IG Live with Jamie Wissinger

Jamie Wissinger will take a little time away to chat with us today on Instagram Live. Jamie is a blogger, epilepsy advocate, virtual assistant, mom to three beautiful children and now has added podcaster to her schedule!

Jamie has generously participated in the Epilepsy Blog Relay in the past. I’m looking forward to having her catch us up on her latest project, a new podcast called: 1 in 26.

1 in 26 is all about celebrating who we are. Jamie does not believe this disability should define us.

1 in 26

This podcast premiered in July 2019, and has shared the stories of 8+ epilepsy warriors. Episodes are released every Friday, with season 2 happening so soon. You can find it on Apple, Spotify, or Google Podcasts.

IG Live

So, whether you are living with epilepsy, a researcher, clinician, or just stuck at home and curious about podcasts, I hope you will join my chat with Jamie Wissinger on 3/30 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT.

You can find the chat at @livingwellwithepilepsy. Don’t miss it!

Meet our next IG Live guest: Monica Weldon

I am so happy Monica Weldon, CEO and Founder of Bridge the Gap: Syngap Education and Research Foundation, has time in her busy schedule to chat with the Living Well With Epilepsy community!

If you have not met Monica she is fantastic. This woman is a force to be reckoned with–she is a mom of a child with an ultra rare disease who has successfully started a foundation and raised enough funds (and momentum) to support research in a disease state that has barely a handful of cases. In addition, she is smart, fun and kind and generally a delight to be around!

These days Monica and her team have been busy.  I asked her to send over a quick update of what their organization has been up to, but first let me give you some background on SYNGAP1.

What is SYNGAP1

The team at Bridge the Gap: Syngap Education and Research Foundation have put together this video featuring researchers, clinicians and parents.

The team at Bridge the Gap: Syngap Education and Research Foundation have shared the following projects with us. Check them out when you have a minute:

So, whether you are a family affected by SYNGAP1, (or other special needs parent), a researcher, clinician, a curious person with epilepsy or just a fellow advocate, I hope you will join my chat with Monica Weldon on 3/27 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT.

You can find the chat at @livingwellwithepilepsy. Don’t miss it!

Join us on Instagram Live

Now that everyone is hunkered down at home we’re trying out connecting via Instagram Live. (You are at home, right? If not please go home.)

When?

Every weekday at 12pm PT / 3pm ET / 8pm GMT you will find our founder, Jessica Smith on Instagram  @livingwellwithepilepsy.

Who?

We’ve pulled together a pretty great lineup and we’re looking forward to chatting with these amazing women. Feel free to check them out before you join their live chat.

Don’t Miss It!

Here’s the schedule (with more to come):

Thursday 4/9
Nathan Duncombe – @naththedad

Friday 4/10
Jamie Wissinger – @jamiewissinger
jamiewissinger.com

Monday 4/13 (Special Time: 2pm ET)
Rich Tsuma – @rtsuma
Kenya

Tuesday 4/14
Sharon – @be.brave.brains

Wednesday 4/15
Craig Chambliss – Neurelis

Thursday 4/16
Tori Robinson – @torierobinson10

Friday 4/17
Jewel Davis – @lifesajewel

Recent Chats

Watch a few of our recent chats:

Join us any time. And if you are interested in suggesting a topic or guest contact us via DM at @livingwellwithepilepsy or via email at jessica@livingwellwithepilepsy.com.

Stay safe.
-Jessica

Our recent chats and guests can be found below:

Thursday 3/26
Hayley Jacobs – @hayley101
fitsandstarts.co.uk

Friday 3/27
Monica Weldon – @syngap_raretigermom
bridgesyngap.org

Monday 3/30
Jamie Wissinger – @jamiewissinger
jamiewissinger.com

Tuesday 3/31
Fran Turauskis – @frantictwalks
seizeyouradventure.com

Wednesday 4/1
Whitney Petit – @changingfocus18
cf-epilepsy.com

Thursday 4/2
Emily Lawrence – @mrselawrence
livingwellwithepilepsy.com

Friday 4/3
Monica Weldon – @syngap_raretigermom
bridgesyngap.org

Monday 4/6
Alison Kukla – @alisonkukla
epilepsy.com

Tuesday 4/7
Torie Robinson – @torierobinson10

Wednesday 4/8
Wayne Drash – @thedrashman

Balancing uncontrolled epilepsy and exercise

Sarah’s Story

I love running. I just love the feeling when you get out there and can feel the sensation of those feet on the ground. It is a wonderful feeling. I have loved running since I started at the age of 13. However, my ongoing ability to run whenever I wanted and to the intensity I desire changed when I was diagnosed with epilepsy at the age of 19. I have focal seizures with impaired awareness and one common trigger for me is intense exercise. This has caused an ongoing frustration for me, but I never let it stop me from exercising. I can still run, just need to do it at a moderate pace. I can cycle on a stationary bike to a maximum intensity and not have a seizure, but for some reason running often can trigger my seizures.

Becoming a mother

I am now a mother to a 16 month old wonderful little boy. Isaac is happy and playful and my pregnancy was great. No issues at all during and my seizures reduced to about 6-8 a month. Since becoming a new mom, my exercise has been occasional runs or pilates, but not much. I go for daily walks of 3-5 miles, but that still doesn’t feel like much to me. I have gained weight as a result of my new medication making me feel hungry all the time and also just having a bit more of a belly than I did before I was pregnant! I want to get back into pre-pregnancy shape again. But, how do I do this when I am always tired, work full-time, and don’t want to risk a seizure when I am home alone with Isaac? This has been an ongoing struggle over the last year. However, with my husband’s support, I have started to run again. A couple of days a week of 3-4 miles and it feels great. I make sure I don’t give in to my urge of going a bit more on one day, just so I can feel more confident I won’t have a seizure. I have also incorporated legs, arms, and ab workouts into my weekly routine.

Finding a routine

The move to overcome my fears and constant worries is a good thing. I love feeling a little bit sore. Feels wonderful! I love the fact that I know I am helping my body. I also know that exercise is beneficial to controlling one’s epilepsy and I want to make sure I don’t let any worries prevent me from aiding a decrease in seizures. The way I’ve been able to do this is to exercise after Isaac has gone to bed. I’m usually very hungry by about 7pm, so I make sure to eat a banana and other quick food before I start the bedtime bath and read a story routine. My husband has usually gotten back from work around that time, and so I pre-plan by getting into my running gear before bedtime and then once Isaac is asleep, I run! It is a hard thing to balance all of these things in our lives, but it is wonderful to still feel those feet on the ground.

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