by Melissa Lyon
Did you know that 25% of people with cerebral palsy also have epilepsy? I am one of those people. Unfortunately, at this time, my epilepsy is not fully controlled with medication, so this disorder affects every aspect of my life. I am hopeful that with greater funding and more research, my epilepsy can be brought under control, allowing me to have a better life. There are approximately 1 in 100 people in Canada who have epilepsy, so I believe that it is important to spread awareness about this disorder.
March 26th is Purple Day, which is a worldwide event created to increase awareness about epilepsy and to support the many people, like myself, who have epilepsy. There are many ways that you can show your support on Purple Day. These include making a donation to your local Epilepsy Association, getting educated about epilepsy, learning about seizure safety, sharing facts about epilepsy on your social media accounts, holding a Purple Day event, or simply wearing purple to show your support.
Epilepsy can affect one’s social, emotional, physical, academic, and mental health. When epilepsy occurs alongside cerebral palsy, the associated effects can be even greater. In my experience there are several things that can be done to lessen the stress associated with having both of these disorders:
Find a neurologist that you trust and can talk to. My best results have been with neurologists who look at the issues happening in my whole body, rather than just thinking about the issues in my brain. I find that if I am having a bad day regarding spasticity caused by my cerebral palsy, often that will be an indication that a seizure may occur. Also, neurologists who have been open to my input have helped me the most.
Get involved in advocacy or educational projects. My involvement with the Cerebral Palsy Association of BC and with the BC Epilepsy Association has helped me to accept my dual-disability, while creating connections and reminding me that I am not alone. Through my work with these associations, I feel like I am making a difference, even if it is just a small step towards educating others and spreading awareness.
Keep a good journal of seizures, seizure triggers, medications, and side effects caused by medications. I haven’t always been the best at this and there have been many times that I wish I had a better record of what medications I have taken and what side effects they have caused. I now make a point of keeping track each day of how my medications are affecting me, what triggers my seizures, and how many seizures I have. For my cerebral palsy, I also keep track of any activities that have caused me to have increased spasticity, so that I can avoid them in the future. There are some good apps, such as My Seizure Diary that can help with tracking, or paper-format journals could also be used.
Create and practice an emergency plan. Not only do I have an emergency plan in place for my epilepsy should seizures occur, my family and I have also considered how my cerebral palsy might affect other emergency situations. For example, we have considered how my lessened mobility and poor fine motor skills may affect escape plans should a fire or earthquake occur. I also always make sure that I don’t leave the house without my medications and a phone.
Surround yourself with people you trust and who are aware of your limitations. I always make a point of sharing with others that I have cerebral palsy and epilepsy and I let them know how this affects me. I feel safer and less stressed knowing that the people around me are prepared should I have issues related to either my epilepsy or cerebral palsy.
Take care of yourself. Getting enough sleep, eating well, having regular physical activity, and drinking enough water all make such a difference to both the severity of my seizures and my level of spasticity due to cerebral palsy. I have learned that I need to always listen to my body and take a break if I am tired, sore, or stressed. By keeping everything in balance, I have the best chance of having a good day.
If we all work together and support those who live with conditions such as epilepsy and cerebral palsy, we will be one step closer to improving the lives of the many Canadians who suffer from these disabilities. Please show your support and don’t forget to wear purple on March 26th!
About the Author:
Melissa Lyon is a disability consultant for the Cerebral Palsy Association of BC. She has a master’s degree in Special Education and has worked hard to get to where she is now. As a person with mild cerebral palsy and epilepsy, Melissa is a strong advocate for people with disabilities. When not working, Melissa enjoys doing karate, where she is working on getting her black belt.