Everyone’s journey with Parkinson’s (PD) is unique. No two people share the exact same symptoms, nor can you expect those symptoms to present the same week to week, or sometimes even hour to hour. This is our journey, Mike’s and mine, with his PD and some of the lessons learned as we have navigated life together. For a bit of background Mike was first diagnosed with PD in early 2007 - over 18 years ago. At the time he was a project manager for eBay, while I worked as a specialty tour operator.

We had been pretty keen and adventurous travelers for years by that time. In our 20’s it was about cheap and independent adventures. As we got older, and our budget improved, the adventures got a bit grander. Between the specialty small-group tours I operated, and contacts I had in the industry, our horizons broadened! Mike always had a preference for cultural adventures, while I was keen on wildlife.

Then came the diagnosis, and a time of pulling back, rethinking, researching… We had just returned from Antarctica weeks before the diagnosis so our travel desires were satiated for the moment, but we had also just negotiated the purchase of the tour operator I worked for. Late that year we had a very unique opportunity to volunteer for U.S. Fish & Wildlife Service on Midway Atoll for 3 weeks, working 8 hours a day in the field, 6 days a week - sleeping in old military barracks and riding bikes anywhere we needed to be. We decided to continue living our lives as we had been, for as long as possible. We took the volunteer assignment, and in early 2008 also concluded the purchase of Galapagos Travel.

This isn’t to say there haven’t been ups and downs, but we (Mike mostly!) have soldiered on! And we’ve learned a few lessons along the way for what works for us. These lessons are ever-evolving, but here is some of what works for us, whether going out of town overnight, or some far flung location.

the basics…

keep it simple - keep it safe - keep having fun!

Planes, trains, cars or boats…

We’ve always been big on road trips, taking turns driving. Mike gradually phased away from driving over the last few years and became content as a full-time passenger (well, mostly content - he still fiddles with the temperature controls much more than I deem necessary!). A couple of years ago we decided to get a handicap placard for our car. I still park us in the far reaches of many parking lots in the name of exercise, but it’s also nice to have the ability to take the close spots when Mike needs that. The placards are free from the DMV although your physician will need to complete some paperwork with you to get approval. We carry a small emergency supply of Mike’s meds in the car in case we stay out longer than planned. In the trunk we also carry a small travel packing cube with a change of clothes. We did sell our low-slung sports car in favor of something a bit higher off the ground and easier for both of us to get in and out of!

We have toyed with the idea of renting an RV for a short trip to see how that might go. We’ve also thought about some of the long-distance train tours we see advertised: across the U.S. on Amtrak, or there is a cross-Canada trip that looks gorgeous. Or there are multi-day train opportunities in Australia, or Southern Africa… Before Parkinson’s we did some budget travel on trains in Asia and loved it. These days we’d go for the trains with dining cars and private cabins though!

By ship? I can’t bear the idea of a giant cruise ship; maybe I’ll change my mind about that one day, but doubtful. What we have done is a number of small expedition ship voyages (these ships typically carry fewer than 150 guests) and they are great. More on that below.

With friends we have rented houseboats before and had a wonderful time exploring from our floating RV. Space inside is cramped which can be challenging, but otherwise nice and comfy, and Mike enjoys driving those!

airports…

First you have to get to the airport. Depending on how long we will be gone we will either take an Uber or drive ourselves. Is we are driving I pre-book our parking so it’s one less thing to think about the day of travel!

These days we nearly always request wheelchair assistance from the airlines for Mike when flying. There is no charge for this (other than a tip for the “pusher”), and it not only gets Mike where he needs to be effortlessly, while also shortcuting lines everywhere for both of us (TSA, Immigration, etc), plus the pusher knows where we need to go - especially helpful when changing planes on long routes. If it is a motorized shuttle in the terminal they let me sit too - otherwise I trot along next to Mike. Does Mike need help in airports? Typically no, but sometimes yes, especially if there are long distances to walk, or long lines to stand in (leaving Buenos Aires a couple of years ago the immigration line would easily have been an hour long, but with the wheelchair it was maybe 10 minutes, and Mike was sitting the whole time - and as his escort I get the short lines too).

Wheelchair assistance needs to be booked at least a day prior to travel, and can nearly always be done easily on line. When you arrive at the airport at check in you will topically be met by someone to assist you with a wheelchair. From that point on someone will help you through to your departure gate (if needed they can even help you onto the plane - we just request assistance to the departure gate though). When you land, at a connecting airport or your final destination, there will be someone there waiting to assist again. If this is your final destination then they will take you to baggage claim (via customs and immigration if it was an international flight), and out to the curb, or rental car desk, etc. They are also happy to stop outside terminal restrooms should you need to make a quick visit inside - they wait outside with the chair and your carry-on luggage.

Tipping is obviously discretionary but my standard is $5 for anyone who helps us. Sometimes there might be a couple of people who help in an airport as there is someone to take us from the plane to a staging area, and someone else from the staging area to our next flight or the airline lounge, and then someone else to take us from the lounge to the gate… And if someone has really had a job of it for whatever reason I again tip more.

Expect the unexpected if you have booked assistance too! In Johannesburg we were taken to a holding area where we were seemingly forgotten. I checked at the counter several times and was each time assured that a helper would pick us up in time for our next flight. Ultimately a frazzled woman arrived to collect Mike, and essentially sprinted through the airport pushing him. At one point, from an overhead skybridge she yelled at the top of her lungs down to a gate agent that she was coming and to hold the door! At another airport in Africa the flight staff didn’t ask but just assumed that Mike couldn’t climb the stairs up into the jet - they brought in the equivalent of a giant catering truck to lift him and another person in a wheelchair up so they could walk in level with the plane through the galley door! Or, again in Africa, I tried to tip a pusher who looked stricken by the idea and pointed to an obervation tower like he might be being watched - he then moved out of site of the tower and shyly held out his hand!

on flights

We used to travel all carry-on when possible. These days, especially for longer trips, that’s just not possible. The better part of one small carry-on can be all of Mike’s meds, plus his DBS charger unit. We always carry that critical stuff onto flights with us. Mike also has a small(ish) zippered pouch for his in-flight necessities, which he gets out of his carry-on bag when we board. This holds his iPad, passport, wallet, and any pills he might need during the flight). This way he can get this small bag out once, have everything he needs nearby, but leave the heavier carry-on in the overhead compartment.

When boarding flights we take advantage of the early boarding offered for anyone who might need extra time (if he still has the wheelchair they will automatically put us in this group anyway).

We are lucky. We can afford to travel economy-plus, or business class, in most instances, so we have that added space around us in case Mike might get fidgety (I’m not complaining either!). I select our seats on planes keeping in mind proximity to the lavatories as well as how far from the entrance door we have to go. If we are flying coach I will often books seats on aisles across from each other so I can help easily should he need anything.

On our most recent trip, to Florida, the day prior to departure we decided that we had to bring Mike’s wheelchair rather than a walker. Traveling with the chair was a new experience, but manageable. “Pushers” still helped in the airports, where we would relinquish the chair at the door to the plane. On arrival we would be some of the last off the plane as we waited for the chair to be brought back up to the door.

One quirk I haven’t quite mastered yet is navigating all the luggage myself if/when we are walking (such as from the curb to the check in counter). It sounds crazy but for a long trip we could conceivably each have a checked bag, plus a carry-on bag each, and a couple of personal items: that adds up to 6 things to keep track of, plus Mike, until I get some bags checked. Our checked and carry on luggage all has wheels these days, and is well under weight limits! I guess what I’m saying is try not to overburden yourself if possible!

airport/hotel transfers

Airport/hotel transfers have always been this nice thing as part of my organized tours and some expeditions, but never something I considered until our trip to Sri Lanka earlier this year. We booked them throughout for that trip and it was a luxury well worth the cost. Having someone there to greet you when you arrive relieves so much stress of wondering where to get transport, if you need local currency, how to find your hotel, keeping track of the bags, etc. Instead it’s all taken care of: they meet you in the airport and help with your bags, stop at an ATM if needed, and whisk you straightaway to your hotel. Bliss. When it’s time to leave again a transfer will take you back to the airport and occasionally even escort you inside to the check-in counter with luggage. Any stress that can be taken out of the travel logistics is a blessing and well worth a few dollars! Transfers can typically be booked through your hotel, or a local tour operator.

medications

There is so much conflicting advice out there about traveling with medications, often from various countries’ own web sites. Should you keep them in the original prescription bottles or not, etc.? We have, on occasion, kept Mike’s pills in original bottles (we did this for Cuba I recall), then once in country divided them up onto the regular pill organizer we use at home so things stay familiar. Other times we just travel with them in the organizer in the first place. I have been known to photograph the prescription bottles too. We have never needed to show prescription bottles or prescriptions anywhere.

Dealing with keeping on a medication schedule when crossing time zones is tricky. We always struggle with this so but try to, within a couple of days, be back to taking meds at the same times of day as we would have at home.

hotels

Whether a quick overnight, a weekend away, or a longer stay we look for accessibility and comfort when selecting hotels. For several years we needed to spend a night near Stanford every few weeks. This was the sort of stay where we wouldn’t be checking in until late afternoon, and we’d be gone again by 8am the next morning. We didn’t need much more than a safe and comfortable place to lay our heads down - essentially more of a motel than a big (expensive) hotel. The main criteria in this case was a bathroom with a safe shower (not a tub one has to step up and over into, let alone wrestle with a shower curtain, or something with no grab bars). Many times this means the main room has less furniture in case a guest needs room for a wheelchair - not an ideal solution for us, but it’s more about the safety. When looking at a hotel’s web site I always look for bathroom photos!

Mike is fine with one or two flights of stairs, but an elevator or ground floor room is preferred. Confirm your options when booking.

If we will be somewhere for a longer stay we look at other amenities and juggle what is important to us. View? Near the pool, restaurant or parking? Quiet location? Affordability? Do you need a mini-fridge for meds? Power?* You need to strike the right balance between being safe and loving the experience and adventure!

We pack a nightlight or two if that might be helpful. If concerned about possibly slippery floors packing a pair of no-slip socks can be handy. If you need to “rush” to the bathroom at night pack a travel urinal, or pads for the bed in case of a possible accident.

*When traveling internationally make sure you have any needed current or plug converters you need for your medical or other electronics!

private vs group travel

A private tour for just us offers the greatest flexibility in where you go and when. The guide/operator can customize the vacation around the things that are important to you, at the times of day that are best for you, with any anticipated PD challenges taken into account. Be up-front about your abilities and challenges and really talk about the things that are important to you. Listen to their suggestions too though as there could be opportunities you hadn’t considered.

We have twice taken private wildlife safaris in Africa: once in Tanzania, and again in Zimbabwe, Botswana & South Africa. We also recently did a private tour, with 2 friends who actually planned the trip, to Sri Lanka and India. Private travel costs more, but there is so much to recommend it too.

The group tours we have joined in the past few years have either been tours I organized through my company, or on some of our travel partners where I knew activity accommodations would be easy to plan for. The biggest things I want to take into account is no necessary long walks, or unavoidable long periods of standing.

Group travels on an expedition ship mean that a dozen or more guides/naturalists will typically lead excursions at each landing site. Some of these will be hard, and some easy, some geared towards different interests and others more for relaxing. Mike and I would often split up on these if we felt he would be safe and more than capable on his preferred outing (meanwhile I’d go for the wildlife, which often meant the longer hikes). Sometimes, like our 2023 return to Antarctica, the conditions on land were so difficult (huge snowfall making all landings unexpectedly challenging) the ship offered zodiac cruises along the shoreline for anyone not up for the landings.

traveling with friends

Traveling with friends means more people to share the adventures with. More camaraderie, and also more helping hands. Our last two big international trips were both with friends.

In 2024 I retired/sold Galapagos Travel and for my retirement party 14 of us went to Ecuador and the Galápagos Islands. Definitely parts of the trip were “too much” for Mike, but we knew that would be the case going into the adventure. Thankfully he had been to all of the various destinations and visitor sites in the past so even if there was something he couldn’t do, he could share in the group’s enthusiasm when they returned from outings. On some outings both easy and challenging excursions were offered and usually he wasn’t the only one opting for the easy option. Meals and down time on the yacht between morning and afternoon outings allowed for shared time with friends and family. Meanwhile in airports seemingly everyone had an eye on Mike and I and our luggage!

Early in 2025 we enjoyed a custom tour of Sri Lanka and India with two friends (one of whom was a luxury travel planner). Between the 4 of us there were two more active, and two more content to relax so it worked out beautifully. While two of us kayaked across a lake the other two were driven around where we could meet up for lunch for example!

tour adaptations

We have consistently been amazed at what tour operators, guides, lodges, gatekeepers and others have done to give Mike the best opportunities to make the most of a destination.

On our tour to Zimbabwe, Botswana and South Africa the tour operator had contacted all the lodges in advance to make sure we always had cabins closer to the main lodge so there would be less walking required.

In Zimbabwe we were able to hire someone to push a wheelchair around all the trails at Victoria Falls. Yes, Mike might have felt a bit silly sitting in the chair all that time, but it also made it possible for him to see a couple of miles of trails along the top of the falls.

At Table Mountain in Capetown we could borrow a wheelchair to explore (no pushers there however so that fell to me!)

In Sri Lanka at the Temple of the Tooth (a UNESCO site) our guide got the gate keeper to call a golf cart for Mike to get to the complex, where he was then taken up a service elevator inside the temple, to visit the main room with a relic of Buddha’s tooth.

Mike is also great at taking a break when feeling a need for that - maybe skipping a morning or afternoon activity to rest, or getting a massage while I’m out doing something.

Where to now?

With time it becomes harder to plan ahead, never knowing how Mike might feel in a month, let along six months. For the moment we have a couple of short domestic trips scheduled. Our flights will be non-stops to make them as easy and painless as possible, even though that means driving to SFO and Oakland, rather than flying out of the closer San Jose airport. I have started taking out at least partial Travel Insurance for our pricier trips. So far though we’ve never had to cancel a big trip - knock on wood.

We’re on the lookout for another African safari. Safaris are one of the easiest of travel adventures out there: you get driven around everywhere you go, stay in posh camps, and see amazing things. Essentially you are more-or-less hand held through everything while in the country. I’m also thinking we might try an Indian tiger safari - the concept would be similar when at the game lodges, but there could be some intense days in the cities at the start and end of the trip (although we’ve seen those cities, so we could skip that and relax at the hotel those days).

There are always those train trips I mentioned…

If I could put together a private tour to Rome I’d still do that - we’d just need to find a way to structure is to allow sufficient down time.