Symptom management on the go: Tips for traveling with Huntington’s disease

Traveling with Huntington’s disease requires more than packing a suitcase. It requires planning, patience, self-advocacy, and a deep understanding of my body.

I love the idea of seeing new places, speaking at events, visiting loved ones, and saying yes to meaningful opportunities, but traveling while symptomatic means I have to be realistic about what my body needs before, during, and after the trip.

For me, preparation begins long before I arrive at the airport. I think the trip through in layers — transportation, medication, fatigue, accessibility, food, clothing, safety, and emotional regulation. I don’t just ask, “What do I want to bring?” Rather, I ask, “What will help me feel calm, supported, and less overwhelmed?”

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My travel tips and hacks

One of my top travel hacks is to build in extra time. I don’t like rushing through airports. Long walks, confusing terminals, delayed flights, and crowded spaces can increase my anxiety and make my symptoms worse. When I’m rushed, my body feels less steady and my mind less clear. So I try to arrive early, move slowly, and give myself permission not to keep up with the pace of everyone else.

I also request airport wheelchair assistance when I need it. This was hard for me emotionally at first, but I see it differently now. Wheelchair assistance is not about weakness. It’s about conserving energy. If I use all my strength getting from security to the gate, I may have nothing left for the actual event, meeting, or experience I traveled for. Accessibility helps me show up better.

I also choose direct flights whenever possible. Layovers can be stressful, especially when flights are delayed or terminals are far apart. A delayed connection can create panic, fatigue, and uncertainty. Direct flights may not always be available, but when they are, they are worth prioritizing. I also prefer a window seat because it gives me a sense of being tucked away and grounded. When my movements are more noticeable, a seat by the window helps me feel less exposed.

Packing is another part of managing symptoms. I try to keep my medication in my personal bag, not in checked luggage. I bring more than I need in case of delays. I also keep snacks with me because hunger can make fatigue and irritability worse. Protein bars, crackers, nuts, fruit snacks, or anything easy to grab can make a huge difference when airport food is too far away, too expensive, or not accessible.

I also pack what I call my “calm kit.” This might include headphones, a charger, lip balm, hand sanitizer, gum or mints, a small notebook, a favorite scent, and anything that helps me feel regulated. Noise-canceling headphones can be a lifesaver in loud airports. Music, meditation, or a calming podcast can help me create a little bubble of peace in the middle of chaos.

Clothing matters, too. I love fashion, and I still want to feel like myself when I travel, but I also think about comfort and safety. I choose outfits that are stylish, but not restrictive. Shoes matter because balance matters. I may love a beautiful shoe, but if I am walking through a huge airport or navigating unfamiliar streets, I need something that supports me. When I’m traveling, I can always pack the fashion shoes and wear the practical ones.

When I’m exploring a new place, I also try to research accessibility ahead of time. I look at how far things are from the hotel, whether transportation is available, and if the venue has elevators, seating, or quiet areas. I also try not to pack my schedule too full.

Rest is not optional for me when I travel. I build in recovery time, even if that means going back to my hotel early or skipping an activity. I’ve learned that fatigue isn’t just about being tired. With Huntington’s, fatigue can affect my balance, speech, mood, movements, and ability to think clearly. Rest protects me.

I also try to communicate my needs clearly when I’m traveling for events. I may ask about transportation, hotel arrangements, accessibility, arrival times, and payment details ahead of time. This isn’t about being difficult. I’m ensuring that I’m not placed in situations that increase stress or symptoms. Clear communication helps prevent misunderstandings and allows me to focus on why I am there.

Traveling with Huntington’s has taught me to be both adventurous and honest. My best travel advice is this: Know your body, honor your limits, and do not apologize for needing support. Huntington’s disease may change how I travel, but it doesn’t take away my right to experience the world. I’m learning that accessibility, rest, and self-advocacy aren’t obstacles to adventure. They’re what make adventure possible.

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.