Travel Tips for People With Friedreich’s Ataxia

When you’re living with a degenerative condition like Friedreich’s ataxia (FA), a lot of brain space gets dedicated to thinking about the things you can’t do. And that’s not necessarily a bad thing. Being open, honest and proactive about your changing needs and abilities is key to maintaining your health and independence.

But it’s equally important to remember how much you can do. You are, after all, more than your diagnosis. Sure, FA makes life more complicated. But that doesn’t mean you can’t find ways to achieve your goals.

If you’ve always wanted to travel, neurologist Odinachi Oguh, MD, assures you can make it happen. She shares her tips to help ensure a smooth ride.

Preparing for your trip

Set the stage for a successful trip long before you take off, set sail or leave the station.

Communication is key. Talk to your caregivers, friends, family and other people living with FA. They can help you set expectations and offer hard-won wisdom from their own globetrotting experiences abroad.

Dr. Oguh’s pre-travel checklist for people with FA can be summed up in one word: preparation. The more work you do ahead of time, the more likely you are to enjoy your journey.

Know your destination

Wouldn’t it be lovely to have the kind of life where you can spin a globe and visit the destination your finger lands on, just like that? How exciting!

Unfortunately, spontaneity isn’t a luxury most of us can afford. And that’s even more true when you’re traveling with a disabling chronic illness. Dr. Oguh says it’s crucial to research your destination ahead of time to avoid unpleasant surprises. That means accounting for factors your traveling companions may overlook, like terrain.

“If you’re going to Europe, you may need to take different assistive devices than you usually use at home,” she notes. “A lot of people with Friedreich’s ataxia talk about how the streets in Europe tend to be really uneven, which makes it difficult to use a walker. Instead, you might want to bring a cane or walking poles on a Europe trip. Or maybe use a motorized wheelchair or scooter instead, to limit fatigue and reduce your risk of falling.”

Other things to research include:

• Climate. Extreme temperatures can not only cause your body to fatigue faster than normal, but it can also impact your muscles’ ability to function. Pack clothing and use mobility devices that are appropriate to the climate and always check the weather before venturing out.
• Food concerns. Some people living with FA experience difficulty swallowing (dysphagia) and about 30% eventually develop diabetes. Make sure that the places you plan to go can accommodate your dietary needs. And remember: No matter where you are in the world, placing your hands on your throat indicates that you’re choking and need urgent assistance.
• Bathrooms. Some people with FA experience urinary and bowel issues. Those symptoms can be exacerbated by the stress of traveling and eating different foods. Know where bathrooms are and whether they’re accessible. If you use incontinence underwear, be sure to bring extra pairs with you on excursions, just to be safe.
• Language barriers. You don’t want information about your health or safety getting lost in translation. While apps, devices and dictionaries are great, consider having keywords or phrases you’d want to communicate in an emergency translated by a native speaker ahead of time. In a pinch, there are also web-based, on-demand translation and interpreting services you can pay for by the minute.
• Electrical differences. Confirm ahead of time that any medical equipment you need to plug in is dual voltage, and determine whether you’ll need an adapter to use it at your destination.
• Accessibility rules. Many countries have laws on the books to prevent discrimination against people living with disabilities. But those laws don’t necessarily guarantee equal access. Before booking, Dr. Oguh says you should always check to make sure your lodging, transportation, dining and sightseeing facilities can accommodate your needs. Reviews can be very helpful, as can travel accessibility apps, FA support groups and disability travel websites.

Consider insuring your trip

Accidents, emergencies, cancellations: They can happen to anyone at any time. Getting travel insurance in advance of a trip can give you an extra layer of protection — not to mention peace of mind.

Carefully review the medical coverage before purchasing travel insurance. You want to pick a plan that guarantees you’ll get the care you need no matter where you are, regardless of cost. Also, make sure any policy you purchase covers both the cost of lost or stolen medical equipment and medical evacuation.

Pack wisely

The following items should, whenever possible, be stored on your person or in a carry-on bag:

• Medical alert bracelet. Dr. Oguh shares that most of the people in her FA clinic wear medical alert bracelets that include their diagnosis and list serious allergies.
• Medication. Always pack your medications in your carry-on luggage so you don’t have to go without them in the event that your luggage is lost or delayed. And keep your drugs in their prescription containers when you travel internationally. The last thing you want is to have your medications confiscated by suspicious customs agents. If you need to travel with liquid medications, check the security regulations ahead of time to determine how best to store them.
• Contact information. Compile the name and contact details for all the members of your FA care team. Also, include your emergency contacts and (if you have one) your healthcare power of attorney.
• Medical ID cards. We all know that you need a passport to travel from country to country. But it’s equally important to bring health and dental insurance cards, a Medicaid card if you have one and proof of vaccinations, if required.
• Medical records. You don’t have to have hundreds of pages on hand, but having basic records can save healthcare workers time and trouble in an emergency. Compile a document that includes all the necessary information you would need to establish care with a new provider. Your diagnoses, allergies, medications, surgical and family histories could be vital. If you have a smartphone, insert the same information in the health app for quick access.

Documents, cards, bracelets, apps: We’re mentioning medical information a lot. That’s because the more redundancies you have in place, the better the chances emergency services will be aware of and account for your FA diagnosis in an emergency.

Know transportation service policies around assistive devices

They help you navigate through the world, but assistive devices and durable medical equipment can be a real hassle to travel with. Whether you’re flying, sailing or riding to your destination, always contact the company to establish:

1. That you’re allowed to travel with the equipment you need.
2. Where your assistive devices will be stored during the trip.
3. Their policies around damaged, lost and stolen medical equipment.

Depending on the kind of devices you use and the type of trip you’re taking, it may make sense to purchase inexpensive, travel-friendly assistive devices and medical equipment.

For longer trips, consider renting assistive devices like powerchairs. Finding suppliers and coordinating pick up and drop off can be irritating, but it’s significantly less irritating than trying to get medical equipment repaired or replaced while abroad.

Invest in smart tech

Falling is one of the biggest risks people living with FA experience on a daily basis. For that reason, Dr. Oguh recommends getting a smartwatch that comes equipped with fall detection technology. When these devices sense motion consistent with a fall, they automatically alert either your emergency contact or first responders. You can also use smartwatches to collect bio information, like your blood oxygen level, heart rate, sleep quality, activity levels and cardiac rhythms.

Smartphones can also be extremely helpful during medical emergencies.

“You can literally input your medical information in your phone so it’s right there when you need help,” Dr. Oguh emphasizes. Many healthcare organizations also offer medical records access through smartphone apps, so you don’t have to carry lots of paper around with you to feel safe.

Traveling with Friedreich’s ataxia

Now that you’re prepared for your trip, it’s time for the adventure to begin! No matter how much work you do ahead of time, traveling puts stress on your body. But there are things you can do to make your journey less arduous.

Take frequent breaks

It’s common for people with FA to experience spasticity — spasms and tightness in the muscles — when they’re inactive for too long. Because of this, Dr. Oguh recommends breaking up any travel that’s going to take longer than four hours, if possible.

“Sometimes, my patients will ask me for a prescription for a muscle relaxer to take while they travel. And that’s also a reasonable ask,” she adds.

If you tend to get pressure injuries (also known as bedsores) when you’re still for long periods of time, consider bringing cushions with you.

Of course, getting there is only half the battle. It’s also important to build rest into your schedule once you arrive at your destination — especially if you’re going to be walking a lot or doing other physically demanding activities.

Maintain your routine

A change of scenery can be a wonderful thing. But if you’re living with Friedreich's ataxia, you need to try to keep other areas of your life consistent.

“Having a routine is important for anybody,” Dr. Oguh notes, “but it’s especially important with neurodegenerative diseases.”

Set timers so you don’t forget to take your medications. Keep exercising and doing your physical therapy. Enjoy your culinary adventures but stick with your usual eating schedule and portion sizes. If you typically take an hour-long nap in the afternoons, build it into your itinerary. Preserving these aspects of your life will help keep your energy up and symptoms at bay.

The bottom line

Living with a condition like Friedreich’s ataxia can make traveling complicated, but that doesn’t mean it can’t be fun, too. If you do your research, plan ahead, advocate for your needs and protect your health by maintaining your daily routine, the world can be your oyster.