Category Archives: Life

Speed4Deb

Today I am featuring the remarkable story of Deb McQueen-Quinn, and I’ll keep this post short, to allow you to focus on Deb’s tale of familial ALS.

However, there are a few things you should know about this lovely woman. She is a seamstress, incredibly talented, and very thoughtful. Scarlett recently opened a package in the mail, and inside were 30 handmade headbands, sent by Deb. Rainbow, heart-print, Minnie Mouse, 4-leaf clovers, exploding fireworks, flowers. Scarlett sat in her pile of headbands and smiled. And that was exactly Deb’s intention.

I got to meet Deb at ALS TDI’s fundraising gala last November. She rolled her wheelchair up to mine, and introduced herself. She explained that she has help with her sewing now, as it’s hard on her hands. She looked down at her stockinged feet and told me, “Shoes weren’t happening tonight.” We laughed. That night, Deb handed out tote bags she had made, many of them personalized for her friends with ALS.

At the 2014 ALS TDI leadership summit, Deb was the recipient of the Fran Delaney Award, which is presented annually to a person who has shown true leadership within their community. That is definitely Deb.

And a few weeks ago, I got a card in the mail. It was from Deb, a hug in an envelope, because she had been thinking about me.

This fabulous woman deserves an end to ALS more than anyone I know. She and her family have been through enough. And still she smiles, and laughs, and does things for others. A true leader, indeed.

Read Deb McQueen-Quinn’s story here.

Deb Diagnosed at 45

Deb Diagnosed at 45

|Categories: Cure, Diagnosis, Faces, Life | Tags: , , | Permalink

Bad Behavior

Rob and I had an interesting interaction on Friday morning. It was a total ALS moment, where the frustration overtakes everything else and you realize that what is happening is real, and that you’re out there, traveling with no road map. It’s the definition of ALS: Good luck, keep driving.

Rob had returned from a trip to New York the night before. Our time without him had gone fine, thanks to help from my sister and my two assistants. On Friday morning, we were trying to get back into our routine. I couldn’t help but think about how simple it must have been for Rob that week. Getting himself—and only himself—ready to walk out the door. The luxury.

Some time ago, I decided to wear what is basically a uniform of maxi dresses, and I had recently purchased some new ones. So that morning, we tried on a new dress. Yep, I use the word “we” with zero irony here. It’s a group effort. Rob pulled the dress over my head. He adjusted the straps, kicked my footrest up and lifted me to allow the billowing material to fall towards the floor. “What do you think?” he asked. Read More>

|Categories: Life, Relationships, Vanity, Venting | 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