CPAP and Walking Concern(Stroke)

[mickeywdw4me]

OK, need a little help with planning. MY DH and I are taking our DGD (3yr) and DGS (5yr) to WDW in December. DH of 50 had a mild stroke in January. While he has mobility, he has weakness on his left side which causes his leg to drag when he gets tired. We are planning on taking breaks to rest but I was hoping for some pointers. We will be staying at POP, he does not want an EVC or Wheelchair as he feels that he should not take it away from someone else when "he can walk w/a cane" and does not want to spoil the trip.

Any suggestions on how I can make the trip easier on him with hotel, rides, transportation, etc?

In addition we are dealing with a CPAP machine and I am being told by the airline I cannot take distilled water with me. Does anyone know of how I can get distilled water to our room for the machine? Do they sell it at the park, etc?

Yes, it is a big undertaking, however we both decided that this was something that had to be done for our DGD and DGS.

Thanks for your help.

Grandma Tammy

[videogal1]

Originally Posted by mickeywdw4me

OK, need a little help with planning. MY DH and I are taking our DGD (3yr) and DGS (5yr) to WDW in December. DH of 50 had a mild stroke in January. While he has mobility, he has weakness on his left side which causes his leg to drag when he gets tired. We are planning on taking breaks to rest but I was hoping for some pointers. We will be staying at POP, he does not want an EVC or Wheelchair as he feels that he should not take it away from someone else when "he can walk w/a cane" and does not want to spoil the trip.

Any suggestions on how I can make the trip easier on him with hotel, rides, transportation, etc?

In addition we are dealing with a CPAP machine and I am being told by the airline I cannot take distilled water with me. Does anyone know of how I can get distilled water to our room for the machine? Do they sell it at the park, etc?



Thanks for your help.

Grandma Tammy

1. Let him walk. When he gets tired, let him figure out how to deal with it. It won't spoil the trip. Don't bother with a wheelchair...WDW is far too hilly to push someone around in one unless you are a linebacker or have one you can take with you...If you strain your shoulders, that will spoil the trip...
2. As the distilled water is a medical necessity I can't imagine TSA being able to tell you that you cannot take it but, stranger things have happened. Find another agent or a supervisor to verify. Find a store near WDW that will deliver some to POP directly through an on-line order. You might also contact the desk at POP to see how others handle deliveries that have to be in place before guest arrival or soon after.

[Tiggerish]

My brother just uses bottle water in his machine when he travels. All the hotel gift shops have bottled water. Also you can always order a delivery from a grocery shopping service. Or, maybe you could could put some into liter water bottles (but do not fill all the way to allow for expansion due to pressure changes in airplane), wrap in bubble wrap and put into zip lock bag and put into checked luggage? I thought the size restrictions on liquids was only for carry on luggage.

Please try to get him to be open to the idea of a ECV. You can let him try without but he is NOT taking something away from someone else to use one. The best way I can explain it is that the kids will have a much better time, if he can keep up and not be in pain or exhausted.

Good luck and have fun.

[clanmcculloch]

If you rent an ECV from some place like Walker Mobility then he's not taking one away from anybody else. By not renting one, he IS likely to take vacation time away from his family. I don't think people realize just how much walking is involved with a WDW vacation. Most people walk somewhere around 7 - 10 miles PER DAY at WDW. Has he walked this far in a single day since his stroke? I'd be worried about that much walking doing far more damage than just exhausting him. PLEASE urge him to get an ECV. He's not going to spoil your trip by getting an ECV. He will spoil it by hurting himself or draining himself by walking too much. Also point out that the ECVs have baskets that can carry everything for everybody so he'll be helping everybody out by getting it.

[pudge the fish]

Sunday I did 8.5 miles on my pedometer at Epcot. it is 1.5 miles around showcase lagoon

it is a LONNGG walk from the TTC to the monorail/ ferry boat and another LONGGGGGGGGGGG Walk to get into the MK after you get off the monorail or boat.

Even if you stay on site it is a LONNGGGG walk to get to the bus.

I highly suggest getting a EVC- carrying things for everyone is helpful too
there are not always places to sit and take a break.
( except first aid centers)
and First aid at epcot- don't be tired in UK and need the first aid center.....it's a LONGGGGG walk

[videogal1]

Originally Posted by clanmcculloch

If you rent an ECV from some place like Walker Mobility then he's not taking one away from anybody else. By not renting one, he IS likely to take vacation time away from his family. I don't think people realize just how much walking is involved with a WDW vacation. Most people walk somewhere around 7 - 10 miles PER DAY at WDW. Has he walked this far in a single day since his stroke? I'd be worried about that much walking doing far more damage than just exhausting him. PLEASE urge him to get an ECV. He's not going to spoil your trip by getting an ECV. He will spoil it by hurting himself or draining himself by walking too much. Also point out that the ECVs have baskets that can carry everything for everybody so he'll be helping everybody out by getting it.

Well, Clan, There may be perceptual issues that are typical of a stroke that, if present, render the survivor unable to "see" their position in relation to other objects in their path. Driving an ECV under this condition is pretty dangerous for the pedestrians, which is why many stroke survivors are never able to drive again, even if they walk well. If this is the case here, I doubt that I'd like to be responsible for urging someone with a brain injury to take up the controls of an ECV.

[pixie921]

My dh uses a CPAP. On previous trips, we'd stop at Walgreen's and pick up distilled water. This past trip, we used a grocery service (We Go Shop) and had it delivered. If neither of those options work for you, I'd do what a poster above said and use bottled water. It certainly won't hurt for a few days.

I hope you have a wonderful time!

[Cheshire Figment]

Please ask your husband 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!

[Chickadee]

There is no reason to worry about distilled water for the CPAP, they only suggest you use it on a regular basis so deposits wont build up, which wont happen during a vacation. Even tap water will work.
As far as the EVC, if he can drive one (try it out at a grocery or walmart), and you feel its safe for him to do so, then definitly try to convince him that it would be a good idea.
I also had a reluctant DH, but once I reminded him of the distances involved, he agreed it was for the best.
Also, don't let the EVC's you see in walmart turn him off to the idea, there are some really nice models you can rent off-site. Most will deliver free to area resorts. DH was really happy when I found "The Dream" scooter that Scootorando.com rents. They call it a "Harley look", and he said he "wouldnt feel like an old man riding that one!".There are also models that are compact and/or foldable which a lot of people love.
Or, he can always get a scooter at the park if he decides once he gets there that its too much for him. Be warned though, I have read that later in the day there may not be any left to rent. (which is why renting off-site is good, you can take it from park to park and back to your resort) You have to rent one for each park you visit if renting from Disney.
Hope you have a great vacation!

[Cheshire Figment]

Originally Posted by Chickadee

There is no reason to worry about distilled water for the CPAP, they only suggest you use it on a regular basis so deposits wont build up, which wont happen during a vacation. Even tap water will work.

This is not a good idea. In the Orlando/WDW area the tap water is very hard, in the range of more than 200ppm of particles in the water. If you can't get distilled, bottled water is much softer than tap water.

[wildlandmedic]

Most people here have some good suggestions. You and your husband are the only ones that can make the RIGHT decision FOR HIM. With that said..... I have been around a lot of stroke victims, as I work in the medical field, as well as my FIL suffering a massive stroke this past January. As well as my brother suffering a massive stroke several years ago.

I don't know what extent his lasting effects are. My brother also has a foot that drags when he is tired, as well as no use of his right arm. My FIL is still recovering so he has problems with his right side all the time. My brother would do fine in WDW, but my FIL would have to have an ECV.

By all means, have him try out an ECV at Walmart. Let him try walking the first day. If he poops out, he may decide to get an ECV that day or the next. .

If he does fine walking the first day or so, let him have at it. You might check into one of the 4 legged canes that has a seat built into so he doesn't have to hunt down a bench all the time.

My point being, he is a man, he has his pride, and I am sure this has already wounded him physically, emotionally, and his pride. Tell him you love him, but you are going to have a good time, whether he is with you or not. If you are like my MIL tell him, get an EVC or sit on your butt in the room, we are gonna go have fun.

[Chickadee]

Originally Posted by Cheshire Figment

This is not a good idea. In the Orlando/WDW area the tap water is very hard, in the range of more than 200ppm of particles in the water. If you can't get distilled, bottled water is much softer than tap water.

My bad, I'm from Montana, our water is fresh from the source you might say, lol.

[wildlandmedic]

Originally Posted by Chickadee

My bad, I'm from Montana, our water is fresh from the source you might say, lol.

Garden grocer, netgrocer, or local pharmacies will deliver distilled water. Also, If your water is in bottles, you can check them. Airlines will not let you have them in your carryon luggage, but they can go in your checked bags.

[SueM in MN]

Originally Posted by Chickadee

Also, don't let the EVC's you see in walmart turn him off to the idea, there are some really nice models you can rent off-site. Most will deliver free to area resorts. DH was really happy when I found "The Dream" scooter that Scootorando.com rents. They call it a "Harley look", and he said he "wouldnt feel like an old man riding that one!".There are also models that are compact and/or foldable which a lot of people love.

One thing to keep in mind about the "Dream" Scooter is that it is considerably larger (wider and longer) than most ECVs. Because of the 'motorcycle style' front, it turns sharper than most, but because it is way wider than most, it will be a tight fit thru doorways, bus lifts, etc.
I would not recommend that particular scooter unless the driver has considerable time/experience driving a scooter already.
If he has any visual field or field neglect problems or depth perception problems (all of which often occur with a stroke), this scooter would be even more difficult for him than for the average person. IMHO, I would stick with a smaller scooter and not even show him this one.

For the distance, one thing that often works to convince someone they need an ECV or wheelchair, is to pick out a place well known to the person that is about 1.2 miles away - ask if they could walk there (1 -1.2 miles is the distance once around World Showcase in Epcot). Find another place 3 miles away and ask if they could walk there - (3 miles is the lowest estimate I have read of the distance someone walks a day at WDW). Estimates range from 3 - 9, even to 12 miles a day. Even some of the queues are a long distance (with no way in that is shorter) - just the walk from the queue entrance to the boarding area of Soarin is over 1/4 mile - and when you are done, you have to walk an equal distance to get back out.

Originally Posted by wildlandmedic

Garden grocer, netgrocer, or local pharmacies will deliver distilled water. Also, If your water is in bottles, you can check them. Airlines will not let you have them in your carryon luggage, but they can go in your checked bags.

TSA (Transportation Security Administration) is the agency that does inspections ans determines what can go thru security (airlines may or may not be up on what is allowed and do not examine your luggage, so would not know what is inside).
Here is a link to the TSA page about air travel with a CPAP machine.
You can bring what are called "medical liquids" through security (link to TSA page about travelers with disabilities). It's a long page and hard to direct someone to an individual paragraph, so I will just pull a quote from it.
"Additionally, we are continuing to permit prescription liquid medications and other liquids needed by persons with disabilities and medical conditions. This includes:

* All prescription and over-the-counter medications (liquids, gels, and aerosols) including KY jelly, eye drops, and saline solution for medical purposes;
* Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;"

and further down on that page:
"However, if the liquid medications are in volumes larger than 3 ozs each, they may not be placed in the quart-size bag and must be declared to the Transportation Security Officer. A declaration can be made verbally, in writing, or by a person's companion, caregiver, interpreter, or family member.

Declared liquid medications and other liquids for disabilities and medical conditions must be kept separate from all other property submitted for x-ray screening."

You can have whatever quantity you will need (keep in mind that water is heavy, so a roller bag will be helpful, plus you will need to be able to lift in into the overhead storage if your carry on bag is too big to fit under your seat).
If you don't want to go thru the extra declaration and have 3 ounce bottles of distilled water, you could put any number of them that will fit in your one quart zip lock bag. Some people have found that is enough for their trip. I know some people have actually measured how much water they used in an average week before their trip so they know how much to take along with a few days extra.

[itradehilton]

Yes, you can bring the water on board. It is for medical reasons. DH just packs it with the machine and they just ask if it is for the machine. We fly a few times a year and never have had any problems.