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Living With LOTS, S.F. Woman Won’t Let Disease Win

Conventional wisdom dictates that runners, like most athletes, improve with experience.

Vera?s Choice: Vera Pesotchinsky doesn?t give up. Image by COURTESY OF VERA PESOTCHINSKY

A promising freshman cross-country runner might become the school track star by senior year.

But that didn’t happen for Vera Pesotchinsky. As a high school student in California, Vera saw the opposite trend: She peaked as a freshman, then spiraled confusingly downward.

“I began to fall as a junior and senior in high school,” recalled Vera, who is now 36 and lives in San Francisco. The early degeneration kicked off a nine-year stream of medical appointments.

In high school, doctors sent her to psychiatrists to be treated for depression. By the time she was 21, physicians were puzzled by abnormal MRI results. The uncertainty followed Vera as she transferred from the University of California, Los Angeles to Wellesley, the women’s college that she graduated from with degrees in Russian studies and economics. But as Vera’s handwriting and speech slowed along with her gait, the pieces started to fit together.

After many misdiagnoses — including Friedrich’s ataxia and muscular dystrophy — that baffled physicians by coming out negative in blood tests, a doctor finally nailed it by the time she was 27: Vera had Late Onset Tay-Sachs disease, an affliction that is often unrecognized since it is an uncommon form of a rare genetic disease.

To infants, Tay-Sachs is a death sentence. But to Vera, who had never heard of the disease, the diagnosis offered some relief. “Finally, everything made sense,” she said. “It made sense why I was always a klutz, why I couldn’t run, why my speech wasn’t quite right.”

Unlike other forms of Tay-Sachs, Late Onset patients are not necessarily destined to the tragic early death for which the disease has become notorious. And Vera set out to make the best of it.

Her mother, Sophia Pesotch–insky, says that though Vera falls often and has difficulty walking up and down steps, one would have trouble finding gaps in her optimism. “We’re lucky in a way that she is not depressed — half of all LOTS patients have manic depression,” she said. “She’s an inspiration for everybody around her. She told me, ‘Even if I’m going to be in a wheelchair, I’m not going to be depressed.’”

Vera actively resists further neural degeneration on a daily basis. “I exercise a lot — I realize that I have to because if I don’t, I get worse,” she said. “There are some things I make sure not to miss. If I miss one thing, OK, I’m human, but if I miss several days in a row, I have a harder time getting it back.”

Vera’s beloved Dahn yoga is not only a meditative experience — it is an elixir, protecting her legs from further muscle damage. “I do not have a choice about it, and would rather be diligent than face the alternative,” she said. “I might not have a choice about what I have, but I can choose what I’m going to do with it.”

In addition to calmly fighting medical battles, Vera works on marketing and Web site upkeep for Hotel Vera, the hotel her parents own in St. Petersburg, Russia, Vera’s birthplace.

Sophia, a medical device professional, has thrown herself into the fight to find treatments for her daughter’s affliction, recently helping to develop a plan for a new clinical drug test. And, according to Vera, she dotes upon her determinedly independent daughter.

“I’m grateful for it,” Vera said, referring to her mother’s help. “But she can be overly involved — a Jewish mother.”

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