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

Throwback Thursday

Scarlett went to school on Tuesday and Wednesday, but she’s home sick again today and currently lying in bed, naked and requesting stories about herself as a baby. So here’s what we’ll do. I’m going to take advantage of Throwback Thursday to share a blog post I wrote after Rob and I honeymooned in Italy way back in 2008. Scarlett was a glimmer in our mind, and ALS wasn’t even a consideration. We walked and sailed across every inch of Venice, shopped and dined in Florence, drank our way through Tuscany, and then arrived on the Amalfi Coast:

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October 14, 2008

When we arrived in Naples from Florence, Rob wanted to call the hotel to get information on the quickest way to get to Positano from the train station. I wanted to use my “Italian” vocab to take a cab to a marina, a ferry to Sorrento and then a ferry to Positano. Because then we would have figured it out all by ourselves.

Rob won. Read More>

|Categories: Life, Relationships | Tags: , , , | Permalink