PACES

October 2022, I was informed of a program coming to the Maritimes for the first time. Desperate for resources and supports, I e-mailed my expression of interest immediately. I was informed what the program included, how it would operate and then scheduled a screening call for November. The day of the screening call, I was asked a series of questions. A cognitive assessment tool I have used with patients in the past. Being on the other side, being asked these questions as the patient, not my cup of tea. 

January 2023, PACES began; a free 8 week, online/virtual program for adults living with epilepsy. I was given a binder with informational handouts, and activities we would do as a group. Each week a new module would be presented. 

The different modules were: epilepsy and medical issues, managing stress and the blues, compensating for cognitive challenges, getting the most out of community living, managing epilepsy care, effective communication about epilepsy and health/wellbeing. (I will link the page if you or anyone you know may benefit from this program) 

Since my diagnosis, I tried to educated myself regarding epilepsy. My mood and energy so low, it was challenging to find the motivation to keep searching for credible sources. The information the coordinator provided during our phone calls, and e-mail interactions were the most informative/helpful; she was the one who informed me about PACES. Starting the program with an open mind, I was ready to learn, and continue working towards acceptance. 

The program was once a week, virtually, for an hour. I remember being nervous the first night, not knowing what to expect. I had my binder ready, my laptop all set up, cozy on the couch waiting to start. Then one by one, little squares popped up on my laptop with other peoples faces. The faces that would share their stories, listen to my story, provide support, and help me feel less alone. 

That very first session, we learned about different types of seizures. Group members began to share which types they experience. Being in denial for some time, “these couldn’t be seizures”Well, there it was. Learning about focal impaired unaware seizures. My experience to a tee. 

Despite being timid in the beginning, through past experiences I have learned, as one person speaks up, it encourages others to as well. As the program went on, I began feeling more comfortable speaking up and sharing my thoughts and experiences. Having this community of other adults living with epilepsy, proved time and time again, this was my road towards acceptance.

Not long before PACES began, I was reading Atomic Habits. Began implementing the 1% rule. “The idea is to get 1% better everyday at something you’re working on, and eventually it accumulates to make you way better at it in the long run”-Atomic Habits. Two weeks before PACES began is when I started habit tracking/stacking. I share this because that first session we were asked to think of a goal we wanted to work towards. I shared how I didn’t really have a specific goal, rather I was working on this 1% better everyday to help my overall wellbeing in the long run. This was my goal; to feel better, accept my diagnosis, to stop exiting and start living!

My diagnosis still felt fresh. Still trying to find a medication balance, not yet back to work, unable to drive, still having seizures. The most beneficial aspect of this program for myself, was the other adults sharing their stories, experiences, current living situations, etc. To hear other adults living a ‘normal’ life with epilepsy, gave more ignition to that little spark of hope I was holding on to. 

One particular person who shared their goal really stood out for me. Their goal was to practice/learn a new language using the Duolingo app.

There is evidence to support learning a new language has neurological health benefits, such as helping grey matter grow. New developments occur in the brain when learning a new language.

There is also research to support learning a new language helps reduce cognitive decline, mental aging, improves memory and boosts creativity. Just like a muscle, the more you use your brain, the stronger it gets.

Many moons ago, I spoke french. Knowing the benefits of practicing a second language resonated with me. Now I was curious how much would come back if I started practicing again! That is just what I did. That evening I downloaded the Duolingo app, and added language practice time to my habit tracker. If you are wanting to learn a new language I highly recommend the Duolingo app. User friendly, and you earn rewards! Every time I earned reward, I wanted to keep practicing that much more!

Finding programs, resources, supports (online or in person) can be overwhelming, and intimidating. It’s not easy to put yourself out there, be vulnerable, share your stories, or even listen to other peoples struggles. What is even harder than that in my opinion? Trying to go through it alone, feeling like you’re alone, feeling like others around you ‘don’t get it’. 

Maybe you don’t share anything, but it’s helpful to be surrounded by others who have similar experiences. Maybe the first few interactions aren’t helpful, but then there is one that really resonates with you and makes it worth it. The point I’m trying to make, it’s not always easy to have patience. It doesn’t always seem likes it eventually going to get better. Regardless, you deserve to get through the hard times with resources and supports, to overcome the hardships, to come out on top. To not let a diagnosis, or negative life experiences define you. 

Thanks to PACES, I became comfortable talking about my epilepsy. Saying out loud I am living with it. Knowing what I was experiencing at that time (defeat, low mood, low energy, anger, etc) would not last forever. It lead me to re-learning french, helped keep me accountable for my 1% better day by day/habit tracking. Helped me get another step closer to acceptance. 

Until next time…

Each and everyday, I felt I was getting closer and closer to accepting this life-long diagnosis, thanks to no longer feeling completely isolated. It was incredibly beneficial to connect with other adults living with epilepsy. Reading more, learning each and every day, committing to being 1% better day by day. Slowly but surely, starting to feel a shift in the right direction; a shift towards acceptance. 

Find what works for you so you don’t have to be alone. Friends, family, a trusted co-worker, a licensed professional, online or in-person support groups. I cannot say it loud enough, YOU DO NOT HAVE TO FACE WHAT YOU ARE GOING THRUGH ALONE! 

One day at a time, one step at a time. Keep fighting for yourself; it will be worth it in the long run.

Link for PACES program

https://epilepsymaritimes.org/paces-in-epilepsy/