When Brookfield resident Dona Salerno went to Michigan with her family to celebrate her grandfather’s 90th birthday in May, she walked away with a special present of her own: a promise from him to donate a portion of his cerebellum to the New York Brain Bank at Columbia University upon his demise.
While this may seem a somewhat morbid thing to ask a relative to do, it was for a good reason. For at least six generations, Salerno’s family has been affected by a virtually unknown movement disorder, known as “Essential Tremor.” This chronic, progressive disorder causes body parts, especially the hands, arms, legs and neck, to shake uncontrollably.
Salerno, who herself has ET, said that very little is known about the disorder. Scientists have yet to discover its cause, let alone a cure for it, and there are no drugs that have been specifically designed to target its symptoms. Through donations to the brain bank, ET researchers hope to answer a few of these remaining questions. So far, Salerno said, they only have 19 samples to work with, which is not nearly enough.
“I was flabbergasted that that’s all they have to work with,” she said. “That’s the only way that researchers are going to be able to isolate the cause, by people who have essential tremor donating that portion of their cerebellum upon their demise.”
Salerno said ET has always been a part of her family, although no one ever recognized it as such. Her grandfather, former Brookfield resident Casimier Wojakowski, and her father have had shaky hands for as long as she can remember, and she has had tremors since she was 10 years old. But before Salerno actually started researching her condition a few months ago, none of her relatives ever thought much of the family condition.
“We never thought anything of it; it was just part of them,” she said. “It was like they had brown hair; it was just a family trait.”
Salerno, who used to work at S.E. Gross Middle School as an eighth-grade science teacher, ignored the shakiness in her hands until last October, when her condition became almost debilitating. In February 2004, she had fallen on a patch of ice in her backyard, injuring her spinal cord and eventually leading to surgery. When she came off the medications she had been taking prior to her operation, her ET symptoms returned, exponentially worse.
It was at that point Salerno started researching family history, and realized the “shaky hands” trait went all the way back to her great-great-great-grandfather, with many other relatives scattered in between exhibiting signs of the disorder as well. She also turned to the Internet to find out exactly what was causing the tremors. Finally, after failing to find a neurologist who could diagnose her condition, she went to a movement disorder specialist.
“Within five minutes, he told me I had ET,” Salerno said.
Since that time, Salerno’s life has changed completely. Although she is on three different medications to control her tremors, she can no longer teach. Even walking short distances or picking things up has become difficult: she has handicap railings in her home, and can’t pick up cups without handles. On particularly stressful days, she said, her tremors, which she feels in her hands, legs, and even in her abdomen, become even worse.
“I have to laugh, otherwise I would cry,” she said. “I never thought in a million years that, at 40 years old, I would have a permanent handicap placard in my vehicle.”
One way Salerno has chosen to deal with ET is by becoming an advocate for greater public awareness of the disorder. She said it is by far the most common movement disorder?”with 11.8 million known patients in the United States, as compared to 1.5 million for Parkinson’s Disease?”but it is also the least well-known. Because of that, Salerno said, many people brush their ET symptoms off as nothing, like her family did for so many generations.
“Public awareness needs to be raised significantly in order to get people into their doctors to get diagnosed,” she said.
To that end, Salerno has joined the board of directors of an online ET organization, the Tremor Action Network. Along with other, larger movement disorder organizations, including We Move and Life in Motion, TAN advocates greater public awareness and research of ET.
Salerno is also trying to get her family more involved in the medical research currently going on. She has applied to have her family members participate in an ET study at Duke University in North Carolina, and is encouraging her father to also donate part of his cerebellum to the brain bank, which she signed up for along with Wojakowski.
Through it all, she said, her grandfather has been a driving force. He has encouraged her to research their family history, and has even funded some of her deeper research into the issue.
“For me, this journey all started because of Grandpa, and I got into it mainly because of him,” Salerno said.
So when Wojakowski agreed to donate a part of his brain to the cause, Salerno said, she was thrilled. She remembers the moment exactly.
“He just looked at me when I asked him,” she recalled, “and he said, ‘Well, I’m not going to be using it, so you can have it.’ It was just such a cool thing.”