Supporting partners of people
with epilepsy

March 8, 2012 8:04 pm Views: 273
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Epilepsy Toronto clients' Angela and Peter Antzoulakos with their daughter, Isabella. Peter is a member of the Partners Support Group.

A diagnosis of epilepsy is often a very scary reality, not just for the person with epilepsy, but for their family members as well. Partners are often faced with fears relating to over-responsibility, social isolation, and concerns about their partner’s safety. Epilepsy Toronto, a non-profit agency, is dedicated to the promotion of independence and quality of life for people with epilepsy and their families. A critical part of the work we do is provide support to families and couples facing the stress that caregivers often experience.

Partners of people with epilepsy often ask:
•    What do I do when my partner is having a seizure?
•    How should I respond after the seizure?
•    How do I guard against overprotection while still trying to show concern and provide support?
•    How can I cope with the increased stress of taking on more responsibilities in the home during times of active and frequent seizures?
•    Should I remind him/her to take medications?

Epilepsy is not a barrier to achieving and maintaining meaningful relationships. That said, epilepsy can feel like a barrier to some, and can impact a relationship to a greater or lesser extent, depending on a variety of factors including: seizure type, frequency of seizures, medication side effects and the impact on driving and employment.

The following is a typical scenario presented to Epilepsy Toronto:
“My husband has epilepsy and I am having challenges coping. He is on 3 different medications which are affecting his short-term memory and making him really tired. We both have very good jobs but he has missed a lot of work and I am afraid he will have to stop working soon. As if that isn’t bad enough, he lost his driver’s license and with two young children ages eight and four, I am left with the responsibility of driving everybody everywhere.  I don’t understand a lot about epilepsy and I am often overwhelmed and frustrated. He gets angry when I keep calling to ask if he is okay or if he has taken his medications. All this is really affecting our relationship. We have stopped going out because we are so afraid he will have a seizure. Are there others who go through this or am I the only one?”

Epilepsy is not often talked about in public. Misconceptions and fears persist and can be burdensome to everyone affected. The fact is, epilepsy is not a disease but a common neurological disorder affecting one out of every 100 Canadians.

Epilepsy Toronto helps. In addition to counseling sessions for couples, Epilepsy Toronto facilitates support groups for partners. Our Partners of People with Epilepsy Support Group has proven to be very beneficial to those who have attended and participation in the program continues to grow.

“This is such a valuable group and the support to the partners of those living with epilepsy. I have really benefitted from being part of the group and just being with individuals who “get it”.  To hear that others’ experiences when going through that difficult time period, from first seizure to diagnosis, was terrific. All of a sudden, I was not alone in this.  Also, it really drove home to me that no two people’s epilepsy path is the same.  The support group provides a safe harbour to vent and I always feel so much better at the end of the sessions,” says Barb M., a member of the  Partners of People with Epilepsy Support Group.

Participation in any of the Epilepsy Toronto support groups is free of charge. For more information on Epilepsy Toronto’s programs and services visit epilepsytoronto.org

March is Epilepsy Awareness month leading to March 26th, Purple Day for Epilepsy, an international movement to raise awareness about epilepsy.

“A Guide for Professionals and Caregivers is available online at  http://www.epilepsymatters.com/english/pamphlets/guideforprofessionals.pdf

Article By:

Rosie Smith

Rosie Smith is the Director of Adult Services at Epilepsy Toronto. She can be reached at rsmith@epilepsytoronto.org.

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