money for ALS. In the U.S., the month of May traditionally has been designated as ALS Awareness Month. In the U.K., where…
In last week’s column, I shared how the simple strategy of showing up helps me live with ALS. This week, I have a suggestion for something that should be at the top of your list of things to show up for: your ALS support group. ALS support groups…
I experienced quite a few emotional dips during my first year of living with ALS. Dips in the way of full-on mental funks, feeling a loss of purpose, being disconnected from others, and worrying about the future. To help me climb out of those dark dips and…
This time around, I really, really tried not to let it happen. But it did. I washed my hands. I avoided all contact with suspicious “others,” and even hauled around a good-sized tub of disinfectant wipes. All my valiant efforts made the world around me a little cleaner,…
