This is not the Thanksgiving piece I intended to write, but this year I'm grateful and lucky simply to be alive. I've been hospitalized 3 times this fall. The first time I had double pneumonia. My lungs were a total white out when I was admitted. Lungs are supposed to be black on an x-ray, … Continue reading Back to Basics: What I’m Grateful for This Thanksgiving
Category: Optimism
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!
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
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 Happy Halloween
I consider this Halloween costume an absolute success. I dressed as the Little Mermaid, and had a sign on my wheelchair to tell people that ALS stole my voice! Ursula, you're off the hook. Plus, I had some royal arm candy (wink wink). I am glad I was able to dress up and pass out … Continue reading A Happy Halloween
The Surprising Reason I Need to See You Dump Ice Water on Your Head
For me, the Ice Bucket Challenge is not just a way to raise money for ALS research. It's not just about hope. The effect on me goes much deeper when I watch the videos. I know I have a vast support system that includes you, my dear readers. However, I can't see you read my … Continue reading The Surprising Reason I Need to See You Dump Ice Water on Your Head
The Power of the Bucket List
5 The approval of Radicava, the first medicine for ALS in 22 years, had me reconsidering my post that labels my belief that I will survive this disease "wild." Then, the vessel of my most precious dream was wrecked on jagged rocks I never saw coming. The federal budget for 2018 calls for the complete defunding … Continue reading The Power of the Bucket List
Help Launch Phase 2 of the “Save the National ALS Registry Campaign”!
3 WANTED! I am looking for people with experience canvassing for petition signatures. Phase 2 of my "Save the National ALS Registry Campaign" is to create and publish a guide that allows citizens to reach out to their neighbors and get signatures to send to representatives along with a letter explaining why we need them … Continue reading Help Launch Phase 2 of the “Save the National ALS Registry Campaign”!
Pacing Myself
3 I have always struggled to acknowledge and accept my limitations to the point that I often push myself far past them. From middle school through college, I participated in at least three extracurricular activities each year. OK, that's a lie. It was more like four or five. I was in a leadership position as … Continue reading Pacing Myself
How I Live Now: Life With ALS 