Idiopathic Pulmonary Fibrosis... Oxygen... and DAS

figmentfan2009

Mouseketeer
Joined
Jan 18, 2009
Hello

My husband and I will be traveling to WDW the last two weeks in September. My husband (70) has been diagnosed with a terminal lung disease... Idiopathic Pulmonary Fibrosis. He is on oxygen 24X7 and walks with a rollator. He is concerned that he won't be able to handle the lines in the Florida September and maintain his oxygen levels. I've been reading the rules and regulations for DAS and trying to make sense of what it is telling me. We called the disability services number and were told that there is no way to guess whether or not he will be able to get the ability to get return times and not be required to navigate many of the lines. He's been looking forward to this trip for months (since before he was diagnosed) and is not worried that his condition will mean that we can't enjoy Disney because he won't be able to ride much of anything.
Reading the regulations, it's difficult to figure out whether he even wants to go at this point because he's afraid that he won't be able to take the lines without triggering a coughing fit or his O2 levels dropping low enough to make him have to get out of line.
Is there anything I can do to allay his fears other than simply let him worry because it is going to be a crap shoot whether he will be able to enjoy what is our first trip alone as a couple in 26 years and what could be the last trip he ever takes to Disney.
 
He might do better in lines there is a good number in door and the ones that are not are shaded with big fans I would really worry about going from ride to ride and not getting to hot.
 
Impossible to say if you will get a das, it really could go either way. My daughter has severe chronic lung disease and other problems too, and we were able to get a das. If you are initially denied the das, try to do it wirhout it,vthen if that fails you can go back to guest relations and explain why that didnt work. one of the problems we have run into with the das is it requires a lot of extra walking. To help minimize this you should go in with a good touring plan, and let him sit and wait somewhere while you go and get the return time. Even with these strategies there can be extra walking if wait times are shorter or longer than you had predicted. There is no way her lungs could have handled all that extra walking without using her special needs stroller; even if you get a das you may want to consider getting a wheelchair too so his sats don't drop from all the extra walking. Good luck
 
His rollator has a really good seat... and he uses the seat when he goes walking now. I can't imagine, though, that the people in line behind us when he as to sit for 10 minutes to catch his breath would be very happy... He doesn't want an wheelchair because he hates the idea of not being able to stand and walk but he also doesn't want to not have a place to sit or the time to sit if he really needs to...
 
Is there any way that he would be willing to rent a scooter?

As another poster said, the DAS means more walking. So, I'm not sure that it will help as much as a good touring plan.
 
A scooter or wheelchair would be good, as well as trying to get a DAS. If he really wants to be able to walk, a wheelchair may be good because then you can help push when he needs a rest and then he can walk with it the rest of the time.

As others have noted, we spend more time in the sun and walking with a DAS than without one. Just the walk to get into the parks is lengthy, expect to walk 6-8 miles a day. I only note it because you both could have a wonderful time if you go prepared and that may mean the rollator just isn't enough.

BTW - we'll be there the same time! Hopefully the weather isn't quite as brutally hot as right now.
 
We have lots of Sit Down Meals planned but he's very reluctant to spend 600 dollars on scooters and not being sure that if we have to park hop he will get one at the second park. We would have to get one from Disney, since we have to haul his big O2 concentrator he can't see trying to fight with the busses from the resort to the parks if he rents on off property. He's read some of the horror stories about people trying to just get their rollator on a bus let alone a scooter. He also doesn't want to be "that guy" (or have people think he will be that guy) who gets on the scooter and backs over people or runs into people (yes, we have had that happen before at Disney when we were the walking people)... some of the scooter people are aggressive... rude... mean...

He also doesn't want to rend a scooter and know that I'm walking (I have RA) and I know we can't swing $1200
 


A scooter or wheelchair would be good, as well as trying to get a DAS. If he really wants to be able to walk, a wheelchair may be good because then you can help push when he needs a rest and then he can walk with it the rest of the time.

As others have noted, we spend more time in the sun and walking with a DAS than without one. Just the walk to get into the parks is lengthy, expect to walk 6-8 miles a day. I only note it because you both could have a wonderful time if you go prepared and that may mean the rollator just isn't enough.

BTW - we'll be there the same time! Hopefully the weather isn't quite as brutally hot as right now.


-- I'm counting on it not being as hot and humid as not. Realistically, though, AK will be a difficult park for him because the air just doesn't move there... even if it isn't July/August. He was really looking forward to a cooling off in Splash Mountain.... :/
 
now that I have more time

I would start thinking of whys to stay cool having a fan, big hat, cooling towles. I know you said that he dose not want a wheel chair but this would allow him to sit when need be ( and you could push him, and allow him to walk as much as he likes, likeI said there is a good number of lines that are indoor and AC and the ones that are not are in shade with big fans. There is so much more walking with a DAS then with out one, the lines tend to be slow moving and he may find he needs to site and ride going from ride to rides and can walk slowly in lines.
 
Maybe you could rent a scooter and share it?

That way both of you could benefit. He could ride when his oxygen is low, you can ride when you get tired.

It is really worth it to rent off site, then don't worry about what people say.
 
Renting scooters off site only costs about $200. per week. Not very expensive at all.

Without relying on Disney Transportation, how do you get those ones back and forth to the parks from your resort? We don't have a hitch to drive it onto behind the car and it could take half a day getting from hotel to breakfast to park to other park. He was looking at getting one of those possibly, but we weren't able to figure out the logistics
 
Without relying on Disney Transportation, how do you get those ones back and forth to the parks from your resort? We don't have a hitch to drive it onto behind the car and it could take half a day getting from hotel to breakfast to park to other park. He was looking at getting one of those possibly, but we weren't able to figure out the logistics

I am guessing you are staying on site, if so Disney bus is really the way to go Like easer then you think. My friend uses and ECV and I had to take her ECV to the park and she drove ( a lot easer then taking the ECV apart and putting in the back of her SUV. and then getting it out putting it back together) now I have no depth perception ( like 0, none ) and I was able to get it on the bus just fine. The CM are really good at helping you they will tell you pull up some, turn this way, ( has he ever parralrd park? this is easer )


if you have a car ( or anything) and you want go the ECV way you can get ECV that can be taken apart ( most in like 5 parts) after you get the hang of it you can do it in about 5-10 minutes, and my friend and I had it down to a science on what each of use would do so we could do this in less the 5, button person might take longer.

the mobility devices really the way to go it will do wonders for him but it sounds like a wheel chair might just what he needs where he can walk when need be and ride when need be. also I would make sure you are not criss crossing the park.
 
IF he's able to get a DAS, does it give him what he needs to ride the attractions? Once you have a DAS return time window, you go back to the attraction at the appropriate time and enter through the FP line. Whatever the current FP wait time is will be how long he waits in line to get on the attraction - usually 5-20 minutes. Will he be able to handle that amount of time in line with his rololator? The lines are typically constantly moving forward albeit very slowly, there likely won't be much time he will be able to sit on it and rest. A minute here, a minute there.

The advantage of the ECV is he would be able to take it in line - regular or FP line - all the way to loading of the attraction. Thus he would be sitting the whole time. Having an ECV also means you likely would not need or quality for a DAS... the ECV would take care of his needs.

From what you have written, it sounds like the easiest way for him to physically experience WDW is to rent an ECV from an off site vendor. Practice around the resort and use the WDW bus system to get around. In the end I think he'll be glad he has it around the resort, but if he doesn't need it there just park it in the room and use the rololator around the resort area.

One thing to keep in mind for both of you is that there are very few benches in the parks these days. Virtually none are in ride queues. And Disney has been systematically taking them out of the parks so they are now few and far between. If you need a place to sit having your own, like a wheelchair, ECV, or rololator, is a big help.

Hope your can work out the logistics of your trip and have a great time!
 
I stay on Disney property and take their transportation, specifically so I don't have to transport my scooter in my car.

It comes out of our car when we arrive, we put it together, and we don't take it apart until we leave.

I ride the Monorail or buses everywhere. It truly isn't bad.
 
I use Disney transportation, no problem or we use a rental car. My DH and DS will usually pick the ECV up and load it into the rental SUV w/o the seat. In a pinch, I can load with either of them....I can't breath but I can lift.
 
We would have to get one from Disney, since we have to haul his big O2 concentrator he can't see trying to fight with the busses from the resort to the parks if he rents on off property. He's read some of the horror stories about people trying to just get their rollator on a bus let alone a scooter. He also doesn't want to be "that guy" (or have people think he will be that guy) who gets on the scooter and backs over people or runs into people (yes, we have had that happen before at Disney when we were the walking people)... some of the scooter people are aggressive... rude... mean...

So...yes there are jerky scooter users. I toured Disneyland with one. She was nearly evil. I've also toured Disneyland with an incredibly kind and conscientious scooter user.

If people want to think he's the former, that's on them. You guys know he would be the latter.

The late great Cheshire_Figment had these questions.

Please ask the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

Rent offsite from a place that will deliver to you. Use the buses. Who cares one little bit about what people will think? This will make HIS trip much better. And if he wants to stand, hey, maybe you want to sit and move the scooter for him. win-win.
 
Hello

My husband and I will be traveling to WDW the last two weeks in September. My husband (70) has been diagnosed with a terminal lung disease... Idiopathic Pulmonary Fibrosis. He is on oxygen 24X7 and walks with a rollator. He is concerned that he won't be able to handle the lines in the Florida September and maintain his oxygen levels. I've been reading the rules and regulations for DAS and trying to make sense of what it is telling me. We called the disability services number and were told that there is no way to guess whether or not he will be able to get the ability to get return times and not be required to navigate many of the lines. He's been looking forward to this trip for months (since before he was diagnosed) and is not worried that his condition will mean that we can't enjoy Disney because he won't be able to ride much of anything.
Reading the regulations, it's difficult to figure out whether he even wants to go at this point because he's afraid that he won't be able to take the lines without triggering a coughing fit or his O2 levels dropping low enough to make him have to get out of line.
Is there anything I can do to allay his fears other than simply let him worry because it is going to be a crap shoot whether he will be able to enjoy what is our first trip alone as a couple in 26 years and what could be the last trip he ever takes to Disney.

Even with a DAS, he's going to have to 'navigate the lines'. You're going to have to explain what it is about the standby queue that keeps him from accessing the attraction. If it is mobility-based, don't expect a DAS.

His rollator has a really good seat... and he uses the seat when he goes walking now. I can't imagine, though, that the people in line behind us when he as to sit for 10 minutes to catch his breath would be very happy... He doesn't want an wheelchair because he hates the idea of not being able to stand and walk but he also doesn't want to not have a place to sit or the time to sit if he really needs to...

Does he realize that he's going to have to travel miles each day, pushing the rollator? In the heat of September?

We have lots of Sit Down Meals planned but he's very reluctant to spend 600 dollars on scooters and not being sure that if we have to park hop he will get one at the second park. We would have to get one from Disney, since we have to haul his big O2 concentrator he can't see trying to fight with the busses from the resort to the parks if he rents on off property. He's read some of the horror stories about people trying to just get their rollator on a bus let alone a scooter. He also doesn't want to be "that guy" (or have people think he will be that guy) who gets on the scooter and backs over people or runs into people (yes, we have had that happen before at Disney when we were the walking people)... some of the scooter people are aggressive... rude... mean...

He also doesn't want to rend a scooter and know that I'm walking (I have RA) and I know we can't swing $1200

Rethink this part - rent offsite, have the O2 concentrator in the ECV, and he doesn't have to fight with anything. He doesn't have to fight with the heat, the energy loss from pushing a rollator, etc. Have him practice on a Walmart scooter if he's worried about using an ECV. Get him the smallest ECV that will handle his weight and needs. Heck, get one for yourself too, so you can both enjoy the trip!
 
Is there anyway to postpone the trip to November when it will be cooler and easier to breathe?

My dad is also on O2 and would not even be able to tolerate the scooter with the humidity level in September. The air is just too thick.

We had only experienced Disney in late spring when it was warmer then took a late November trip to enjoy the Christmas decorations.
What a different experience in the cooler weather!
So much more enjoyable for everyone!
 
Is there anyway to postpone the trip to November when it will be cooler and easier to breathe?

My dad is also on O2 and would not even be able to tolerate the scooter with the humidity level in September. The air is just too thick.

We had only experienced Disney in late spring when it was warmer then took a late November trip to enjoy the Christmas decorations.
What a different experience in the cooler weather!
So much more enjoyable for everyone!
My Dad was also on O2. When he moved to Alabama, he just didn't go outside unless it was to go to the car, during the summer.

There was no way that he would be in Florida, in the summer, with a rollator.
 

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