Navigating an overseas trip with mobility issues

I wanted to write this piece to document my experience travelling with an electric wheelchair and to encourage other ‘MS-ers’ to possibly do the same.

My name is Meta, I’m 46 years old and I was diagnosed with MS in 2000, but over the last 9 years my mobility has worsened so much that never in my wildest dreams did I think I could travel to the US – especially New York.

I can probably walk almost a kilometre using a hiking pole for stability and wearing an ankle foot orthotic to enable my foot to clear the floor safely to avoid tripping, and a few stops along the way.

However, by the end of that kilometre I am extremely fatigued mentally and physically, most probably very grumpy and I would not have enjoyed the walk or my surrounds as I would have had to be looking mostly at the ground to ensure it was safe and stable for me to walk on, or how big a step I would need to take.

Having two teenage girls, they had always wanted to visit the USA. The summer holidays in Australia are quite long and we thought this would be a great time to visit the States. We’d experience a winter Christmas and also, because the temperatures would be on the cooler side, and I wouldn’t be so exhausted and fatigued from the heat as so many people with MS are.

We knew it was going to be expensive and a challenge, especially for me because of my decreased mobility and fatigue, but we really wanted to be able to share this experience as a family. We started planning and decided we had 3 weeks and would like to go to Los Angeles, Palm Springs, Las Vegas, Memphis and New York.

My husband put it out there that for us all to enjoy the trip we should take a wheelchair. I was apprehensive as I had only used one a couple of times before and had never used a wheelchair travelling.

I reluctantly called my OT and asked her advice. Immediately she was onto it. My husband was thinking I would get a push wheelchair. The OT had other ideas — she advised the push wheelchair would be somewhat more disabling for me. I would have to wait around for someone to push me and only go where they wanted to go and that an electric self-guided one was the way to go. She put me in touch with a supplier of a foldable electric wheelchair.

The company were awesome, they came out to me and I had a trial of it just outside my house. I instantly felt freer. I was able to scoot up and down my street at a great pace. The OT could walk beside me and talk to me instead of behind me pushing me around. To show my husband, we visited the supplier and they allowed me to borrow it for half an hour and use it around the shopping centre.

Again, we instantly saw the benefits as a family. We were able to go places together. I wasn’t getting physically or mentally tired, struggling to keep up with them, or getting cranky as they walked further and further ahead of me.

We went away from the trial really happy that we’d found something that would suit our needs. We did some further googling and with the help of my OT and the NDIS, I purchased the right electric wheelchair for me. So that was it. I was sorted. We were going on an overseas holiday and I was taking a wheelchair with me!! Ahhhh!!

Here’s a few tips to help you navigate your next holiday with MS, based on my own experiences in the US:

Booking flights

• You will need to tell the airline that you are carrying a battery powered wheelchair.
• Each airline has an online form that you’ll need to fill out. Often doing a google search for “battery power wheelchair” and your airline name will find the relevant web page.
• If you are on multiple flights with different airlines then you need to do this for each airline.
• With some airlines I found the approval process can take as long as a few weeks however I did find you could expedite the process by calling the airline directly.
• I booked our flights through Webjet. All interactions I had regarding wheelchairs were directly with the airline (not Webjet)
• If your flights require a stopover and that stopover airport has multiple terminals (e.g. Sydney) then consider booking your flights so that you have a generous amount of time to make the transfer between terminals. Webjet offers this ability as you can look at alternate options for flights. For example, we allowed 3 hours to transfer at Sydney airport. Our first flight was one hour later and we (and our luggage) only just made our transfer on time.

At the airport

• In regards my wheelchair - Airlines offer the option of checking in the wheelchair at the check-in desk or at the gate. We were advised by someone that they had their wheelchair damaged when checking it in at the gate, and so we chose to do it at the check-in counter. If you do this then be sure to have requested a wheelchair in your booking to get you to the plane.
• The other advantage of checking your wheelchair in with your luggage is that you are then provided with a wheelchair from the airline and taken to the gate by one of the staff. They know all the shortcuts!

Check in

• Make sure you arrive at the airport with plenty of time up your sleeve. Usually go with the time the airline recommends.
• Lithium batteries have a high risk of exploding or catching fire. As such the batteries must be taken as carry-on luggage. Whereas the wheelchair will be stored in the cargo hold. You will need to place something over the electrical contact points. In our case we just used a strip of electrical tape. In addition, the two batteries need to be placed separately into bags. In our case we used two padded post pack bags bought from the post office.
• Even if you do not usually require a wheelchair usually or are not taking a wheelchair with you, my NUMBER ONE piece of advice is to make sure when booking your airline ticket that you let them know you will need assistance to get to the terminal/gate. Requesting wheelchair assistance at the airport is imperative. It could be a couple of kilometres to the gate. It’s so much easier, stress free. It is a saviour – game changer.
• Also, customs lines can be extremely long and in a wheelchair, you get priority and you and your family get to go to the beginning of the line. You have to be checked out more thoroughly by the customs officers but this is no issue if you’ve avoided standing and lining up for an hour or so. It also was the only reason we made our connecting flight in Sydney — we even had a special buas take us out onto the tarmac for us to get to our plane on time — amazing!
• When we arrived at each airport, we went to check-in and advised them that I would need assistance to the gate and that we had my wheelchair to check-in. We had also advised them of this when we purchased the tickets.
• This meant that we were given another wheelchair (it usually came with a staff member who knew all the shortcuts) to take me to the gate and preferential treatment getting through security. And then when you arrive at your destination, another person with a wheelchair will meet you at the planes exit and they’ll help you to get through customs and get your luggage.
• Checking in on a wheelchair they will always do a thorough check of you – they do prefer you to walk through the security check point, but they also always do a pat down of me and a bomb check. Think this was more because I wear a carbon fibre AFO (ankle foot orthotic) on my right leg rather than the wheelchair.
• At some airlines to go through security passengers were asked to remove shoes – I told them that that was very difficult for me, and they were able to do other security checks instead.
• In Australia the check in staff must call CASA and request approval for the batteries to be carried on the flight. You’ll need those CASA approval details to take the batteries through airport security so make sure they write them on your boarding pass. In the US they do not have this requirement.
• Be sure to ask where you will collect your wheelchair once at the destination. Usually, it will be at the oversized luggage collection point. However, in one place they had it at the gate — so best to double check.

Hire cars

• Be sure to consider the wheelchair size when booking a hire car. In the US we found the standard SUV range through Alamo allowed the wheelchair and 3 cases to fit nicely. In terms of the specific cars, we had a Ford Edge in one stop and a Jeep Cherokee in another.
• You need someone reasonably strong to lift it into and out of the car. It is easier to lift with 2 people and I was able to help on a number of occasions.

Taxis and Ubers

• Be sure to book taxis and Ubers that will be able to fit your wheelchair and any luggage.
• When booking with Uber we made sure we chose the Uber XL option and that was good, although sometimes it was very tight when going to or from airports.
• Some cities (like New York) do have specialized taxi services for people with wheelchairs. We never used them but check into this further if you are interested.

Hotels and accommodation

• Make sure your accommodation has lifts if you are not on the ground floor.
• At some hotels they offered ‘accessibility’ rooms. We never used one and found that we were able to still use them effectively.
• A lot of accommodation in the US we found is a shower over a bath, rather than an easy walk-in shower. Be sure to check first if you have mobility issues that would cause you issues with this. My husband would often help me in or out.

Charging the wheelchair batteries

• Remember to take an overseas power adapter to charge your wheelchair.
• We would recommend that you charge it every night as i) it takes a long time to charge and ii) the power level doesn’t seem to be that accurate in indicating the power remaining. I.e. most of the time its green but as soon as it goes to yellow it doesn’t take that long before its red, and then runs out!
• We were told to always take the charger (and travel adapter) wherever we went. That way you could stop at restaurants and other places and potentially charge it (if needed).
• In terms of charge the wheelchair is able to cover very large distances of up to 18km. We found this was enough (even in New York) where you’ll be covering huge distances on footpaths.

Trains and buses

• For each city you’ll need to check what wheelchair services they have for public transport.
• Some train stations are classified as accessible and others are not. Beware that for those that are not accessible usually means you need to carry the wheelchair up and down stairs. Some people were nice enough to assist a couple of times. Other times my husband had to carry it up and down the stairs himself or with the help of my daughter.
• Even be aware that it’s not uncommon for lifts to be out of order in accessible stations, as we found on several occasions in New York and Las Vegas.
• There is often a gap between the platform and the train carriage. Some trains offer ramps from special positions. In addition, some platforms have raised areas that reduce the gap. Usually, I would get out of the wheelchair and walk into the carriage whilst my husband pushed it on and off.
• You’ll need to check if accessible buses in cities are available. We used this in New York. The buses are able to lower and they have a ramp that slides out to allow you to drive the wheelchair on and off. Amazing!

Visiting tourist attractions

• Almost all tourist attractions have accessible options. This might include things like:
  • Discounted or free tickets for you and/or a carer.
  • Special entrances and exits that are wheelchair friendly.
  • Lifts, toilets, etc
• Like with flights often flagging down a staff member early on can help you jump queues, and help get information on what services they offer.
• Staff usually go above and beyond to help you which is really sweet.

Footpaths

• Make sure you take the curbs with both front wheels facing forward
• Don’t go too fast at the curbs

Shops

• Sometimes easier to park outside or in the corner of the store and walk around as the aisles can be tight. Many stores had a ramp at the entry. Multi storey stores had elevators.

Stairs

• My electric wheelchair couldn’t do stairs and was quite heavy to carry (25kg) – so when we came to stairs my husband either had to lug them up or down himself or on a few occasions with one of our daughters or a Good Samaritan.

Read more about Meta’s journey with MSopens in new tab or for help with falls and balance, visit msplus.org.au https://www.msplus.org.au/news/prevent-falls-with-plus-balance