Category Archives: Progression

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>

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

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>

|Categories: Cure, Doctors, Drugs, Progression, Research | Tags: , , , | Permalink

Downgrading a Deadly Disease

“HIV is certainly character building. It’s made me see all of the shallow things we cling to, like ego and vanity. Of course I’d rather have a few more T-cells and a little less character.” —Randy Shilts, author of And the Band Played On and The Mayor of Castro Street

I recently finished reading Season of the Witch: Enchantment, Terror and Deliverance in the City of Love. David Talbot’s history of San Francisco is dark and stormy, frighteningly full of events that belie the free-loving-60s-hippie spirit the city is known for.

Among the stories recounted in the book is that of the HIV/AIDS epidemic that turned formerly fun, flamboyant neighborhoods into ghost towns. The gay population of San Francisco—of the country, really—was hit the hardest; healthy people struck down in their prime. That felt familiar.

I know that AIDS and ALS are very different. ALS is not contagious, and it’s not an epidemic. There are so few people who have it, in fact, that it’s considered an orphan disease, and commands very little attention from the NIH or the public. We all know this, just as we know that after this summer’s Ice Bucket Challenge, the game briefly changed for ALS.

But it takes a lot of money and a lot of attention to impact a fatal disease. Read More>

|Categories: Cure, Drugs, Life, Progression, Research | Tags: , , , | Permalink