In Honor of The Twins Home Opener, Update on Jolene An Epilepsy Warrior

Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a seteances out ouf order, or repeat them, spelling.

As I have talked about how my own

Seizures have changed over there years.

Read the Latest on Jolene, a fellow Epilepsy Warrior & Advocate.

I met Jolene via the epilepsy online community.

We immediately connected being both a wife and mom who have epilepsy. It was great to have someone to chat with who understood exactly what I was going through. Most the people I meet are parents of kids with epilepsy or aren't married with children. We talk about our family often and wish we both could do more for them. It was also during a tweet we realized we both followed the Twins and Vikings. That in itself could cause a seizure watching those games LOL. So then we chatted about how our family's follow them and was very ironic to be those fans:) We also got to share family pics at those events from the past. She was controlled at the time we met but unfortunately just recently had breakthrough grand-mal seizures after 3 months seizure free. I ask that you say a prayer or send her strength whichever you believe so she can become seizure controlled again. Her husband is also deployed at this time and can only communicate via email or messenger and he cannot share anything with her. An extra stressor living with epilepsy, and I thank him for his continued service. As well as her and her family because just like epilepsy is a family affair, so is having a family member serving.

Jolene's Epilepsy current updated journey as of April 3rd, 2025.

I thought it was the perfect timing to update her journey, since we both are Twin's fans and it kicks off their home opener today. When you have epilepsy, having others you can connect with makes the bond that you can keep through a chornic epilepsy is special.

I treauysre our friendship, even if it is via online and phone calls. I hope one day we can meet in person. Thank you again for your husband's continued service, and as you being his wife is part of that service to us as well.

In Jolene's own words:

Awe well the struggle i am dealing with is finding a new neurologist. I have been off meds for 4 months. I've gotten referrals but they can't seem to find the authorization. It's been a struggle but I'm doing okay. I've added going to the gym every day to help lose weight and be healthy. That has made a major impact on my seizures and my mental health.

I ran out of Lamictal and I have no one to fill it. My seizures have been okay. I've had 2 or 3 since being off my meds for 4 months. I don't know why but it seems I was having more seizures on the meds vs now not being on Lamictal. My husband's deployment just got extended, so that is now an added stressor.

Go follow Jolene on Twitter @jolene588

to reach out to her personally to learn more.

Jolene's Epilepsy back on November 10th, 2023 Blog post

Meet Jolene and her journey living with epilepsy in her words.

When and how were you diagnosed with epilepsy? 2015 with an EEG   

Did it take a long time?  It actually did not take a long time . I was lucky and it showed up on my first EEG

What age? Oh lord I don't remember how old I was in 2015 lol

What type of seizures do you have? I have gran mal seizures  

What meds have you tried or any other type of treatments that have worked and not worked?  I have been on many different meds that didn't work and now I am on Lamictal and topiramate .

How long have you lived with epilepsy? 8 years

How has it affected yourself and your family?  It drastically changed my life . At first I was scared to do anything. My biggest fear was having a seizure in public and when I did I was so embarrassed.  My daughter is very good with my seizures.  I had alot of help from the epilepsy foundation of Minnesota.  I also do not work.

Do you have other conditions that are due to your epilepsy or meds? I have other medical conditions but they are not due to epilepsy

If you are controlled now, for how long? Was 3 months, but had breakthrough, and ended up in hospital but they couldn't do anything.

Is there anything else you want to share for those living with or caring for someone with epilepsy?  Please don't give up and always know there is someone that is there for you . Reach out!  

What are you doing to celebrate National epilepsy awareness month? Reaching out to the epilepsy foundation to see if they need any help with donations . I know it's not much but it's all I can do. I am also helping spread awareness on my social media