Traveling has always been an adventure for me — the thrill of seeing new places, spending time with family, and simply being on the move. But over the last few years, I’ve noticed that Parkinson’s doesn’t always play nicely with the open road. Whether it’s a short trip, a family emergency, or just a change of scenery, traveling now comes with a whole new set of challenges I didn’t anticipate when I was first diagnosed.
After reflecting on several trips — from voluntary evacuations during forest fires to traveling for deeply personal family events — I realized there are three crucial lessons I wish I had known much earlier. If you live with Parkinson’s, or care for someone who does, these insights might help you prepare and navigate travel more safely and smoothly.
1. Your Environment Shapes Your Symptoms More Than You Think
Parkinson’s loves repetition. It thrives on familiarity, and for good reason. When I follow my daily routine — using the same bathroom, sleeping in the same bed, eating the same foods, and taking medication at the same times — my symptoms are somewhat predictable. Not perfect, but manageable.
Change any of that, and Parkinson’s can feel like a mischievous partner throwing surprises at every turn.
A Real-Life Example: Evacuating During Wildfires
Last summer, smoke from nearby wildfires prompted a voluntary evacuation. We stayed with my in-laws, a place I know well, but for the first time in nearly two years, I slept in a different bed and used a different bathroom.
The first morning, I woke up urgently needing the bathroom, but my leg locked in dystonia and my arm curled uncontrollably. I couldn’t walk, couldn’t crawl, and couldn’t use my Neck Stryder. I lay there, hoping I wouldn’t pee the bed until my wife helped me maneuver to a chair and then to the bathroom.
It took my medication over an hour and a half to kick in. That morning taught me something critical: even in familiar places, small environmental changes — like a bed, a sheet, or a bathroom layout — can dramatically impact how Parkinson’s manifests.
Why Familiarity Matters
Parkinson’s is a disease that thrives on predictability. When I’m in my own home, my brain and body know what to expect. I know exactly where obstacles are, where I can safely walk, and how to time my movements around my medication. But in a new environment — even one I’ve visited before — my body suddenly has to relearn every movement.
This can make even simple tasks like walking to the bathroom, getting dressed, or pouring a cup of coffee more challenging. It’s not laziness or lack of effort; it’s Parkinson’s taking advantage of uncertainty.
How I Prepare Now
- Always bring comfort items: My travel sheet or comfort linen is non-negotiable. It’s more than just a blanket; it’s a small piece of my home that helps my body relax.
- Assess sleeping and bathroom arrangements ahead of time: Knowing where handrails are, how slippery floors are, or if steps exist can prevent accidents.
- Build extra time into mornings and evenings: OFF periods can last longer in new environments.
- Minimize stress wherever possible: Stress amplifies symptoms, so having a calm, quiet space to retreat to is essential.
Travel isn’t just a change of location — it’s a change in context, and Parkinson’s responds to context with a mix of unpredictability and stubbornness.
2. Food, Meal Timing, and Medication Schedules Are a Delicate Balance
If there’s one thing Parkinson’s has taught me, it’s that digestion and medication timing are inseparable allies. When my meals, water intake, and medication schedules align, my medications work optimally. But traveling throws all of this into chaos.
An Example: Filming a Hunting Episode
On a recent hunting trip, all the food was provided by someone else. Different ingredients, different meal times, and suddenly, my system was in upheaval. Within a day, I was constipated. For three days, nothing worked.
The fix? Hydration — lots of it. Once I drank liters of water, my system started moving again. But it was a sharp reminder that unfamiliar meals and disrupted routines can quickly spiral into a crisis.
Meal Timing and Medication Interactions
Levodopa, the mainstay medication for Parkinson’s, interacts with food in subtle ways. Protein can interfere with absorption, and meal timing can either amplify or reduce the effectiveness of each dose. A sudden change in diet or meal times — something as simple as switching from cereal to a large protein-heavy breakfast — can disrupt medication absorption and lead to OFF periods.
Lessons Learned
- Changes in diet can block or delay levodopa absorption.
- Medication timing can only shift about 15–30 minutes before symptoms worsen.
- New foods, especially unfamiliar proteins, can create digestive chaos.
- Hydration is essential, especially on trips where access to water may be inconsistent.
Practical Tips for Travel
- Pack snacks that are familiar and easy on your digestive system.
- Plan meals around your medication schedule.
- Monitor bowel movements daily, not weekly.
- Keep extra water on hand, especially for long car rides or outdoor trips.
- Avoid sudden dietary experiments in new environments.
Traveling isn’t just about packing clothes — it’s about packing routines. Maintaining predictable digestion is one of the strongest defenses against symptoms flaring mid-trip.
3. Traveling While OFF Is Exhausting — and Planning Is Everything
The hardest lesson of all? Traveling while OFF is physically and emotionally draining. For those unfamiliar, “OFF” periods are times when medications temporarily stop working, and Parkinson’s symptoms intensify. Imagine being stiff, frozen, or jerky for hours while still needing to navigate your world.
A Real Example: My Son’s Funeral
Last year, we traveled for my son’s funeral. The trip involved waking up at 4 a.m. for a 12–14 hour drive each way. I was already deep in an OFF state before my medication even kicked in.
I tried taking a dose early, but it barely worked. When we boarded the ferry, I needed rescue medication — and even that took half an hour to start functioning. Sitting rigidly for hours, the emotional weight of the day, and the stress of new environments combined to make every movement exhausting.
What I Overlooked
- Accessibility options (wheelchairs, ramps, mobility devices).
- Travel aids for long periods of sitting.
- Planning for extended OFF periods.
- Impact of emotionally heavy events on symptom severity.
Strategies for Future Travel
- Pre-arrange mobility aids, including wheelchairs or walkers.
- Build extra time into your travel schedule.
- Plan medication timing carefully and carry rescue doses if necessary.
- Allow rest periods to avoid cumulative fatigue.
- Consider the emotional impact of travel on physical symptoms.
Even short trips can feel like marathons if OFF periods are not accounted for. But with careful preparation, travel is still possible — even enjoyable.
4. Emotional Impact: The Hidden Challenge of Travel
Traveling with Parkinson’s is not just physically taxing; it’s emotionally exhausting. Being in a new environment, away from familiar support systems, can cause anxiety that amplifies symptoms.
Stress and Symptom Amplification
Even subtle stressors — a new bed, a different chair, or an unfamiliar bathroom — can trigger dystonia or tremors. In high-stress situations, my body seems to forget all the tricks it’s learned at home. This psychological stress feeds directly into physical symptoms, making me feel trapped in my own body.
Preparation Strategies
- Visualize your travel day in advance. Knowing potential obstacles helps reduce anxiety.
- Bring a trusted companion who understands your needs.
- Use breathing techniques or mindfulness exercises to calm your nervous system.
- Schedule downtime for mental and physical rest.
5. Mobility and Accessibility Are Key
I’ve learned that mobility aids are not just for emergencies. They’re tools that allow me to remain independent and safe.
Traveling Without Planning
On long car trips or ferry rides, I realized I hadn’t considered a wheelchair for myself. Without it, even simple movements became exhausting and risky.
Proactive Planning
- Research wheelchair availability or accessible transport options in advance.
- Confirm accommodations support mobility needs.
- Carry lightweight mobility aids if possible.
- Ask about accessible restrooms and ramps before arrival.
6. Practical Travel Checklist for People with Parkinson’s
Here’s a checklist I now use before any trip:
- Comfort Items: Sheets, pillows, or anything familiar.
- Medication Plan: Schedule, rescue doses, and extra supplies.
- Diet & Hydration: Familiar snacks, water, and timing plan.
- Mobility & Accessibility: Wheelchair options, ramps, rest stops.
- Emergency Plan: Contacts, nearest hospital, and care resources.
- Mental Prep: Visualize obstacles, downtime, and relaxation strategies.
By following this checklist, I reduce surprises and make travel less stressful for both myself and my caregivers.
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A Note for Caregivers
Traveling with someone who has Parkinson’s often means being the steady hand in unpredictable situations. Your support — checking in during OFF periods, assisting with mobility, preparing familiar meals, or simply being present — is invaluable.
Remember:
- You are not responsible for the symptoms themselves.
- You deserve rest and support too.
- Your presence provides stability in unfamiliar environments.
Medical Disclaimer
This blog reflects my personal experiences living with Parkinson’s. It is not medical advice and should not replace guidance from a qualified healthcare professional. Always consult your neurologist, movement disorder specialist, or healthcare provider before making changes to your medication schedule, diet, or travel plans.
