Traveling with MD - Cruises, Airlines, etc - Need Advice - Muscular Dystrophy Message Board

michigani · 06-29-2008, 10:23 AM

My wife and I REALLY want to go on our first cruise ever, before it's too late. I'll have to get a scooter or chair first. That's already in the works. We already don't camp anymore and haven't been on a vacation for 3 years. I'd like to do this while I can still transfer myself (although with difficulty).

Has anyone with MD been on a cruise?
Has anyone with MD been on a commercial airplane recently?

How did you make out? I'm terrified to try but I'm sick of sitting home and I'm willing to face the fear. We are not rich but I think we can scrape up the funds to do this.

Can anyone offer "Do's & Dont's" for cruises and airlines?

kew17 · 06-29-2008, 11:40 PM

Hi Mark!
Sorry I haven't written in awhile...I lurk often, but have kept pretty busy with some genealogy work lately. Grab a cup of coffee and have a seat, I'll try to make the long story short version of this. At the end of 06 we planned a family trip to DisneyWorld. #1 destination for wheelchair travelers! We flew Southwest and I have nothing but praise for their entire staff and setup! Top notch..perfection! We took my powerchair and I was able to pre-board and took the chair right up to the plane door, and hobbled my way to my seat. They took the chair from there, I looked out the window and saw them loading it. Upon arrival in Orlando, we were the last off the plane and they brought the chair right to me at the door of the plane. I labeled the chair with all my info and also hooked around the headrest the instruction manual to the chair and info on the batteries. I doubt you will have any problems with batteries as all new chairs come with the self contained gel battery types that are all FAA approved etc.

Sadly this is where the trip turned bad for me. During the flight I had a burning in my chest and just all around didn't feel good. I was sure it was just nerves from the buildup of planning the trip and it was finally happening. Got there, unloaded and hit the Magic Kingdom. Had a blast, but still not feeling great. Next day sent the hubby and kid on with out me as I just wasn't well. Ended up calling the hotel desk for EMS because I couldn't breathe. I spent the next 4 weeks in ICU with pneumonia and was intubated. Missed the entire trip and they had to come home and leave me there by myself. It was horrible. After that length in the hosp. I lost ALL muscle control. I was literally a limp noodle. The trip home was with Continental. (By the way if traveling with mobile oxygen, the only 2 airlines that allow portable O2 are them and Delta - all airlines also do not allow you to use their O2 in flight) This flight, we gave them my chair at the gate and transferred to one of their manual chairs and I got my own skycap to push me around and to the plane. They then plopped me on a isle pusher chair thingy and got me to my seat and hubby picked me up and put me in my seat. (this chair is not very big by the way, ya know the bench you use at the gym for bench presses? well it's about that wide) I could barely keep my neck up...I was literally a noodle! Same process when we got off the plane. They did damage my chair. SOmething heavy dropped on the arm and bent it. Placed a claim on the damage and they made good on it. Just a little bit of a hassle, particularly because I was bedridden at this point.

The airline portion of the trip was a good experience for me, even with the obstacles we faced. The hotel was also excellent. They got me the extra pillows I needed because I sleep upright due to breathing problems. They also provided a pottychair adapter for the toilet. Very accomodating! I recommend taking a few items for trips that will help make life easier: your reacher! also one of my biggest issues in going anywhere is the potty. I can't get on/off it by myself. I found this item called the Travel John ( removed ) I can now go to the bathroom independently! Wear slip on type shoes to help with getting through the security checkpoints easier/faster. Keep all your meds in your carryon.

I have never been on a cruise, but I'd be sure that they have accessible rooms. I know my chair is wide for alot of doors and would think that would be especially true of a cabin.
My advice...plan it all out, look up all the info you can in advance so you don't have any surprises, make sure you request accessible room and let them know your needs and go! Go have a blast! You and your wife deserve it!!

Good Luck and God Bless!
Kelley

(PS - it took about 8+ months of physical therapy and lots of hard work, but I recovered from the trip. I am not necessarily the way I was pre-trip, but close enough. I can no longer even take small steps or stand for long periods without assistance. I use the walker to transfer to the restroom and have an adjustable bed that helps me get in and out of it. But by the Grace of God, I'm here to tell you about it)

kew17 · 06-30-2008, 08:44 AM

Oh, I forgot to add that you also need to contact the airline 24-48 hrs. in advance to make sure they know you are coming so that they have the necessary materials to crate the chair or scooter.
Happy Vacation!
Kelley

nodakr144 · 06-30-2008, 12:41 PM

Hi Mark

Your message is quite timely as my husband and I just recently returned from a two week cruise in the Mediterranean. I am in a different place in my LGMD progression than you are, but hopefully my observations/suggestions will help a little. Most of the large cruise lines have ships that are very accessible. For the most part, you will be able to access almost any part of the ship, with a few exceptions. There are accessible cabins on each ship, though there are a limited number. Elevators can sometimes be a challenge trying to get a scooter or a wheelchair off and on only because of the number of people who use the elevators.

One question you will want to answer is whether you intend to do any shore excursions in the ports you visit. Here you will find limited accessibility, especially for shore excursions you arrange through the ship. Also, you will want to know whether any of the ports you travel to will require you to "tender" into the port, which will make a big difference in whether you are able to access the port.

On this most recent cruise, we avoided the ship's tours and opted to arrange for our own private drivers in each port. Most of the ship's tours take participants in large motor coaches, which I am not able to climb on easily. Through private tours, we were often picked-up in a car and could tailor our experience to fit our specific needs. While the cost was sometimes a little more, it was well worth it for us. Of course, there is no obligation or requirement to take shore excursions as there is always plenty of things to do on the ship.

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Hope this is helpful.
Tracee

michigani · 06-30-2008, 01:00 PM

Tracee & Kelley,

Thanks so much for the info you've given. I pretty much assumed I would make reservations many months in advance and make it clear to the Airline and Cruise Company that I am handicap (did I mention 5 times that I was handicap?) Then remind them again a week before.

I'm looking at a 7 day Caribbean cruise with 3 stops and 4 days at sea. There's one "tender" situation but Holland America's Ship "Westerdam" (the one were eying) has modern tenders with wheelchair lifts. And the ship has 30 Accessible rooms, with balconies no less, not the small interior rooms. I hear that Holland America just spent tens of millions updating their fleet so they can boast accessibility.

I also heard how it's better to make your own excursion arrangements with a handicap lift van on the islands. I'd probably book these way in advance as well.

if you think of anything else please post it. Thanks again,

Mark