The Epilepsy Foundation of Minnesota’s (EFMN) promise is that nobody journeys through epilepsy alone. Marcia Kautz’s journey shows just how important this statement is. Marcia and her husband Dean have been journeying together since her first seizure in 1988, and the partnerships they’ve built along the way have been life-changing.
Dean was by Marcia’s side during that first seizure and continued to be there as they visited doctors, tried different medications, and experienced breakthrough seizures. They were seeking a partnership with a doctor, one who would work with Marcia towards the life she wanted.
But instead, they kept getting told that Marcia would “just have to live with” her seizures and the side effects of her medication. After years of frustration, they learned about EFMN and picked up the phone to make a call.
“One of the most important days ever was when we met Nikki,” says Marcia.
Nikki Baker, then EFMN’s Program Director, became the newest partner in their epilepsy journey. She shared the knowledge that eventually led to the next milestone in Marcia’s life, finding an epileptologist who cared and listened to her, one who wanted to be a partner in her journey.
“We finally found someone who cared about the side effects of medication and wasn’t only focused on my seizure activity. It’s been great having someone who listens and cares about my quality of life,” says Marcia.
This moment, which began by calling Nikki and asking for help, sparked a complete overhaul of Marcia’s epilepsy journey. She found medication that achieved the right balance of seizure activity and side effects, but when the out-of-pocket cost became too expensive, it was another call to Nikki that led to the solution.
“Nikki suggested that we review the manufacturer’s website to determine if Marcia qualified for financial assistance, which was initially denied due to Marcia’s enrollment in Medicare. I contacted the manufacturer’s customer service line directly. Now, they are covering 100% of the cost,” says Dean.
Finding EFMN, and making the initial phone call to Nikki, created a life-changing partnership. It also connected Marcia and Dean to the epilepsy community. One they previously knew existed but didn’t feel part of.
“You often feel like you’re the only one even though you know that’s not the case. Going to our first event [Epilepsy Advocacy Day at the Capitol] really opened our eyes to how large the epilepsy community is,” says Marcia. “It showed there is strength in numbers, and being it was different than just knowing it.”
Marcia and Dean continue building new partnerships as they journey through epilepsy. They continue to journey together, relying on one another to be the partner they need at that moment.
“Even though we’ve come so far, it’s upsetting to have a seizure and feel like you’ve gone backwards. It’s helpful to have a partner like Dean always there for me when I have those hard moments,” says Marcia.
Their journey is not perfect, and they don’t have expectations that it ever will be. But they know they’ll get through it together. “One of Marcia’s greatest strengths is her ability to pick herself up when things are tough,” says Dean.