Dear Congress, The recently enacted federal Right to Try Law (RTT) is really a “Right to Ask” law. And, for the pharmaceutical companies, it’s a “Right to Say No.” Which they certainly almost always will. Case in point: BrainStorm Cell Therapeutics pre-emptively announced that NurOwn, its ALS stem cell treatment candidate,…
For most of my adult life, keeping track of my health was easy peasy — at least, it was before I had ALS. I always followed the recommended guidelines for annual exams, participated in my employer’s work site wellness screens and made sure my immunizations were up…
Over the past year, I have become an expert in pain — something I never wanted to be. However, daily severe muscle spasms, cramping, one surgery, and an emergency room visit later, here I am. Despite my plethora of pain medications, I still suffered. Then, I realized that…
Having ALS is certainly no laughing matter, but I’ve found that living with it can give rise to many humorous moments. Most of my “laugh out loud” episodes are the result of misunderstood conversations, encounters with Murphy’s Law, or while attempting to open “tamper-proof” pill bottles. I’ll…
ALS has been a blessing to me. You read that right — a blessing. Oh, it has been many other things: ordeal, handicap, curse, millstone, scene-stealer, tormentor, humiliator, predator, interloper, income garnisher, bully, danger, satirist, infidel, and terrorist. It strives, ultimately, to be my terminator. But, if not for ALS,…
“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…
