Brad Rinehart on The Rock ‘n’ Roll Marathon

This month, Seize The World veteran and endurance athlete Brad Rinehart took some time to speak about a recent milestone: completing the Denver Rock ‘n’ Roll Marathon.  In order to prepare, Brad worked closely with team coach (and STW Development Director) Charles Koller.  Part of that training even involved an epic climb of the 14,036 foot Mt. Sherman in August, together with John Olson and Colorado Climbers for Epilepsy Awareness as well as Outdoor Mindset and Seize The World.  Brad lives with his wife Tracy in Aurora, CO.  Together, they are an amazing couple: outgoing and kind, but also undaunted by the challenges of epilepsy.

This interview is from a phone conversation with Brad last week about his recent adventures and accomplishments.


Brad Rinehart crossing the finish line of the Denver Rock 'n' Roll Marathon.  Completing a marathon had been a long-term goal for Brad.  He experienced three seizures on the morning of the race.

Brad Rinehart crossing the finish line of the Denver Rock ‘n’ Roll Marathon. Completing a marathon had been a long-term goal for Brad. He experienced three seizures on the morning of the race.  (Photo by Ian McKittrick)

Why did you decide to run the Rock ‘n’ Roll Marathon? 

It’s really easy, you do everything: you do a 5k, you a 10k, you kinda do them all, right?  I guess as a runner you want to finish off your big long run eventually, you want to complete the cycle.  I always said, eventually I want to do a full marathon.  And I said ‘this is the perfect opportunity.”

With the Rock ‘n’ Roll Marathon in Denver you mean? 

Yes, and I had so much support—I could not have made it through the whole marathon without my coach, Charles, I could not have made it through without his help.  And doing it with Seize The World, they really helped me out.  This was just the perfect opportunity to do the full marathon.  I would never have done the full marathon by myself, you know what I mean? It was basically right in the back yard too.

What were some of the challenges you faced in preparing? 

Well, I said to Charles, “Ok, I guess I am going to run the full marathon.”  And that (26.1 miles) was just a big number.  It was a big number in itself.  And I just kept telling myself, “I’m going to do this.”

Brad Rinehart running with Charles Koller on 17th st. in the Rock 'n' Roll Marathon.  Charles helped Brad with training and preparation for the marathon.

Brad Rinehart running with Charles Koller on 17th st. in the Rock ‘n’ Roll Marathon. Charles helped Brad with training and preparation for the marathon.

What was your training plan?  

Just about every other day I would take my dog and then run a little bit and then walk a little bit.  Each day I would try to build up my mileage.  You know what it’s like: You have your bad days, you have to push up your mileage.  I still kept thinking: “Am I going to make this thing?”  There was always that.

Were there any moments when you thought to yourself, “what am I doing here?”

On race day, I had three seizures. (Brad had two seizures between 2a.m. and 5a.m. on race day, and a third at 6:00a.m. after meeting up with the team. The marathon began at 7:30 or so.) Then I just said, “Ok it’s just like a normal day.”  I just knew that I wanted to finish, it was just kind of the “game on” kind of attitude though. And I wanted to finish.  The other thing with the marathon was doing the hike up Mt. Sherman with John Olson and Colorado Climbers for Epilepsy and also the support of Outdoor Mindset. I don’t think I would have ever done that without them.

What was that climb like?

If you could imagine just about a trillion ball bearings or marbles, and if you tried to walk up. No matter where you walked, there is no way you could try to keep your balance.  And here are these rocks that have been here for like trillions of years.  (Brad is describing the infamous scree fields on Mt. Sherman’s West Slopes and SW Ridge.  At one point, he scraped his knees during the hike before borrowing a set of trekking poles to help with balance on the descent).

I think I left a nice trail of blood on the side of the rock…you know, basically, I can laugh at it now, but you know by the time I came all the way down, you could see the parking lot, there was all these rocks you had to go across, but let me tell you, trying to walk across all these boulders, trying to go from one rock to the other, it’s not easy.  It was an epic adventure.

Brad Rinehart and Charles Koller atop Mt. Sherman.  The annual climb was organized by John Olson and Colorado Climbers for Epilepsy Awareness.

Brad Rinehart and Charles Koller atop 14,036ft. Mt. Sherman. The annual climb is organized by John Olson and Colorado Climbers for Epilepsy Awareness.

Did you think about the Mt. Sherman climb while you were running the marathon?

Climbing that, and knowing that I could do that, absolutely pushed me forward for the marathon. I was telling Charles, I was only hoping to make it in 6 hours, but Charles told me I finished in 5 hours and 56 minutes, I still just couldn’t believe I actually finished the thing in that amount of time.

How did your neurologist react to news of the marathon?

I took my medal to show my neurologist and she was really impressed by that.

What do you think about the recent news with Neuropace and the FDA? 

I was really excited to see that thing getting approved, that is really a big deal, I think it is a really big notch. I was one of the first to start off with this [treatment].

Do you have any advice for people trying to find a safer or easier way through life with epilepsy?

No, but I guess you could say it this way: everybody has their bad days  and everybody has their good days.  One week I could have a perfect week, and the next day I could have a horrible seizure.  You just don’t know.  You just don’t know.  I don’t think there is an answer.

Right now there is no cure for epilepsy.  There isn’t.  As much as I would like for there to be…if we did, you and I would both be billionaires, wouldn’t we?  That’s just…I don’t…we don’t have the answer. Your friends are your safety valves, I guess.

And I know Tracy says a lot of the time when I have a breakthrough [seizure], I have to sleep. Sometimes my seizures just last about 30 seconds and that’s it.  Sometimes I’ll just have confusion, and I’ll sit down and that’s the end of it. Everybody has a different trigger and a different cure for their stress. I run, because that’s what cures my stress.

Kelley Sperry: Get Up Every Day

How many times in your life have you faced a physical or emotional challenge that demanded everything could give?  Kelley Sperry faces that kind of a challenge every single day.  She is a young, smart, courageous, twenty-one-year-old woman.  Kelley has classic good looks from her parents, but she has had to battle through multiple reconstructive surgeries since age nine so that her one side of her face does not completely waste away.  Her disease is called Parry Romberg Syndrome (PRS), and it is also responsible for causing intense migraine headaches, strokes and a severe seizure disorder.  Many of her teeth are loose because she does not have enough jaw bone left to hold them in place.  Incredibly, Kelley maintains a contagious energy and a ridiculous sense of humor in spite of these challenges.  But PRS takes its toll, and Kelley suffers daily seizures and frequent injuries as a result.  I met Kelley along with her mom, Donna, last month at Noodles restaurant in Longmont, Colorado to talk about her experiences with Parry Romberg Syndrome and with uncontrolled seizures.  What I learned was initially saddening, but ultimately deeply inspiring.

Kelley Sperry with her new seizure response dog, Kobi.

Kelley Sperry with her new seizure response dog, Kobi.  Kelley and her family are thrilled by the support they have received from the Chelsea Hutchison Foundation and from Domesti Pups in order to get a service dog.

Adversity

On good days, Kelley might suffer two or three drop seizures, but she won’t be injured.  But on a bad day, she might end up in the ER with injuries, and she might even have a stroke.   Kelley can also count on having severe migraine headaches on a daily basis that would put most of us in bed.  A few years ago, she had to quit a job that she loved as a Certified Nursing Assistant when she realized that her seizure disorder posed a risk to her clients.    

Kelley’s challenge now is to work with her family to figure out some ideas about how she might become a bit more independent. Everyone in the family is desperate to help, and Kelley is doing everything she possibly can—but it is really tough when her seizures just won’t stop.  Kelley’s father, Jay, works as a paramedic with the fire department, and Donna works when she can as a substitute teacher when Jay is at home.  Her two brothers also live nearby, and they spend their time either working or studying full time.  Kelley also has a sister who just served for five years in the military, including one year in Iraq.  The Sperrys always have  a family member or a friend at home, because Kelley now has so many seizures that it is dangerous for her to be at home by herself.

These circumstances have not drowned Kelley’s sense of humor, although it understandably takes on a sarcastic tone at times.  After I learned that it is dangerous for Kelley to be alone at home, she quipped to me, “I am probably the only twenty-one-year-old who has to have a babysitter at all times.”  Kelley also laughs when she explains that she has now gone down four times at the same Wal-Mart, which she calls the “wicked” Wal-Mart.  Donna says that the family now avoids that store, and that they drive a bit further to a “less possessed seizure-causing” store.  Clearly the seizures are nothing to laugh about, but Kelley and her mom are able to see a bit of silliness in the small details, and they are able to laugh about them.

Donna describes family outings as “always interesting,” and says that she often has to convince people that 911 is not needed when Kelley seizes.  She also remembers one night when Kelley came back from a date: “The poor guy frantically banged on our front door as Kelley was having a seizure in the driveway.”  When Kelley is out, she and Jay usually spend the night at home glued to their phones, pacing and biting their nails.

Donna has to gather her courage before describing, in detail, how Kelley has been “pinned” in terrible situations. Kelley has fallen between the bed and the wall, and she has crashed to the floor in-between the toilet and the bathtub.  In January, Kelley fell to the concrete driveway during a seizure, but her foot remained stuck painfully underneath the front seat until paramedics arrived to help lift her into the ambulance. Donna frequently calls 911 for help after falls on the stairs, head injuries, and leg injuries.  “I think it’s hard to understand what it’s like to hear a thump in the house,” Donna says.  “It’s not just a thump in the house—you don’t know what you’ll find in the next ten seconds.” Donna explains that “Seizures leave her body sore, bruised and exhausted.”

Support

Despite all of these challenges, there are some small victories and even some big victories.  A few weeks ago, Kelley and Donna went out shopping together, and for the first time in a long time, they split up for a while. Donna was terrified the whole time, and Kelley was a bit shy to tell the story because she felt like it was a non-event.  For my part, I wanted to kick Kelley for not seeing this as a huge deal.  But, to be fair, Kelley has had some very exciting news during the past couple of months, and that may be why this success story did not factor quite so much onto her radar.

Kelley is really excited right now because she has a new seizure response dog, a golden retriever named Kobi.  He was made possible thanks to help from her family and thanks to support from Julie and Doug Hutchison and a grant from the Chelsea Hutchison Foundation (CHF).  In 2009, Julie and Doug lost their daughter, Chelsea, to a seizure.  They have worked tirelessly ever since to help other families living with epilepsy so that they will have all the support that they need.  And Kelley cannot say enough good things about Julie.  “Julie gets me,” she explains.  “She gets my mom.  Julie understands my situation.” CHF recently helped Kelley again by donating a cutting edge Sleep Alert Monitor (SAMi) device, to help monitor Kelley’s sleep patterns.

And on January 19, 2013, Kobi arrived at Denver International Airport.  He flew in with his trainer, Rebecca Yorkston, a director with Domesti Pups in Lincoln, Nebraska.  STW readers will remember Rebecca from last November, when she shared her own remarkable story. Rebecca is no stranger to seizures herself, and when she arrived with Kobi, there was an instant connection between Kobi and Kelley.  And after five months on the job, Kobi has already provided a tremendous amount of support.  In one case, he even activated the Sperrys’ household alarm system to let the family know about one of Kelley’s seizures.  Kobi will continue to play a big role in reducing Kelley’s stress levels and in providing her with an added safety net.  Not to mention, he will always be there as a loyal companion.  It seems an unlikely coincidence that Kelley went for an entire week without seizures after Kobi arrived.

Doctors and Treatment

There is virtually no research funding for Parry Romberg Syndrome, and there is not a great deal of community support either.  Kelley explains that one of her best friends also has PRS, but she lives in Nebraska. It is not possible to connect very often.  And because there are no treatments, the only recourse for patients is to undergo multiple painful reconstructive plastic surgeries.  Kelley has worked closely with a plastic surgeon in Wisconsin, and the Sperry family credits Kelley’s surgeon to a large extent with saving her face.

Tips Tricks and Advice

Kelley’s favorite advice comes from her grandmother: “Get up every day, get dressed  and put your makeup on.”   Kelley has discovered that it is extremely important to get out as much as possible to enjoy the day.  Even though she needs regular naps, and even though she has to take more than 20 pills a day to keep her seizures at bay, Kelley finds her happiness in simply getting out.  

Another one of her great strengths in keeping the upper hand over seizures is her sense of humor.  At one point during our lunch, Kelley pointed out that there was a man a couple of tables down who had set up camp with what must have been at least three full file boxes of paperwork spread out over so many tables.  He also had his laptop computer, backpack and a ton of other junk too.  We shared a lot of laughs speculating about what might have been going on there. Kelley seems to forget the challenges of PRS during these moments.

Kelley catches an afternoon nap with Kobi.  Regular naps are an important part of controlling her seizures, and so is medication—she takes about 20 pills each day.

Kelley catches an afternoon nap with Kobi. Regular naps are an important part of keeping her seizures at bay.  So is medication—she takes about 20 pills each day.

Kelley’s story highlights the personal challenges of Parry Romberg Syndrome as well as the stresses and uncertainties that come with uncontrolled seizures.  When she tells her own story, Kelley emphasizes the idea that there is an amazing team backing her up every day: Julie and Doug, Rebecca, Kobi, her friends and especially her family.  But when other people tell her story, the emphasis is pretty darn simple: Kelley Sperry is remarkably gifted. Donna states simply that “Kelley is a survivor.”  Kelley knows how to face challenges that most of us can only imagine.


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.”

Steven Riss: Perseverance Against Epilepsy

Steven Riss sometimes can’t believe that it’s possible to simply get in a car and drive.  It doesn’t matter if the 27-year-old is driving around his neighborhood in Longmont, CO, or if he’s commuting to work to install hardwood floors in Fort Collins.  It makes no difference if he’s headed to one of his graduate-level classes in Sports and Entertainment Management at CU Denver.  That is because Steven has epilepsy.  And he remembers well when he lost the freedom to drive at the beginning his senior year of high school.  Today, Steven is safely behind the wheel again after having been seizure-free for more than two years.  That is why, in simplest terms, he really values having a bit of freedom to move around.

StevenRiss (1)

Steven Riss

Adversity

Steven is hesitant to link the term adversity with his seizure disorder.  However, he does describe a number of difficulties, and many of them have to do with transportation and figuring out treatments for his seizures.  His first seizure was a tonic-clonic (grand mal) seizure that occurred during basketball practice when he was 14.  He was diagnosed with epilepsy after he had his second seizure a year later.  Steven’s license was revoked after another seizure caused a car accident at the beginning of his senior year of high school and he wasn’t able to drive again until after college.  Needless to say, Steven and his family worked for many years with a variety of doctors, exploring alternative therapies as well as traditional neurological treatments.  He seems to downplay the difficulties involved with feeling like nothing was working against his seizures, but it is clear that it must have been difficult for Steven to try so many different drugs and therapies without positive results.  Eventually, however, treatments began to work.  Steven has discovered that a healthy diet, a good neurologist and above all a supportive group of family and friends have all been indispensable to his effort to become seizure-free.  Steven has now been living for more than two years since his last seizure, and he makes it a point to take road trips, to ride mountain bikes, to play sports, and to see new places.  Steven highly values the freedom he has regained.

Steven Riss stands at the gates of Buckingham Palace during a visit to England.

Steven Riss stands at the gates of Buckingham Palace during a visit to England.

Support

“I have a pretty good family,” Steven declares simply.  He laughs as he elaborates, explaining that his dad will ask constantly, “’Did you take your medicine? Did you take your medicine?’”  Steven is very grateful for his dad’s concern, because on a few occasions in high school Steven would skip his medication for several days at a time.  But his dad would actually count his pills to make sure that Steven was taking his doses, and in that way his Dad really helped Steven to stay on track.  Steven also credits Life Bridge Christian Church in Longmont as a great source of community support.  Steven also plays pick-up basketball games every Tuesday afternoon and Sunday night.  And just to make sure he is never bored, Steven also plays in a softball league during the summer, a flag football league in the fall, an makes regular trips to the mountains to go downhill mountain biking.  You really get the feeling after talking to Steven for a while that he is one of those people who goes crazy if he isn’t doing something at all times.

Steven Riss is armored up for a day of Downhill mountain biking at Winter Park.

Steven Riss is armored up for a day of Downhill mountain biking at Winter Park.

Doctors and Treatment

“I would not be seizure free if it were not for the neurologist I have right now.”  Steven speaks very highly of his neurologist in Longmont, Dr. Pierre Pavot.  Steven has been affected deeply by the level of personal care that he has received from Dr. Pavot, mentioning that it doesn’t hurt that Dr. Pavot is also a fellow Colorado Buffalo alum.  At one point, Dr. Pavot made a personal visit to the Emergency Room to see Steven when he was recovering from an allergic reaction to Dilantin.  Dr. Pavot helped Steven to transition away from Dilantin, and he instead prescribed Steven’s current medications, Keppra and Lamictal.  Steven has now been seizure free for more than two years.  Steven hopes that someday, with the help of Dr. Pavot, he can transition off of Lamictal and be on just one medication.

Tips Tricks and Advice

Steven explains that “it is important to act as an ambassador of epilepsy.  So many people are misinformed, even those who are recently diagnosed, that it puts out a stigma that makes people afraid to lead normal lives.”  Steven also highly recommends finding a personal source of inspiration and holding onto it through patches of rough water.  Steven finds his own inspiration in a passage from the Book of Romans in the Holy Bible, from chapter 5, verses 3–5:

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope and hope does not disappoint us, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”

Purple Day

Today when I got home, I had an email from Jenniafer Walters, who is the president of the Oklahoma Epilepsy Association.  Jenniafer and I first connected when I passed through Oklahoma City during my bicycle tour.  We communicated throughout the trip and she reached out to me today after receiving one of the most recent STW newsletters.  It is great to be back in touch!

Jenniafer also let me know about Cassidy Megan of Purple Day and her most recent efforts.  Many of you are probably familiar with Purple Day.  The concept could not be more simple: if you know what epilepsy is, wear purple on on March 26 each year to show your support for those affected.

What you may not know is that the founder of Purple Day, Cassidy Megan, is only eleven years old.  And right now, Cassidy, who is from Nova Scotia, is working to make Purple Day more popular in the United States.  That is why she is trying to become a guest on the Ellen Show by sharing this video.  The best way to support her effort is to simply watch the video, post comments on YouTube and spread the word.

Thanks Jenniafer for sharing the news and it is great to be back in touch!  And — all the best to Cassidy in her effort to spread the word for Purple Day!

Stephen

Welcome to Our New Website

580247_10151239791197673_113291505_n

Welcome to the new seizetheworld.org!  Huge thanks go out to Ian and Ben for efforts in building this site and to Doug Ekstrand for designing logo / icon / menu concepts used in the site!   Also thanks to the builder of the original site, David Pannone, for huge efforts with troubleshooting, migration, and also layout which was often copied from the original site.

I hope that the new site will be a fun place to find stories about amazing people with epilepsy and that it will be a useful archive / scrapbook of the Cycling The World adventure!

Please let us know about broken links and other errors—the site is still brand new and there will surely be a few glitches in the mix.

Thank you!!

Stephen Allen

Chelsea’s Legacy

Julie and Doug Hutchison lost their sixteen–year–old daughter Chelsea on April 19, 2009.  She passed away after a seizure in her sleep.  Sudden Unexpected Death In Epilepsy, or “SUDEP” affects roughly 1 in 1000 people with epilepsy—1 in 100 with uncontrolled seizures.  Chelsea’s story emphasizes the urgency and importance of finding cures for epilepsy.  And it also reveals how an amazing family can rise to face epilepsy’s most awful challenge.

After losing Chelsea, the Hutchisons organized The Chelsea Hutchison Foundation (CHF) to help other families. Since 2009, CHF has distributed 89 Emfit monitors, 43 seizure alert dog grants and 11 SmartWatches to help alert people and caregivers to eminent seizures—and possibly avoid tragedy.

Chelsea Hutchison

Chelsea Hutchison

Adversity

Julie cannot explain her loss in words—“To say it was horrendous or excruciatingly painful…those words minimize the real truth behind it.”  Doug tells me, “To be completely taken aback by what went down was just unbelievable.”  It seems that one of the most difficult things about the loss was that it came as such a total surprise.  The Hutchisons had absolutely no idea that Chelsea was at risk during the years, months, days or hours leading up to the night of April 19, 2009.

Chelsea with her mother, Julie Hutchison

Chelsea with her mother, Julie Hutchison

Support
When asked about how she has found support for her loss, Julie immediately explains, “The first thing that comes into my mind is just who Chelsea was as a person.”  She fights back tears before saying, “If somebody was sad or lonely, she was the one who was jumping in and trying to make changes in their life.”  They know that Chelsea would not have wanted them to be torn apart.  “Chelsea hated people being sad.”

They are still grieving, but it is obvious that Chelsea brings back many of their happiest memories.  Julie explains, “One thing that every parent who’s in our shoes is desperate to do is to keep their child’s memory alive. I have conversations like that with people every day, and talking with people about her is healing.  The people that we’ve met since losing Chelsea are life–long friends and I refer to them as gifts from Chelsea.” Julie goes on to say that, “Keeping her at the top of our mind is what the Foundation is all about.  People say all the time, ‘Thank You Chelsea.’”  For me, that’s huge.”

The Hutchisons became involved with The Compassionate Friends, a group for bereaved parents.  As Doug says, “when you’ve lost a child, your support system will change drastically.  People you’d never dreamed would be supportive come forward.”

Chelsea with her father, Doug Hutchison.

Chelsea with her father, Doug Hutchison.

Julie remembers the Director asking them on one of their first visits, “When you come face to face with your child again, what will you tell them you did with the rest of your life, and will they be proud?”  This reminded them that Chelsea was gone but it also reminded them that they would be reunited again.  Doug says, “As painful as that story is, we never hesitate to tell people.”

Doctors and Treatment
Julie believes that anyone with tonic clonic seizures should have an Emfit Monitor in case of any seizures in bed.  Doug says that a SmartWatch can be empowering as a safety link between young adults/adults and loved ones.  “It just provides another line of defense” he explains, “…it lessens the anxiety that parents have.”

The Hutchisons are well–known in Denver for seizure response dogs.  Dogs provide companionship, they can alert owners to seizures, respond to seizures, and they can lower stress levels—which can reduce the frequency of seizures.  But Doug stresses that “with seizure response dogs it is important for the family to keep up the training.”  He emphasizes that they can be expensive to purchase and to own—and that it is critical to maintain their training.

Tips Tricks and Advice
Julie credits their grief counselor with advising them to “not let anybody ‘should’ on us.”  Julie goes on, “You have to know your limits, and take it at your own pace.”  Doug lays it out clearly: “Don’t worry about what other people think or do.  A lot of people mean well…But truly, sometimes you just have to curl up in your own fetal position and deal with it on your own.”

But they also value community.  Julie “finds great comfort in being around people who understand this.  You don’t have to explain yourself.  I think it’s really people who have been down the same path.  It’s so hard to explain to somebody that…you know, they want to understand, but you can’t put it into words.”

They are also very spiritual, Julie says: “We both believe [Chelsea] is running the show.  We feel a very strong closeness to her.”

They have found comfort in seeing a spiritual medium.  Doug believes that she has colored their attitude and “was able to tell us things that made sense and…” he chuckles for a minute before opting against further explanation, “Some people are gonna go along with it, some aren’t.”  Julie laughs from the other line, listening to Doug and listening to my hammering keyboard, “Doug, I think that was Stephen just typing ‘Wacko.’”  I promised them that I wouldn’t put that in the story, but then Doug let me know that he “wears [craziness] on his sleeve with relish.”  I laugh pretty hard at that, and then explain to both of them that in fact I had just been typing in Julie’s previous comment: “There’s just no right way to go about this…you just gotta do what you gotta do to survive.”  The Hutchisons have been finding a path, even in spite of grief.  And they have been helping many others along the way too.

Squash Epilepsy Party

Thanks to our friends for coming out to the “Squash Epilepsy” Fall Party on November 15.  We had a great time, and listened to stories from our Share Your Story Stars, David Jensen and Brad and Tracy Rinehart!  Thanks for helping to support STW at this event, and will be excited for next year’s party as well — here are a few pictures from the Squash Epilepsy party:

STW T-Shirt Party!

STW Friends gathered to help print a batch of 60 brand–new Canvas t–shirts at the Ink Lounge in Denver.  This was a really fun night and it was really awesome that Ink Lounge donated time and space for the event and that our friends came out to help!!  To pick up a new STW t-shirt, click here!!

Never Give Up

Brad Rinehart’s motto is, “never ever give up.” He lives in Aurora with his wife Tracy and their two dogs Magnum and Mocha. They were married in 2000 and life was as normal as could be until 2001 when Brad suddenly had a breakthrough seizure. It was the first of hundreds that have since become a part of Brad’s life. Brad has experienced as many as 15 seizures a day when things were at their worst, but he has worked with doctors in Florida, Connecticut and California to bring those numbers down to two or three seizures per day today. He has a Vagus Nerve Stimulator implanted in his chest and a NeuroPace Stimulator implanted in his brain to help control his epilepsy. Brad is confident that one day he will overcome his challenges with epilepsy.

photo

[Brad Rinehart (L) pictured with family and friends at the Epilepsy Foundation of Colorado’s Stride’s for Epilepsy 5k in Denver.]

Through all of his experience, he is grateful for the ability to remain active. Brad’s story is about family, running, medical care and the support of his wife Tracy in helping him to overcome the challenges of epilepsy.

Adversity

One of Brad’s greatest challenges has been not knowing when his seizures will strike. Brad

explains, “An alcoholic can stop. They can stop cold turkey and have a clear day. I can’t stop.” Brad does not have warnings or auras before his seizures, and he never grows accustomed to being caught off guard by his seizures. “That is a source of frustration.” Brad expands, “when you have an epileptic problem you are always tired, all the time.” He acknowledges that epilepsy will be with him for his entire life. Brad’s wife, Tracy, discusses additional challenges, “He has given up the freedom to drive…he has given up the freedom to be by himself, pretty much all the time.” Brad also had to give up a career in the hospitality business, which Brad describes as, “…being like a second family…I did not know how to say goodbye to my second family.”

Support

“My family is my rock,” Brad explains. “As much as a lot of people have said that, it really is true – Tracy really is my rock…when I had four brain surgeries, we joke by saying that she got a degree in neurology.” Tracy elaborates, “Our friends and family are there all the time. They understand the situation. We have no secrets, we are unashamed, and our friends know what to do.” Brad also benefits greatly from athletic activities – especially running. His favorite organized run is the Bolder Boulder 10k, which he runs every year with his brother. “This is now my favorite race that we do together…you know many of the greatest runners of all time are running here…It’s my favorite run and there is no other run like it.” Brad has run ½ Marathons and is working toward the goal of running a full Marathon. Once he has done so, he aspires to tackle longer endurance races as well. In simplest terms, Brad explains, “Running is a stress relief for me – it makes me feel better.”

Doctors and Treatment

Brad suffers primarily from partial-complex seizures, which occur two or three times a day. Brad’s first seizure occurred when he was very young, but when he was sixteen they stopped for a period of eight or nine years. In 2001 they resumed with a tonic-clonic (grand-mal) seizure. Initially, it was not uncommon for him to experience 15 partial-complex seizures in a day after that. When asked about which medications he has taken, Brad responds, “Almost all of them.” Currently, he is taking 4 doses a day of a “cocktail” of three different medications: Depacote, Tegratol and Zonegran. Brad has pursued other treatment options as well. Several years ago, Brad had a Vagus Nerve Stimulator implanted in his chest. VNS is a small device designed to give off electrical charges that will prevent seizure activity in patients. Brad has had only limited success with the VNS.  Brad has also had four different brain surgeries – most-recently at Yale New-Haven Hospital under the care of husband and wife team, Drs. Dennis and Susan Spencer – neurosurgeon and neurologist respectively. He recalls his experiences at Yale New Haven hospital fondly, describing the wide variety of memory tests that nurses had him perform, and talking about the positive nature of his doctors. When he left, Brad had become the first patient to ever be implanted with a NeuroPace Stimulator. The stimulator is a small electrical device implanted in the brain designed to deliver electrical stimulation to prevent seizures. Brad’s surgery was a huge help, and it greatly reduced the number and severity of his seizures. Yale and USC are the two primary University Hospitals in the country working with NeuroPace, and Brad is currently seeing a neurologist named Catherine Heck at USC.

Tips and Tricks

Brad’s primary advice for people with seizures is, “Never ever give up.” Tracy adds to that, “I agree – stay active with it and find that one thing that you really enjoy doing and keep it in your daily routine. With Brad, he didn’t always run, but it’s something he’s been passionate about since I met him and the relief he feels when he comes back from a run…he’s a new person.” Brad emphasizes the importance of keeping a positive attitude, as well. “We call it ‘Mr. E.’ – one day we’re going to beat it.  In the meantime we have fun with it.”

-Stephen Allen

Brad and Tracy visited the Seize The World tent at Epilepsy Foundation of Colorado’s Strides For Epilepsy 5k Run/Walk this June.  They connected with Stephen during the following weeks to Share Their Story.  Stephen met with Brad and Tracy in Centennial, Colorado for coffee and to hear about their experiences.  He was amazed by what they have accomplished in spite of some major hurdles.  Stephen is excited to connect with both of them again soon at upcoming STW events!!