Dear Drs. Califf and Marks, I am a young woman living with ALS, and I am writing in strong support of the approval of the ALS treatment debamestrocel, which has proven to be both safe and effective in clinical trials. ALS is a brutal enemy. This equal opportunity killer destroys the nerves that allow us … Continue reading My FDA Advisory Committee NurOwn Statement
Category: Mobility
The 4th of July – ALS Style!
This is a photo I took on our cross-country road trip just before we crossed the Mississippi River. Ever since we adopted dogs, I haven't been a fan of fireworks. They terrified Malka, our dog who passed away on September 26th, which was surprising because she was a fierce protector. She used to huddle with … Continue reading The 4th of July – ALS Style!
Eight Years In…
Photo by Hakan Erenler on Pexels.com Eight years ago on June 8th, I was diagnosed with ALS. At diagnosis, I was given 2 - 5 years to live. We all are. I was just 28 years old. After my diagnosis, I immediately said goodbye because that's what I was told to do. I was told … Continue reading Eight Years In…
Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)
2 3 I have never really been one to get excited about New Years. Early on, my mom instilled in me a lasting fear of the hordes of drunk drivers careening about all night. I am now 30 years old, and to this day, I have never been to a New Years Eve party I … Continue reading Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)
A Wild and Lonely Belief
7 5 8 8 9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds. I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even … Continue reading A Wild and Lonely Belief
Three Dreams and A Dragon
When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, "The Interpretation of Dreams." I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn't trouble me as much as what I … Continue reading Three Dreams and A Dragon
Rag Doll
At the recommendation of ALS Worldwide 129147 and with the approval of my beloved neurologist, I have begun an unconventional course of medications. I use the word "unconventional" because some of the medicine is either not typically used in cases of ALS or is being used outside of the FDA approved dosing. Additionally, none of … Continue reading Rag Doll
Learning Helplessness
Today while out on a (st)roll, I witnessed a toddler run out into the street in front of a car. I was unable to do what every molecule in me demanded: race to the boy and snatch him up out of harm's way. I couldn't even scream in horror or point and shout so a … Continue reading Learning Helplessness
A Lesson on Joy
In the movie adaptation of my life, the climactic scene would go like this: the camera slowly sweeps up to where I am snuggling into a warm plaid blanket on a rustic porch. The sun peeks out from where it slept behind the mountain range. The soft light on my face shows I’m at peace. … Continue reading A Lesson on Joy
Sleepwalking
Tonight, after reading and listening to a podcast for a few hours, I felt stir-crazy from sitting for so long. I needed to get up. Specifically, I felt like trying out the Movements I saw on the Netflix series “The OA”. I was just about to do that when I remembered I could not get … Continue reading Sleepwalking
How I Live Now: Life With ALS 