W W W. E F M N . OR G
A Q UAR TER LY PUB L IC AT I ON OF T HE E P I L E P S Y FO UNDATI O N O F MI NNE SO TA
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Clinician’s Corner
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Seizures Don’t Stop Me
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Epilepsy Awareness Day at the Capitol
WINT ER 2015
R E AP P L UE A FIN ISS We’re Thinking Green in 2015!
2014 was a big year, celebrating 60 years of serving people with epilepsy and helping people #RiseAboveSeizures!
2014 marked the Epilepsy Foundation of Minnesota's 60th anniversary! It was a big year, highlighted by the creation of the "Chasing Dreams Coach Kill Epilepsy Fund" to support Camp Oz and Seizure Smart Schools. What a triumph for Coach Kill to win Big Ten Coach of the Year, just one year after local media questioned his abilities due to seizures. He truly did #RiseAboveSeizures! EFMN hosted a major community awareness initiative across MN & ND: "Rise Above Seizures Day" on May 15. Record numbers of Camp Oz campers and people attended our 2014 events, and we hosted a second epilepsy research summit in November. This momentum will continue in 2015! EFMN just completed a three-year strategic plan that includes more work around awareness and expanding programs to serve people with epilepsy. Thank you for supporting our efforts to educate, connect and empower people impacted by epilepsy so that people with seizures can realize their full potential. Best,
Vicki Kopplin Executive Director
THE EPILEPSY FOUNDATION OF MINNESOTA is a nonprofit organization and one of forty-eight affiliates of the National Epilepsy Foundation. Serving Minnesota and Eastern North Dakota, the Foundation works to educate, connect and empower people affected by seizures.
Jill Corbin – Northland Representative Timothy Feyma, MD – PAB Chair Ryan Lais – Southern MN Representative Mark Lenhardt – Central MN Representative Josh Malnourie – Northwestern MN & Eastern ND Representative
MISSION
PROFESSIONAL ADVISORY BOARD
The Epilepsy Foundation of Minnesota leads the fight to stop seizures, find a cure and overcome the challenges of living with epilepsy.
OFFICERS President Brett Boyum Vice President Tim Gallagher Treasurer Elizabeth Beastrom Secretary & Legal Counsel Christopher Turoski APPOINTED MEMBERS Bill Atwell Mike Britten Patrick Burns Marcus Fischer Brandon Megal Deb Meyer Mike Murray Wendy Osterberg
2 | Epilepsy Minnesota DESIGNATED MEMBERS
Rhea Nelson Rock Kari Rosand Scanlon Jim Silburn Tom Spiczka Scott Tonneson Trudi Trysla Randy Unzicker Bill Walsh
Chair | Timothy Feyma, MD | Gillette Children's Specialty Healthcare Anne Barnwell, MS, CRC | Epilepsy Advocacy & Employment Group Jeannine Conway, PharmD, BCPS | University of Minnesota Armantina Espinosa, MD | Minneapolis Clinic of Neurology Rupert Exconde, MD | Noran Neurological Clinic Miguel Fiol, MD | University of Minnesota Douglas Heck, PhD | Duluth Psychological Clinic, Inc Thomas Henry, MD | University of Minnesota Ilo Leppik, MD | University of Minnesota & MINCEP Epilepsy Care Donna McKenny, PHN, LSN, MEd | Centennial Schools Katherine Nickels, MD | Mayo Clinic Patricia Penovich, MD | Minnesota Epilepsy Group Kathleen Rieke, MD | CentraCare Health System Frank Ritter, MD | Minnesota Epilepsy Group Joanne Rogin, MD | Midwest Center for Seizure Disorders Ravinda Samaraweera, MD | Sanford Health Teresa Tran, MD | Park Nicollet
www.efmn.org
Clinicians Corner Nonepileptic Events
By Professional Advisory Board Member, Pat Penovich, M.D.
In the Clinician’s Corner, we have spent many years discussing topics related to epilepsy and seizures. So it may seem strange to be dedicating this column to seizures which are not due to epilepsy. These are termed nonepileptic seizures (NES), paroxysmal nonepileptic seizures (PNES) or nonepileptic events (NEE). All of these terms are names for a behavior that may look like a seizure but which does not originate from seizure discharge in the brain. There are two types of NEEs; those due to other physical processes, and those due to psychological origins. Physiologic NEEs may occur when a person passes out or faints. This may be due to a heart or blood pressure problem. As the brain and spinal cord are released from normal controls, the person may have a brief period of single or multiple jerks that may look like seizure. Other events that may be misinterpreted as seizures are sleep related such as
night terrors, cataplexy or sleep walking; movement disorders like tics or myoclonus; breath holding spells in infants; gastrointestinal reflux in infants. Psychological NEEs may occur alone or in about 20% of people who have epilepsy. They tend to happen more in women and in people who have psychological or psychiatric disorders which may or may not have been previously recognized. In school children, they may occur when the child is stressed from academic challenges, bullying, or family discord. Adults may present when under similar acute physical or stressful situations. Frequently adults may have post-traumatic stress disorder (PTSD), anxiety or depression disorders, or chronic pain syndromes. It is not obvious by just looking at a person having an event if it is an epileptic seizure or a NEE. A person can be injured,
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Nonepileptic Events (Continued from page 3) bite the tongue, or lose urine during a NEE just as they can in an epileptic seizure. A routine office EEG does not answer the question. About 10% of the population will have abnormalities on a routine EEG which may be misinterpreted and does not actually mean the person has epilepsy. A video EEG during which the event is recorded permits the neurologist to see if the clinical behavior correlates with actual epileptic brain patterns. The Video EEG is the “Gold Standard” for diagnostic accuracy. Antiepileptic drugs (AEDs) do not treat NEEs. If the event is a physiologic event such as a cardiac arrhythmia, the underlying problem must be treated. For those patients with psychological NEEs, the recommended treatment involves the treatment of the psychological disorder. These events are almost never purposeful. They are real and are rarely under conscious control. Multiple trips to emergency rooms, MRIs or CT scans, hospital admissions, & multiple AED regimens will not cure or control these and lead to high medical costs
due to unnecessary tests and procedures. There is growing evidence that education and a supportive social environment lead to improvement. For some individuals a particular type of psychological intervention called cognitive behavioral therapy (CBT) can lead to event/seizure freedom in 60-80% of individuals. This control can be maintained long term, although it may not occur immediately. The first, most important step, however, is getting the right diagnosis. If someone has seizures that do not respond to the first or second AED treatment, the patient and their physician should always question whether the initial diagnosis is correct. This will involve an evaluation that includes a careful history and evaluation by the neurologist and/or epileptologist and a video EEG recording during which the event(s) in question are recorded. Visit efmn.org and search “non-epileptic” for more information.
Camp Oz Registration Opens February 2 Camp Oz is June 14-19, 2015 at YMCA’s Camp St. Croix in Hudson (please note: this is one week earlier than previous years).Youth ages 9-17 can attend. Register at efmn.org. Camp Oz has had a waiting list for the last three years, so register early!
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www.efmn.org
Seizures Don’t Stop Me By John Grahek I’m John Grahek, Jr. and I was diagnosed with seizures at 8 months old. I’m now 41 and have dealt with epilepsy all my life. I have been on several different seizure medications, always trying to find the right combination. I have overcome many obstacles in my life, including transportation, stigma, employment and being told I couldn’t fish in tournaments (which is my passion). In 2002 while participating in a fishing tournament, I fell in the water and almost drowned. Luckily, I was saved, put on life support and a ventilator and fully recovered. After that incident, my mom found a fishing angel lapel pin and gave it to me; I wear the pin on my hat all the time.
In 2009 after a having a seizure in Red Wing, I was asked to step down from fishing tournaments. I called the tournament director and told them I would do anything to get back into the tournament, as fishing is my passion and I wouldn’t give it up for anything. They decided to let me back in the tournament! And now I wear a life jacket that inflates if I fall in the water, so I know I’ll be safe if I have another seizure while fishing. 2013 was a great year! I like to call it my “comeback year." I acquired enough points to qualify for the championship in Red Wing (which happened to be in my own back yard, as anglers say). I didn't do very well, but I can actually say I made it to the championship! I have the attitude of “don’t quit” and “nothing will stop me.” While some have seizures for a few years and outgrow them, mine are for a lifetime. My hope is with research and donations, people with epilepsy will no longer be subjected to stigma. I am living proof that "Seizures Don't Stop Me" from doing what I love to do.
The Foundation’s largest youth program celebrates youth with epilepsy, connecting them with others to reduce isolation. Join the 300+ Shining Stars across MN and ND at efmn.org or call 800.779.0777, ext. 2310 for assistance.
www.efmn.org
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EFMN in Action
Proudly serving people across MN and ND Seizure Smart Community Workshops 200+ people attended four workshops throughout the community this fall to learn about epilepsy, seizure first aid and hear from families affected by epilepsy.
Shining Star Annual Event Miss Minnesota Savannah Cole joined 300 Shining Stars at the Water Park of America for this annual event‌it was our largest Shining Star event in history!
Go-Pher Epilepsy Awareness Game 50,000 rally towels were distributed at this year’s Go-Pher Epilepsy Awareness game to raise awareness.
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www.efmn.org
Epilepsy Day at the Capitol Tuesday, February 24, 2015 8:30AM – 1PM Join people from across the state to raise epilepsy awareness with MN state legislators. There are 26 newlyelected legislators who need to be educated about epilepsy! This year we’re focusing on the importance of epilepsy education through our Seizure Smart Schools program. This day is flexible to fit your schedule, transportation options are available and lunch is provided. Register at EFMN.org or contact Diane White (651.287.2312).
Make a difference, give today! It’s never too late to support our programs that educate, connect and empower communities across MN and eastern ND. Together we can impact more lives in 2015 than ever before – let’s start now! Your gift, your way: •
Mail (checks payable to: Epilepsy Foundation of MN)
1600 University Ave W. Ste. 300, St. Paul, MN 55104
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Call 651.287.2319 or visit efmn.org/giving
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Legacy giving: add EFMN as beneficiary in your IRA,
401k/403b or in your will and help sustain the future
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Double your gift through an employer match
We would like to thank the more than 3,200 people who helped people with seizures realize their full potential by making a gift in 2014.
www.efmn.org
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Connect with us! Sign up for an email version of this newsletter and to receive the latest news and information from EFMN. Visit efmn.org to connect.
We’re Thinking Green in 2015! In an effort to reduce our carbon footprint and better serve you, EFMN will deliver this newsletter to your inbox this spring! You’ll still get exclusive educational content, epilepsy news and event information…just in your inbox rather than mailbox .
This newsletter will be our last printed issue. If you prefer updates by mail, please complete the form below and mail it to EFMN or call 800.779.0777, ext. 2310. Please register me to receive a paper copy of EFMN’s future newsletters!
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