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Newsletters: Feeding Tubes, Travel, and Disney
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Feeding Tubes, Travel, and Disney

Marie B. Latta, M.Ed.

Have you wondered where you could go with your feeding tube and other equipment to have a relaxing vacation? After years of not traveling, I tried Disney World in Orlando, Florida, and the Disney Magic cruise ship, and found that place. I am not peddling Disney, but I want to share why my experiences were so—as Disney says—“magical.”

Marie with Winnie-the-Pooh

Disney welcomes guests with specific needs. So if you, like me, have been saying traveling presents too much to deal with or you dread the airline experience, it may be time to rethink. Disney has built accessibility into their daily operations. Their accessible ground transportation is the biggie for me. But beyond that, they are prepared for people with all sorts of conditions and want you to participate but never feel patronized.

 

Planning

I hadn’t flown for about ten years when, in 2008, my daughter-in-law convinced me to go on a Christmas cruise with them. I flew to Orlando alone and met my family at the Disney terminal in the airport, where we were transported by bus to the Disney Magic cruise ship at Port Canaveral. In 2009, I met my family again. We spent five days in Disney World, then boarded the Disney Magic for a seven-day cruise.

Years earlier I’d decided I wouldn’t fly because I didn’t want to risk my wheelchair being damaged. When I added my feeding tube, and ventilator, the anticipated challenges multiplied. While any trip takes preparation, for those of us with a variety of conditions, preparation reaches a new level. Here’s what I learned about planning.

Start as early as possible and have your own travel agent. Ideally, you can find an independent travel/booking agent (not a Disney agent) who does not charge you but is paid by Disney for the business. Friends of my son and daughter-in-law are agents in Texas; they are exceptional problem solvers and we’ve done everything via phone and e-mail. (JoAn and Clif Hale, Cruise One, 817-448-9404, selah50@sbcglobal.net). I booked the Disney trips through them, but they do book other cruise lines and could help look for other accessible ones.

 

Disney-Specific Preparation

  • Disney has a number of forms it requires everyone to fill out prior to a cruise. These include a medical form. They are available online (disneycruise.disney.go.com) and completing them makes boarding the cruise much smoother. Pay attention to the deadlines listed.

  • You can purchase a transportation package ahead of time. This will free you of baggage. When you check your baggage at your home airport, it will be tagged for your Disney destination and will be handled through to your arrival. I checked my luggage in Atlanta and the next time I saw it was in my destination room. Oh, the freedom from having to manage luggage! (There is an additional fee for this service; I paid about $70 to have my luggage handled through to my destination.)

  • Definitely purchase insurance for emergencies, such as medical evacuation. Without insurance, such an unexpected event would cost more than “an arm and a leg.”

  • The “Special Services Information Form” is an optional form you can print out from the Disney Cruise Web site, then return by fax or mail. It has a place for your physician to report on any current medical condition(s) and medication. It also allows you to make arrangements for a wheelchair, oxygen, and special dietary needs. Again, pay attention to deadlines. This form must be received at least fourteen days prior to the cruise’s sail date.

 

Shipping Formula

  • I shipped my feeding tube formula ahead. Disney has a warehouse in Canaveral, Florida, where I boarded the ship. I carefully marked my supplies (based on Disney instructions) and sent them, and they were in my stateroom when I arrived. I also shipped formula and a suction pump to the resort where we stayed at Disney World.

  • Don’t leave anything to chance. When we got to our Disney World resort, the formula was not in our room. I called guest services and was told they would check on it in the morning, since it was late. When I told them it was an immediate need and why, they located the formula and had it delivered within fifteen minutes.

 

Airport Security

Going through security was not a pleasant experience. But, at least for me, going through security has greatly improved. Here are my suggestions to make airport security screening go more smoothly:

  • Go with a good attitude.

  • Wear shoes that are easy to get on and off.

  • Have a doctor’s letter stating that your carry-on medical equipment and supplies are medically necessary.

  • If you must carry water, as I do, speak to a security representative before you let go of the water. Explain, don’t confront. If necessary, ask for a supervisor. Carry only unopened bottles.

  • I carry my ventilator in my lap. It always triggers a search. Security always drags it out of its bag. Just be ready to speak to security about what you have.

  • I always have someone with me and get them an airline gate pass so they can help me right up to the boarding gate. Otherwise, my personal belongings, purse and all, would be sitting out in the open on the conveyor belt while I am pulled aside to go through the screening.

 

The Destination

Disney has a terminal in the Orlando Airport. In both 2008 and 2009, when I arrived there I was in good hands. Disney has an expectation that their guests’ needs will be met. For example, I wanted to board the bus by using a lift instead of the stairs, and a bus with a lift appeared in 15 to 20 minutes to deliver me to my destination. Even if you are not in a wheelchair, your ability to walk may be limited and when checking in you can let them know you’ll need help. Also, you and travel companions can always stay together.

Marie enjoying the festivities at the park.

In Disney World and on the cruise, you are treated as a valued guest. I, with my limitations and needs, was never treated like an afterthought. Serving everyone is a part of the culture.

In the park, amusement rides requiring a transfer out of a wheelchair are identified. There are brochures for visitors with disabilities explaining the accessibility, including the rides, in each section of the park.

In 2009 my daughter-in-law had reservations for us at themed dinners and various places all over the park, one being the Polynesian Luau. To get around I could travel the accessible sidewalk, or ride the monorail, the boat ferry, and the busses. When I got there I was comfortable using my feeding tube at dinner. At one restaurant, my then-three-year-old grandson explained to the server I had a feeding tube and would not be ordering.

 

The Cruise

On the Disney Magic cruise ship, even boarding is smooth. It is barrier-free from the dock to the ship. Once you are onboard, your room host will take care of your room and you for the duration of your trip. The room hosts quickly help with any needs. The activities on the ship are accessible.

The ship medical center includes a doctor and nurse. I should have gone to meet the medical staff, but didn’t. I also should have brought a small bottle of dish-washing liquid, but didn’t. When I asked how I could wash my 60 cc syringes for my formula feeding, I was given a bag of 60 cc syringes from the medical room. The crew solves problems as they come up.

Cleanliness is a ship-wide priority. When you enter a restaurant, they hand you a wipe to clean your hands. The ship is washed down every night.

Mealtime is a pleasant experience. You are assigned a different restaurant each evening meal, but the serving staff moves with you. They immediately learn your name and any special needs. If they know you want coffee before your meal or you need your food blenderized, you won’t have to ask for it the second night. I eat via my feeding tube wherever I am and always flush the tube with warm water. They were very accommodating with hot water. Since I am an early bird, I generally had breakfast (two cans of formula) in my room.

 

Dream Vacation?

Two years in a row I enjoyed a vacation without the constant fear of barriers to getting my specific needs met. In December 2009, a woman on the ship asked me how the trip was for me. Her extended family had planned a celebratory trip for grandma. Sadly, because she used oxygen and was in a wheelchair, grandma had been afraid she wouldn’t be able to get around and didn’t come. I told the woman what a pleasant, trouble-free experience I was having.

A trouble-free vacation trip: dream or reality? I went to a fantasy world to find my accessible reality, a place where I could go with all my mechanical toys, breathe easily, eat via my feeding tube, and play with my grandchildren! I have talked about other conditions, in addition to having a feeding tube, and have found that limiting conditions often come in multiples. So gather them up and go have some fun.

Editor’s note: Several Oley members have noted that Disney is very accommodating to those with special needs, and so we asked Marie to share her experiences in detail. However, we realize other cruise lines and resorts also accommodate special needs, and we invite you to share your experiences with us. We can post these additional resources online and in the “Mailbox” column of upcoming issues of the newsletter. Thank you.

LifelineLetter, September/October 2010

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5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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