Epilepsy Blog Relay: A reminder that we need to stay strong

This post is part of the Epilepsy Blog Relay™. Follow along all month!

After 40 years of living with epilepsy Peter reminds us that we need to stay strong and not be afraid to tell others about our disease.

Peter’s Story

Hello my name is Peter and I’ve had epilepsy since the age of 14 years old. I am now 54 years old I’ve been living with epilepsy practically, my whole life.

I want to encourage all the people who have epilepsy be strong don’t be afraid to tell others that you have epilepsy. I’ve worked in construction and as a butcher, and now I’m working as a cook.

We who have epilepsy are just as normal as the next person. To all who have epilepsy: remember you are strong. Thank you for listening to me.


Related: Participate in one of our surveys


NEXT UP: Be sure to check out the next post at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Epilepsy Blog Relay: Tips for Your Next Epilepsy Monitoring Unit (EMU) Stay

This post is part of the Epilepsy Blog Relay™. Follow along all month!

I kicked off 2019 with an 8-day stay in the University of Virginia’s epilepsy monitoring unit (EMU) in hopes of capturing a few seizures on a video EEG. The EMU stay is part of the evaluation I’m going through to see if I’m an epilepsy surgical candidate.

When the EMU stay was first discussed at my doctor’s appointment, I wondered how I could fit it into my schedule with work, etc. Also, the biggest question I had when it was scheduled: How will I keep myself busy for 8 days in the hospital?

No seriously, how will I keep myself busy for 8 days in the hospital?

I talked with some friends who had done EMU stays and they offered great advice.

  • Bring a good blanket and your own pillows.
  • Don’t forget some comfy slippers.
  • Find shows to binge watch.
  • Only pack button down shirts since the EEG leads get in the way.

Their tips were great and helped make the stay feel as homey as possible for my fiancé and me. During the stay, I kept a journal to keep track of my tips, here are some:

  • Make a snack drawer with your favorites treats.
  • A 1000-piece puzzle, books, and a few games kept us busy.
  • If you’re there for awhile, ask if the hospital has laundry services.
  • Keep a journal, since it may be tough to remember discussions with the doctors.
  • If you don’t have a rescue medication, make sure to have the doctor prescribe one before you leave.

The hardest parts

There were two hard parts for me. The first was when my fall risk increased once I was off my medicines, since I started as a level 1, which meant I could move around on my own. Once my meds were off, I was primarily stuck in bed and needed my fiancé’s help with everything.

The second was how I felt off my medicines. I didn’t know what to expect, since I’ve been on meds in some form since 2006. As I tapered of them, I experienced side effects and when I was complete off them my brain felt like mush, I didn’t feel like myself. After I was back on my medicines, I was super lethargic for about a week. Be patient with yourself as it does take some time to bounce back and feel like yourself again.

The best part!

One last piece of advice, ask the nurses if the hospital has volunteer dogs that can come to the room. I know the surprise visit I had from Wali, a golden retriever and one of UVA’s volunteer dogs, really lifted my spirits. And don’t worry, the glue will come out of your hair, it just takes a few washes!


NEXT UP: Be sure to check out the next post by Abby at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Epilepsy Blog Relay: Don’t let fear stop you from sharing your epilepsy story.

This post is part of the Epilepsy Blog Relay™. Follow along all month!

I’m Heidi and I have found that the world has so much to learn about epilepsy, so I started The Epilepsy Education and Support page on facebook to help spread epilepsy awareness. It’s important to educate and support each other when we or someone we know faces epilepsy. My post for the June relay is about sharing your story with others no matter how afraid you are. Sharing it will help fight against the stigma.

Raising Awareness

Epilepsy Education and Support was created to provide information and support for people with Epilepsy, caregivers and those who are interested in Epilepsy all over the world.

Read Heidi's Story

NEXT UP: Be sure to check out the next post by Alison at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Epilepsy Blog Relay: Diagnosed with Epilepsy as an Adult

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Julian’s Story

There I was – in my dream job at the State Department of Education. I was 56 years old and enjoying the travel around the state, collaborating with various school districts, conducting training sessions, and moving freely between counties. I’ve always loved driving!

I had to take medical leave for shoulder surgery. Driving home with my four-year-old grandson in the back seat, I took a bite of a just purchased sandwich. About four minutes later I asked, “Where were we going?” He said “To your house Yaya.” I had missed my turn onto my street by a mile!

A month later, after returning to work, I again had an instance after stopping for lunch then getting back in the car to complete my travel. My life as I knew it would never be the same.


Related: Diagnosed later in life


Perceptions about epilepsy

I thought epilepsy was something that manifested itself early in life. I thought it was something that ran in families. Here I am three years later still waiting to go six months without an incident. I miss the freedom of driving, I miss the smiling faces at school districts around the state, but I am thankful to still be here. I look forward to being six months seizure-free. Maybe I can drive long distances again!!! I am learning to live with my new normal.

Share Your Story

NEXT UP: Be sure to check out the next post by Heidi at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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