This Mother’s Day, I reached out to a mom with epilepsy who inspires me. I hoped she would have time in her busy life for a brief interview and of course, she made time. Brandy is a delightful woman who I am lucky to know simply by way of Living Well With Epilepsy. We have never met yet, I consider her a friend. Below you will hear a bit of her story and what she has going on. I hope you will take the opportunity to get to know her and her work as I have.
Living Well With Epilepsy: Brandy, would you give everyone a little background on you and your epilepsy?
Brandy Parker: My name is Brandy Parker and I am a woman living with epilepsy. I am a mother, patient advocate, and Executive Director/Founder of My Epilepsy Story. I live in Nashville,TN with my three beautiful children. At the age of 15 I had a tonic-clonic seizure. I was prescribed Depakote and my seizures were stopped. I had some typical side effects from the medication such as hair loss, weight gain, and being tired. Over the years I just learned to cope with the side effects. I had two other seizures over the years from not taking my medication (which was dumb). My seizures were well controlled while taking the Depakote. About 6 1/2 years ago I switched to Keppra to be on a safer medication for being a woman of child bearing years. I have been seizure-free for over 19 years.
LWWE: What is it like to be a mom with epilepsy?
BP: Being a mom with epilepsy is just like being a mother without epilepsy. I feel the same emotions as every other mother out there. I am driven to be the best mom that I can be. However, I do worry that I will have a seizure that will cause me to die and for my children to be without a mother. I educate my children on epilepsy so they can be prepared if I were to have a seizure.
LWWE: What made you start myepilepsystory.org?
BP: I started My Epilepsy Story to put a face to epilepsy. I am one of the lucky 70% of people with epilepsy that responds to epilepsy treatment. Yet, my life dramatically changed almost 9 years ago after giving birth to my first child. This is when epilepsy began affecting my life on a daily basis. Research now shows that the seizure medication that I was prescribed while pregnant with my first child, can cause your child to have physical and/or cognitive abnormalities. My son Samuel, was diagnosed with being on the autism spectrum. The side effects from MY seizure medication have now been passed to my son. I am now in the group of people with epilepsy that has epilepsy affecting their life on a DAILY basis, even though I am not having seizures. This has made me step up and put my story as another face to epilepsy. My Epilepsy Story is an organization that focuses on women and children living with epilepsy.
LWWE: Can you talk about your vision for My Epilepsy Story and how it can impact women living with epilepsy?
BP: My vision for My Epilepsy Story in regards to women living with epilepsy is to educate, advocate, and do research in the area of woman’s health. We also want to have a National Pregnancy Registry that is federally funded for women that have epilepsy and are pregnant. This will help us to make sure that we are addressing the needs of pregnant women living with epilepsy. We also want to make sure that we are educating women about the best medications that are out there for them. My Epilepsy Story wants to help women with epilepsy be their own advocate in regards to their health.
Women with epilepsy will have different health needs as they age and we want to make sure they are informed so they can discuss these needs with their doctors. My long term vision is to address these needs globally so that women across the world with epilepsy are getting the best healthcare.
One way women right now can participate in research is by going to our website www.MyEpilepsyStory.org and click on the link for the MONEAD project. This is a research project that will follow women with epilepsy throughout their pregnancy as well as their unborn children. This research is vital to making sure we get the best medications for women living with epilepsy and their children. I am going to be participating in this research project as a women with epilepsy that is not pregnant. Please join with me and participate!
LWWE: What would be a perfect Mother’s Day for you?
BP: The perfect mother’s day for me is to spend the day with my family. I love quiet, but I also enjoy the giggles and laughs from my three beautiful children. I would also love to read the newspaper, read a magazine, or watch a news segment that highlights women with epilepsy and the importance of this issue. Thank you so much for sharing our story on this Mother’s Day. I am proud to be the mother to three beautiful children. I am also glad that mine and Samuel’s story is changing things in this world. He is a world changer! Make sure you go to our website and share your “My Epilepsy Story”!
Thank you Brandy, for making time to talk to Living Well With Epilepsy! Have a wonderful Mother’s Day!