Category Archives: Faces

Speed4Jenny

Today I’m introducing a new Face of ALS to the site. Jenny Smolinski was diagnosed with ALS in 2013 at the age of 35. I met Jenny online last year, and can identify with her in many ways. We are close in age, and we both have young daughters. Our ALS had a similar onset. We’re from the Midwest. We enjoy avoiding our ALS clinics. There’s probably more, but I’ll stop there, and move back to the more relevant data points.

Jenny and I also share a fear and sadness of leaving behind the kids who still need us. Her daughters are five and two. ALS with young kids is terrifying, but it can also be truly heartening. Our little girls don’t care that we’re in wheelchairs. Scarlett even uses mine to impress people. I took her to a new gymnastics place yesterday, and she made sure all the other kids could see her as she hopped up on my lap and we cruised out the door after class. When the ramp folded out of the van, two girls from her class gasped. “Cool!” one of them exclaimed. Scarlett preened.

I hear that’s not *always* the reaction from the older kids. Read More>

|Categories: Faces, Parenting | Tags: , , | Permalink

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>

|Categories: Cure, Diagnosis, Drugs, Faces, Life, Progression, Research, Therapy | Tags: , , , , | Permalink

Jodi

I’ve lost another friend to ALS. Jodi Oliver was diagnosed in May 2013, at 44 years old. She died last week, on April 2, 2015. It was just two weeks after our friend Trickett Wendler died, and so it has been a particularly rough time in my ALS life.

Jodi was another mom from my Facebook group. You’d think there were a lot of us, based on the writing I’ve done about the group, but there were only five original members. Now there are two left. Two. I’ve equated it to a squadron of soldiers, but really it’s not. We didn’t enlist, and no one ever tells us that there’s a chance we will get out alive, go home, start over.

But if we were a Band of Sisters, then Jodi was our Sunshine Girl. She lived in Orange County, California, had a golden smile to match her hair, and loved sunflowers. After her diagnosis, she befriended a producer for the movie You’re Not You, about a young woman with ALS, played by Hilary Swank. When the producer, Alison Greenspan, invited her to a premier, Jodi was so excited. “I will probably have security surrounding me cause I tweet constantly,” she told our group. Read More>

|Categories: Faces, Parenting, Relationships | Tags: , , , | Permalink