Category Archives: Therapy

ALS Awareness Month

May is ALS Awareness Month. Last year at this time, I changed the Speed4Sarah Facebook profile picture to this:

I like to stay optimistic about my future, to recognize that no one knows what’s going to happen and that we could, in fact, find a solution to slow down this demon—in my lifetime. But I also appreciate statements like the one above, because I think they help people begin to understand the absolute INSANITY of ALS. It sounds like science fiction, but it happens to people every day. Today, someone will experience the first signs of ALS, and they will have no idea what the hell is going on. Someone (many someones) will be officially diagnosed. People will die of ALS today.

It’s a conundrum for me, as I try to share my love of life on this blog, while not sugarcoating the reality of how everything has changed, and will continue to change.

I am someone who could walk—and who did, even at times when driving made a lot more sense. I am someone who could run—and ran miles. I am someone who cooked—and loved trying new recipes. I am someone who traveled—all over the world.

Those things are gone, and it’s completely true that I’ve found new ways to release stress and find happiness. But I miss my abilities, which now feel more like they were superpowers. Read More>

An Underfunded Disease

“ALS is not an incurable disease.  It is an underfunded disease.”  – Stan Appel, M.D.

Last year, my husband Rob gathered a huge team of people to participate in the Napa Valley Ride to Defeat ALS. The event was held in September in Yountville, California on a gorgeous day. And I was nervous. It’s sometimes hard for me to prepare myself to be around other people with ALS, people who are further progressed than I am. I was afraid that what was meant to be a day of fun and accomplishment was instead going to be wildly depressing.

I am happy to report that I was wrong. Read More>