Category Archives: Doctors

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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Speed4Rich

There is a new Face of ALS on the site today. Rich Pollock, a recently diagnosed father and husband, shares the story of finding out he had ALS and his thoughts on how to live with it.

Rich writes about the tests that he endured—many of them multiple times. I’d like to explain a bit about Electromyography (EMG), for those of you who haven’t experienced that particular joy. There are two parts to it, and I’ll keep this simple: In one part, they stick thin needles into your body and move them around, and in the other part, they give you electric shocks.

What, that doesn’t sound fun?

The tests are designed to find out how quickly your nerves are conducting electrical impulses and if there is any weakness in your muscles. There is a lot of data collected, but if the doctors find fibrillations or “fibs”, it’s not good news. Read More>

|Categories: Diagnosis, Doctors, Progression | Tags: , , , | Permalink

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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