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…
“If I was a broken clock, would you throw screwdrivers and bolts into my tool shed?” – “Tool Shed” by Chaya Nemiccolo What is emotional intelligence? Patients can easily learn about the traditional aspects of their doctor’s qualifications with a quick internet search. However,…
Dear readers, this week my Living Well with ALS column will take a slightly different path down the road of wellness. Because, in the quest of living a balanced life, I’ve learned that humor is something we all need to incorporate into our days. And one of…
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…
ALS is not only a confusing disease for those of us who have it, but it also throws our well-meaning friends into a tizzy. Friends who truly want to show their love and support are stymied as to what to do, how to act or what to bring.
A quote on a friend’s Facebook page caught my attention recently. Reading it was a reminder of how far I’ve come in learning to live with ALS. “It is not primarily our physical selves that limit us, but rather our mindset about…
Speak clearly Use a fork and knife when you eat Hand-write your thank you notes The above (plus a few more) were on my mother’s list of good manners that she expected me to follow when I was a kid. They certainly helped me through the years and proved…
It seems to me that learning to live with ALS now requires a crash course in Technology 101. Gone are the days of having to rely solely on other human beings for essential daily living needs. Today, both the ALS patient and their caregiver are receiving help…
I think we all can agree that ALS is one confusing disease. Confusing not only to medical experts worldwide, who can’t point to a cause or find a cure, but also it continues to be a mystery to most of the public at large. Heck, I didn’t even…
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