Category Archives: Research

Ice Buckets Everywhere

My family and I are all on one hotel bed watching a summer storm in Lake Tahoe. Rain is beating across the windows, and, from somewhere distant in the mountains, we can hear thunder. Scarlett is ecstatic. She’s been wanting a storm, and actually cried earlier when we told her it might stay sunny all day, nice enough to swim at the outdoor pool. I think the real reason she wanted the rain was because I mentioned it would be a great time to come inside and drink hot chocolate.

It’s been a lovely few days of vacation so far. We’ve wandered around a couple of resort towns,  eaten good food. Scarlett has gone biking and kid-style bungy jumping. And then there are the challenges.

I’m sure there’s something wrong with spending your vacation watching videos of people dumping ice water on their heads, but how can I stop? So many of them are doing it for me. For these two people next to me. Even Scarlett arranged to have someone nominate her, so that she could stand in a hotel bathtub with an actual ice bucket and do the same thing she’s seen other people do for the past week.

The videos are amazing. My family, my friends, people I haven’t seen since high school, are saying the kindest things and then dousing themselves. It’s beautiful. It’s hilarious. And it’s working. There has been major news coverage of the #icebucketchallenge, and hundreds of thousands of dollars raised. Entire sports teams are participating. Actors are posting videos from their showers. Musicians are being nominated and they’re welcoming the challenge. People who didn’t know what ALS was last week know what it is now. I just saw on Twitter that Justin Timberlake accepted the challenge and nominated Jimmy Fallon!

The Director of ALS Therapy Development Institute told the Boston Herald, “We are seeing 10 times the number of online donations every day.” At speed4sarah.com, we’re also seeing an influx of donations, so much, in fact, that we’re now in the top fundraising spot for our Napa bike ride in September.

Apparently, there are some people who take issue with the #icebucketchallenge. For those of you who worry about the waste of water, I offer you this reassurance: Ever since ALS made showering more difficult for me, I have been taking shorter, less frequent showers. So fear not! I’m pretty sure that I alone have offset half of the water loss from these challenges based on the showers I’ve skipped this year.

I’m told I still smell fine by people who would DEFINITELY lie about that sort of thing.

If you’re still concerned about resources, which I can understand, skip a shower or cut one a few minutes short. If we all do this, we’ll easily save more water than the challenges are using, and we’ll still raise awareness of ALS. And if you’re annoyed that your Facebook feed is overrun by the #icebucketchallenge, I say GREAT! You have really awesome friends. They are helping to get the word out about what ALS is by making themselves uncomfortable for a few minutes.

And that is, of course, the whole point. To raise awareness of this specific disease, so that people can begin to understand how it affects the aspects of daily life that most of us have always taken for granted. Like showering. Like standing. Like speaking.

Thank you to Pete Frates and Pat Quinn for coming up with the kind of idea that could go viral and for executing it beautifully. Thank you to everyone who has been filling up my Facebook feed with videos that warm my heart even as they chill your blood. I feel truly supported. This is raising awareness. And this is what will make ALS history.

Now, if you’ll excuse me, I need to go find some hot chocolate. Don’t worry, I won’t be pouring it on anyone.

Back to the Clinic

I had my regular ALS clinic appointment last week. I go every three months, which is recommended based on my level of progression. It’s not an uplifting place, but I’m learning to prepare myself and to control my reactions, regardless of what the clinicians might tell me. Having Rob there is crucial. The one time he couldn’t make it is the one time I ended up sobbing, and it took me a week to get back to normal.

Here’s how the appointment goes. I start out by getting weighed. That means wheeling my chair onto the scale to get the weight of both of us. Then I hop out (just kidding! I get out slowly, with help) and they weigh the chair alone. This brings to mind a new mom weighing a baby by holding it in her arms, and then weighing herself without it, and that thought leads to another thought and then another and I find myself wondering what I would be doing right then if I didn’t have ALS.

Then the nurse comes in and asks a series of questions called The Functional Rating Scale to determine how far I’ve progressed since I was last there. Yes, that’s right. They’re asking me. Read More>

My Unique Sound

Yesterday, I set out to conquer the world of voice banking. For those who are uninitiated to this fairly new and exciting technology, it’s software for people whose ability to speak might become compromised. Many—though not all—ALS patients will face deterioration or outright loss of speech in the course of their illness.

An article on the Muscular Dystrophy Association website says:

Not everyone with ALS loses their voice, but it’s a common symptom, especially in bulbar-onset ALS. While there’s no easy way to prepare for this prospect, “voice banking” is a viable option for preserving your unique sound and the identity it represents.

Ideally, you start early, before your voice is affected, which is where I am now. Read More>