Wendy Salo: Making Medical History in Minnesota

by Margaret Wahl on February 1, 2002 - 3:39pm

Wendy Salo's doctors told her she was suffering from stress — or perhaps chronic fatigue syndrome. But Salo knew there was something else going on.

At the time, she was in her late 30s. Admittedly, she had reason to be tired and stressed. She had a full-time job developing software for banks, and she had a husband and two teen-age sons.

But, to her way of thinking, those factors couldn't account for her nearly falling asleep at the wheel during the 15-minute drive between work and home, or being unable to climb the stairs to her office after her lunch break.

Wendy Salo with her dog
Wendy Salo and her dog, Chumly

"My legs wouldn't do the normal stair motion. They just locked up," says Salo, now 42.

Just when she was reaching her limit with frustration and exhaustion, Salo traveled to northern Minnesota for a family funeral. Her father's brother had died, and Salo found herself engaged in conversation with his daughter. They found they shared many of the same symptoms, as had Salo's uncle.

Salo's next step involved a trip to Minneapolis, where she saw MDA clinic director John Day — and began to get some answers.

When she and other family members tested negative for the known cause of myotonic dystrophy, they quickly became involved in Day's investigations to find a second genetic cause of the disease.

Day took advantage of Salo's parents' 50th wedding anniversary in the summer of 1999 to test several family members and to give some of them, including Salo, a diagnosis at last: the chromosome 3 form of myotonic dystrophy.

Salo's fatigue has been alleviated by an over-the-counter supplement she takes with Day's supervision, and her frustration and anxiety have been much relieved by having a definite diagnosis.

She's adjusted to using a different type of computer keyboard and has given up skiing. But, this winter, she's planning trips to Guatemala and Mexico, for which she's learning Spanish.

"If you can't do something anymore," she says, "[replace] it with something you can do."

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