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When seizures struck, Tiffany Barnes lost her memory. What she gained was the determination to make a difference

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When epilepsy threatened to derail her parenting
abilities, Whitney Goulstone got back on track.

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She helped her Canadian classmates understand
epilepsy - and launched a global awareness event.

The evening of October 5, 2010 seemed like any other. 23-year-old Tiffany Barnes was in the bathroom doing all the things she usually did to get ready for bed — brushing her teeth, washing her face. Little did she know, her life was about to change. Drastically. “My mom heard me fall to the ground and start having a tonic-clonic seizure”.

Seizures were nothing new for Tiffany. She’d been diagnosed with epilepsy at the age of 17. And despite having tonic-clonic seizures, sometimes several in a day, her epilepsy never prevented her from becoming an accomplished young woman. “I was in the last year of my medical office administration degree. I was on the honour roll. I’m not trying to, you know, pump my tires, but I was smart.”

When Tiffany’s mother finally got the bathroom door unlocked, she discovered her shaking daughter curled up in the fetal position on the floor, her eyes darting quickly from side to side. Tiffany didn’t recognize her mother, didn’t know where she was, or even who she was.

Confusion during the postictal stage — the state of consciousness a person enters following a seizure — is common. But after half an hour had passed and Tiffany was no better, her mother knew something was seriously wrong. “They rushed me to the hospital and did a bunch of tests — MRI, CT, blood tests.” When the results were inconclusive, Tiffany’s mother was simply told to take her daughter home. “They prepared my mom to take home a child that had no idea who she was”.

 

Memory lost

As it turned out, Tiffany had lost virtually all her memory. She couldn’t read or write, couldn’t remember anything she’d learned in school, and didn’t even recognize herself in pictures. Worse still, she had completely forgotten how to perform simple, everyday tasks. “That first night was terrifying,” she says. Endless questions went through her mind. “Is this my room? How do I get in bed? How do I get out of bed? Where’s the bathroom? How do I put on clothes? What’s ‘pajamas’? What’s a blanket? How do I sleep?”

Scared and exasperated, Tiffany’s family began researching diligently to try to figure out what was going on. Finally, with the help of the epilepsy support centre, they learned Tiffany had suffered retrograde amnesia due to the multiple seizures — a very rare occurrence in people with epilepsy. Apparently, it could take years for Tiffany to regain her memory. And so, surrounded by her devoted family, she began the daunting task of re-building an entire life’s worth of skills and knowledge.

Initially, Tiffany worked with an occupational therapist to re-learn basic, everyday life skills — how to cook, do laundry, brush her hair. Once she progressed a bit further, her family hired an English and math tutor. She even began volunteering in a grade 7 class with a family friend. “They all thought I was there to support them. But really, I was there to absorb the information as well. I was learning their math, their science, their history and geography right along with them.”

 

Re-making memories

Fortunately, Tiffany’s seizures haven’t impacted her anterograde memory  — the brain’s ability to store new information. Which means she’s been able to build wonderful, new memories with her family and friends.

She’s also regained bits and pieces of her ‘old’ memories. She recognizes her family members, and has flashes where people or objects look familiar. “I get what they call my ‘memory face’. I could see something and recognize it and I’ll be like, ‘Oh, I’ve seen that before’. Or I’ll see a person and be like, ‘Oh, I know you’.”

In less than two years, Tiffany has gone from being a self-described “four year old” painting colouring books, to becoming a functional, independent adult once again. She’s fiercely proud of her accomplishment, and is passionate about sharing her story with others.

Fortuitously, in January of 2012, the Epilepsy Support Centre nominated her to become an E-Action® leader, a role that allows her to raise awareness about epilepsy, and be an advocate for those afflicted with the disorder.

is the inability to recall events before the event that brought on the amnesia. Think ‘Matt Damon’ in The Bourne Identity or ‘Rachel McAdams’ in The Vow.
is the inability to store new memories after the event that brought on the amnesia. Think ‘Guy Pearce’ in Memento, or ‘Drew Barrymore’ in 50 First Dates.


Last June, Tiffany even braved a trip to Toronto — by herself — from her hometown of London, Ontario to take part in an E-Action® conference. An astounding feat considering that not even 20 months previously, she didn’t know what pajamas were. “Leaving on the train, I was panicked because I thought, ‘I don’t know where to put my luggage, I don’t know how to get off at the station. What happens if I get lost?’” But she quickly reminded herself that she’d gone over everything. She had a cell phone. She knew how to get in a taxi. “You can do this”, she told herself. And she did.

No looking back

Many of us would imagine being overcome with despair if faced with Tiffany’s situation. But instead, Tiffany is filled with nothing but hope. In fact, when asked if she could go back in time and change what happened, she says ‘no’. “Most people look at me like I’m nuts, but I’m stronger because of what I’ve gone through. And I honestly believe that.” She says with conviction, “Epilepsy may have taken my past, but it will never take my future”.

Of course, she credits her extensive support system with her success and positive attitude.  She’s immensely thankful to her team of doctors, her occupational therapist, her tutors, the epilepsy centre, the brain injury outpatient facility, her family, and especially her youngest sister, Taylor, who she calls her “rock”. “My story really is, yes, I lost my memory, but I picked up the pieces, moved forward, and I’m going to make a difference in this world. And nobody’s going to stop me.”

Meet Whitney Goulstone, a 33-year-old mother of two toddlers (Andrew, 4, and Lillian, 2), who has epilepsy. In November 2010, Whitney agreed to have a dramatic form of surgery in the hope of reducing her seizures. Now, she is happy to report that she is living seizure-free for the first time in 20 years. Whitney derives great satisfaction as a writer and an epilepsy advocate. She and her husband Richard reside in the greater Toronto area.

I’ve been living with epilepsy for almost 20 years, although I didn’t know it for the first six! I started having partial seizures when I was 13, but at the time, I didn’t know what they were. I began to notice that my vision would become distorted for about 10 seconds, as if everything was two dimensional.

My GP wasn’t able to arrive at a diagnosis so he referred me to an ophthalmologist. You can imagine how frustrated – and surprised – I was when he prescribed glasses that I didn’t really need. After all, I didn’t have problems reading or seeing things at distance. It wasn’t until I had my first tonic-clonic (grand mal) seizure at the age of 19 that a neurologist diagnosed me with epilepsy. While, naturally, I wasn’t happy to receive the news, I was actually relieved to at last have a diagnosis.

 

Over the next few years, I continued to experience the occasional seizure, however, most of these were quite well managed with medication. On the “not so bright” side of things, my driver’s license was revoked and that had quite a negative impact on my sense of independence. But, never one to be defeated, I completed my university studies, married Richard, and enjoyed a thriving career. In 2007, I was ecstatic when I gave birth to Andrew, my delightful baby boy.

Then my good luck changed. When my son was about five weeks old, the seizures -- which up until then had been mostly nocturnal and, therefore, not too intrusive -- returned with a vengeance. Perhaps it was the sleep deprivation or just the sheer exhaustion of breastfeeding and caring for an infant that triggered the change in seizure activity. I began having simple partial seizures more frequently, night and day and, suddenly, I became unable to talk or maintain my balance while having them. I switched to a different medication and my condition improved to the point where I was only having the odd, partial seizure, and only at night.

At age 30, when I became pregnant with my daughter, I suddenly started experiencing drop seizures, whereupon I would just fall down, without any warning and with no memory after of what had happened. On one such occasion, I had hit my head so hard that I ended up needing seven stitches to my head. Needless to say, Richard and I had tremendous anxiety about what would happen next.

 

As time went on, things progressed from bad to worse. I experienced five to seven seizures a day, of all sorts: partial, drop and, of greatest concern, tonic-clonic seizures that affect the entire brain. My concentration and memory were so severely affected that I had to quit my job.

The situation reached the point where, in order to avoid concussions, I needed to use a wheelchair and to wear a helmet to protect my head from further injury. I was even unable to hold my kids for fear of hurting or dropping them in the event of a seizure. It was a horrible time for a young mother doing her best to cope with the challenges of motherhood, compounded by the challenges of trying to live successfully with epilepsy. Richard was supportive but, of course, it put a strain on him, too. When Andrew was just three years old, he would hold my hand during my seizures and say to me, “It’s going to be okay, Mommy.” That’s not something a three-year-old should have to deal with.

Both of my neurologists and my neurosurgeon at the Epilepsy Clinic at Toronto Western Hospital, where I am treated, thought that my epilepsy may have been hereditary, since I had an aunt with the condition. However, pathology results showed that, in fact, my condition was caused by cortical dysplasia – a birth defect. It was simply a matter of how my brain formed in utero. Anyone with epilepsy knows that finding the right medication can be tricky and the side effects are sometimes difficult to deal with. We found out through difficult trial and error that I’m allergic to one particular group of medications and that one or two other drugs had no effect on me. Unfortunately, some antiepileptic drugs may cause sedation and weight gain in some people, which was the case for me. I also became a little clumsy and forgetful.

Purple Day is March 26
Mark the Date and Get Involved!
Not sure what to do (besides wearing purple!) on Purple Day?

Check out www.purpleday.org/ideas.php
for ideas.

My next step was to consult a neurosurgeon who believed I might be a good candidate for a craniotomy, a specialized type of brain surgery that can offer relief for people with drug-resistant epilepsy. A craniotomy often involves removing the portion of the brain that causes seizures. In late 2010, I had my first surgery, in which a grid was placed on my brain to monitor and map my seizures. A few weeks later, during a six-hour procedure, a large lesion the doctors thought was the main cause of my seizures was removed. Before surgery I was on five medications; currently I’m on three.

I haven’t had a seizure since the surgery and I can once again do the things that are important to me, like putting my kids to bed. I’m enjoying being a part of their lives again. Of course, I might have seizures in the future, but for now, my quality of life has improved and I’m not constantly worried about my “next” seizure. In fact, I’m hoping to be seizure free until November 2012, which will mark “two years of freedom” from epileptic seizures. At that time, my doctors will assess my condition and see if I can reduce my medications.

With epilepsy, we don’t talk about a “cure”; rather, we aim for control. For me, when it comes to seizures, “control” and “quality of life” mean the same thing. There were times over the years when I had to switch medications, and depression would kick in after certain seizures. But all in all, I felt I had control over the situation from the time of my diagnosis in August 1999 until February 2009, when the seizures came back full force.

The hardest challenge for me has been not being able to be as much of a hands-on mother as I’d like. For a long time I felt guilty that my children had an absent parent because there were things I simply wasn’t able to do. In addition, at times I have felt extremely stigmatized. At one point I was wearing a helmet everywhere and people stared at me wherever I went. I stuck epilepsy decals all over it and, with a big smile on my face I told anyone who stared long enough that I had epilepsy.

I have always tried to educate people about my condition. I’m an outspoken person and I think that people need to know about epilepsy. Unlike others I’ve known who suffer from epilepsy, I’ve never tried to hide it from my employers or friends, and I’ve certainly never felt that it defined me.

In terms of emotional support, my husband and the rest of my family have always been there for me. Epilepsy Toronto has been a wonderful support group, as well. I first connected with them by joining their Expecting and New Moms Network, where I was fortunate to find a warm group of women who shared and encouraged one other. Going to the group was critical because when you’re living with epilepsy, you can talk to your partner or your parents, but no one can truly understand what you’re going through like someone else who has epilepsy.

While it seems that controlling the seizures is beyond us, there are actually things we can do to improve our quality of life. I make sure to get lots of sleep and I exercise as much as I can. In terms of changing habits, my first step – and this is just me – was to cut out caffeine, which helped. Stress and sleep deprivation were my big triggers, so I started yoga and knitting. I also tried acupuncture, acupressure and massage therapy. I found temporary relief with some, but everyone is different.

I have a very strong vision for my future. Large goal, small steps. The goal is a five-year plan during which I’ll do whatever I can to raise awareness and support for epilepsy, through advocacy and education. I use my blog – http://whitney.goulstone.com/ – as well as Twitter (@itterbit) and Google+ to make connections and keep informed about what’s going on in the world of epilepsy. I’m also working on another blog/website dedicated solely to epilepsy, and I plan to continue talking to community groups and schools as much as possible. On top of all that, I have a fundraising project in the works. It’s no secret that there isn’t nearly enough money allocated to epilepsy research.

Last summer, I was spokesperson for Scotiabank’s BuskerFest whose proceeds go to Epilepsy Toronto, and I was profiled in a Toronto Star article. In addition, the University Health Network is producing a short film about my story which will be used for the hospital’s fundraising and educational programs. As part of my community outreach, I participate in Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. Last, I sit on a number of committees to stay involved and do whatever I can to help. I’m always happy to do my best to support the cause of epilepsy.

She helped her Canadian classmates understand epilepsy—and launched a global awareness event.

“I used to feel like I was the only kid with epilepsy,” says 13-yearold Cassidy Megan. After she was diagnosed with complex-partial seizures at age seven, Cassidy asked her parents not to tell anyone. “She was afraid that her friends would make fun of her,” says her mother, Angela.

To ease her daughter’s fears, Angela asked the epilepsy association of Nova Scotia to speak to Cassidy’s second-grade class. Cassidy saw how genuinely curious her friends were and decided that her mother and teacher could tell the class about her condition. And when Cassidy learned that there wasn’t a designated epilepsy awareness day, she asked her principal if her school could have one. Purple Day was born.

The first purple Day, on March 26, 2008, involved Cassidy’s school as well as a handful of other schools and organizations in Canada. It also had star power: Paul Shaffer, the Canadian-born musical director of the late show with David letterman, wore a purple tie on the air after Cassidy wrote him a letter. Three years later, purple Day 2011 was celebrated in almost 50 countries and involved hundreds of thousands students. Supporters donned purple and sold thousands of purple cupcakes. Even Niagara Falls was lit up in purple. And the event is slated to get bigger and better every year!

 

50 MILLION PEOPLE HAVE EPILEPSY

Cassidy couldn’t have been more wrong about being the only kid in the world with epilepsy! The condition affects about 300,000 people in Canada1 and 50 million people worldwide—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined.2 It’s the second most common neurological disorder after migraine.3 Yet, despite its prevalence, epilepsy is not well understood and people with epilepsy continue to face discrimination. Cassidy’s brainchild is dedicated to changing all that. Purple Day for Epilepsy is helping to reduce the stigma while empowering individuals with epilepsy to take action in their communities. Observed in almost 50 countries around the world,4 from the United States to Croatia, Kenya, Egypt, Israel, the Philippines and even down under, Purple Day is supported by 24 epilepsy education agencies in Canada alone (which together comprise the Canadian Epilepsy Alliance).5 In three short years, Purple Day has become a global campaign, celebrated each March 26. It’s going a long way in helping to demystify epilepsy—a major step toward improving the quality of life of individuals who live with it.

 

When asked about why she started Purple Day, Cassidy said, “I asked my mom why there wasn’t a day for epilepsy like there is for cancer and St. Patrick’s Day and she said she wasn’t sure. So I said I wanted to have a day in which everyone wore purple and call it Purple Day. I’d start with my family and friends and school and then get it to go all over the world. So my mom and I talked to my principal to see if we could do something at my school. We decided to ask the Epilepsy Association of Nova Scotia to come down and do a presentation about epilepsy and the importance of epilepsy awareness. The day that worked best for my school was March 26th. So we decided that would be the day and we’d celebrate Purple Day on that day every year to make it easy to remember. I wrote letters and emailed all the Members of Parliament in Canada and all the MLAs and councillors of Nova Scotia and asked for their help. I even called the Prime Minister but I didn’t get to talk to him. Mom and I called and emailed all kinds of schools and businesses and got them to support Purple Day, too. And now my dream of seeing Purple Day go around the world is coming true. I’m so happy because now people everywhere won’t feel alone and will learn more about epilepsy. I am thankful I have so many people helping now too because that’s what’s making it get bigger each year.”

PURPLE RULES!

Purple Day is March 26 Mark the date
and get involved!

Cassidy’s mom told her that lavender (which, in some cultures, symbolizes isolation and solitude) is the internationally recognized colour associated with epilepsy and seizures, so she picked purple to mark the day. It also happens to be one of her favourite colours! In just a few short years, Cassidy has come a long way from that frightened little girl who didn’t want to talk about her condition. She’s learned that most of her peers, when they find out about her epilepsy, are surprised, fascinated, caring and supportive. And, “Best of all, they then just go on acting normally around me.” She’s pleased that epilepsy has helped shape her into a stronger person and introduced her to literally thousands of people around the world, among whom she counts numerous good friends. “Just check out my page on Facebook and Twitter!”

Angela is justifiably proud of her daughter’s strength and perseverance and is motivated by her every day, saying, “She’s an inspiration to me. She had this amazing idea when she was only nine. It proves that you can make a difference no matter what age you are.”

“I want to teach people about epilepsy so if they have a friend who has a seizure, they know what to do,” Cassidy says. That’s what Purple Day is all about: making sure people know about the condition and how to handle it. Cassidy is looking forward to Purple Day 2012 and wants to be sure that anyone who’s interested goes to the Purple Day website (www.purpleday.org) to find out about events in their area. “It’s easy to get involved—participants can wear purple or host a Purple Day fundraising event in their home, school or business.”

When asked if she has any advice for other kids with epilepsy, Cassidy said, “I’d tell them not to be afraid and to talk about it as much as they can. They should contact local agencies for information and remember that they can do anything they want, that nothing can stop them. And I’d tell them that they should follow their dreams.” In addition to being the founder of Purple Day and a proud spokesperson for the Epilepsy Association of Nova Scotia and kids with epilepsy, Cassidy is a very busy teen. She’s an avid cheerleader, makes pottery, paints, and has even appeared in a number of commercials and played the lead in a movie featured in the Atlantic Film Festival. When she grows up, Cassidy wants to be an actress or an artist or maybe even a hairdresser and she wants to keep working on Purple Day. She’s grateful to the many people who have helped her spread her message and the word about Purple Day, including “my mom, my family and friends, my teachers and doctors, as well as ambassadors around the world and my partners Deirdre and the Epilepsy Association of Nova Scotia, the Canadian Epilepsy Alliance and the Anita Kaufmann Foundation, and all the groups from all over the world. I also want to thank UCB Canada Inc. for all their help and support.”