Park Mobility and Rest Spots for a Guest with Lupus

[saveaquarter]

Hey everyone! My husband and I are going to Disney this summer with a friend of ours. My husband has lupus, and I've found a lot of really helpful information and tips in various places on the boards. I have a few other questions, and am (obviously!) new to DIS, so apologies if I missed the answers while I've been looking around.

My husband doesn't have mobility trouble from day to day, but with 10+ miles of walking in the parks, he'll go downhill quickly. His difficulty is largely in his joints (neuropathy coupled with arthritis) We're planning on renting a motorized wheelchair from our hospital to bring with us, but what I'd really like to know is if there are areas in the park where we could store the chair if he's feeling up to walking around for a bit, so we wont have to leave and go back to the resort to pick it up when he does need it.

His form of lupus primarily attacks his nervous system, resulting in some fairly severe seizures ranging from 30 second absence seizures to the occassional grand mal. Are there any areas of the parks or rides in particular we should be careful of that we may not otherwise think could trigger a seizure?

He also has Aspergers, and though he is very high functioning, he'll definitely need breaks from the overstimulation. I've been to Disney before, but this will be our first trip together, and I'm not sure whether there will be any quiet, air conditioned areas for us to get away from the crowds should he need a few moments to gather himself.

I've noticed quite a few of you have children on various ranges in the autism spectrum, have any of you used a GAC for that specific reason? How was your experience with it? We'll definitely be needing one for him regardless, as lupus is one of those invisible diseases, but were also thinking it'd be helpful with his mild Aspergers as well.

Phew, I'm pretty longwinded, eh? Thanks in advance for any advice!

 

[merryweather20]

There are first aid stations in each of the parks that you can use for an extended rest if required. Many of the rides and the lines themselves are enclosed as well, which will be a nice break. You can also consider booking a table service lunch or early dinner, which will give your party a good sit down break in air conditioning. Since you are going during the hottest time of year you might consider taking a nap ar a swim break back at your hotel.

I caution you about leaving your ECV and walking on to rides since the lines can be deceptively long, and there will be nowhere to sit down.

For the GAC think what he may need. For example if you left your ECV at the entrance to a ride, would he need to avoid stairs?

 

[saveaquarter]

I didn't even think of using the first aid stations as rest points, that's a really good idea. We're definitey going ot be taking afternoons off to rest, take advantage of the pool, and most likely nap before having dinner and heading back to the parks in the evening. Thanks for the great advice!

 

[McCall]

You say you are renting an electric wheel chair at home? then bringing it on the plane? Does he need it before you get there? I mean there is WC assistance at the air ports. You would be better to rent one in Orlando to be delivered to your hotel. also are you talking Elec. WC? or scooter?
I would not leave an electric WC at all. Scooters you can leave, but it would be better not too, as stated most of the lines are mainstreamed and LONG but you can't tell that from the outside. It would be best if he stayed in the chair or scooter till you reach the transfer point. They will then have the WC waiting for you when you get off the ride.

With the Chair or scooter you don't need the GAC UNLESS there are other issues you specifically want to address, in that case have your husband with you and tell the CM at City Hall what issues you need help with.

 

[saveaquarter]

We're actually going to be driving (we're making a stop in Savannah to eat at the Lady and Sons), so transporting the wheelchair will be way easier than it would be if we were flying. We're opting for an electric wheelchair instead of a scooter. And the more I think about it, you guys are definitely right about keeping the chair with us.

Our reasons for wanting the GAC go beyond just his mobility issues. We do want to be sure his epilepsy and Aspergers are covered as well, crowds can stress him out and high stress levels are among his seizure triggers.

 

[merryweather20]

We're actually going to be driving (we're making a stop in Savannah to eat at the Lady and Sons), so transporting the wheelchair will be way easier than it would be if we were flying. We're opting for an electric wheelchair instead of a scooter. And the more I think about it, you guys are definitely right about keeping the chair with us.

Our reasons for wanting the GAC go beyond just his mobility issues. We do want to be sure his epilepsy and Aspergers are covered as well, crowds can stress him out and high stress levels are among his seizure triggers.

Oops sorry for assuming he had an ECV (lots of people type electric wc instead of ECV so I was assuming). I hope the hospital gave him some instructions/lessons. These can be very tricky to drive!

Lots of for your trip.

 

[saveaquarter]

Oops sorry for assuming he had an ECV (lots of people type electric wc instead of ECV so I was assuming). I hope the hospital gave him some instructions/lessons. These can be very tricky to drive!

Lots of for your trip.

No worries! Like I said, he doesn't have trouble with day to day mobility (yet, at least), so we don't have a need to own one just yet. We're going to get it a few weeks in advance so he'll have some time to practice and get the hang of driving it.

He's very sensitive about all of this, and hates that he's lost so much of his independence. He wasn't really officially diagnosed until very recently. We're really hoping that this trip will be as wonderful as possible for him, and making every effort to ensure things go seamlessly and ensure he doesn't miss out on anything is a huge priority in the planning. Thanks for the magic! The more the better!

 

[SueM in MN]

His form of lupus primarily attacks his nervous system, resulting in some fairly severe seizures ranging from 30 second absence seizures to the occassional grand mal. Are there any areas of the parks or rides in particular we should be careful of that we may not otherwise think could trigger a seizure?

In the disABILITIES FAQs thread, post #3 includes links to past threads and other information. There is a post about Epilepsy at WDW, which includes some information about specific attractions. WDW doesn't use actual strobe lights, which can be a trigger for some people.
Two things that are very important are schedule and dehydration.
Getting off schedule with medications or sleep can lower the seizure threshold, making it easier for seizures to occur.
Dehydration can also lower the seizure threshold.

IF he has an aura or some other advance notice of a seizure, he should turn off the wheelchair right away. A power wheelchair is designed for driving with very little effort - even the push of a little finger can make it go. If he were to have a seizure while driving it, it could go out of control and be very dangerous. Since it takes so little effort to drive, a seizure that causes his arm to move forward could cause the wheelchair to go forward. An ECV might be a much safer choice because it requires more than just a push forward to drive.

He also has Aspergers, and though he is very high functioning, he'll definitely need breaks from the overstimulation. I've been to Disney before, but this will be our first trip together, and I'm not sure whether there will be any quiet, air conditioned areas for us to get away from the crowds should he need a few moments to gather himself.

I've noticed quite a few of you have children on various ranges in the autism spectrum, have any of you used a GAC for that specific reason? How was your experience with it? We'll definitely be needing one for him regardless, as lupus is one of those invisible diseases, but were also thinking it'd be helpful with his mild Aspergers as well.

Phew, I'm pretty longwinded, eh? Thanks in advance for any advice!

I know you have gotten some information on other threads, but I would suggest you look in post #3 of the disABILITIES FAQs thread for the information links about autism. There should be some good information in those that would be helpful

You say you are renting an electric wheel chair at home? then bringing it on the plane? Does he need it before you get there? I mean there is WC assistance at the air ports. You would be better to rent one in Orlando to be delivered to your hotel. also are you talking Elec. WC? or scooter?
I would not leave an electric WC at all. Scooters you can leave, but it would be better not too, as stated most of the lines are mainstreamed and LONG but you can't tell that from the outside. It would be best if he stayed in the chair or scooter till you reach the transfer point. They will then have the WC waiting for you when you get off the ride.

With the Chair or scooter you don't need the GAC UNLESS there are other issues you specifically want to address, in that case have your husband with you and tell the CM at City Hall what issues you need help with.

A power wheelchair usually does not have a key or any way to disable itself that would prevent someone from driving away with it.
If they can figure out how to turn it on (which is usually not that difficult), they can drive away with it.
For an ECV, you can take the key with you. It's not totally secure, but without the key, someone would have to push it away.

If he chooses to get out and walk, you should find out from the CM at the queue entrance just how long the walk would be. Also keep in mind that to a young healthy CM, "Not far" is going to be a lot different than to someone with mobility problems. Also, many attractions have a preshow where you will need to stand for a few minutes before actually boarding the ride.

We're actually going to be driving (we're making a stop in Savannah to eat at the Lady and Sons), so transporting the wheelchair will be way easier than it would be if we were flying. We're opting for an electric wheelchair instead of a scooter. And the more I think about it, you guys are definitely right about keeping the chair with us.

Our reasons for wanting the GAC go beyond just his mobility issues. We do want to be sure his epilepsy and Aspergers are covered as well, crowds can stress him out and high stress levels are among his seizure triggers.

For transporting the wheelchair - Do you have a wheelchair van with a lift or built in ramp?
Without those, it is not easy to transport a power wheelchair.
Power wheelchairs are heavy. My DD's is over 250 pounds without the batteries or her seating system. With all that, it's well over 300 pounds.
Power wheelchairs are not designed to be taken apart, so you will need a way to get 300 pounds of wheelchair into your vehicle in one piece.
If you have a regular van, it may be possible to push the wheelchair up a portable ramp into the back of the van. Whether that is possible or not will depend on how big the wheelchair is (can it fit into the back of the van, is it too high or too wide?), how high it is up to the back of your van (if it's too high, the ramp will be too steep) and how strong you are (are you able to push it up the ramp?)
Except for the extra large ones, ECVs are meant to be taken in car trunks. Most break down into smaller pieces that are relatively easy to take apart and put into a trunk, back seat or the back of a van. Usually the largest pieces are going to be around 40 pounds - much easier to transport than a power wheelchair.

Driving a power wheelchair or ECV in crowded areas like the parks can be very stressful. You need to always be aware of who is around you and what they are doing. People tend to step out in front of the wheelchair/ECV all the time, so you have to be ready to stop with very little notice. An ECV is easier to drive and would likely be less stressful to drive in crowded conditions than a power wheelchair for someone who is not very experienced.
This is a link to a thread about the differences in driving a power wheelchair compared to an ECV which may be helpful.

 

[saveaquarter]

In the disABILITIES FAQs thread, post #3 includes links to past threads and other information. There is a post about Epilepsy at WDW, which includes some information about specific attractions. WDW doesn't use actual strobe lights, which can be a trigger for some people.
Two things that are very important are schedule and dehydration.
Getting off schedule with medications or sleep can lower the seizure threshold, making it easier for seizures to occur.
Dehydration can also lower the seizure threshold.

IF he has an aura or some other advance notice of a seizure, he should turn off the wheelchair right away. A power wheelchair is designed for driving with very little effort - even the push of a little finger can make it go. If he were to have a seizure while driving it, it could go out of control and be very dangerous. Since it takes so little effort to drive, a seizure that causes his arm to move forward could cause the wheelchair to go forward. An ECV might be a much safer choice because it requires more than just a push forward to drive.

I know you have gotten some information on other threads, but I would suggest you look in post #3 of the disABILITIES FAQs thread for the information links about autism. There should be some good information in those that would be helpful

A power wheelchair usually does not have a key or any way to disable itself that would prevent someone from driving away with it.
If they can figure out how to turn it on (which is usually not that difficult), they can drive away with it.
For an ECV, you can take the key with you. It's not totally secure, but without the key, someone would have to push it away.

If he chooses to get out and walk, you should find out from the CM at the queue entrance just how long the walk would be. Also keep in mind that to a young healthy CM, "Not far" is going to be a lot different than to someone with mobility problems. Also, many attractions have a preshow where you will need to stand for a few minutes before actually boarding the ride.

Thank you! At the time I posted this, none of the links in the FAQ thread were working for me, for some reason. I'd assumed they'd fallen off the face of the DISboards and hadn't quite been updated yet. Of course, they're working now, so the problem is me! My apologies!

We'd most likely use some sort of bicycle lock to secure the chair, should we choose to leave it somewhere. I doubt we'll be leaving it much, unless he makes a sudden turn for the better or the progression of his disease drastically slows. He still has days where he surprises everyone, himself included, and we want to be prepared should he have one of those days while we're there.

For transporting the wheelchair - Do you have a wheelchair van with a lift or built in ramp?
Without those, it is not easy to transport a power wheelchair.
Power wheelchairs are heavy. My DD's is over 250 pounds without the batteries or her seating system. With all that, it's well over 300 pounds.
Power wheelchairs are not designed to be taken apart, so you will need a way to get 300 pounds of wheelchair into your vehicle in one piece.
If you have a regular van, it may be possible to push the wheelchair up a portable ramp into the back of the van. Whether that is possible or not will depend on how big the wheelchair is (can it fit into the back of the van, is it too high or too wide?), how high it is up to the back of your van (if it's too high, the ramp will be too steep) and how strong you are (are you able to push it up the ramp?)
Except for the extra large ones, ECVs are meant to be taken in car trunks. Most break down into smaller pieces that are relatively easy to take apart and put into a trunk, back seat or the back of a van. Usually the largest pieces are going to be around 40 pounds - much easier to transport than a power wheelchair.

Driving a power wheelchair or ECV in crowded areas like the parks can be very stressful. You need to always be aware of who is around you and what they are doing. People tend to step out in front of the wheelchair/ECV all the time, so you have to be ready to stop with very little notice. An ECV is easier to drive and would likely be less stressful to drive in crowded conditions than a power wheelchair for someone who is not very experienced.
This is a link to a thread about the differences in driving a power wheelchair compared to an ECV which may be helpful.

Well, the chair we'll be renting from our local hospital is a foldable PWC that weighs about 130-140 pounds, very much like this one. We'll be driving an SUV there, and will have plenty of room to store it. We want to go with that over an ECV because should we need to push it (if he seizes and is too weak to steer, or is too nervous to steer through a crowd) we wont have any difficulty. We weighed the options of PWC vs ECV for a while, and the only thing keeping us from using an ECV for him is the problem an ECV would represent if we need to steer him out of the park for some reason.

Out of curiousity, what sort of wheelchair does your daughter use?

 

[SueM in MN]

Thank you! At the time I posted this, none of the links in the FAQ thread were working for me, for some reason. I'd assumed they'd fallen off the face of the DISboards and hadn't quite been updated yet. Of course, they're working now, so the problem is me! My apologies!

That's OK, sometimes things don't work correctly.

The chair you are getting is not the usual type of power wheelchair. There are a few brands that are foldable, but they are kind of un-common. So, generally using a power wheelchair means you need a special vehicle.
(This is a picture from the link the OP had similar to the one the OP is planning to use).

We'd most likely use some sort of bicycle lock to secure the chair, should we choose to leave it somewhere. I doubt we'll be leaving it much, unless he makes a sudden turn for the better or the progression of his disease drastically slows. He still has days where he surprises everyone, himself included, and we want to be prepared should he have one of those days while we're there.

Seeing the picture, a bicycle lock should do the trick. You would be able to go thru the spokes of the back tires (or one of the tires) to the frame.

Well, the chair we'll be renting from our local hospital is a foldable PWC that weighs about 130-140 pounds, very much like this one. We'll be driving an SUV there, and will have plenty of room to store it. We want to go with that over an ECV because should we need to push it (if he seizes and is too weak to steer, or is too nervous to steer through a crowd) we wont have any difficulty. We weighed the options of PWC vs ECV for a while, and the only thing keeping us from using an ECV for him is the problem an ECV would represent if we need to steer him out of the park for some reason.

Out of curiousity, what sort of wheelchair does your daughter use?

I would suggest before you go that you make sure you are able to push it easily with him in it. Some roll easier than others. You also want to make sure it is secure (like have it turned off, but with the motors engaged) every time he is getting in and out of it.
You may also want to take the power cord with you the first couple of days until you get an idea of whether or not it has enough power for a full day.

My DD's manual wheelchair is like this:
Quickie2 GP

Hers is actually purple like the picture. She has a Jay J2 Deep Contour Seat like this:

and a Jay J2 Deep Contour Back like this:

(imagine it with a black cover on).

Her power wheelchair is an Invacare TDX3, which was discontinued about a year after she got hers. She has the same seat and back on her power wheelchair as on her manual one. The similar substitute is the Invacare TDX SI

It's kind of funny to think that my DD weighs about 80 pounds and her power wheelchair weighs close to 300 pounds with the seat, back, etc.