Recalling the gentle tug of a trout on my line under the vast Montana sky, I, Chris Kustanbauter, understand the thirst for travel adventures, especially when Parkinson's is your constant companion.
Our latest episode is a trove of insights and personal stories, such as a memorable family journey to the rolling hills of southern Italy, which illuminate the essential steps to craft an accessible and delightful travel experience. Surmounting physical limitations with careful planning, we delve into the importance of considering terrain, securing appropriate transportation, and choosing activities that are not just feasible but joyous.
Packing light might seem a simple tip, but when you're managing Parkinson's, it's a crucial strategy to combat fatigue—learn why as I recount my travel triumphs and learning curves. Alongside my own tales, we invite listeners to share their own, fostering a vibrant community on platforms like fanlist.com and liveparkinsons.com. No matter where your wanderlust leads, this episode is a testament to the spirit of exploration and the meticulous preparation that can make the world your oyster, even when Parkinson's is part of the journey.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
Recalling the gentle tug of a trout on my line under the vast Montana sky, I, Chris Kustanbauter, understand the thirst for travel adventures, especially when Parkinson's is your constant companion.
Our latest episode is a trove of insights and personal stories, such as a memorable family journey to the rolling hills of southern Italy, which illuminate the essential steps to craft an accessible and delightful travel experience. Surmounting physical limitations with careful planning, we delve into the importance of considering terrain, securing appropriate transportation, and choosing activities that are not just feasible but joyous.
Packing light might seem a simple tip, but when you're managing Parkinson's, it's a crucial strategy to combat fatigue—learn why as I recount my travel triumphs and learning curves. Alongside my own tales, we invite listeners to share their own, fostering a vibrant community on platforms like fanlist.com and liveparkinsons.com. No matter where your wanderlust leads, this episode is a testament to the spirit of exploration and the meticulous preparation that can make the world your oyster, even when Parkinson's is part of the journey.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
Hello and welcome to Live Parkinson's. I'm your host, chris Custombatter, and I've been living an exceptional life with Parkinson's for the past 14 years. The mission of this podcast is to help as many people as possible living with Parkinson's live a great quality of life. Now, today's topic is Travel Hacks for Parkinson's Creating Accessible Adventures. Remember the time you almost missed your flight because of tremors, or the frustration of getting on public transportation with slowness and freezing? We've all been there. Well, what if I told you there's a way to travel confidently and comfortably with Parkinson's? This episode is your one-stop shop for creating accessible travel with Parkinson's. We won't cover travel hacks that make a difference and get you ready to pack your bags and chase your dream travels.
Speaker 1:
All right, let's dive in and get the tour bus rolling. Let's start with the most important part of our journey planning and preparation. So let's start with the end in mind. The first thing we need to do is, of course, start with our destination. I mean, after all, it's hard to plan a trip if you don't know where you're going or when you're going. Am I right? And when choosing a travel destination, it's important to select places that you have an interest in and you want to see a course, but it's also important to think about the type of travel or vacation holiday you want to experience. For example, are you looking for a relaxing trip like going to the beach, where you sit in the sun, read and maybe have your chair and let the waves wash up over your feet and you're just enjoying your downtime? Or are you looking for a guided trip where you experience many cities, towns and experiences over several days? Are you looking for an educational trip? You get the idea Now.
Speaker 1:
For me, one of the big things on my bucket list was to take a fly fishing trip for trout on some of the famous trout streams in Montana, and I was able to do that this past summer because I took about nine months to plan the trip with my brother and I, and it was a great trip. It all extended from preparation we prepared Pacific rivers that we wanted to fish, how we were going to fish them, whether we were going to use a guide boat or whether we were going to be able to fish from the banks. So what's your ideal trip on your bucket list? So, now that we've figured out our destination, some of the things that we want to look at while we're selecting our destination is first, is terrain? Is the destination where we're going hilly? Is it mountainous? Is it flat? How easy is it going to be for us to manage the terrain based on our current health status? Is the terrain something we feel comfortable with and confident in getting around from location to location during the entire course of the trip, and do we need special assistance to help us navigate during the trip? So there's just some of the things that you want to think about in terms of terrain.
Speaker 1:
And then transportation options as part of the trip. Do you need to use public transportation frequently, such as do you need to fly? Do you need to take trains, buses, taxis, and do you feel comfortable navigating platforms for trains or getting onto buses or getting through busy airports and getting down the jetway yourself? These are some things that you want to think about when you're selecting your destination. So, for instance, I'll go back to my fly fishing trip to Montana. We took several different transportation options. We flew from Baltimore to Denver, denver to Bozeman, montana, and we rented a vehicle, and my brother and a friend that went as well did all the driving, and then we spent most of the time using our rental car, but we also rented drift boats and we drifted a couple of the rivers out while we were on our fishing trip.
Speaker 1:
And then, finally, accessibility of activities. Are you comfortable with the daily excursions, both in the length of time, from the morning until evening you will be away. So let's imagine you're on a cruise and you do a guided trip or you're taking a group travel trip on a bus. Do you feel comfortable, from early morning to evening, being able to participate in the activities, or do you need to build downtime into your activities? Those are some important things that you want to consider. And do the activities that you want to do on your trip make the necessary accommodations for you and your current health conditions? So, does the leader of the group or the excursion or your caregiver? Can they help you make accommodations so that you can experience what everybody else is experiencing?
Speaker 1:
Now let me give you a personal example. My son and daughter went to culinary school in southern Italy and when they were graduating, we went over for the graduation ceremony. And then, when we were done with the graduation ceremony, we traveled to a region of southern Italy near the heel of the boot, called Bari, the Bari region, and we were vacationing there with my brother and sister-in-law, and then my daughter had some friends that had come over and my son and his fiance at the time it's his wife now and when we were planning the trip we were able to book some private transportation to some specific outings that we wanted to do. One was at a working farm and we were able to an olive oil farm and we were able to get private transportation to and from the farm. So we made our own pasta from scratch. We actually made the pasta and then they taught us how to make the different shapes. So we made both spaghetti and orichetti and then they took the pasta that we made and they cooked up a meal for the entire group. So that was a way that we were able to cut down on using public transportation and for relatively the same cost. When everybody that was on the trip pitched in towards the cost of the transportation had made it very cost effective. And then one of the benefits of this is it helped me stave off fatigue and some of the motor symptoms that I might have if I had to jump from one type, so if I had to jump from a bus to a train, back to another bus, and eventually I'm going to get fatigued and that's going to make my motor symptoms worse. So this was a way that we were able to, that I was able to do it. We all had a great day, and one that I'll always remember, getting to spend time with friends and family while keeping Parkinson's at bay.
Speaker 1:
So, by doing some research upfront, you can often find affordable transportation. By doing web searches or contacting the place you're staying and asking for, if they know, some reasonable transportation Now, in addition, there are a few online resources to help you find accessible destinations to travel to. These include accessiblegocom and wheelchair accessible planet. Now let's take a look at transportation options and their accessibility features. One of the things that you want to keep in mind is that choosing the right type of transportation depends on your individual needs and your specific destination. So let's discuss some of the more common options that you may experience, and we'll start with air travel.
Speaker 1:
Many airlines offer accessible seating with extra legroom and Iowa access If you book in advance and you specify your requirements when you're booking your ticket. So a lot of times, you're able to reserve those seats to give yourself more legroom and, if you want to sit on the aisle, to make it easier to get in and out of your seat and the plane. In addition, most airlines will allow you to pre-board if you tell them you have Parkinson's and that it takes you longer for you to get onto the plane and get situated. For example, I fly Southwest Airlines frequently. My son and daughter-in-law used to live in Charleston and we have some family down in Florida, so I usually take Southwest Airlines and when I check in I just tell the desk agents I have Parkinson's and I tell them that I have a little more of a difficult time with slowness and getting onto the plane and getting situated. So they give me a pre-board ticket and it allows me to pre-board the plane. Before the the masses and it takes, I can get on and get in my seat and get comfortable before the normal boarding process and then airport assistance in the form of wheelchair assistance and electric carts and boarding assistance is also available at most major airports.
Speaker 1:
Now, in terms of train travel, for people wanting to see the countryside when getting to their destination or when, if you're just going between destination to destination, trains are a great way to do this. Now, when you're booking your trains, you want to look for trains with accessible carriages, with wider doors, lower platforms and accessible toilets. You can book accessible tickets in advance to ensure availability once you arrive at the train station. That way, you don't have to worry about arriving at the train station and then finding out that you aren't able to get the seats that you want. Now I've been fortunate and I've been to Europe several times for both work and vacation, and I have to say that I'm very impressed with the train travel in Europe, since many people travel by train. I found the trains to be on time but also very easily accessible to board. In fact, most of them had platforms where you would walk straight from the terminal straight out onto the the boarding area, and then many of them you could walk right directly onto the train from there. Some of them you had to one or two steps, but in addition, once you got on the train, cars were very had wide aisles that were easily accessible for people with disabilities, and they also had special luggage areas. You could put your luggage at hip level or lower. You didn't have to lift it above your head to try to fit it in into the overhead compartments. Now, I'm not bashing travel in the US by train, because I've traveled many times on Amtrak in the US to different cities, just that I believe that Europe has such a great transportation system because, then again, the number of people using the train system and I talked about the, the luggage storage as well as a benefit that I see, but for those of you that want to travel by train in the US, they offer great options as well.
Speaker 1:
Now let's talk about buses. Most inner city buses often have wheelchair lifts and dedicated handicap spaces for people with Parkinson's to utilize if you absolutely need it. A few things to consider with bus travel is that often there are no assigned seats and they can be crowded, and sometimes that leads for people causing you to stand where you might have to hold on to a bar or a hook or something like that until a seat becomes available. However, most of the buses do, if you do some research to determine which buses going to your destination have assigned seating, and sometimes you can buy tickets with assigned seats to ensure that you get a seat or you're able to use the handicapped or disabled seats that are available on the bus. Now, taxis and ride shares. So taxis have been used in the past in all major cities, but apps like Uber and Lyft and YFT have really exploded in the past several years and they allow you to filter when you're selecting a ride to your destination. You can actually go in and filter for wheelchair accessible vehicles and you can book those in advance so that you're making sure that they're available ahead of time.
Speaker 1:
Now I'll give you a personal example where I learned this past summer when we were on our fly fishing trip. The hotel was about three miles from the airport and we had to return the rental car the night before, so we needed to get a ride to the airport in the morning and we needed to be at the airport at about 5 am for a 630 flight. The problem was we called about seven or eight different taxi services or car companies to get a ride to the airport and nobody was able to offer a ride. They said they were booked or they didn't have people that wanted to get up that early. So we got a ride with Lyft back to the hotel and well, on our way back we were talking to the Lyft driver and he said that you can actually book in advance a ride to the airport and someone will get back to you letting you know that they'll be there. So, sure enough, I went on and I booked the the ride in advance and said that we needed to be picked up at 4.15 at the hotel, and in the morning at 3.45, I actually got a text message from the driver. He said he would be there in 10 minutes and, sure enough, he was actually 15 minutes early and I picked us up and gave us a ride to the airport and we were able to catch our early morning flight back, and it was a really great experience. So that's where, sometimes, when you do a little bit of networking, you're able to find out things maybe that you didn't know and in this case I didn't didn't know that the ride sharing you could actually book ahead of time. So that's an option as well.
Speaker 1:
Now let's take a look at reserving personal vehicles or vans. Do some research on some of the rental companies that offer disabled access for both you and your group when traveling. I gave you the example of our Italian trip to the working farm. So use the same service to rent a van to a trip to the winery, and they picked us up, took us to the winery and then waited and gave us a ride back to the Airbnb that we were staying at and we all had a great experience and plus, we learned a lot from the driver. The driver the van driver was was fun and gave us a little history of the area on the way to the winery. So if you book in advance and tell the company your specific needs, they can be very accommodating. So some keys to remember.
Speaker 1:
You want to research, early research, specific accessibility options to meet your specific travel and health needs. The earlier you start, the better you are in terms of where you need to be Clean ahead. You want to book assistance services and accessible tickets in advance to avoid last minute hassles. That's the worst is when you get to a destination and you're all ready to go and then you're trying to book something and you're having difficulty booking it. Everybody's stress level goes up, your symptoms get aggravated and it just makes the triple miserable for you and the people you're traveling with. So if you can avoid last minute hassles, that's a great thing. Consider comfort Choose options that prioritize your comfort to help minimize fatigue, especially on long trips. If you can get extra leg room on a bus or a plane or a train, that's great, or if you cannot, for wider seats, those are all great options as well. So keep your comfort in mind when you're planning your trip as well. And then rest stops you want to plan in frequent rest stops to help manage fatigue. That way you're not overdoing it and then you're tired for the rest of the trip. Okay, now that we've selected our destination, we've planned and we talked about the different types of travel that we may utilize during the trip.
Speaker 1:
Let's take a look at packing for the trip. One of the first things that I ensure is that I pack my medication and insurance cards. So that's number one. Now, since I take a number of medications to manage my Parkinson's symptoms, I get these pill packs made up by one of the local pharmacies. It's a free service that they offer and these pill packs are. I get them sectioned in time a day. I take them for the entire day. So, since I take medication six times a day, I have six little individual pill packs that are labeled with the time I'm supposed to take it morning, mid morning, noon, afternoon, evening and bedtime, and then also the medications that are in the pill pack so that I can look at them quickly and make sure that I'm taking the right medications. But the benefit of those is, when I'm traveling, I can. If I know I'm going to be gone for a week, I just tear off one sleeve, which is a week's worth of pills. Now, many pharmacies in your area may offer the service, some may not, but Amazon also offers it. I think it's a free service. Well, there are pill packs for you as well, and so it's a great option for making sure that you take your medication with you. It's well labeled.
Speaker 1:
Now, if you don't have pill packs and you're traveling to different countries, make sure that you keep your pills in the original containers provided by the pharmacy that are clearly labeled with the time I'm supposed to take them and that are clearly labeled with the medication, the name, the dosage, and that'll help keep you out of trouble with both customs and immigration. You don't want to just be throwing your pills into different containers, because it may get you stopped at immigration and customs and they may be asking you what all these medications are or what are these drugs for. And it may be helpful for you to get one of those medication organizers by day. Some people use those with good success as well. And then you want to be sure that you pack comfortable clothing and any assistive devices that you need, such as a cane or braces or those type of things.
Speaker 1:
Now, to make it easy on yourself, don't overpack. To help prevent having to lift heavy luggage throughout the entire trip. That's going to cause fatigue and some other issues. So pack what you need, but try not to overpack. As a suggestion, I like to create a checklist of essential items that I need to pack, and then I check them off as I pack them, so it helps ensure that I don't forget things, because my memory isn't what it used to be. I'll be honest, and I know I'll forget some things if I don't have a checklist. So I'll go down through the checklist and then that way I feel a lot more comfortable when I leave for the trip too, because I know I've packed everything.
Speaker 1:
Now let's look at travel insurance. There are options for travel insurance that cover the needs for medical emergencies and trip interruptions. Now I'll be completely honest. I personally don't select travel insurance for 99% of the trips I'm on. I guess maybe it's because I'm frugal and I don't want to spend the extra money on it. But if you do decide to get travel insurance, you want to look for a reputable travel insurance company that specializes in coverage for people with preexisting conditions. Now let's look at some travel hacks and resources you can use to plan and enjoy your trip. So number one is download a different checklist for different travel stages, as this can help you include accessible transportation, hotels and other things that are of necessity to help you with your trip.
Speaker 1:
Now there are a number of apps that you can use on your phone or your tablet that help with accessibility, and you can use these apps as part of your travel and it's going to give you a smoother travel experience. The first app is called WheelMap, and it's an app that focuses on finding accessible places and not only maps out accessible places like your restaurants and your shops all over the world, but it uses the information from travelers and the app users to keep it the information current, so people that use the app a lot of times will provide information to keep the app current. It's available in 32 different languages and it's a great way to help you find hotels, restaurants and shops anywhere you want in the world. Another app is called Access Now, and it's similar to WheelMap and includes accessible restaurants, hotels and shopping, so that's important as well. There's another one called WheelMate, which is an app for parking spots and restrooms anywhere in the world that you're traveling. And then, for people that have dexterity issues, you can use Google Assistant or Siri or your speaker option on your phone or your tablet to talk and use voice texting to bring up the information that you need if you're having dexterity issues with trying to type. And then, finally, google Maps. That can help you, people in wheelchairs, navigate cities by showing elevators, ramps and street views to help you identify some of the accessible areas, and it can also help identify public transportation that is best suited for the wheelchair accessible. If you click that in the field, click Wheelchair Accessible, filter it and it'll bring up those places.
Speaker 1:
Now, some travel blogs and websites that are good options for you to get some information is the Davis Finney Foundationorg, and they have a blog called how to Travel with Parkinson's. The Parkinson's Foundationorg has eight tips for traveling with Parkinson's, and then DriftTravel Magazine at drifttravelcom has an article on how to travel with a Parkinson's patient. So there's a lot of different options out there for you as well. So, as we conclude, you want to embrace the travel blog even with Parkinson's. So in this short episode, we learned tips on how to choose accessible destinations, how to navigate transportation and how to pack like a pro. We gave you some personal stories on traveling with Parkinson's and then, finally, we gave you some hacks and resources that you can use to plan and enjoy your trips and journeys with Parkinson's.
Speaker 1:
Now, remember, the world is waiting to be explored. You can achieve your travel dreams with proper planning. Planning is the key. Now go, share your travel dreams and, if you don't mind, go to fanlistcom, live Parkinson's Life and share your travel stories, and then join the online community. I'd love to hear from you, I'd love to know what you're interested in, what topics you'd like to hear, and then visit my website, liveparkinsonscom, or visit me on Facebook on my Live Parkinson's Facebook page. Plan your next adventure and use the resources and tips that we shared in this episode and start planning your accessible trip now. Together, let's prove that Parkinson's doesn't have to hold us back and, as the saying goes, make the world your oyster. It's time to explore travel possibilities. Thanks again for listening and I hope to see you on future podcasts.