Winter 2015 Newsletter

Clinician’s Corner

Seizures Don’t Stop Me

Epilepsy Awareness Day at the Capitol

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We’re Thinking Green in 2015!

FINAL PAPER

ISSUE

A QUARTERLY PUBLICATION OF THE EPILEPSY FOUNDATION OF MINNESOTA WINTER 2015

WWW.EFMN.ORG

2 | Epilepsy Minnesota www.efmn.org

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.

MISSION The Epilepsy Foundation of Minnesota leads the fight to stop seizures, find a cure and overcome the challenges of living with epilepsy.

OFFICERSPresident Brett BoyumVice President Tim GallagherTreasurer Elizabeth BeastromSecretary & Legal Counsel Christopher Turoski

APPOINTED MEMBERS

DESIGNATED MEMBERS

Jill Corbin – Northland RepresentativeTimothy Feyma, MD – PAB ChairRyan Lais – Southern MN RepresentativeMark Lenhardt – Central MN RepresentativeJosh Malnourie – Northwestern MN & Eastern ND Representative

PROFESSIONAL ADVISORY BOARDChair | Timothy Feyma, MD | Gillette Children's Specialty HealthcareAnne Barnwell, MS, CRC | Epilepsy Advocacy & Employment GroupJeannine Conway, PharmD, BCPS | University of MinnesotaArmantina Espinosa, MD | Minneapolis Clinic of NeurologyRupert Exconde, MD | Noran Neurological ClinicMiguel Fiol, MD | University of MinnesotaDouglas Heck, PhD | Duluth Psychological Clinic, IncThomas Henry, MD | University of MinnesotaIlo Leppik, MD | University of Minnesota & MINCEP Epilepsy CareDonna McKenny, PHN, LSN, MEd | Centennial SchoolsKatherine Nickels, MD | Mayo ClinicPatricia Penovich, MD | Minnesota Epilepsy GroupKathleen Rieke, MD | CentraCare Health SystemFrank Ritter, MD | Minnesota Epilepsy GroupJoanne Rogin, MD | Midwest Center for Seizure Disorders Ravinda Samaraweera, MD | Sanford HealthTeresa Tran, MD | Park Nicollet

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 KopplinExecutive Director

Bill AtwellMike BrittenPatrick BurnsMarcus Fischer Brandon MegalDeb MeyerMike MurrayWendy Osterberg

Rhea Nelson RockKari Rosand ScanlonJim SilburnTom SpiczkaScott TonnesonTrudi TryslaRandy UnzickerBill Walsh

2014 was a

big year,

celebrating

60 years of

serving people

with epilepsy

and helping people

#RiseAboveSeizures!

www.efmn.org Epilepsy Minnesota | 3

Clinicians Corner Nonepileptic EventsBy 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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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 2Camp 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!

Nonepileptic Events(Continued from page 3)

www.efmn.org Epilepsy Minnesota | 5

Seizures Don’t Stop MeBy John Grahek

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.

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.

6 | Epilepsy Minnesota www.efmn.org

EFMN in ActionProudly serving people across MN and ND

Go-Pher Epilepsy Awareness Game

50,000 rally towels were distributed at this year’s Go-Pher Epilepsy Awareness game to raise awareness.

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 event…it was our largest Shining Star event in history!

www.efmn.org Epilepsy Minnesota | 7

Epilepsy Day at the Capitol

Make a difference, give today!

Tuesday, February 24, 2015

8:30AM – 1PM

Join people from across the state to raise epilepsy

awareness with MN state legislators. There are 26 newly-

elected 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).

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

• Call 651.287.2319 or visit efmn.org/giving

• Legacy giving: add EFMN as beneficiary in your IRA,

401k/403b or in your will and help sustain the future

• 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.

1600 University Avenue West, Suite 300Saint Paul, MN 55104www.efmn.org

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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.

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