Columns

Last week I spent a few hours visiting with my medical team at the ALS Clinic. Usually I leave feeling a bit tired from all the testing and chatter, but I always leave satisfied I’ve learned something new and helpful. You’d think that since I’ve been…

For most people, the holidays are a time of joy and good cheer. But when living with ALS, or providing care for someone who does, holiday activities have the potential to add stress to an otherwise happy season. Over the years, I’ve come to rely on a…

Even though November is National Caregivers Month, I think we also should include Good Samaritans and caring strangers. Everyone who opens a door or helps carry a bag, hands us items off the top shelf or points us in the right direction; a big thank you…

The other day, while skimming through a list of reader comments on ALS News Today, I ran across one remark that stopped me in my tracks. It was a complaint regarding the photo that accompanies this column. The reader thought the woman in the wheelchair looked too healthy…

Recently, thanks to my ALS News Today publisher, I had the exciting opportunity to test out an Echo Show. Why would I rate that as exciting? Well, we already owned an Amazon Echo (tower-type) device, but with my ALS-affected voice, I was batting zero activating it.

Living with ALS can cause dramatic changes to your relationships. When I felt my relationships fracturing under the strain of my disease and growing disabilities, I realized I needed help. So, I turned to my best friend, Melissa Rothstein, who has always given me great advice. Melissa has been living…

“Have you seen this?” The opening line of my friend’s email certainly caught my attention. Turns out my friend sent along a link to a website, one of the new online ALS resources that have been popping up lately. Eagerly I checked it out, and being pleased with…

Quick! Guess where I was the other day? Hint: I spent quality time with a few ghosts, goblins and vampires. Nope, I didn’t visit a haunted house – I went for a haircut! You sure can’t tell from the outside, but where I go has an explosion…

During my last visit to the ALS clinic, my neurologist surprised me with an invitation to be a participant in a clinical trial that she was conducting. It was open to 50 of her patients, it could be completed in our own homes, and only it required…

I began to notice something new during my first year of living with ALS. Every day around mid-afternoon, my energy would drop. Sleepiness, lack of concentration and a case of the blahs would creep in. Was this a brand new symptom of ALS? No, luckily not. But the…