Hypermobility Syndrome and GAC

[PlainJane]

I'm traveling with my mother and my best friend this coming July. My BF has hypermobility (I actually do to, but it's not as severe). On her bad days her knees and/or hips slip in and out of joint repeatedly. I always have to have an eye on her to make sure she doesn't fall. Some days it doesn't happen at all, and others it happens too many times to count.

We're staying onsite, so we will hopefully be able to borrow a wheelchair for free, and we'll have a rental site number on hand just in case. Once she realized how bad her problem was getting recently she didn't want to go at all, but now I think she has come to terms with idea of being in the chair some of the time. We'll probably always drive to the parks just so we will always have the wheelchair in the trunk in case a good joint day starts going downhill fast.

We're planning on using FP during the day, but my concern comes with EMH. From reading these boards I have gathered that FP machines are not always open during EMH. I also worry about the lines with stairs.

So here's my question. If we go to get GAC, are they just going to tell us she should just stay in the chair the whole time, and that a GAC isn't for her needs?

That comment would be like a punch in the stomach for my 17 BF. She's young, and she doesn't want to admit that she has a disability. I know, that if we can avoid certain lines or stairs, and took enough breaks that she would have a lot more days that she wouldn't have to use the chair.

Thanks for reading and any advice you have to offer.

 

[SueM in MN]

We're staying onsite, so we will hopefully be able to borrow a wheelchair for free, and we'll have a rental site number on hand just in case. Once she realized how bad her problem was getting recently she didn't want to go at all, but now I think she has come to terms with idea of being in the chair some of the time. We'll probably always drive to the parks just so we will always have the wheelchair in the trunk in case a good joint day starts going downhill fast.

Just to be aware - the WDW website says this about wheelchairs at the resorts:
Wheelchairs are available in limited numbers for Walt Disney World® Resort Guests at each Resort. Contact Guest Services or the Front Desk for assistance. A $315 deposit will be held on the Guest room account charged only if the wheelchair is not returned. Guests wishing to guarantee the use of a wheelchair throughout their stay should contact local area rental companies to make arrangements.
But, the written Guidebooks for Guests with Disabilities for each park, dated January 08, says:
Walt Disney World Resorts also offer wheelchair rentals to their Guests. Quantities may be limited. Please contact the Front Desk for assistance.

We're planning on using FP during the day, but my concern comes with EMH. From reading these boards I have gathered that FP machines are not always open during EMH. I also worry about the lines with stairs.

If she is using the wheelchair in lines, she will be bypassing any parts of lines with stairs and she will be boarding rides that have moving walkways at the exit, where the CMs have more control of the speed of the walkway.
Some of the lines that are accessible (ie, no stairs) have other things that might be problematic for her - like Soarin', Pirates and the Nemo ride at Epcot have very long queues - even if the wait is very short, you still have to go the distance.
Some attractions - like Soarin', Test Track and the walking part of the Backstage Tour at the Studio - include fairly steep ramped areas. Those are part of the queue and using a GAC would not avoid them (in Soarin', both the Fastpass and the regular queue). I don't know if walking up or down steep ramps would cause her problems, but they would not be changed by a GAC.

So here's my question. If we go to get GAC, are they just going to tell us she should just stay in the chair the whole time, and that a GAC isn't for her needs?

That comment would be like a punch in the stomach for my 17 BF. She's young, and she doesn't want to admit that she has a disability. I know, that if we can avoid certain lines or stairs, and took enough breaks that she would have a lot more days that she wouldn't have to use the chair.

Thanks for reading and any advice you have to offer.

In most cases, using a GAC would not shorten the total distance that she would walk compared to going in that same line without using a GAC.
It would allow her to avoid stairs and moving walkways, but it wouldn't really mean walking less. Most people don't really realize the distances walked until they get there - an average person walks between 4 and 10 miles a day at WDW (people have actually measured with pedometers). So, if she can't walk that every day, a wheelchair would be her best option. If she was over 18, I'd suggest an ECV, but the parks and most of the companies will only rent to people over 18. Randy's does make some exceptions for younger people and might rent one to her; especially if she is almost 18 and drives a car. An ECV might be more acceptable to her because it would give her more independence.

I don't know how un-expectedly her problems occur, but from what you wrote, it sounds like it does happen sometimes with no warning (since you say you always have to keep an eye on her). If that is the case, she would be safer using a wheelchair, even if it's not something she wants to do. If she does decide to request a GAC, she needs to be able to explain her needs. There is a possibility that they will say they really don't have accomodations for those needs other than using a wheelchair.

So, it might not be what she wants to hear, but might be the best. This is a [url="http://www.disboards.com/showthread.php?t=1798691]link to a recent thread with someone's experience using a GAC in a similar way to what your friend is thinking of[/url]

We didn't do many EMHs on our trip in April - we did MK and found no long lines in the things we went in. We were not going on the "High Demand" rides like Space Mountain, Splash Mountain and Big Thunder Mountain though. We have used EMHs on previous trips, even last year during Spring break. When we were at Epcot for EMH during Spring break in 2006, Test Track had a long line all evening and we didn't end up riding it. Soarin' was busy right away, but by 11pm, we were able to ride it as many times as we wanted. I think we went on 4 times between 11 and midnight pretty much as fast as we could walk on.
Some of the things have long lines to start with because people who had Fastpasses during the time the park was open to everyone are still using them. Once those people are all 'cycled' through, there are less people.

 

[Cheshire Figment]

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available wil increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

Please ask her 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!

 

[KPeveler]

your BF should DEFINTIELY plan on using a wheelchair basically the whole time. i know she is 17, but maybe you can talk to off site ECV companies about rentals. one may be willing to rent to her. she will not be able to push herself in a rental chair as they are way to heavy for her wrists...

i have EDS (hypermobility type) and i use a wheelchair there too. i am only 23, so i know how hard it can be to be young and disabled. if your friend wants to PM or email me, let me know. i can tell her some of what i have learned about touring disney with hypermobility problems

 

[Cheshire Figment]

Randy's will rent ECVs to people under 18 provided they appear to be able to handle them.

 

[KPeveler]

ok, here goes... here is some more info and concerns i faced in disney... i didnt have much time to form my last reply...

she will want a supportive padded seat. i find that in some places the rental chairs are very hard/have no padding, and this can actually make my hips come out of place.

i find standing is as bad as sitting because my knees hyperextend. there is basically no place to sit except in a wheelchair while waiting for rides, no matter how long you wait. i could not come up with any way the GAC could help me. really, using a wheelchair may be the best way of making things work. she will need to get from ride to ride, wait for it (and things like shows, a GAC doesnt help you at all with wait time, cause you have to wait for the next show to start). a lot of times, even if a GAC did eliminate in some way an amount of standing in line (such as an alternate waiting area, when one exists), she may still have to wait because they only allow a certain number of special needs people on the ride at once (for safety evacuation reasons).

a lot of people with EDS (related to HMS) are small for their age (i am!), and the park wheelchairs and scooters are too big for me to use. plus the park scooters require you to be able to hold your arm out in front of you for a long period of time, holding down a button/lever with a thumb/finger. because my fingers hyperextend, i cannot do this for more than a few minutes without losing all feeling in the finger. if i am not careful, i can actually sublux it. there is a chair called a "pride go-chair" that you can rent with a joystick, and your arm will be supported by a armrest... they may work best, depending on her particular needs... i dunno if that company will rent to people under 18 though.

check out the FAQs and ask me any questions you/she may have. a wheelchair can be very uncomfortable (i own my own chair, so mine is much better for me than a rental - i bought it on ebay!), and is DEFINITELY a pain to push. a scooter will give her independence.

i can say from personal experience, trying to "push through it" will NOT work. if she dislocates a hip in Norway, for example, she will have to sit somewhere while another person goes to another part of the park to get a wheelchair. she could sit there for more than an hour, and if the park is out of wheelchairs, then she may even have to be carried out!

please tell her to email or PM me if she just wants to talk to someone else dealing with this! its not easy, and is very scary the first time you have to use a wheelchair, but it can work! i promise!

 

[PlainJane]

your BF should DEFINTIELY plan on using a wheelchair basically the whole time. i know she is 17, but maybe you can talk to off site ECV companies about rentals. one may be willing to rent to her. she will not be able to push herself in a rental chair as they are way to heavy for her wrists...

i have EDS (hypermobility type) and i use a wheelchair there too. i am only 23, so i know how hard it can be to be young and disabled. if your friend wants to PM or email me, let me know. i can tell her some of what i have learned about touring disney with hypermobility problems

Oh, I'll be pushing her; I know she can't push herself. She'll actually turn 18 four days before we get there. We'll be there 2 weeks and I don't know if we can swing the price of a rental for that amount of time. I know people suggest to cut off a couple of days to pay for a power chair, but it's an II exchange and it doesn't work that way.


Thank you, to everyone who has offered advice. When we booked this trip she was doing a lot better than she is now. She's never been before, and she never exactly envisioned her first trip down main street to be in a wheel chair. It took a lot of convincing to even get her to still come. At this point she feels like a burden because of me pushing her (I try to tell her it will just be some good cardio), and I know she'll feel like a burden if we do rent her a scooter. Either way she feels like a burden.


KPeveler: Have you found any treatments or medications that help with your hypermobility? I also have it, but like I said it's not what I'd call debilitating yet. I've been going to doctors about it since I was 13 (I'm now 18), and they always suggest physical therapy which normally makes the problem worse. My BF has been going since she was about 15, and has had the doctors suggested the same thing to her. We don't know if physical therapy might be more beneficial from a therapist that actually knows what hypermobility is? Which we haven't found yet. Most doctors don't even seem to know what it is.

 

[KPeveler]

i hate to say this, but it is VERY Difficult to push someone in one of those chairs. a 14 day rental in the parks will be almost $140. i say you look at an inexpensive chair to get for yourself to own. there are some "transport" chairs, which do not have the big back wheels, which wont be a problem if she cant push herself, that weigh less.

especially if you have problems yourself, you should know those rental chairs weigh about 50-60 lbs... and they tend to pull to one side, and you cannot take them out of the parks. there is a fairly steep ramp to and from the monorail, which i find hard to walk... you may want to have your own, or at least rent off site.

i have not found a great treatment yet, and you have to be careful with PT, cause you're right. it can get worse. pop over to www.butyoudontlooksick.com/boards, and you will find a lot of us with invisible illnesses people there may have some more ideas

 

[KPeveler]

oh! i also forgot... you can get your insurance to cover scooter/wheelchair rentals a lot of the time!!! her doctor will probly be willing to give her a note to cover it, just for this trip (my doctor did).... so you may be able to get her insurance to cover her scooter for the trip!

 

[SueM in MN]

Here's a picture of the ramp going down from the monorail station at MK to the park entrance. It doesn't show the long slope really well, but we started up at the level of the handrail at the top of the picture.

Here's another picture of the monorail ramp, this time going up. We were about 2/3 of the way up in the picture.

My DD is small and light (5 feet tall and less than 90 pounds). She has a lightweight custom wheelchair. Even with both of those things, it's not easy pushing the wheelchair up and it's hard keeping it from getting away from us going down.

Most of the rental companies that rent power wheelchairs will only rent them to people who have experience using them (the chairs with joysticks that KPeveler mentioned). You could try calling some of the companies and asking anyway, but they may not agree.

 

[PlainJane]

My DD is small and light (5 feet tall and less than 90 pounds). She has a lightweight custom wheelchair. Even with both of those things, it's not easy pushing the wheelchair up and it's hard keeping it from getting away from us going down.

In the past I've had to push my mother (who is bigger than me) up that ramp. She was temporarily unable to walk after a car accident, and that was a much shorter trip. My poor mother even had to push me around for a couple of days after my knee had a bad dislocation, while we were already on vacation. I was 14, and no one was going to rent a scooter to a kid that age. That's another thing I worry about, that my knees or shoulders will flare up, while we're there.

Thank you, for trying to remind me of the obstacles we'll face once we get there. You really do notice each and every hill when you're in a wheelchair. Normal ramps, that I wouldn't think twice about walking up become huge mountains. I also start disliking carpet, a lot.

oh! i also forgot... you can get your insurance to cover scooter/wheelchair rentals a lot of the time!!! her doctor will probly be willing to give her a note to cover it, just for this trip (my doctor did).... so you may be able to get her insurance to cover her scooter for the trip!

The worst the can do is say no. It would be wonderful, if they could cover any portion of it.

Thank you for the insurance info and the website.

 

[KPeveler]

sue - scooterama rents the pride go-chair to anyone... however, that is the only joystick driven chair i have seen that can be rented to anyone...

 

[SueM in MN]

sue - scooterama rents the pride go-chair to anyone... however, that is the only joystick driven chair i have seen that can be rented to anyone...

I thought someone did, but was not sure who.
I have seen people using them in the parks who had obviously not used anything with a joystick before and were sort of making circles and veering off to one side because they could not keep straight. Much harder to drive a joystick than many people would think.

 

[KPeveler]

i would look for one to rent locally first, just to try it out... i just can't drive a scooter at all, and if i went without my dad to help push my manual, i would need something to help!

i just know scooters + hypermobility can be a pain (literally)

plainjane - i would be worried about you flaring from pushing your friend... i would talk to your drs (yours and your friend) to see if you can get one of them to cover a scooter...

 

[KPeveler]

oh, also, look into rentals in your area... i wouldnt bring a rented scooter on a plane necessarily, unless the company is okay with it - you would NOT want to have to buy them a new scooter when an airline breaks it. however, it is much harder to break a manual chair. i rented a lightweight chair from a local company for $5/day or $100 a month... and i was able to push it on my own a little. it was DEFINITELY more comfortable, and better fitted than the park chairs. i use a 15 or 16" wide seat on my own chair, and a lot of the park rentals are 20" wide... that means i couldnt even use the armrests... why dont you look into some local companies too?

also, check out sites like 1800wheelchair .com (which i have never used, so i cant endorse it, but i know others have had okay luck with it)... for the $140 you would spend on a park rental, you can BUY a wheelchair, that she would own, she could personalize it (like putting patches on the back), use it in airports (orlando airport is HUGE), and at the resort, disney quest, etc. just a couple of ideas!