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How many of us have felt that it is impossible to do the things we used to do now that ataxia has entered our lives?
Each of us have had to make concessions that range from minor to seemingly catastrophic. It really doesn’t matter if it was the need to start walking with trekking poles or giving up a drivers license. Every adaptation and concession reminds us that we are having to confront a degenerative disease.
About two summers ago I flew across the country to visit a good friend. I was using my trekking poles for support and when I came home I was exhausted. Moving through Toronto’s Pearson Airport was nauseating. At each end of the trip, I found myself trembling, off-balance, and struggling with coordination for days. I honestly thought that my travelling days were over. And I love to travel.
Six months later, I found myself heading to my sister’s place for Christmas and having to confront the madness of the airports and travel, only this time I opted to use wheelchair assistance to get through the airport to the gate. I was still exhausted upon arrival, but getting through the airport was not as distressing. I thought to myself that maybe what I needed to do was accept that my previous methods were not longer valid and that a totally new approach was needed. For the first six months of 2024 I researched and created my own new style of travelling.
It was like a NASA mission. I made a plan that before the end of the year, I would travel somewhere independently, safely, and with enjoyment. I began by sourcing a new mode of transportation and decided that an ultra-light wheelchair was the ticket. If I was going to be independent then I needed to dump “Smurf” my original transfer style wheelchair for something that was nimble and easy to roll. The wheelchair was the key to getting through the airports and large spaces and would afford me my independence.
I researched online for how people dealt with luggage and wheelchairs. Almost all the videos I saw showed people struggling with a big duffle bag on their lap or some roller bag being pushed ahead of them. I didn’t look easy. Then I found this Scottish company called Phoenix Instinct that created a system of luggage that was towed behind the chair. The reviews and videos spoke highly of the system. I had solved the luggage problem.
I tested my new luggage using "Smirf" on a test flight I was taking to get measured for a new ultra-light chair at Hands On Concepts. I can’t tell you how wonderful it felt to roll up to the airline counter and hand off my luggage without depending on anyone else. A second trip was planned to pick up the new chair. The entire package worked beautifully and gave me confidence to now plan the big trip.
I choose to look into travel companies that specialize in accessible holidays and settled on Wheel The World (WTW). They can create custom trips but also have small group tours. While I was wanting to be independent, I didn’t want to be alone and I decided on taking one of the group tours to Barcelona, Spain in the first week of November.
I love Barcelona having spent a week there when I was free of ataxia, I just don’t remember it being as hilly. It is not San Francisco hilly at all, but there are inclines. The great part is that Barcelona is one of the most accessible public space cities in Europe. From the transit to museum entrances, mobility disabilities have been addressed. Let me tell you a little about this tour and then highlight things I have learned.
After a 19 hour journey from Calgary, Canada through Amsterdam and on to Barcelona (KLM was terrific and allowed me to stow my ultralight in the cabin.), I was tired but excited to see my name on a board held by my WTW driver to take me to the hotel: Radisson Blu 1882 in the Sagrada Familia section of Barcelona.
The hotel was pre-screened by the WTW tour staff to ensure that every room was accessible. In fact, the entire hotel was exceedingly accessible and the staff were conscious of our presence and met our needs with kindness. That first evening we met our tour coordinator and our primary guide for a welcoming drink and snacks. While the tours can be as large as 10 (5 mobility disabled and 5 support/partners) ours was a small group of four.
The next few days were full of personalized tours around the sights of Barcelona. Each day involved about 6 hours of touring, visiting attractions and learning.
Day one was a bit like boot camp as it involved two world renown Barcelona must see attractions: La Pedrera Caixa (Casa Mila) and the basilica Sagrada Familia both designed by Antonio Gaudi. With our expert personal guide Jordi, we experienced these two sights like few others get to. These were visually spectacular, overwhelming sights and honestly I admit that I was very grateful for being able to use my wheelchair. Were I to have stood, wobbled, and looked around, I would likely have fallen over a few times.
Heavy rains made changes to our second day allowing us to visit a mammoth Modernism style hospital, now a museum. It is here at Saint Paul’s Hospital that we learned about how EU countries are now issuing disability ID cards in an effort to ensure those with disabilities have access to facilities free or with little cost. It is also to respond to the alarming number of people who seem to be trying to fake a disability so as to jump lines or use specific access points. Luckily I had my Access2 (Easter Seals Canada) card which got us all in!
High above Barcelona is the Monastery of Monserrat, our third day’s tour. We were treated to a short concert by the Boys Choir, a tour of the monastery and the amazing views from this site that was establish in the seventh century.
A visit to the small town of Sitges allowed us to enjoy seaside sunshine and a relaxing day. Sitges is built on the hillside but the very long seaside promenade is extremely inviting to mobility disabled individuals. With assistance from a friend or your power assists, you can easily roam around the medieval old town’s tiny winding streets.
The next two days focused on city tour sites including a visit to the Roman era ruins of Barcelona, the 1992 Olympic site and the stately 1929 World’s Fair exposition grounds. From there we were able to view the entire city and spectacular rise of Sagrada Familia towering over the city.
Our last evening as wheelchair explorers found us in the Gothic (ancient city) area to enjoy a remarkable tapas dinner, courtesy of Wheel the World and our awesome hosts and guides. You can’t visit Barcelona without a souvenir of the historically important, champion football club.
Pointers for Ataxians
Having a disability means you really have to plan and rehearse your travel. My solo trip meant being totally self-sufficient, including travelling through airports, hotels, and around the city. Here are some things I learned that apply to not only Ataxians with a mobility challenge, but anybody whose mobility is impaired.
Wheel the World was an excellent choice for me. Using an accessible/disabled tour travel expert reduced dramatically my need to plan out every minute and every roll of my wheelchair. From the personal pick up to the drop off back at the airport, everything was checked out, including the hotel (Radisson Blu 1882). This allowed me to focus on the experience, which is the point of travelling. You can certainly do this trip without a tour company, but I can’t imagine doing it solo. WTW also can help you to secure hotels in many cities around the world that have been checked out as being accessible. (By the way, WTW have not paid me to say any of this.)
Pace yourself in your plans and days. We all found that about six hours was our limit. Most Ataxians have an energy limit. Try not to exceed it because we know, it catches up with us.
Be aware that you will be moving your body and head more than you do at home as you take in all the sites of your destination. I find that this accentuates my balance and coordination problems, but by using “Hawk” my wheelchair it made a big difference. I was stable and safe and could freely look around, turn around, and not worry about falling or getting dizzy. It is OK to use mobility devices as you need them, so please don’t be shy. Be safe.
Keep your valuables in front of you, not in a backpack hooked on your chair or rollator. Big cities have skilled pick-pockets who do not differentiate between able and disabled targets.
Tourism is maxing out destinations. If you plan to visit attraction sites, order your tickets well in advance. Every major attraction in Barcelona was sold out and this was low season! A tour group company can secure these for you. If you order your own online, be sure to only order from the attraction site as there are many ticket scam sites in every city around the world. Reading Rick Steves Barcelona tour book in advance was a great primer for my trip.
Ordering any medical supplies you might need and have them delivered to the hotel. This preplanning saves you hauling stuff in your luggage that you will use and dispose of. Incontinence supplies is a good example. The pharmacies don’t necessarily carry supplies and finding a medical supply outlet in a big city can waste valuable tour time. I found a supplier in another EU country who happily shipped my supplies to our tour host’s address. I had another item shipped directly to the hotel. I asked if this arrangement was acceptable to both before placing the order.
Europe is like Canada and Australia in their reliance of plastic cash. Take enough local currency for tips and charge the rest. If you need to exchange money in country be aware that many of the exchange outlets could be overcharging. Check the Google reviews of the location before handing over your money.
Lastly, when visiting museums or other attractions, I suggest that Ataxians be aware of moving visual displays or flashing lights. I was caught off guard twice on this trip. Even in my wheelchair, I experienced a sense of falling backwards and dizziness when along side a moving large screen projection. It was only disconcerting and easily resolved by looking down and away.
Worth it?
There was a point about two months before my departure that I felt afraid and that my confidence seemed shaken. I often read posts on our FB feeds from people who are wanting to travel but unsure if it is even possible. A fear is that ataxia will be worse when you get back. We all have had experiences with medical procedures or life stress events that have seemed to make our ataxia feel worse, at least for a while. It is not the same for everyone, so I would never suggest you travel without also saying … you know you best.
Have I come back from this trip with my balance and coordination symptoms a bit more elevated? Yes.
I knew going in that that was a strong possibility. But I also knew that staying home and keeping the routine might have exactly the same result. The experience has been worth it. There may be a time in the very near future that it is not possible, or at least a lot more complicated to travel.
I would like to thank Paz from WTW along with our Barcelona host, Carola and our two primary guides, Oscar and Jordi for a terrific adventure. |
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