Category Archives: Drugs

Brain Power

Scarlett and I paid a visit to one of our favorite doctors, Dr. Steve Finkbeiner, in his lab last week. Dr. Finkbeiner works at UCSF’s Gladstone Institute and is the inventor of robotic microscopy, which is a huge step for modern drug discovery. He’s also just an all-around nice guy, who lets me stop by and bother him, even when I bring a 4-year-old who is still wearing her fairy costume from that day’s Carnevale party at school.

The first time we visited the lab, Dr. Finkbeiner and I chatted about research developments while Scarlett was spirited away by an assistant to make a “neuron” out of styrofoam and pipe cleaners. This time, she stayed with me in the office, manhandling the doc’s extensive collection of toy brains. He has one real brain in formaldehyde that I think is fascinating, but Scarlett was far more interested in the gooey, wind-up brains, and would not stop touching them.

I asked the good doctor to show me which part of the brain is responsible for impulse control and at what point it becomes developed in children. Short answers: The Front Part and Not Yet. Read More>

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A Night Out

The ALS Association invited me and Rob to a dinner on Friday night. They had a research summit in San Francisco last week, so we were prepared to dine with scientists, doctors, and researchers, many of the great minds hard at work on the problem that is ALS.

Rob and I don’t go out a ton. We tried to do date night for a while, but our idea of a truly relaxing night is sitting on the couch, drinking wine and watching Breaking Bad. I never wear makeup to sit on the couch and watch Breaking Bad.

Putting on makeup is an interesting challenge these days. I can still do it alone, but it’s shaky. I usually end up with mascara in several places that don’t involve my eyelashes, and I keep a pack of baby wipes in my bathroom to correct all of my mistakes. I don’t think the average person would know that upon looking at my face afterwards, and I’m content to keep doing it solo for now. It’s become almost meditative, more artful than it ever was for me. Slowly, slowly painting. Taking breaks for cramping fingers. Putting on the face of someone who wants to project strength, health, and the illusion of sleep-filled nights. Read More>

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Something I Tried

About a month after my ALS diagnosis in 2012, I received a questionably positive test for Lyme Disease. The reason I say it was questionable is because even the diagnosing doctor, a Lyme expert, said that it was not *exactly* definitive, but that we should nevertheless set out to treat it, just in case.

I was all in. Earlier Lyme tests had been negative, and I knew the treatment was intense. But I had ALS. If I’d been told there was a chance that living in the washing machine and eating styrofoam would help me, I would have done it. And then I think this would be a very different blog.

I arranged to have the necessary minor surgery. A skinny tube called a peripherally inserted central catheter (PICC) was fed into my arm, traveling through my body to its final destination in my chest. It took about a month to get insurance to agree, and to get the appointments scheduled. That was all time that I was sure was being wasted, time keeping me from getting to this potential cure.

How had I gotten Lyme Disease? There were realistic answers to that question. Read More>

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