This blog I wrote is in response to queries I have received. The answer is YES you can travel.
However some pre-planning and organization can help make the trip more relaxing.
Planning Your Trip: Familiarize yourself with where you are going. There are websites and blogs about most major cities. How accessible is the area? What are some concerns? Keep a notebook with your findings.
Create the Optimum Flight Schedule – How long will the trip take? You will need to get to the airport at least two hours ahead for domestic flights and three hours ahead for international flights. Many airlines will let you have an extra-long layover, up to 23 hours long and not charge you more for the flights. This can be helpful to avoid sleep deprivation when you are traveling long distances. We break up our trips to Europe into two days, staying in a hotel that has a restaurant located near the airport with shuttle service. Add a wheelchair pusher to your itinerary for airport transfers. It is easier to get through security and to the gate. Check the airplane configuration and ask the airline representative to help you choose seats near to the onboard restrooms.
Review Prescription Medicine Requirements – Consult with your doctor. Have written information from your Dr. explaining your epilepsy and the names of the medications you take including the generic names. Have a list available. Organize the medicine schedule if you are changing time zones. Be sure to have packed in your hand luggage ALL of your medication in prescription labeled bottles. We travel with at least two weeks of medicine more than we will typically need, as preparation for possible dosage change or medical emergency. You can request a “vacation” refill on the prescriptions to make sure you have enough medication. We often will begin adjusting medicine by 30 minutes to an hour earlier for a few days before travel to minimize the disruption to the schedule.
Read Airline website – learn their policies for traveling with a disability and the accommodations they offer. Some airlines require doctor-signed medical forms for traveling with any medical equipment including CPAP machines and Vagus Nerve Stimulator implants. Many airlines have brochures you can request or download from their website.
Get a Medical Alert Card or ID bracelet – your medical ID should include, First and Last name, Epilepsy or Medical condition, Medications, Allergies, Emergency Contact Numbers, Dr. Phone number.
Or the Epilepsy Foundation’s first aid wallet card in their store, http://shop.epilepsyfoundation.org/store/p/746-First-Aid-For-Seizures-card.aspx. Have medical alert information and registration card for medical equipment such as the Vagus Nerve Stimulator or any other adaptive or assistive devices. Have a seizure protocol list in a plastic bag with seizure rescue meds.
Packing – Eligible Accommodations There is no limitation for liquid or gel prescription medications that are properly labeled. Review the airline and TSA requirements. Often you can carry medically necessary items that the general public can’t carry.
Luggage requirements – there are size and weight limitations that vary by location in the world. Review the requirements. Pack all medically necessary equipment in one bag. The airlines carry medical equipment at no charge to you. We put a complete change of clothes for all travelers, a plastic garbage bag for soiled clothes, wet-wipes and two adult sized bibs in our hand luggage.
Arrive at the airport early – Ask at check-in about getting your wheelchair assistance. Use this service whether you have your own chair or not. Explain to the person what will be the most help getting through security. We usually tip the pusher $5.
Pre-TSA packing – Pack all medications in one location in your hand luggage. Put all electronics in one location. Be prepared to place them in the bins for the security screening. Pack separately things you don’t need to remove for security.
Security Checks – know what you need to remove from the bag. Ask the agents for clarification. Explain to them your child’s special needs. Ask the wheelchair pusher to retrieve your bags while you assist the TSA agent with the screening.
After –TSA repack before the flight – repack your hand luggage so that you have what you need during the flight under your seat. Extra medicines and clothing can be in the luggage in the overhead bins.
Pre-Boarding – Toileting – Plan your toileting schedule based on the flight time. Go just ahead of when the pre-board time is.
Assistance – the flight crew is willing to help. Just ask them. Check in with the gate agent ahead of boarding, alerting them that you are traveling with a disabled person. They can carry your bags to your seat for you. There is an aisle wheelchair available.
Wheelchair – we have a manual transfer chair that we use for traveling. It folds up and weighs less than 24 pounds without the detachable foot rests. Often it can fit in the onboard closet of the aircraft so we know that it is with us on the flight. We remove all detachable parts from the chair before handing the chair over to the flight crew and take them to our overhead bin.
Flight – Comfort – plan for the flight time. Bring toys on board, noise cancelling headphones, I-Pad, snacks.
Toileting – Check with the cabin crew. They can hold a restroom for you so you don’t have to stand in line.
alert the cabin crew if you need them to hold the door to the toilets for you. We have a large scarf that can be used as a privacy screening because often you can’t close the door while assisting someone in the restroom. Some aircraft have curtains nearby that can work also. Some aircraft have an onboard aisle chair.
Exiting the aircraft – Remind the cabin crew before landing that you will need a wheelchair pusher at the door of the aircraft. They can confirm this. Wait until everyone else has deplaned, then the flight crew can often assist you getting off the plane.
What if There is a Medical Problem? – Know the airline’s policies and procedures – They have a direct connection to emergency room physicians on the ground. Often there are medical professionals onboard that offer assistance as well.
Follow the flight crew instructions, be calm and educate them. Their emergency flight training typically doesn’t involve seizures. The flight crew will often listen to what you are saying, but the captain has the responsibility for the safety of everyone.
Comfort While Traveling – For the hotel – Take the child’s own bedding, sheets, pillow case and a blanket. It smells and feels more like home. We also have 6 mil thick plastic cut to a single bed size to protect the hotel bed from incontinence.
We are road warriors of international air travel. Please contact me if you have other questions. firstname.lastname@example.org
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