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MS and overseas vacation experience

  • By brauckmiller

    Hello all. I posted a while back about traveling with MS on vacation. Didn’t really get a ton of replies, so I figured I’d share my experience with my wife.

    We did a first class vacation this year. 11 Night Cruise of the UK, Iceland and Scaninavia. We also spent a couple days in London before the ship left from Dover.

    Airlines
    ============
    We flew first class with British Air. I was very clear with the airline that we’d need help with the wheelchair. BA was great about this. At every airport, we were paired up with a person who pushed my wife’s wheelchair. We were taken through to the handicap lanes and helped us get everything onto the belts for scanning as well as escorting her to the security checks while me and my daughter went through normal security checks. They took us either to the BA lounge or right to the gate depending on timing. When we came back to the US into Boston, they aide even got us through customs in no time flat. I recommend tipping these people given the amount of aggravation and time they saved us. They were invaluable in Copenhagen. That airport sucks. So, the best advice here is tell the airline you need wheelchair assistance.

    On the Plane
    ===============
    Given we were in first class, we did have the option to take my wife’s chair onto the plane. This was nice given it sped up recovery of the chair when we got off.

    Assistance was about 50/50. I ended up having to transfer my wife into and out of her seat. She’s on the heavier side and the folks were struggling. So, we worked as a team. I told them what to do to help me and they did a great job. Don’t be afraid to take charge of the situation. Tip these folks as well given the assistance they offer.

    My wife has a catheter with a leg bag. We were on a 6+ hour flight to/from Europe. Since she cannot transfer, we bought a plastic bottle with a lid on it. I was able to empty her bag without too much difficulty. Again, as we were in first class, this made it easier as the seats were farther apart. I used by body to shield the process and had a plastic bag that I hid the bottle in while I took it tot he bathroom to empty. Rinsed it out a couple times to ensure no odors would be noticed. If you have to fly coach, I’d suggest getting a blanket to provide a bit of privacy for you and your companion. Failing that, the airline should have an aisle chair to help move your partner to the toilet or into a more discrete part of the plane. Be up front with the cabin crew and they will make life so much easier.

    Hotels
    =================
    When you make a reservation at your hotels, ask for handicap accessible rooms. All major hotel chains can usually accommodate you here. The primary piece of the room that is accessible is the bathrooms. They will vary from having a roll-in shower to sinks that have clearance under the sinks so you can roll up to them. Some hotels even offer panic cords you can pull to get assistance. You may need to tell the hotel to “arm” them so that someone will know if you pull it. They disable this to prevent false alarms if a kid happens to yank on it. Check with the hotel for details.
    Thresholds are your enemy for wheelchairs. Hotels in Europe seem to have issues with these. While not huge bumps, they can cause issues trying to get over them. Use caution the first time you go into the room.

    If your partner has trouble moving on their own, I suggest you bring a bed strap (probably a better name for it). If possible, you can loop one end around the bed leg and this will allow your partner to help roll-over. We have this at home for my wife and it is a big help. Transferring in/out of bed into the chair is tricky as you won’t have a hoyer with you. Use a gate belt if you don’t have one already as a backup. If your partner can transfer by means of a slide board…be sure to pack that as well.

    London Taxis
    =============
    Ok, so this was the biggest pain for us. In London, the black cabs are wheelchair accessible. However, once the chair is in the cab, there isn’t a ton of room for much else. One person and maybe a suitcase. We had to split up into two groups. My wife and daughter in one cab and me in the other with our bags.

    If you book everything through a cruise operator like Disney, they can handle getting you transport for you and your partner. They’ll hire a private van to take care of you. We didn’t do that. I’ll explain that later.

    Transportation in other cities
    ===========================
    If you are not going to use the transport services offered by the cruise line, use Google to check the transport options in the cities you’ll be traveling in. Call in advance and verify that they offer wheelchair service. If your partner cannot walk or self transfer, you must be very explicit about this. More often than not, they assume you can transfer into a car and they’ll put the chair in the trunk. You need to be very explicit even when you get to the destination…keep restating that “he/she cannot transfer”.

    Disney Cruises
    ======================
    As I’d mentioned before, we went first class on the trip…so we booked a suite on the Disney Magic that was wheelchair accessible. When I booked the trip, I was very explicit in our needs. They were very helpful for the most part.

    Now…that being said..this next part is not really important to the accessible part of the trip per se, but it did add to the complexity. When we booked initially, I booked EVERYTHING through Disney including the hotels.

    The upside is that if you do this, they will get you to and from the airport including the use of a private van for wheelchair access.

    The downside is that they take you to the cleaners on the cost of the hotel. We stayed at the Grovesnor House in London in the Mayfair district. 5 Star hotel that is a Disney affiliate property. We booked a handicap accessible room for my entire family for $3,000 for 3 nights. I later called the hotel and asked about the rates if I booked two rooms. When I booked outside of Disney, I paid $3,000 for 3 nights and got TWO rooms. The downside of doing this was that since I didn’t book the hotel with Disney, they would not pick us up at the airport. We had to make our own arrangements. Now, the funny / stupid part is that Disney DID arrange for us to get from the hotel to Dover. They hired a private van for us. I have no idea why they do it this way, but it is what it is.

    So, it is up to you how you want to use this information. In the end, it worked out for us and I don’t really regret doing that as it saved me $3,000

    The Ships
    ======================
    The ship was absolutely great at helping with everything. Only place my wife could not go was to the captain’s balcony for concierge guests. Everywhere else was accessible. Elevators were large enough for us all to fit on. Just be prepared to be patient. You may have to skip several elevators as they may have people already in them. Give yourself extra time to get to activities on the ship to account for elevator waits.

    Getting on/off the ship was easy as well. The gangways are all accessible. Most of the time, they’d have a crew member take my wife down the ramp. On smaller ramps, I could manage it without assistance…but let them make the call.

    Disney Excursions Ashore
    =======================
    Be up front with Disney and verify that any excursion ashore be accessible. There will be times, however, that they cannot accommodate your party. Europe does not have an equivalent law to the US ADA. So, they are not required to provide wheelchair access. There were two stops on our tour where this was problematic and my wife ended up staying aboard while my daughter and I went ashore.

    Do a lot of research if Disney can’t offer a handicap excursion. Many times, you can hire private companies to handle this for you, but the cost will be paid by you…not Disney. Also, if your tour is late getting back to the ship, Disney will not wait for you as the tour was not managed by them. In Sweden, the ship had to wait for me and my daughter as our tour was late coming back, but if we had booked privately, we would have had to make arrangements to meet the ship at the next port.

    MS and the Trip
    ================
    My wife brought all of her meds with her in an overnight back as her carry-on. DO NOT CHECK YOUR MEDS THROUGH IN YOUR LUGGAGE. Be sure that the pills are in their original bottle with the prescription label intact with their name on it. This wasn’t really an issue, but meds like Provigil are a controlled substance and this could be problematic if they search your bag and find pills in a plain plastic bottle or, god forbid, a plastic baggy. 🙂 As she has a cath, we brought two extra cath kits with us in the event something happened. Bring all of the supplies you need to perform your daily rituals. I didn’t bring enough gloves for her bag changes and had to beg some from the on-board doctor. They were very good about giving them to me when I explained the need.

    I think that about covers my tips and hints. Your mileage may vary. Items in the mirror are closer than they appear. Etc, etc, etc.

    Thanks

    Craig

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  • By brauckmiller

    Forgive the typos…I figured I could edit the post…but…guess not. 🙂

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  • By Janus Galante Moderator

    Hi brauckmiller,
    I found your post to be very interesting since we have not traveled via. flight since before I was dxd. We used to fly to some of the islands, & Central America,etc. the hot and humid places, which I now cannot even imagine!

    I have since wondered what taking a flight/vacation would be like, since we only travel by car now. You give a good description of the logistics and tips to try.

    I hope you both had a great time. It makes me want to reconsider taking (and having the courage to take) a vacation like this, again!

    Thanks again for sharing with us! Janus

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  • By Kim Dolce Moderator

    Hello Craig, I’m so sorry we missed your post in August! The level of detail in your travel experience makes it an invaluable resource for anybody thinking about traveling abroad. I’ll be directly people to your post from now on. Thank you so much for taking the time to share your family vacation with us! Best, Kim, moderator

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