10 life hacks for navigating travel with Huntington’s disease
My illness can make traveling difficult, but being prepared is key
Traveling can lead to excitement and adventure, but for those of us with Huntington’s disease (HD), it can also pose significant challenges. Whether it’s navigating an unfamiliar airport or managing chorea (involuntary movement) or fatigue, the experience can feel overwhelming.
I’ve found that traveling with Huntington’s requires not only physical stamina, but also emotional endurance. Even the best-laid plans can be derailed by unforeseen circumstances. I’d like to share some of my experiences as well as practical life hacks to make traveling a bit more manageable for those of us with HD.
On a recent trip, for instance, my connecting flight was delayed, which I hadn’t anticipated. As I watched the minutes tick by, I could feel my stress levels rise. The delay wasn’t just an inconvenience; it triggered a full-blown panic attack. When I’m stressed or anxious, my choreic movements become more pronounced, even with the medication I take every 12 hours.
And if there’s one thing that always raises my anxiety levels, it’s passing through airport security. I’ve lost count of how many times I’ve been flagged by Transportation Security Administration (TSA) agents for further screening. While I understand that they’re just doing their job, the personal searches and body scans always leave me feeling exposed and vulnerable. Having someone go through my belongings and pat down my body, especially when I’m experiencing chorea, only heightens my panic.
Strangers have approached me asking if I were OK because my movements seemed “off.” It’s embarrassing and adds to my stress when others notice that I’m not moving in the “normal” way. I can feel the judgment in their eyes, even if they mean well.
Despite these challenges, I’ve developed a few essential life hacks that help me manage the chaos of traveling, which allows me to still enjoy the adventure of seeing new places.
10 essential hacks
1. Plan ahead for accessibility: Call ahead to airports and hotels to ensure they can accommodate any mobility needs you may have. Request wheelchair assistance, even if you don’t always use it, to save energy for the rest of your trip. It’s also helpful to know in advance where accessible restrooms and elevators are located.
2. Choose accessible accommodations: When booking your hotel, opt for places that offer accessible features such as ground-floor rooms, grab bars in the bathroom, and easy access to transportation. These little comforts go a long way when managing fatigue and mobility issues.
3. Pack medication wisely: Use a pill organizer to keep your medications in order. Always carry extra doses in case of delays, and if your medications require refrigeration, bring a small cooler or request refrigeration from your hotel. Keep a list of your prescriptions handy in case of an emergency.
4. Break up the journey: Long trips can be incredibly taxing, so break up your travel when possible. Schedule rest stops or stay overnight at a layover city. After any major travel leg, take some time to relax before diving into activities.
5. Inform airport security about your condition: Let TSA agents or airport staff know you have a medical condition.
6. Wear noise-canceling headphones and sunglasses: Airports can be overwhelming, with their bright lights and constant noise. Bring noise-canceling headphones and sunglasses to reduce sensory overload. These small items help me create a peaceful bubble in stressful environments.
7. Accessible-travel apps: Use apps to find accessible locations, and consider travel apps that can help with medication reminders or itinerary planning.
8. Communicate with travel companions: If you’re traveling with friends or family, ensure that they understand your needs. Whether it’s needing extra rest breaks or quieter spaces, communication is key to making sure the trip goes smoothly.
9. Pack light and use mobility aids: Stick to lightweight luggage and use bags with wheels. Consider bringing along a cane or walker for stability, even if you don’t use one daily. Support aids can make a huge difference when navigating airports or busy city streets.
10. Consider wearing adult undergarments: I’ve had moments when getting to a bathroom quickly just wasn’t possible. Wearing adult undergarments can be an added layer of security in case you face a situation where you can’t access a restroom in time. It’s one less thing to worry about when traveling.
Traveling with Huntington’s is undeniably stressful, but with careful planning and the right strategies, it can still be an enriching and rewarding experience. I’ve learned that while I can’t always control my symptoms, I can control how I prepare for the journey. I hope others with HD can follow these hacks and continue to explore the world, one step at a time — challenges and all.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Ellen Eaton
Thank you for sharing here! I will look for your book. You are inspiring pushing forward, Best to you.