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Talk with your doctor before you leave, take frequent breaks and don’t hesitate to ask for help
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.
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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.
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.
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.
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“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:
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.
The following items should, whenever possible, be stored on your person or in a carry-on bag:
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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.
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:
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.
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.
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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.
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.
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.
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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.
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.
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