Meet Jen. This volleyball fanatic has faced some challenges which have kept her off the court in recent years, but she has a goal of playing again one day. She has learned to advocate for herself, and she’s excited that the condition she has is being recognized understood more. We’re so fortunate to have on the Network!

What's your story?  Tell us a little bit about yourself.

This 52-year-old mom, grandma and wife has faced some challenges in life, but she’s determined to make the best of life.  Jen and her husband moved to Wisconsin from Illinois back in 2019.  She shares that in March of 2015, she started having tremors in her hands, feet and face.  The tremors quickly turned to whole-body seizures.  She went to almost all the top hospitals in Illinois looking for an answer.  She was told that she had Stiff Person's Syndrome, Essential Tremors and that she needed to be hypnotized because her "past life" was causing her seizures.  It wasn't until she had over 30 seizures in one day and was hospitalized at Northwestern Hospital that she received a true diagnosis.  She explains that her diagnosis is Functional Neurological Disorder (FND) and is a rare non-epileptic seizure disorder.  She went to Mayo Clinic in Rochester for a second opinion and they confirmed my disorder.  However, most doctors or neurologists didn't take this seriously. It was believed to be caused by trauma and wasn't very well known.  Often times, she would be accused of faking her seizures or that she was just out to get some meds.  

It wasn't until she moved to Wisconsin and became a patient at Monroe Clinic that she was finally taken seriously.  She tells us that her primary doctor and neurologist were familiar with FND and best of all, they believed her!  She decided that her goal was to become the best version of herself.  She started seeing a counselor, went to PT, OMT, Massage Therapy and a chiropractor to help her physical self become stronger.  She still knows seizures, but she’s now aware of what can set them off.  She knows what to do when she feels them coming on.  “Most of all, I don't hide from the public anymore,” she says. 

She and her husband own a wheelchair company in Juda.  They help people with disabilities all day, every day.  She can’t work a regular schedule, but she tries to help out at the office as much as possible.  

 How are you involved with self-determination? Why did you join the SD Network?

Jen has just joined the Self-Determination Network, but she’s excited to see what it’s about. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Some exciting news for Jen is that FND is now more recognized and doctors are taking it seriously.  “I have fought and fought for my own self and didn't take no for an answer,”  she tells us. 

What are some of your hobbies?

Before Jen was diagnosed with FND, her hobbies included playing and coaching volleyball.  She coached grade school and club volleyball.  It was her hope to one day be able to play with her sons.  Unfortunately, physical stress or emotional stress can cause her to have a seizure. “However, it is still my goal to one day return to the sport I love,” she shares. 

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