Speed4Sarah

Our Mission: Sarah was diagnosed with ALS in 2012 at the age of 33. Speed4Sarah.com is devoted to raising awareness of ALS through the stories and faces of people who are living with the disease. We are moms, dads, partners, sons and daughters. Some of our stories might make you cry. Some might make you laugh. Above all, we hope they make you care. Let’s Make ALS History.

Sarah's ALS Story: I remember so clearly the day I saw the neurologist for the first time. He was young, a second year resident, and he seemed almost giddy as he described my symptoms to the attending doctor. I, having no idea what any of it meant, was also a little giddy, because someone was taking my situation seriously for what felt like the first time. That was January 9, 2012.

When I had seen the nurse practitioners the year before at UCSF, they were dubious about my claims that something was wrong with my feet. One ordered blood work and told me that I was fine. The other reluctantly agreed that I should see a podiatrist. I thought I had a pinched nerve. The NPs seemed to think I was a bit of a hypochondriac.

But I had been falling. A lot. It started one evening when I was leaving a bar with my sister and her friend, all dressed up and on our way to the symphony. I’d had one drink and I just toppled over as we were crossing the street. I blamed my boots, the heels worn down unevenly. After the performance, I left the other two at a bar and started my mile walk home. I fell six times. People must have thought I was wasted. Finally I tore my boots and socks off in a fit of rage and confusion, and made it home barefoot without falling again.

I continued to fall for the next three months, and that’s when I first sought help from the NPs. Being told you’re fine has the effect of making you feel like you’re physically fine and merely going crazy. It’s for this reason that I was able to just ignore the oddities for a while, until one final fall on a run to my grandma’s house during a visit to Chicago. That’s when I insisted on the podiatrist visit, and he’s the one who told me the problem was not in my feet.

So back to that visit with Dr. P, the young neurologist who, I learned, had written his thesis on ALS, and who was still just a little too excited about my possible diagnosis. He told me right there in the office that ALS was the worst-case scenario for me. The best-case scenario, multifocal motor neuropathy, didn’t sound so hot, either.

I learned more about ALS that night at home. My husband was reassuring, but we were afraid. I looked at our one-year-old daughter and thought about how impossible it was that this was happening. Like, really impossible. The doctors must be wrong. I took tests that week, but nothing was conclusive.

I underwent treatment at home for multifocal motor neuropathy, since the only way to find out if you have it is to blast it with bags full of the plasma of strangers, to see if it goes away. Every day for a week in April, May and June a nurse named John sat with me for a couple of hours and administered the plasma. It didn’t help. The stairs started to get just a little harder. I only wore flats. John and I talked about many things during our time together. We read the newspaper and recommended books to each other. He told me it didn’t seem like I had ALS.

In June 2012, two doctors at UCSF ran the tests again. They were conclusive for a diagnosis of early ALS, and I remember lying on the table with tears leaking out of my eyes, so pissed off that I was crying in front of these guys. Because that’s the thing to focus on in moments like these. The docs told me to “hang in there” and I thought it was definitely the lamest advice I had ever received. But it turns out that's exactly what you have to do.

Read Sarah's piece in The New York Times on parenting with ALS.

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