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Seizing the Day with Epilepsy


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What is Epilepsy?

Epilepsy is a neurological disorder characterized by seizures. These seizures are caused when groups of neurons send the wrong signals, and there is a sudden surge of electrical activity in certain areas of the brain. This means someone with epilepsy may experience involuntary movements, thoughts, feelings, or lose consciousness for a period of time. 


There are various types of seizures, identified by how they impact brain activity, and where. While focal seizures occur in just one specific area and have symptoms directly related to the affected area, generalized seizures, which are less common, occur on both sides of the brain.


Epilepsy can impact anyone, regardless of age, race, or sex. It may occur as a result of another condition that impacts neural activity. This could mean brain tumors, head trauma, strokes, or infections such as meningitis. There are also several genetic factors that may be linked to epilepsy, including certain genes that increase the likelihood of its development, or contribute to a person’s resistance to antiseizure drugs. 


Though seizures present obstacles, many people attribute their positive outlook on life and their determination to their epilepsy. Epilepsy shouldn’t stop you from living a full, active, productive life just as those without.  




Despite Epilepsy

Though it feels debilitating, whether physically or mentally, epilepsy isn’t the end. Seizures become a part of you, but they aren’t you. It’s just another reason to live life to the fullest. 






Managing Epilepsy

Know your epilepsy.

The best way to manage epilepsy is to cater your management strategies to your experience. Write down how you feel before and after a seizure, or what may have caused it. Talk with your doctor and consider what you can do to make your experience with epilepsy the safest possible.

Make your space a safe one.

It is important to think ahead, and ensure your safety in the event of a seizure. In your home, work, or study space, adding padding to any sharp corners, carpeting your floors, having barriers in front of heaters, and ensuring that doors to bathrooms and rooms can open both ways can be very helpful in the event of a seizure. 


Remember to keep your safety precautions rational and sensible, taking care of yourself, but not limiting yourself from having fun and enjoying life.

Take care of your body.

It is important that in addition to managing your seizures, you try to avoid what may trigger them by taking care of your health. Get a full night of sleep, drink lots of water, eat a balanced diet, limit your alcohol intake, and avoid drugs. Being active, whether it's taking a walk or growing vegetables in your garden, will not only improve your mood and self-esteem but can also lower your seizure risk.

Take care of your mind.

Epilepsy can take a toll on your mental health. It is important that you do things that make you happy and keep a positive outlook when you’re feeling your worst. It can also be helpful to try stress management strategies, get help for emotional problems, and keep in touch with your loved ones.

It can also be helpful to wear some sort of medical identification such as a bracelet that says you have epilepsy so that in the event of a seizure while away from home, someone can help you.




Caring for Someone with Epilepsy

Epilepsy is a different experience for everyone. While some people might need care all the time, some may require your help only when they have a seizure. For some, this may be everyday, multiple times a day, or more rarely. It is important that you, as a person who cares, let them know that you’re there for them. 

Know their epilepsy.

Take note of what tends to trigger a seizure for your loved one. This will help lower the risk of the next one and plan in the event that another one occurs. Some other important things to note are what occurs during the seizure and the side effects of medication, if any, as this can be vital information to bring up at the next appointment at the doctor’s office.

Ensure safety during a seizure.

Discuss with your loved one and come up with a plan for when a seizure occurs, whether at home or in public. In preparation, it would be a good idea to make areas such as their home as safe as possible by implementing safety measures. If a seizure occurs when you are in a public space outside of the house, keeping them away from danger, staying with them, knowing when to call for help, and knowing what to do after the seizure ends can really make a difference.

Know when to call for help.

Seizures can be dangerous. It is important to know when there is an emergency and your loved one needs help. If a seizure is lasting longer than 5 minutes, the person is not regaining consciousness, or if they have difficulty breathing, it is a medical emergency.

Encourage them.

Though seizures can be dangerous and it is important to stay safe, remind your loved one that life isn’t lived best in a shell. Encourage them to be active and do what they love. Motivate them to pursue their dreams and passions and view epilepsy only as an obstacle to overcome.


Support

Support can be found anywhere. To find local support, simply search “Epilepsy Support in [Your area]”


Here are just a few:


Epilepsy Toronto is an organization that provides support for everyone to find a safe place to talk about experiences, concerns, and to meet people with similar lives. This includes support groups for youth, young adults, expecting parents, adults, and professionals. There are also support groups that discuss specific topics such as surgery or employment, as well as a recreational group. They even offer support for parents, siblings, and partners of people with epilepsy. Most meetings are held virtually. 


Epilepsy South Central Ontario offers support services for individuals and families to receive assistance, guidance, as well as have an inclusive and safe space to discuss epilepsy and its associated challenges.  


The Epilepsy Foundation is an American foundation that offers support in every state, both virtual and in-person. They offer support for people living with epilepsy in addition to their loved ones. 


An American organization that offers a place for help to be offered, experience to be shared, stories to be told and friends to be made. They also encourage engaging in advocacy.



Helpful Resources


Organizations

Canadian Epilepsy Alliance

An organization made of a multitude of smaller, local organizations across Canada that promote a higher quality of life for people with epilepsy through advocacy, education, and support services. 


Child Neurology Foundation

A foundation dedicated to helping children with neurological disorders live their lives fully by providing information and support. 


Epilepsy Canada

An organization that aims to make a positive difference in the lives of people with epilepsy by providing education, resources, and funding research for cures. 


Epilepsy Foundation

Through education, advocacy, and research, the Epilepsy Foundation aims to better the lives of those living with epilepsy. 


Epilepsy Toronto

Epilepsy Toronto increases awareness for epilepsy, and prides itself on being a place for people to look for help and to find a community of people who care. 


International Bureau for Epilepsy

The International Bureau for Epilepsy is dedicated to providing people with epilepsy and their families the best possible lives, in addition to creating a world where epilepsy is approached with care and understanding. 

For caregivers and parents

Websites:

  • CDC

    This article, “Loving Someone With Epilepsy” provides important information on how to care for and support someone with epilepsy. 

  • HealthyChildren.org

    HealthyChildren has many articles written by pediatricians on epilepsy in children, from infantile spasms to epilepsy in teens. 

  • SickKids

    SickKids has an Epilepsy Classroom, which is a safe learning environment for children in elementary school with epilepsy. 

Books:

  • Growing Up with Epilepsy: A Practical Guide for Parents by Lynn Bennett Blackburn

  • Seizures and Epilepsy in Childhood: A Guide by John M. Freeman, Eileen P.G. Vining, Diana J. Pillas

  • Handbook of Epilepsy by Thomas R. Browne, MD, Gregory L. Holmes, MD

  • Epilepsy in Children: What Every Parent Needs to Know by Erin Conway, Orrin Devinsky and Courtney Schnabel Glick

Podcasts:

  • Accepting the Unacceptable

    From the parent of a child with epilepsy, this podcast discusses marriage, parenting, and all other areas of life that were touched by epilepsy. 

  • Doing Motherhood Differently

    Doing Motherhood Differently is a podcast created by a mother of two sons, the oldest having ADHD and epilepsy, and how they manage together as a family.


Emotional Support

Websites:

  • Epilepsy Toronto

    A collection of stories shared by people living with epilepsy, their struggles, and also their recoveries and realizations. 

  • Epilepsy Society

    Blogs discussing people’s journeys with epilepsy, whether as a parent, as a student, or simply as a person. 

Podcasts:

  • Seizing Life

    A podcast aiming to provide hope, spread empathy, and offer support and advice on living with epilepsy. 

  • Talk About It!

    A podcast hosted by Greg Grunberg, aiming to bring people with epilepsy together as a community through shared stories. 

  • Epilepsy Voices

    A podcast by the Epilepsy Foundation that welcomes people with epilepsy to discuss their experiences in the hopes of inspiring others to overcome their obstacles. 



References

Better Health. (2023, August 16). Epilepsy - first aid and safety. Better Health Channel. Retrieved September 22, 2024, from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/epilepsy-first-aid-and-safety

Canadian Epilepsy Alliance. (n.d.). Canadian Epilepsy Alliance: Home. Retrieved September 22, 2024, from https://www.canadianepilepsyalliance.org/

Centers for Disease Control and Prevention. (2024, May 15). Managing Epilepsy | Epilepsy. CDC. Retrieved September 22, 2024, from https://www.cdc.gov/epilepsy/living-with/index.html

Cervantes, K. (n.d.). Seizing Life Podcast – CURE Epilepsy Image 1. CURE Epilepsy. Retrieved September 22, 2024, from https://www.cureepilepsy.org/seizing-life/

Child Neurology Foundation. (n.d.). Child Neurology Foundation. Retrieved September 22, 2024, from https://www.childneurologyfoundation.org/

Cleveland Clinic. (2022, November 3). Epilepsy: What It Is, Causes, Symptoms, Diagnosis & Treatment. Cleveland Clinic. Retrieved September 22, 2024, from https://my.clevelandclinic.org/health/diseases/17636-epilepsy

Doing Motherhood Differently. (n.d.). Apple Podcasts. Retrieved September 22, 2024, from https://podcasts.apple.com/us/podcast/doing-motherhood-differently/id1456972231

Epilepsy Action. (n.d.). When someone has a seizure, CARE. Epilepsy Action. Retrieved September 22, 2024, from https://www.epilepsy.org.uk/when-someone-has-a-seizure-care

Epilepsy Action (Director). (2013). Epilepsy and the art of being positive [Film]. Youtube. https://www.youtube.com/watch?v=EIvACF-LXos

Epilepsy Alliance America. (n.d.). Support Groups. Epilepsy Alliance America. Retrieved September 22, 2024, from https://www.epilepsyallianceamerica.org/programs-services/support-groups/

Epilepsy Canada. (n.d.). Epilepsy Canada Epilepsi. Retrieved September 22, 2024, from https://www.epilepsy.ca/

Epilepsy Foundation. (n.d.). Epilepsy Foundation #1 trusted site for epilepsy and seizure news. Retrieved September 22, 2024, from https://www.epilepsy.com/

Epilepsy Foundation. (n.d.). Epilepsy Voices. Apple Podcasts. Retrieved September 22, 2024, from https://podcasts.apple.com/us/podcast/epilepsy-voices/id1486227964

Epilepsy Foundation. (n.d.). Events. Epilepsy Foundation. Retrieved September 22, 2024, from https://www.epilepsy.com/events?f%5B0%5D=event_type%3A33196

Epilepsy Foundation. (n.d.). How Can I Start Managing Seizures? Epilepsy Foundation. Retrieved September 22, 2024, from https://www.epilepsy.com/manage

Epilepsy Ontario. (n.d.). Resources – Epilepsy Ontario. Epilepsy Ontario. Retrieved September 22, 2024, from https://epilepsyontario.org/living-with-epilepsy/resources/

Epilepsy Society. (2020, October 21). Personal stories. Epilepsy Society. Retrieved September 22, 2024, from https://epilepsysociety.org.uk/living-epilepsy/personalstories

Epilepsy Society. (2024, January). Caring for someone with epilepsy. Epilepsy Society. Retrieved September 22, 2024, from https://epilepsysociety.org.uk/about-epilepsy/information-carers/caring-someone-epilepsy

Epilepsy South Central Ontario. (n.d.). Counselling and Support Groups – Epilepsy South Central Ontario. Epilepsy South Central Ontario. Retrieved September 22, 2024, from https://epilepsysco.org/programs-services/counselling-and-support-groups/

Epilepsy Toronto. (n.d.). Epilepsy Toronto. Retrieved September 22, 2024, from https://epilepsytoronto.org/

Epilepsy Toronto. (n.d.). Our Stories. Epilepsy Toronto. Retrieved September 22, 2024, from https://epilepsytoronto.org/about-us/epilepsy-toronto/member-stories-get-inspired-2/

Epilepsy Toronto. (n.d.). Support Groups. Epilepsy Toronto. Retrieved September 22, 2024, from https://epilepsytoronto.org/about-us/programs-and-services/support-groups/

Great Big Story (Director). (2017). Epilepsy Can't Stop this Runner [Film]. Youtube. https://www.youtube.com/watch?v=OScBxa6FpCk

Grunberg, G. (n.d.). Talk About It! — The Podcast | Talk About It! TalkAboutIt.org. Retrieved September 22, 2024, from https://talkaboutit.org/epilepsy/podcast

Henry Ford Health. (2023, January 24). 10 Life Hacks For Living With Epilepsy. Henry Ford Health. Retrieved September 22, 2024, from https://www.henryford.com/blog/2023/01/10-life-hacks-for-living-with-epilepsy

International Bureau for Epilepsy. (n.d.). International Bureau for Epilepsy | The IBE. Retrieved September 22, 2024, from https://www.ibe-epilepsy.org/

John Hopkins Medicine. (n.d.). Medical Management of Epilepsy. Johns Hopkins Medicine. Retrieved September 22, 2024, from https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/medical-management-of-epilepsy

Mayo Clinic. (2023, October 14). Epilepsy - Symptoms and causes. Mayo Clinic. Retrieved September 22, 2024, from https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093

National Institute of Neurological Disorders and Stroke. (2024, July 19). Epilepsy and Seizures | National Institute of Neurological Disorders and Stroke. National Institute of Neurological Disorders and Stroke. Retrieved September 22, 2024, from https://www.ninds.nih.gov/health-information/disorders/epilepsy-and-seizures

The Ontario Caregiver Organization. (n.d.). Supporting Someone With Epilepsy - Ontario Caregiver. Ontario Caregiver Organization. Retrieved September 22, 2024, from https://ontariocaregiver.ca/health/epilepsy/#block_0e560743e7a9d8a0b8e235a6c7946897-0

Sharmin, E. (2017, November 1). Loving Someone With Epilepsy | Blogs | CDC. CDC Blogs. Retrieved September 22, 2024, from https://blogs.cdc.gov/publichealthmatters/2017/11/loving-someone-with-epilepsy/

SickKids. (n.d.). Epilepsy Classroom. SickKids. Retrieved September 22, 2024, from https://www.sickkids.ca/en/learning/patient-family-education/epilepsy-classroom/

Warshawsky, J. (n.d.). Accepting The Unacceptable, Parenting Autism, Epilepsy, Special Needs. Apple Podcasts. Retrieved September 22, 2024, from https://podcasts.apple.com/us/podcast/accepting-the-unacceptable-parenting-autism-epilepsy/id1436220321

 
 
 

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