Looking for ideas for my dh

[wdwlovin'family]

Hello everyone!

I've been reading these disability boards for a while, and now it's time for me to come out of lurkedom to get some advice.

My dh was born with a disability called TAR syndrome. He has very very short arms, and also has problems with his hips, legs and feet. He also was born with clubfeet and now one of his feet has no range of motion. That being said, he is 45 yrs. old and does not use a wheelchair at home, at all. Last year, on our trip to wdw, he finally succumbed to a wheelchair by the middle of the first day. He had a bad reaction to the heat and was also in a lot of pain. I did not mind pushing him around, in fact, I felt like I could have a better time becasue I wasn't worried about him being in pain, but he hated having his wife push him around. He also feels conspicuous, even though it's obvious he has a disablity.

So, we've been looking up ideas for him to get around. Last years trip was 3 days, this one is 8, so we have even more work. He cannot drive a traditional ecv due to his arms. We've looked at the power wheelchairs with a stick shift and the compaines renting those are discouraging them if you don't drive one on a regular basis, due to them being more difficult to operate. Now, it seems like we're back to a wheelchair (which he doesn't like the idea of). I've been thinking that maybe we should get an GAC and a wheelchair and just take the wheelchair with us to all the different "lands" and park it when he doens't want to use it and use the gac. He needs the moving walkways slowed for him, no stairs and avoiding queues in the sun would be good too. Do you think that this is an good option for him? Do people do that? Do you have any other good ideas? I guess I should mention that we have our sons with us, ages 9 and 6, that he wants to keep up with and have a good vacation for them too. We will also be going on the trip with my sister and her dh.

Thanks in advance for your help.

 

[OneLittleSpark]

Hey there, and welcome out of lurkdom ! I'm just going to throw out some random ideas, and you see what sticks.

My first idea, is that he might be able to use a pediatric ECV. I don't know how well these would fit the rest of his body, but it might be worth looking into. I know one of the ECV rental places in the FAQ will rent to children in some circumstances, but I don't know what sized ECVs they have. If you take his arm measurement, he could phone up and see if they have anything suitable. If that doesn't work, you might be able to rent one from a rental company near your home-town

Another option is to get pediatric ECV second hand from EBay / FreeCycle etc. Often, the cost of renting for stays over a week is fairly similar to the cost of buying second hand, or even new! With buying, you'd be able to keep it and use it on future trips, and he could personalise it with a good paint-job (hey, we may have to use mobility aids, but that doesn't mean we can't have fun with them!). You'll be able to take it on the plane if you're flying, and it won't count towards your luggage allowance. Second-hand pediatric ECVs are also likely to be in better condition than adult ones, as kids will grow out of them fairly rapidly.

A third option is to look into renting a powerchair from somewhere local to you. A company outside of the Disney area may be more willing to rent to an inexperienced user, especially if he has a few days to practice with it before 'getting it on the road'. Your doctor may be able to advise you on where to go for this, or may even be able to write you a prescription for a short-term loan (I'm afraid I'm a Brit, so don't really understand how the American medical system works). Someone like the Red Cross may be able to help you, as I know they rent out chairs short-term (up to about three months) over here. Or you could see if you could find one cheap on the internet (less likely with a powerchair than an ECV, but you might get lucky).

If you decide to go for the 'park and ride' option with a manual chair, you can leave it in any of the stroller parking areas. You might want to put something on it to make it recognisable, like a bit of coloured fabric, as CMs will often tidy up the parking areas. Plenty of people go with this option, so you certainly won't be alone! Some kind of mobility aid, such as a crutch or telescopic cane (the hiking ones are nice and light, and will extend to a good length) might provide a little extra help for him when he is walking.

The GAC for slowing walkways and avoiding stairs shouldn't be a problem. Staying out of the sun can be hard at a few attractions (e.g. Dumbo) and I'm not sure if there are alternative waiting areas for all of these. You might be able to have him wait in the shade, in sight of the line, while you and the boys go through, I'm not sure. Most of the lines, though, are covered or inside, and the Fastpass system is very useful indeed.

You might want to try and avoid being in the parks around noon, as this is when it's hottest and busiest. If you hit the parks at rope-drop in the morning (with the age of your boys, I guess you'll be awake then anyway!) you can get in a good few hours playing before the heat and crowds get too much. Head back to your hotel for lunch, and spend the early afternoon chilling out in the room, swimming, napping for the boys (well, the younger one anyway, I know a 9 year old might turn his nose up at the idea of a nap!) etc. Then go back to the parks about 3-4 ish, and stay for the night-time entertainment!

Even if you're in the parks during the hottest part, you can still keep fairly cool as long as you plan ahead. A few random tips are:

Make sure to have regular breaks. Ice cream breaks are extremely good, and necessary for medical reasons

Keep hydrated - there are water fountains everywhere in Disney, so make the most of them!

Make the most of air-con! EPCOT is particularly good for having large air-conditioned areas to spend a while in, so you might want to hit this on a hot day

Try to avoid being out in the sun for too long at any one time. Tom Sawyer's Island is particularly bad for this (I managed to give myself mild heat-stroke there, before I started using a wheelchair), so your husband might want to give it a miss. It is also fairly rough terrain, by Disney standards, so might be unnecessarily painful for him.

Some people like to carry wash-cloths in zip-lock bags, so everyone can sponge down regularly to help keep cool. Just make sure to reapply suncream after this.

Animal Kingdom is very big and isn't so good on the air-conditioning. Try to go to this one on a cooler day, or visit it a few different mornings, so you can get out before it gets too hot.

If everyone's feeling a bit frazzled, have a day / half day at DisneyQuest - all air-con, no outside!

When at the water parks, wear an old T-shirt over your bathing suit. Not only does this keep you cool, as it stays wet for longer than your bathing suit will, it also helps protect against sunburn. (Oh, and I recomend using the creeks around both of the water parks to get you from place to place, and cut down on the walking )

Get a small battery-powered fan

I'm sure others will come up with more, but this should get you started!

Good luck and I hope you all have a great trip

 

[peemagg]

You said he has short arms and because of it he can't use a standard ECV. I was wondering what types of ECV's has he tried? I have a Pride Traveler Go-Go scooter. It allows for the tiller to be tilted up close to the rider. I know some don't have this ability. Maybe he would be able to use one of these type, if not the pediatric one is a good idea if you can find one.

 

[wdwlovin'family]

Hey there, and welcome out of lurkdom ! I'm just going to throw out some random ideas, and you see what sticks.

My first idea, is that he might be able to use a pediatric ECV. I don't know how well these would fit the rest of his body, but it might be worth looking into. I know one of the ECV rental places in the FAQ will rent to children in some circumstances, but I don't know what sized ECVs they have. If you take his arm measurement, he could phone up and see if they have anything suitable. If that doesn't work, you might be able to rent one from a rental company near your home-town

Another option is to get pediatric ECV second hand from EBay / FreeCycle etc. Often, the cost of renting for stays over a week is fairly similar to the cost of buying second hand, or even new! With buying, you'd be able to keep it and use it on future trips, and he could personalise it with a good paint-job (hey, we may have to use mobility aids, but that doesn't mean we can't have fun with them!). You'll be able to take it on the plane if you're flying, and it won't count towards your luggage allowance. Second-hand pediatric ECVs are also likely to be in better condition than adult ones, as kids will grow out of them fairly rapidly.

A third option is to look into renting a powerchair from somewhere local to you. A company outside of the Disney area may be more willing to rent to an inexperienced user, especially if he has a few days to practice with it before 'getting it on the road'. Your doctor may be able to advise you on where to go for this, or may even be able to write you a prescription for a short-term loan (I'm afraid I'm a Brit, so don't really understand how the American medical system works). Someone like the Red Cross may be able to help you, as I know they rent out chairs short-term (up to about three months) over here. Or you could see if you could find one cheap on the internet (less likely with a powerchair than an ECV, but you might get lucky).

After reading this, I decided to call a local mobility store and we're going to test drive on next week to see if it will work or not. I don't know why I hadn't thought of a pediactric one before. Regardless, after talking to them, we will rent our scooter or wheelchair from them -- $25 to rent a wheelchair for the 10 days or $175 to rent the scooter, considerably cheaper than renting even from an off-site rental company near disney.

If you decide to go for the 'park and ride' option with a manual chair, you can leave it in any of the stroller parking areas. You might want to put something on it to make it recognisable, like a bit of coloured fabric, as CMs will often tidy up the parking areas. Plenty of people go with this option, so you certainly won't be alone! Some kind of mobility aid, such as a crutch or telescopic cane (the hiking ones are nice and light, and will extend to a good length) might provide a little extra help for him when he is walking.

He's warming up to the wheelchair idea more and more and likes this "park and ride" option. If the scooters don't end up working for us, I'm guessing we'll probably do this. I know he hates me having to push him around, but I really don't mind!

The GAC for slowing walkways and avoiding stairs shouldn't be a problem. Staying out of the sun can be hard at a few attractions (e.g. Dumbo) and I'm not sure if there are alternative waiting areas for all of these. You might be able to have him wait in the shade, in sight of the line, while you and the boys go through, I'm not sure. Most of the lines, though, are covered or inside, and the Fastpass system is very useful indeed.

You might want to try and avoid being in the parks around noon, as this is when it's hottest and busiest. If you hit the parks at rope-drop in the morning (with the age of your boys, I guess you'll be awake then anyway!) you can get in a good few hours playing before the heat and crowds get too much. Head back to your hotel for lunch, and spend the early afternoon chilling out in the room, swimming, napping for the boys (well, the younger one anyway, I know a 9 year old might turn his nose up at the idea of a nap!) etc. Then go back to the parks about 3-4 ish, and stay for the night-time entertainment!

This is our plan of attack, provided that wdw doesn't shorten the december hours too much. Even if they do, he can go back and rest and meet up with the boys and I later.

Even if you're in the parks during the hottest part, you can still keep fairly cool as long as you plan ahead. A few random tips are:

Make sure to have regular breaks. Ice cream breaks are extremely good, and necessary for medical reasons

Keep hydrated - there are water fountains everywhere in Disney, so make the most of them!

Make the most of air-con! EPCOT is particularly good for having large air-conditioned areas to spend a while in, so you might want to hit this on a hot day

Try to avoid being out in the sun for too long at any one time. Tom Sawyer's Island is particularly bad for this (I managed to give myself mild heat-stroke there, before I started using a wheelchair), so your husband might want to give it a miss. It is also fairly rough terrain, by Disney standards, so might be unnecessarily painful for him.

Some people like to carry wash-cloths in zip-lock bags, so everyone can sponge down regularly to help keep cool. Just make sure to reapply suncream after this.

Animal Kingdom is very big and isn't so good on the air-conditioning. Try to go to this one on a cooler day, or visit it a few different mornings, so you can get out before it gets too hot.

If everyone's feeling a bit frazzled, have a day / half day at DisneyQuest - all air-con, no outside!

When at the water parks, wear an old T-shirt over your bathing suit. Not only does this keep you cool, as it stays wet for longer than your bathing suit will, it also helps protect against sunburn. (Oh, and I recomend using the creeks around both of the water parks to get you from place to place, and cut down on the walking )

Get a small battery-powered fan

I'm sure others will come up with more, but this should get you started!

Good luck and I hope you all have a great trip

Thanks so much and those are good tips. Here's hoping that December won't be too hot!

My replies in blue

 

[SueM in MN]

My first idea, is that he might be able to use a pediatric ECV. I don't know how well these would fit the rest of his body, but it might be worth looking into. I know one of the ECV rental places in the FAQ will rent to children in some circumstances, but I don't know what sized ECVs they have.

The ones they have are actually adult size.
Randy's is the company and they will rent to older teens (most of the other companies only rent to people over the age of 18).

After reading this, I decided to call a local mobility store and we're going to test drive on next week to see if it will work or not. I don't know why I hadn't thought of a pediactric one before. Regardless, after talking to them, we will rent our scooter or wheelchair from them -- $25 to rent a wheelchair for the 10 days or $175 to rent the scooter, considerably cheaper than renting even from an off-site rental company near disney.

I think that is a good idea.
A knowledgeable mobility company can come up with the best options for him. I know that a lot of Little People use ECVs for distances because of pain from skeletal deformities. So, they can fit ECVs to people with many different needs/abilities.

He may want to look into seeing if he could rent a power wheelchair from home. They are more difficult to get the hang of driving (there is a link in post #3 of the disABILITIES FAQs thread that compares driving one to driving an ECV).
For a power wheelchair, you control speed, forward and rear direction and turning all at once with the same joystick. It's takes more practice to drive one and because most cost at least 2-3 times more than an ECV, the companies that manual wheelchairs and ECVs out at WDW would rather rent out the less expensive, less fragile and easier to drive ECVs.
A power wheelchair would probably fit his 'reach' needs better since the joystick can be positioned in many places depending on the needs of the person using the wheelchair.

 

[OneLittleSpark]

Glad to hear you may have found something that will work for you! Do let us know how the test drive goes; I hope you find something that fits all your needs

If you're going there in December, the heat shouldn't be as much of an issue as it would be in Summer. The main thing is to come up with a 'game plan' before hand, then stick to it. It's far too easy when you're actually there to get carried away with the magic, and forget to take breaks / stop regularly for drinks / go inside frequently. I've done this to myself a couple of times, and it normally means I have to spend most of the next day in the hotel room - not fun at all !

One thing I thought of after I'd posted - take care when waiting for outdoor shows and parades. You might want to stake out a position, then send him off to wait in the air-con for a while, so he doesn't overheat. If you're using a wheelchair, there are designated viewing areas for wheelchair and ECV users, which are marked on the maps, along the parade routes. I'm not sure how happy they'd be about you staking out a place in one of these areas, then having the wheelchair user leave, but it might be OK if you explained the situation to the CM manning the area. In MK I'd recommend the viewing area in Liberty Square - it's under the Liberty Tree, so well shaded; opposite the Hall of Presidents, which gives you a nice blast of air-con when the doors are open; and has a stone wall just behind the wheelchair 'parking' areas, so you and the boys can sit down for the show.

Some of the shows, such as Flights of Wonder and Indiana Jones, are outdoors. They have tent-like roofs over them, with open sides, and usually have fans in the ceiling, but they can still get pretty warm. If you do these, try to hit them on a cooler day, have a battery-powered fan at the ready, and go inside straight afterwards to cool off.

I've seen posts here in the past, recommending cooling gel wraps. Miracool is one that I've heard positive things about, and doesn't need access to a fridge to use it. You soak it in cool water for a while, the crystals absorb the water, then it stays cool for a few hours, without dripping water everywhere. I've also found a DIY guide to making your own one, which might work out cheaper.

How is his platelet count? I've had a quick look into TAR Syndome, and read that bruising and hemorrhaging can be a problem with this condition. If he does have issues with this, there are some rides which he might want to avoid. Things such as the Safari, though not rollercoasters, can throw you around rather a lot.

Keep us posted, and let us know if you've got any more questions

 

[brekin67]

 

[wdwlovin'family]

A power wheelchair would probably fit his 'reach' needs better since the joystick can be positioned in many places depending on the needs of the person using the wheelchair.

I agree. He is going to try one out too when he does his "test driving." He was going to try them out this week, but then some things at work changed and he won't be able to get there this week before they close (4:30pm). Not a big deal though, we have till December and now that we know we don't have to worry about making a reservation at an offsite company, I don't feel as rushed. One good thing we did find out this weekend is that we can pay for the rental using our HSA account. I know it's our money one way or another, but it's nice to free up a little more vacation money.

I'm really hoping that we can find a scooter that meets his needs. He is really excited about having one and being able to keep up with us and not feel like he is slowing us down. Now when we talk about the vacation, there is a real excitement and joy in his voice and demeanor.

 

[OneLittleSpark]

I agree. He is going to try one out too when he does his "test driving." He was going to try them out this week, but then some things at work changed and he won't be able to get there this week before they close (4:30pm). Not a big deal though, we have till December and now that we know we don't have to worry about making a reservation at an offsite company, I don't feel as rushed. One good thing we did find out this weekend is that we can pay for the rental using our HSA account. I know it's our money one way or another, but it's nice to free up a little more vacation money.

I'm really hoping that we can find a scooter that meets his needs. He is really excited about having one and being able to keep up with us and not feel like he is slowing us down. Now when we talk about the vacation, there is a real excitement and joy in his voice and demeanor.

I'm so glad to hear that you've found a solution that will work for you, and allow your husband to enjoy the holiday fully ! I know how much of a difference a feeling of independence can make, so I can understand his change of mood. Also, if he's got his own set of wheels, you can send him off across the park to get Fastpasses while you and the boys chill out and have ice cream

I do hope the test drive goes well, and it's great news that you can pay for rental on HSA