First time traveling with oxygen, bipap, scooter oh my!

[princessfionasmom]

So this is our first trip where we have to worry about medical issues with my husband. Our trip is quickly approaching and I'm starting to freak out because I don't know what I don't know about traveling to Walt Disney World with his medical conditions.

Here is a brief history of how he got where he is today. Five years ago he was diagnosed with leukemia (2 forms), had a bone marrow transplant 3 months later and within 6 months developed graph vs host disease in his lungs. It's gotten progressively worse to the point where he is on oxygen and needs a bipap machine which he uses a few times a day to take the trapped CO2 out of his lungs - this almost killed him last September. He also has severe osteo arthritis in his hips from the steroids but they won't do surgery because the risk is way to high. This makes it hard for him to walk and can barely do stairs.

We are staying at the Poly 10/18-26, my husband has always wanted to stay there and this is his bucket list trip. My plan is to rent him a scooter for going around the parks and the resort. I've read some of the threads on here and will probably try the Apple Scooter place unless someone has another option they would recommend. We will bring his portable oxygen concentrator (pulse dose) with us but we will need to have a regular oxygen concentrator and a bipap for him to sleep with - has anyone had these machines delivered to a resort and how did you go about getting it set up? Who did you use? Any details would be greatly appreciated.

If anyone has any scooter tips or tricks they would like to share I would love to hear them or experiences traveling with the whole oxygen & bipap machine. DH has never used a scooter but I think he'll be ok with practice around the resort. How bad will the bus be with a scooter? Oh and traveling with all his medications - anything I need to worry about or prepare for with that?

I have ready thru quite a bit on here which has been helpful. Thank you in advanced for all your advice, I truly appreciate it!!

 

[gap2368]

As fair as flaying if you pack all his medical thing In its own bag it can flay for free In the cab with you and dose not count toward your carry on.

 

[Kaytie]

Instead of Apple, I would suggest Care Medical. They're a full service medical equipment supplier. While Care is a Featured vendor, you might want to schedule to meet with them because of the additional equipment. They should be able to provide you with an oxygen tank holder already attached.

 

[mamabunny]

Here's a few tips for a first-time ECV driver:

Who to rent from is very subjective. I recommend CALLING and talking to several companies, and see which one you like best. Prior to buying my own personal ECV, I rented from Walker, but that was several years ago.

If you can, practicing your ECV driving and parking skills with the electric carts at Wal-Mart, Target, Lowe's, the grocery store, etc. will help a great deal. If you can tame one of those wheezing beasties, a mere rental at WDW will be a breeze! Having said that, do take the time to practice at the Resort (or somewhere outside the Parks) with the rental, to familiarize yourself with how it stops, turns, etc.

Please remember that WDW has a rule - for everyone's safety - that only you ride the ECV. One device, one rider. Period.

Bring a brightly colored scarf, ribbon or bandana to tie on your rental scooter. It will help it stand out in a sea of similar units (if you park it to ride, eat, or shop a bit).

You will have to park the ECV in your room every night to charge it, so if you need to make a bit of space, ask for the table and chairs to be removed. You are not allowed to park it outside in a hallway or breezeway, or down at the lobby or bell services. (Pro tip: go directly to the front desk to ask for the table & chairs to be moved - don't call the "Front Desk" from the room phone, as that call goes to a Call Center for the Resorts, and not the Front Desk of the hotel you are at)

If the scooter has a key, always take it with you.

Don't be surprised if you park the ECV to go on a ride, or attraction, and it is moved when you return. The Cast Members are in a constant struggle to keep walkways clear and safe, as well as making sure that parking areas for mobility devices and strollers stay reasonably tidy. You will typically find it quite nearby, but if you don't, just ask any CM you see, and they will help you find it.

Remember to stay sharp and focused while driving the ECV - people at WDW tend to be doing everything but paying attention when they are walking, and many of us here have had folks run right into us, or walk right in front of us as we are moving! I try to make eye contact, smile politely, and offer an cheerful "Excuse me!" when needed, but know that you WILL at some point find yourself nearly running over someone who is either texting, taking a "selfie" or posting their latest selfie to Instagram. Children, who do not yet fully grasp all of the nuances of physics, are especially prone to running out in front of an ECV; they don't realize that most ECVs can't just stop instantly. I try to build a "bubble" in front of me (if I can) so that I can more easily spot those folks who look like they might pop right out in front of me.

It's true: pprobably the hardest thing you will do with the ECV all revolves around dealing with the buses, boats & monorails. Just FYI - IT'S NOT THAT HARD! Make sure you are parked in the white painted rectangle at the bus stop (unless another guest beat you to it) so that the driver sees you, and knows you are waiting to ride. (The exception to this is at the Ft. Wilderness Campgrounds, where there are not any white painted rectangles at the internal Resort stops for all of the Loops.)

When the ramp comes down, try to be pointed straight at the base of the ramp, and go right up the center. At the top of the ramp you will typically have to turn a bit to the right. GO SLOWLY, especially until you are used to the ECV. Even experienced users take this carefully - the last thing you want is to run over the driver, or hit the side of the doorway going in. Important to know: the drivers will give you instructions and will help as much as they can, but it is up to you (or a member of your party) to actually get the ECV up into the bus. You will always board first, and exit last. Your family can walk up the ramp and board behind you. The bus driver will let them know when it is safe to board the bus *after* you ECV is properly tied down. The bus drivers (and all of the transportation CMs) are nothing short of amazing at WDW!

You can take the ECV on all of the boats (except for the smaller launches) and the Captains have a portable ramp you should be able to use. It is identical to the portable ramp they will use for you at the Monorail stations. The loading/unloading procedure is actually fairly similar everywhere - you will almost always load first, and exit last.

Finally, a few quick driving tips: anytime at WDW (or anytime using an ECV for that matter) be aware of ramps, hills and slopes. Going up, you will want to lean forward to help shift your center of gravity towards the front of the ECV. Take your time going up steep slopes, hills or ramps, and if possible, approach them at a slight angle at the base.

Coming down, be very aware of your speed, and make sure you can brake effectively. This is not the time to try and drink your Starbucks; two hands on the wheel!

When crossing the train tracks embedded in Main Street at MK, be sure to cross at a 90 degree angle. Otherwise, you risk the wheel(s) getting caught, and you could find yourself dumped on to Main Street. Everyone wants to have an unforgettable trip - just for the right reasons!

 

[Pea-n-Me]

I'm sorry your husband has had to go through all that. I have never had to do this, but I'd think that the medical company that delivers the bipap will set it up and show you and your DH how to use it, as well as have a number on hand to call if there are questions or problems. I'd probably try to get the oxygen and the bipap from the same company, if possible, and somewhere close by.

You will love it at the Polynesian, I wish you all a wonderful trip!

 

[PlutoPony]

In the unlikely event that he would need medical attention while on vacation, you might want to research hospitals before you go - which ones are in network for you, who has the specialists he needs, etc. In my experience, this pretty much assures that nothing happens where I would need this info - which is perfectly fine by me (I'm a planner that thinks
more info is better than less lol).

 

[princessfionasmom]

This is all awesome advice. My husband is definitely going to practice when we go to Lowe's and I will look into the local hospitals. I hadn't even thought of that but so glad you mentioned it. Thank you all so much!!!

 

[Bete]

You don't state whether you are driving there or flying there. For my hubby we take his own equipment and we do road trips and we don't fly. You can take your own equipment for free on the plane, but you would need a very good padded suitcase to carry the concentrator. I'm always afraid of something breaking or the suitcase getting lost.

All oxygen concentrators work on the same principle, but they are not identical. Make sure you match his liter level required. I would want to be present and making sure everything is working from the rental company before leaving for a park. Hopefully, they will deliver the equipment with a qualified representative and set it up for you and walk you through it all. I would bring my own mask equipment, but you then need to make sure you match the machines you rent; so, everything fits properly. I don't believe this is universal. If you can buy the mask equipment for whatever you are renting that will work, too. My husband had trouble adjusting to a mask and we had to experiment with different ones a little before he settled on one. This is why we bring our own equipment. I wouldn't count on doing a park the first day. You need to get everything set up. I'm not sure what kind of window of time you will get from the rental company. I have an idea it may be an am or pm appointment without an exact time; I hope I'm wrong here.

If your husband is 200 pounds or more you will probably need a heavier rental scooter. Again, the scooters work on the same principle but they are not identical. The stronger, bigger scooters usually come with two batteries. These scooters are larger and a little harder to get in and out of your room, as well as, the monorails, boats, and buses. If you can get by with the smaller scooter it will be a little easier. From what you are describing about your husband he will probably be better off with a four wheel scooter rather than a three wheeler. You are responsible for charging the battery(s) every night. If it gets too hard for him to maneuver the scooter in and out of Disney transportation you may have to take over and do this part for him. Also, I think it would be good to practice at home with a scooter. You might want to do a day at a local zoo who rent out scooters. The store models you can try for free are actually harder than the ones you will rent.

You may want a wheelchair to get him to and from the parks and then rent a Disney scooter in the park. Of course, this means you will need to push a wheelchair to and from the parks. If you rent at the parks you need to get there early to secure a rental before they are sold out. It's more expensive to rent at the parks. They will hold your wheelchair.

You will want to conserve battery energy on the scooter by shutting it off during shows, parades, fireworks and eating.

It may be difficult for your husband to navigate ride entry and exiting. The boat rides I would think would be particularly difficult. You can usually transfer into an available wheelchair and the wheelchair then goes on a special boat. Scooters don't go on most rides. Rides with walkways like the Haunted Mansion in MK and Spaceship Earth in Epcot may be too difficult. I would get a Disney vacation DVD and study it well to know which rides seem doable for him. You can learn a lot from u-tube, too. From what I understand cast members are somewhat prohibited on helping you. There are liability factors involved. I would do more shows, street entertainment, parades and fireworks then rides.

I would alternate shows and rides to give him a rest. It may really tire him out on rides. Give him a chance to recover. You may want to take a mid day break at the resort. Keep in mind you can take a rest at the first aid centers in the park. They have cots there.