Columns

In Pursuit of the Perfect Omelet

“No one knows what it’s like, “To be the bad man, “To be the sad man, “Behind blue eyes.” – The Who Last week, it was time for the annual agency performance audit of my aides. Actually, owing to COVID-19, the one for 2020 hadn’t taken place. Consequently, the…

I’m Wearing a Grief Backpack

On one of my recent daily walks, I listened to an “Office Ladies” podcast in which Jenna Fischer shared her ongoing struggle with anxiety. She used the analogy of a backpack to describe the burden she lives with. Some days it weighs her down, while other days she…

ALS Recognition Is Growing in Hollywood

Everyone likes being noticed — for the right things, of course. I like it when others recognize my unique talents and skills or a job well done. I don’t like being noticed because I have to use a rollator to help me walk. Or, because I move more slowly than…

Shifting My Mindset to Play the Game of Life

Last week, I went to the doctor to get a problem with my ear checked out. The medical assistant went through a list of screening questions. The last was, “Are you depressed?” Tears welled up in my eyes. “Yeah, I’m depressed. My husband is terminally ill.” “I’m sorry,” she said.

Why I’m Cautiously Optimistic About My ALS Future

If a year ago you would have told me that going without a face mask would be an emotionally challenging thing to do, I would’ve had a good chuckle. But last week, as a fully vaccinated person, I did it, and several times to boot. Although I felt confident being…

When the End of Life Feels Imminent

We had a health scare a couple weeks ago, and I had to take our 8-year-old goldendoodle to the vet. Earlier in the week, Comet didn’t have his usual zip. Instead of eagerly greeting visitors, he stayed on his doggy bed. By Thursday evening of that week, Comet began…

If Only My Husband Could Try NurOwn

Two years after my husband, Todd, was diagnosed with ALS, I read an article that gave me hope. An Israeli rabbi who had ALS saw improvement with NurOwn, an experimental stem cell treatment by BrainStorm Cell Therapeutics. The man went from being in a wheelchair to walking. I…

How I Learned to Speak Up for ALS Awareness

“I didn’t even know ALS existed until I was told I had it.” That’s what most patients say when telling their ALS story. I said the same thing when asked to share my story at an event in 2010, and I hear the same thing from others today, 11 years…

ALS Awareness Is Good, but Action Is Better

In the summer of 2014, people across the world dumped water over their heads in the ALS ice bucket challenge and shared videos of the experience on social media. Our son, Isaac, who was 4 at the time, did it, saying, “I’m having my aunties and uncles do the…