This post is part of the June 2019 Epilepsy Blog Relay™. Follow along all month!
Dedicated to my friend Chris. “No, Dude.”
Epilepsy can change many parts of the lives of those who live with it every day. We lose our independence from driving a vehicle, taking a bath, and traveling. Planning a trip locally takes less energy and effort but traveling distances can be a daunting task. So, what happens when someone wants to travel farther lengths or internationally? Let’s take a look at a few areas to think about when an epileptic need to travel for a long length of time or distance. Also, an interview with the parent of an autistic teenager with epilepsy who is planning a trip to Italy, desperately seeking answers.
Some Triggers: Stress, time changes, anxiety, cabin pressure changes, sleep disturbances.
Medications: Take enough in a travel container for the entire trip plus a couple of days for emergencies.
Time Zone Changes: Gradually adjust to the new time change. During the plane ride, take medications as usual but once at destination, adjust medications to the new time zone as best as possible. (Epilepsy Society, 2019)
Public Transportation: Try to plan as most as possible with any company or public transport. This includes reserving seats, pre-boarding, meal accommodations, and much more! Agony Autie (Sara Harvey) had an issue while she was traveling on the public train system in the UK. She is an autistic with Ehler’s Danlos Syndrome (EDS). She must travel with her cane and electric wheelchair due to the physical disabilities from the EDS. The train has seats reserved for those with disabilities and she had reserved them while traveling with her family (Hockaday, 2019).
Airline Travel: Call ahead of time and speak to someone from the specific airline. Let them know you have a child with epilepsy and other disabilities or that you are the one with disabilities. Ask for accommodations! Traveling with an animal, special seating, boarding first, special foods, etc. Airlines are generally nice about the accommodations if planned ahead of time. I have only run into one airline that treated me with disrespect as an autistic with epilepsy. Always carry a seizure response plan on hand along with wearing medical alert jewelry. Print a second copy of the emergency plan to give airline staff (Schachter and Shafer, 2007).
VNS: Bring info about the type of Vagus Nerve Stimulation (VNS) with the response plan. Also, pack two magnets; one for the carry on and one to give a travel companion in case of emergency. The magnet does not go in purses or anywhere it can ruin credit cards or other electronics. It would be helpful to carry medical tape in case you need to place a piece on the magnet over generator. Check the geographical area you will be traveling to see what hospitals and specialists are in the area (Schachter and Shafer, 2007). International travel can pose an issue with insurance and payment. Again, check the medical community about insurance status (socialist healthcare) or if traveler’s insurance is needed for the trip.
Some autistics with epilepsy are speaking and some are non-speaking. I found a guidebook that can help translate important phrases, such as “Where is the pharmacy,” for who need to travel around the area. These can be programmed into AAC devices, software, learned in sign language, or simply print the pages so you can show a taxi driver what you are looking for in the area. https://www.ibe-epilepsy.org/wp-content/uploads/2017/08/IBE-TravelHandbook-2017.pdf Further accommodations for language might be needing an American Sign Language (ASL) interpreter or carrying a device with text to speech.
I wanted to reach out to a parent who was in the process of trying to plan an international vacation. This mom, Stephanie from Holbrook, NY, is planning a trip to Italy. Her oldest an autistic eighteen-year-old with epilepsy that needs a full-time assistant for daily tasks. I wanted to know what her main concerns were and what we could do to help:
Interview with Chris’s mom, Stephanie from Long Island, NY, via email:
- Where are you planning on traveling? Italy
- Have you traveled outside of the US before? Yes, off the continental US, the Bahamas, and Hawaii
- Have you traveled within the US? Yes
- What is your biggest worry when traveling with Chris? (Or two) A medical emergency or a legal issue
- Have any governing bodies or agencies been helpful? No but we haven’t reached out to any in regards to travel yet.
- Are there any restrictions with passports and disabilities? As of now no. I know the current administration is trying to change the policies and requirements. European countries are looming to require visas for leisure travel.
- Do you plan to travel with a service animal? No
- What can professionals or the government do to help ease your mind for travel? Anything we can do at Living Well With Epilepsy? Connect us with people that could give advice about Italy.
Stephanie, I am going to do my best leaving some information here regarding travel in general with tips. The guidebook should with phrases and contact information about the country you are traveling to for vacation (or business). Fill out the application now for a passport before the rules change in the future. The cost could go up or other countries might change their requirements as well.
I would also like to see a better navigation system on the government websites for traveling with disabilities. My job is a freelance writer and blogger. I work at researching products and ideas online before posting on my website. If someone who was not savvy in doing research, especially on a government ran issue, it would be very challenging to find a step by step helpful guide about how to gain access to resources. We need a website or link to resources that can help guide someone with a step by step process of traveling with disabilities. It would promote tourism in other countries, open up more government jobs, and increase spending with the increase in travel expenses.
Hockaday, J. (2019). Autistic woman ‘barred from Virgin train’ after row about re-heating food. Retrieved from https://metro.co.uk/2019/05/21/autistic-woman-barred-virgin-train-row-re-heating-food-9624484/
Epilepsy Society. (2019). Travel And Holidays. Retrieved from https://www.epilepsysociety.org.uk/travel-and-holidays#.XPlMHYhKjD4
Schachter, S. and Shafer, R. (2007). Types of Travel and Vacations. Retrieved from https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel/types-travel-and-vacations
Schachter, S. and Shafer, R. (2007). Travel Tips for VNS and Other Treatments. Retrieved from https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel/travel-tips-vns-and-other-treatments
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 at livingwellwithepilepsy.com