My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn't benefit us. It was very hard to get that news. They say I'm in the … Continue reading My Battle Against Bitterness
Category: Hope
My FDA Advisory Committee NurOwn Statement
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
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!
Rejoice, for Yesterday a Miracle Happened!
Photo by Pixabay on Pexels.com When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down. "What happened? What's going on, honey?" I could hear the mounting panic … Continue reading Rejoice, for Yesterday a Miracle Happened!
On the Other Hand
2 It can be hard to "live my truth." Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle. Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral … Continue reading On the Other Hand
Getting Back My Voice?
3 2 This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn't have the strength - or money - for such an endeavor. As you will see in the video,141136 this company was able to recreate … Continue reading Getting Back My Voice?
The Sun’ll Come Out April 19th
3 I haven't written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably … Continue reading The Sun’ll Come Out April 19th
3 Things to Be Grateful for This Thanksgiving If You Have ALS
3 2 Those of us living with ALS or loving someone who has it are gratitude experts. Don't misunderstand me. We have our dark, bitter moments. As we catalogue our blessings - the precious time we have had on earth, our remaining abilities - we inevitably think about the other side of the coin. Yes, … Continue reading 3 Things to Be Grateful for This Thanksgiving If You Have ALS
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”
How I Live Now: Life With ALS 