Monthly Archives: November 2014

Something in the way she moves

Yesterday Scarlett and I joined some of her friends from school and their moms at the International Hip Hop Dance Fest in San Francisco’s Palace of Fine Arts. The performers—10 different groups—were incredible. Even the youngest ones made it look easy, circling hips and popping shoulders, windmilling arms and feet rarely flat on the floor. There were several acts that made me want to stand up and applaud. But, you know.

I get chills watching people who can dance. I’m not a very good dancer. I mean, obviously, people with severely weakened limbs are probably not tearing it up on any dance floor, but what I mean is, even before ALS took my mobility, I wasn’t a very good dancer. It didn’t really matter. I LOVED to dance.

The only times I’ve ever performed in front of an audience were my days on the high school drill team. This meant football game half times and weekend competitions, flying splits, kick lines, and Vaseline teeth (keeps you smiling.) It was fun to practice routines with the team and to compete, even if it did mean wearing the same itchy and uncomfortable nylon uniforms that other girls had been sweating in for twenty years. Read More>

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Precision Medicine

Rob and I stayed on west coast time during our visit to Boston, lazily ordering room service on our first couple of days because going outside and fending for ourselves would have required too much energy. This is why I was still in pajamas, and showing a rather inappropriate amount of leg when the server brought breakfast up at 1pm on Saturday. This isn’t like a sexy thing. I was in my wheelchair probably scrolling through my Facebook feed while Rob watched football. And you know what? It was perfect. The server may have found it even more perfect if I’d been wearing pants, but you can’t please everyone.

As I’ve already reported, we were in Boston for the ALS TDI party, but we were also there so that I could participate in TDI’s Precision Medicine program. On Monday morning, we got up “early” aka 9:30am, and headed down the street to Massachusetts General Hospital. The first part of the program involved having blood drawn, followed by a small skin biopsy, during which they removed a part of my arm that was about the size of a pencil eraser. The whole thing took 10 minutes.

Then we were off to ALS TDI’s offices in Cambridge. Read More>

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Notes on a Party

The Westin Copley Place in Boston was the location for this year’s ALS TDI White Coat Affair, a dinner and fundraiser that followed the organization’s 10th Annual Leadership Summit last week. Rob and I skipped the week of summit meetings, but showed up unfashionably on time for the party on Saturday night.

Corey Reich was sitting towards the entrance when the event began, looking his usual dapper self in a striped tie. I don’t like to hog Corey at these things, because I’m lucky enough to get to see him and his amazing family with some regularity back home.

I was introduced to Ellen Corindia, who’s had ALS for thirteen years and who uses a computer screen to communicate. Despite being in a wheelchair, Ellen went skiing with her partner last winter. They showed me the video, him skiing behind her, guiding her chair as the two of them zoomed down the mountain. Read More>

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