When Lynda Dome, of Gilroy, was in a car accident overseas in 1989, she had no idea that it would lead to a painful condition she’d carry with her the rest of her life.
“I was walking around with a tremor after it was pointed out to me in 2006,” she said, adding she was diagnosed with a neurological movement disorder called dystonia in 2012. “It’s a devastating diagnosis. It really is. There was nothing for people who are faced with this.”
Dystonia causes involuntary muscle movements, which often leads to painful spasms. The condition can affect people of all ages, according to the Dystonia Medical Research Foundation.
For the past two years, Dome has been on a statewide mission to raise awareness about conditions like essential tremor—a condition that affects 10 million people across North America. She successfully lobbied the cities of Gilroy, Morgan Hill and San Jose to pass proclamations recognizing March as Essential Tremor Awareness Month.
Soon after her diagnosis, Dome created a support group for people with movement disorders. At the first meeting, held in a boardroom within St. Louise Regional Hospital, she said four or five others showed up. When a young man from Hollister approached her and proposed filling the room one day, Dome had her sights set.
Now, the group—called the Silicon Valley Support Group—fills the boardroom with more than 30 people and guest speakers from physicians to neurologists, she said. People come from across the Bay Area, including Gilroy, Los Altos, Salinas, Hollister, Morgan Hill and San Jose.
For many, the support group is a way for people with movement disorders to connect and share stories, even if it’s just to share the pain of being stared at by strangers. Some with dystonia don’t feel comfortable leaving home due to the involuntary movements parts of their body make, and as will all neurological conditions, it can progress and even morph into other conditions, Dome explained.
“Some people can’t do their makeup or do their hair anymore because of a tremor in the hand,” she added. “Some people can’t go out and eat because their hands tremor when they try to feed themselves. It’s just so important for the people who are out in the community to realize these people would rather people ask them about their tremors than be stared at.”
The Dystonia Medical Research Foundation works to support research to better understand the condition and advance a potential cure, according to its website. And as the DMRF works towards a cure, Dome will continue holding support groups for those with a wide range of neurological movement disorders, as well as friends, family and caretakers.
“We desperately need help with research, and even though I’m a one-man-band, I’m doing my best,” Dome said. “At least there’s now a group and a place for people to come.”
“Everybody that comes to the fork in the road has two choices,” she continued. “You can either take one route and feel sorry for yourself and miserable and make everybody else around you miserable—or you can go on with life. My attitude is to move forward and hopefully bring as many others with me as I can and get them out of those four walls.”
The Silicon Valley Support Group meets in the boardroom at St. Louise Regional Hospital in Gilroy on the first Saturday of the odd numbered months from 10 a.m. to noon. For more information about the local group, visit detsv.org.
The Dystonia Medical Research Foundation will be holding a fundraiser, dubbed the the Barn Dance for Dystonia, from 7 to 10 p.m. Sept. 27 at the Lazy K Ranch in Gilroy, located at 3465 Susie Lane. Tickets can be purchased for $15 by contacting [email protected]. Proceeds benefit the DMRF, a nonprofit dedicated to advancing research, promoting awareness and education and support those with the neurological movement disorder, according to its website.
