Stephen

Rolling Over Epilepsy

Sherry Dariotes lives with her husband Nick in Redmond, Washington, not far from Seattle.  She has worked for the past fifteen years manufacturing high-tech surgical equipment.  She cannot drive to work because of her seizures, but that is usually not a problem, because even though Sherry has lived with epilepsy for more than thirty years, and even though two brain surgeries have impaired her balance, one of her favorite activities is riding her 3-wheeled Ice Trike.  She knocks out a lot of miles too.

Sherry Dariotes pedals in the Flying Wheels Summer Century ride in Washington.

Sherry Dariotes pedals in the Flying Wheels Summer Century ride in Washington.

Adversity

            Sherry still remembers her first seizure as though it happened just yesterday.  She was twenty-one at the time, and she was outside, preparing to march in a parade together with some friends.  Just as she began to seize, she recalls hearing one of her friends yelling, “Sherry, stop goofing around!  You’re not turning the right way!”  Her next memory is of flashing lights from emergency vehicles.  Another friend quickly asked, “Sherry, why didn’t you tell us that you had that? [seizures]”  Of course, Sherry had no idea—she was as confused as everyone else at that point.  But seizures soon became a very familiar part of her life, and she would experience tonic-clonic (grand mal) seizures and complex partial (petit mal) seizures almost every week.  Today, after two brain surgeries and a lot of trial and error with medication and lifestyle changes, Sherry has been able to limit her seizures to once or twice a year.         

Sherry has had two brain surgeries and she has also had another surgery to implant a Vagus Nerve Stimulator (VNS) in her chest.  Sherry’s second brain surgery took away her ability to sense “auras,”—brief, generally unpleasant, periods of confusion and nausea that occur before seizures.  At face value, that might seem like a good thing.  However, it has also led to a few frightening situations, because it means that Sherry’s seizures almost always take her by complete surprise.

Sherry explains that she had to give up a few things because of epilepsy.  “A lot of things I wanted to do,” she explains, “I wanted to get into nursing, that was a big thing that I wanted to do, and I couldn’t.”  She becomes a bit wistful when she talks about driving a car too.  “I’ve kind of gotten to the point where I just say, ‘oh well,’ you know?  I don’t think I’ll ever be able to [drive] again.”  But this only seems to last for a moment before Sherry is once again upbeat, sharing details about one of the many exciting things that she has going on in her life.

Support     

Sherry’s husband Nick has always been her greatest fan and supporter.  She loses control laughing—in a caring way—when she remembers how Nick’s hair turned gray after her first brain surgery and then fell out completely after her second.  She also remembers a time when a prescription mistake by an ER doctor left her dangerously over-medicated and feeling incapacitated and confused.  Nick rushed Sherry to the hospital that day to make sure that she got the care she needed.

Sherry with her husband, Nick.

Sherry with her husband, Nick.

Sherry has found a great outlet through cycling.  After her two surgeries, she has difficulty with balance, but that does not slow her down one bit.  They live right next to several bicycle and pedestrian paths because Sherry cannot drive.  She uses those paths regularly to ride her Ice Trike.  Sherry has taken the trike on some pretty ambitious rides too, including the famous Seattle To Portland Bicycle Classic (STP).  On her second attempt, she completed the full 200-mile course.  The journey goes all the way from Seattle to Portland in just two days, which means that cyclists must complete back-to-back century rides.

Doctors and Treatment 

            “I think that my doctors have helped a lot,” Sherry explains.  Her surgeries have been an important part of the treatment process too—especially VNS surgery.  “It really has helped,” Sherry says, “and now I only have maybe two seizures a year.”  Sherry also takes several medications—Tegretol XR, Topamax and Vimpat—in order to limit the number and severity of her seizures.

Sherry enjoys participating in events with the Epilepsy Foundation when she can, and she would really like to walk in the National Walk For Epilepsy at some point.  The Walk is hosted annually in Washington D.C. By the Epilepsy Foundation of America.

Sherry is stopping for a quick rest after finishing a charity walk with for Epilepsy Foundation.  One day, she would really like to participate in the National Walk for Epilepsy in Washington D.C.

Sherry is stopping for a quick rest after finishing a charity walk with for Epilepsy Foundation. One day, she would really like to participate in the National Walk for Epilepsy in Washington D.C.

Tips Tricks and Advice 

Sherry’s greatest strength in living with epilepsy is her sense of humor and her positive attitude. She does not mention these things herself, but they are both obvious after even a minute or two of speaking with her.  Sherry radiates a contagious energy and sense of humor and she does not hesitate to make light of her experiences with epilepsy.  One of her favorite stories is from her early twenties when she was a dancer.  One of the women in her troupe asked,

“Sherry, how are you doing with your epilepsy?” One of the guys in the room quickly stood up when he heard the word “epilepsy,” and he asked, “wait, isn’t epilepsy highly contagious?” (it is not contagious at all). Sherry did not waste a moment in grabbing the guy’s arm, and looking at him very seriously.  “Yes. It is,” she told him.  Everybody broke down in hysterics right away.  Sherry still laughs pretty hard when she tells the story.

Sherry advises people to be as active as possible—“have an active life,” she says, “don’t sit inside.” She has found it very helpful to be as open as she can with other people about her epilepsy.  “I tell people [about my seizures] when I apply for a job,” she says, “and I have always gotten the job.”  She describes situations at work when she has experienced complex partial seizures, explaining how her co-workers have always been there to ask, “Sherry, are you alright?”  Sherry is very comfortable with epilepsy because her friends, co-workers and family members are all very supportive of her situation.  In the end, Sherry’s most important advice is very simple: “If you have seizures, fight it.  That’s the way to go.”

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