It's not about just having the creepy crawlies for Kristin Carlson of Grove City. It's about her life. And it's about empowerment and opportunity for fellow victims of the invisible disease known as Restless Leg Syndrome.
This past May, Carlson was selected to fly to New York City, all expenses paid, to film a public service announcement with her 89-year-old mother, Helen, and grown daughter, Katy -- all of whom suffer from the silent syndrome.
The PSA was scheduled to air sometime this week in conjunction with a national awareness campaign aimed at promoting and understanding RLS.
As far as Carlson remembers, RLS has always been a part of her life. "I can remember my mom and my grandmother walking the floors at night when I was growing up," she recalls. "As I became an adult, I began to experience the same symptoms periodically, and then more significantly when I was pregnant with my children."
Since then, Kristin says her symptoms range from mild to extreme at different times. The disease has forced her to renegotiate daily activities, such as choosing seats in the back row of a movie theater so she can walk around when the "jitters" come on.
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She also said she hardly ever sits on airplane flights, instead opting to pace up and down the aisles to "calm the creepy crawly sensations" in her legs. She often jokes that she walks all the way to Seattle when visiting her mother.
According to the National Restless Leg Foundation, the disease is serious but treatable, so victims "should not stand for it." Approximately 10 percent of American adults suffer from RLS, many of whom are undiagnosed or are being treated improperly.
It's not been long that RLS has been in the headlines, and it is quite common for those not suffering from the syndrome to dispute its validity.
"I always say that if you hear about the symptoms and you don't believe them to be real, then you don't have RLS," Carlson said. "But for those of us that do, it's a tremendous relief to finally have some answers and some options."
Her husband, Chuck, jokes that it's all in her head. And Carlson said that's actually quite true -- in a way.
"The way RLS works is that something misfires in our brain, and basically our head tells our legs that they need to get moving, or else," Carlson explained.
The brain then sends threatening and painful messages to the muscular tissue, and tada! The syndrome is manifest. And since it's about misconnections in the mind matter, RLS symptoms worsen as individuals age, similar to situations involving other brain-based conditions like Alzheimer's and dementia.
The hereditary aspect of the disease has recently been the focus of much research, a large part of why the Carlsons were selected to film the PSA and why the entire family was featured in a biographical publication put out by the Restless Leg Foundation 10 years ago.
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In that publication, Helen was quoted as saying "our family is going to single-handedly wipe out this condition if we can."
For her part, Helen has preemptively donated her brain to Harvard University for scientific study. Kristin says her mother often jokes that she is literally "dying to get into Harvard."
Although Kristin was the only Carlson child to fly to New York, all four of her sisters also suffer from RLS in various degrees.
As for the experience of filming the PSA, Kristin said "we really had no idea what to expect, but we were treated to an incredible experience! It's not everyday that you are offered a free vacation to New York City, and we had a blast!"
A whirlwind four-day adventure involving arduous rehearsal schedules, with just enough breaks here and there to see the sights of the Big Apple, eventually produced three public service announcements, ranging from 15 to 60 seconds in length, as well as one three-minute segment for the foundation's Web site.
For more information on the disease and its treatment options, or to view the Carlson's PSAs in full, visit www.whatisrls.org .
