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: Identity
Can AI Voice Cloning Be Used For Good?
Photo by Polina Kovaleva on Pexels.com I'm pleased to present the link to the story for which I was recently interviewed, "Can AI Voice Cloning Be Used For Good?" by Kaleef Starks, Mark Armendariz-Gonzales, and Clera Rodrigues. The interview focused on the changes ALS has caused in my communication, as well as my experience with … Continue reading Can AI Voice Cloning Be Used For Good?
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…
I Am Not OK
4 3 2 As I write this, I am sitting in bed, watching a funny show while checking my email, text messages, and Facebook notifications. It is the middle of the night, a time of terror for me, so I need the safety of the blue electronic light of my devices. I bask in the … Continue reading I Am Not OK
Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”
3 3 2 If you are anything like me, you do a little research before choosing a doctor. Patients can easily learn about the traditional aspects of their doctor's qualifications, such as the college they attended, years practicing, and awards earned, with a simple Internet search. However, it's quite a bit harder to get a … Continue reading Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”
Dr. Jeff, the Jugular, and Me
To be read with "Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor," originally published by ALS News Today, October 2, 2017 Whether or not your doctor practices emotional intelligence will make an enormous impact on the quality of your care and mental health. At best, a doctor lacking emotional … Continue reading Dr. Jeff, the Jugular, and Me
A Dream
If my dream of collecting and expanding my best essays and turning them into a book ever becomes a reality, there are a few new topics I am dying to write about that are just too involved for my blog. I would devote a whole chapter to the ways ALS has changed my understanding of … Continue reading A Dream
Oceans Between Me and You
Lately, I feel like the little girl in this music video - that I have to put on a cape and mask just to face the world and my increasingly isolated place within it. Of course, that's not a healthy or sustainable way to live, but I try all the same. Perhaps I try because … Continue reading Oceans Between Me and You
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 