What preparations do you make when travelling with epilepsy?

@santosha I realize everyone is different, but for me, sticking to my circadian cycle was the priority. While in the air, I stayed with my core 12-hour medication plan; once we landed in London, I immediately adjusted to local time. In other words, I just repeated my usual 'before bed' and 'wake up' routine as soon as I arrived. I remember one neurologist telling me that our bodies can handle flexibility during travel, and overall, the focus should be on cyclical regularity, which is far more important than precise times of day. I'd love to hear if anyone else has another plan that works for them.

@dannoyes Thanks for sharing your fears, fun, and how faithful attention to your circumstances opened opportunities for new experiences, Dan. Many helpful details in your comments.

Appropriate self-monitoring in crowds, family gatherings, and public spaces alike helps us stay regulated, for sure. I honor your frank discussion of the emotional side effects when others have to experience our seizures from their point of view. It’s hard on everyone.

Thanks for sharing photos:)! It’s exciting to learn from your journey, especially that when we give ourselves time to heal and permission to grow, change becomes an ally. Where to next?

What I didn't mention in my previous comment, @marianne72, traveling to France was far more difficult than traveling to London. I felt cognitively that my brain faced an added challenge in dealing with the language difference. Cognitively, I hadn't expected this challenge.

One small thing that helped me was I had a notebook where I reminded me things to observe. What were the most prominent colors I saw? What shades of those colors did I see? Were people smiling? Did they make eye contact? How could I engage with those around me (a simple nod was often enough)? Were there any unique plants, trees, or wildlife I saw? This helped me get past the hustle and bustle. I also went out of my way to engage with Uber drivers. Sometimes, even a grunt and raising of the hand in frustration at another driver was enough to help build a common bridge. Lastly, taking to engage with others helped me get out of my own head. One outcome was I made a friend from Uganda that I still chat with today.

@dannoyes

Thank you so much for sharing! I hadn’t thought of the time zone difference issue before, and I will certainly take note. I didn’t have to deal with this issue during my last trip in March.

Now, time for the next milestone. Yup I took a pic of the plane for my trip home instead of the tourist attractions.

Cheers,
Louis

I am so glad you shared this. What I didn't include in my uploaded photos were the little photos I took along the way to remind me of the small gains I made that, together, led to the bigger "conquest" of such a big trip. I even took a photo of the Buckee's we stopped at in Georgia. In practice, I used a free app called "Polarsteps" to create a journal-style entry, along with the Apple Journal tool. I wanted to remind myself that the impossible can become possible.

@dannoyes

Hi Dan,

Is Buckee a gas station? Sorry, the last time I stepped foot on American soil was when Clinton was in the White House. Thus, I’m sure many things had changed.

I will definitely check out Polarsteps & Apple Journal.

Cheers,
Louis

Buckees is a destination unto itself. It is a gas station, restaurant, gift shop, and grocery store. You have to see it to believe it. It is also a great test for my service dog, Gabe, because there is so much activity he has to ignore all of those distractions, even more to focus just on me and my epilepsy.

@dannoyes

I believe quite a lot had changed and US now looks/feels totally different. Flights between the 2 countries are even direct now and United has daily flights between here and San Francisco.

Oh, by the way, how did you bring Gabe overseas? Was the application paperwork cumbersome? And I believed there must be plenty of places he couldn’t enter? Did you leave him outside? Sorry. I am very curious. I can imagine how challenging the language part must be. The only French words I know are “bonjour “ & “oui” & “non “ & “merci “. That’s all.

Cheers,
Louis

@dannoyes
Good Morning Dan!
Thank you for sharing that. You're absolutely right that everyone is different, something my doctor truly respects and follows.
The last time I traveled to Europe — a 4-hour time difference ahead — my doctor also recommended sticking to local time at my destination to maintain my circadian cycle, just like you did. That was, however, before my epilepsy journey became a little more complex.
Now it's time to dream about my next milestone — visiting friends and family in Europe again!
Chris

@santosha What I found incredibly difficult was coming back home. While I had a few impactful events on my trip, I had several significant ones during my first week back. It was interesting to see how my body took time to adjust. The trip reminded me that life doesn't have to pass me by and that I could intentionally spread my wings and fly (no pun intended).