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,…
I don’t know about your email inbox, but mine often overflows with news alerts. I can usually buzz through them fairly quickly, but last week, three items caught my eye and had me clicking through to learn more. Exercise is safe for ALS patients Until my ALS diagnosis…
For a man whose passion involved solving the mysteries of the universe, Stephen Hawking remained a mystery to many. First and foremost he was a British physicist, earning accolades and respect for his many contributions to science. Secondly, as a person living with ALS, his fame came…
I recently volunteered to participate in the Precision Medicine Program (PMP) of the ALS Therapy Development Institute (ALS TDI). I chose them because all of their funds go toward research, I like doing my part to help support the ALS community, and it allows me to participate…
As a newly diagnosed ALS patient attending an ALS clinic, I received a packet filled with various brochures and helpful information. Attached to one pamphlet I found a small card with the words, “Taking care of myself is not an act of indulgence, it is an act…
