This is Jane with her grand kids today. From the time she was a child, she struggled with grandmal seizures, as a result of her epilepsy. “I recall having seizures all the way up until I was 9 years old. For some reason, once turning 9 years old, the seizures stopped… It wasn’t until I had my first child at the age of 25 when they returned.” During Jane’s upbringing, she was never seen by medical professionals. “My parents had no understanding of Epilepsy.” When she became a young adult and started following up with doctors, she was diagnosed with Cerebral Palsy and Epilepsy. “For several years, I worked in the medical field and nobody knew”, Jane said when discussing the stigma associated with these conditions. “I had an older brother who would always make me run, play football, and be active. I believe he is the reason why I am able to push through in moments of doubt. My older brother is my driving force.”
When she was going through menopause, she had another grandmal seizure. “I was out of work, unable to drive for a year and a half and was put on the generic Keppra (Levetiracetam) which resulted in me having breakthrough seizures. Once I tried the brand name Keppra, it cleared all my temporal lobe seizures. Since 2015, I have been taking Ativan which clears my temporal lobe seizures.” In talking about side effects, she mentions “I have days where I don’t feel like well but it never gets to a point to where I have a breakthrough seizure. Whenever I do not feel good, I take it easy on those days – I don’t drive and just take it slow.” There was a point where she stopped taking her medication in 2015 which immediately triggered a grandmal seizure. “From that moment, I realized I needed to take these medications because they were indeed helping.” She now carries some medication in her car, a spare in her pocket, and carries her medical records on her phone. “I would rather die than to have a seizure” Jane mentioned when explaining how she stays away from triggers by being active, taking her medication regularly and eating nourishing meals.”
“I found Epilepsy Alliance Florida early 2020 through research because the medication I am taking had a copay of $600.00 a month. UCB had taken me off their program after being late with the recertification process.” In applying to Epilepsy Alliance Florida, she was assigned to Case Manager Sol where she was enrolled in a copay assistance Program The Assistance Fund (TAF) and her copays were covered 100% through the program. At the end of 2020, TAF notified all of their clients that the Epilepsy fund had been exhausted. Jane still continues to work closely with her Case Manager to find other resources. “Epilepsy Alliance Florida has helped me have affordable access to my medication, have helped me by having many programs available, having Sol checking in on me, answering all of my questions… I do not feel alone. There is a sense of camaraderie.
Jane is currently on the waitlist for the TAF copay assistance fund and is hoping to get off the TAF cares waitlist soon. “Thinking about doing something you are not capable of doing is enough to give you the push you need. Goal setting is important.” Today, Jane is recovering from shoulder surgery. She mentions “You would think that my Epilepsy and Cerebral Palsy would put me on the disabled list but it was actually a recent fall where I hurt my hip and shoulder that resulted in me being disabled… And now, I am fighting to get off the list and start working! You see? my older brother has never left my side.”
In her free time, Jane enjoys crafting, quilting, shopping for antiques, taking walks and being in the outdoors, plants, gardening, and spending time with her grand kids. “I also loved my job which is what I want to go back to… reading cardiology heart rhythm.”