How I Navigate My ‘ALS Time Zone’

During my past 10 years of living with ALS, I’ve had to adapt to a lot of new normals. One of the most important has been learning to navigate what I call my “ALS time zone.” It represents the unique pace or rhythm of my day, versus the pace…

The Monster That ALS Is

Donald Rumsfeld, the former U.S. Secretary of Defense, once stated at a Defense Department briefing in 2002 that, “There are known knowns. There are things we know that we know. There are known unknowns. That is to say, there are…

Loving What’s Left

With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter,…

On Planning to Get Punched

“Everybody has a plan until they get punched in the mouth.” –Mike Tyson The author Lee Child includes that quote in his Jack Reacher crime novel series as part of the title character’s mantra. Reacher always endeavors to strike the first blow. The…

ALS Cannot Change Who I Am

“You just got lesson No. 1: Don’t think; it can only hurt the ball club.” That was the advice that Kevin Costner, who portrayed baseball player “Crash” Davis, dispensed to Tim Robbins, who portrayed rookie pitcher Ebby Calvin “Nuke” LaLoosh, in the 1988 film “Bull Durham.” Ordinarily, I opt…

Welcome to My Column, ‘The Mighty Mind’

Welcome to “The Mighty Mind.” When I was diagnosed with ALS at age 28 in 2015, I felt like I had lost everything. My body, without warning or reason, had turned on me, and that meant the end of so much. My teaching career, and dreams of motherhood and growing…

Stem Cell Transplantation Shows Potential as ALS Therapy, Study Suggests

Stem cell transplantation in patients with amyotrophic lateral sclerosis (ALS) has the potential to be “an important alternative strategy” in treating the disease, a new study suggests. In recent decades, many advances in identifying and understanding the underlying mechanisms of ALS have been made. But those advances have not resulted in…

11 Common Symptoms and Effects of Motor Neurone Disease

According to the Motor Neurone Disease Association, here are some common symptoms and effects of MND: Discomfort and pain: although they do not come from MND directly. Muscle cramps and spasms: which may be eased by changing positions. If you feel these changes are not enough, talk to your doctor. Stiff joints: some slow…