Monthly Archives: February 2015

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>

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

Guest Post: A Letter from Kristen

This letter came to me last week, and I had to ask Kristen if I could post it. Read it and you’ll understand why.

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Confession: I feel super awkward writing to someone I don’t know. This is the first time I’ve ever done it, and I wish it didn’t have to be because of ALS, but here we go. ALS is making me do things I’ve never done before, and I’m not even the one who’s got it.

I’m Kristen, from Canada…living in England…with my German husband. At 40, he was diagnosed with ALS. Lower-limb onset. Slow progression. That was about a year and a half ago.

Most people can remember the exact day of diagnosis. I can’t. We had a 3-year-old and 6-month-old twins. I was so utterly sleep deprived that I can’t tell you anything about that day, other than I was convinced that my husband was absolutely fine, and didn’t even go to the doctor’s appointment with him. That’s how confident I felt that he was dealing with a quirky neurological situation, rather than a diagnosis with a “life expectancy” attached.

I hate that day, whenever it was. Read More>

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

A Day at School

It was a big day here yesterday, which you would have known if you’d seen me, because I was wearing lipstick. Like, actual lipstick, not just the bacon chapstick I slather on daily. In case you think that was a joke, that was not a joke.

Do I lose credibility immediately upon admitting that my “big” morning involved volunteering for the Carnevale party at Scarlett’s school? I just thought the children would appreciate that bit of extra makeup effort. I also wore a multicolored beaded necklace for them, because I am nothing if not festive. Although I am evidently not as festive as one of the other moms there, who was dressed head to toe as Queen Elsa.

I have always been the kind of mom who wants to be very involved at school, but after ALS sat me down for good, I was certain my classroom volunteering days were over. I normally just watch the email requests go by, thinking I won’t be helpful, best to let someone else do it. But last week our room parent sent a note saying she still needed help, and instead of blowing it off again, I thought, well, why not me? Read More>

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