To Wheelchair or Not to Wheelchair...

[lilwhiterabbit]

To wheelchair or not to wheelchair... isn't that always the question?

A not-so-brief introduction and then a question:

I'm planning my fifth( I think?) trip to WDW for October of 2010. Right now, it looks as if it's just going to be my partner and myself. In July 2009, I went with my parents and my son, and all previous trips have been with groups of friends, normally with children.

My son, 9, is autistic, but extremely high-functioning, so I've already experienced what WDW can be like for someone with his sort of special needs. We obtained a GAC for him, that helped minimize crowd-crush and over-stimulation in lines and it worked like a charm. There was only one big melt-down while waiting for Voyage of the Little Mermaid and that was because, like a doofus, I forgot to show the CM at the entrance the GAC.

Now that I'm going back without my son, however, I'm unsure of how to proceed. I, myself, have a host of medical issues that will probably come into play during my trip. The two largest are that I have Ehlers-Danlos Syndrome - Hypermobility Type, as well as Fibromyalgia.

Aside from the pain, which I'm pretty used to at this point, the Fibro means I get exhausted fairly easily, but I'm pretty good at managing my energy levels. The EDS is what I'm really concerned about, however, as I've got fairly severe issues with my arches, ankles and knees (and now maybe hips, unfortunately). I wear orthopedic insoles for my 'flat feet' and sometimes braces for the ankles and knees, if they're feeling particularly sore or wobbly that day. I'm mobile, but I can't stand in one place for more than several minutes at a time without severe pain or injury to the lower half of my body and stairs are such a serious issue that I don't even bother with them anymore.

That said, I did really well at my previous trip in July. I wore my braces and managed to remain uninjured and completely mobile throughout the entire trip without exhausting myself. This was aided in part by frequent rest brakes, but also because my son's GAC helped mitigate some of the hassles of standing in line (I don't know how much detail I'm allowed to go into here, so I'm going to keep it vague until told otherwise).

Now that I'm going back without him, I'm unsure whether I should request a GAC for myself, or if I should just suck it up and get a wheelchair or ECV? I've had to use an ECV at another non-Disney themepark and found it exceedingly frustrating, so there's a part of me that doesn't want to have to do that again. Plus I did well in July without a wheelchair/ECV, though I know this was, in part, helped by my son's GAC. However, I flat out can't stand in line for very long, so a wheelchair or ECV may be the better way to go.

So what do you think? Should I try the GAC route or rent a wheelchair/ECV? There are so many pros and cons for both!

 

[bidnow5]

If you aren't sure then you should either rent a wheel chair or ECV. The best thing I ever did to make out Disney trips more fun was to start renting an ECV. If you get tired you slow down and everyone has to wait for you all day. I am a big guy so a wheel chair wasn't a choice for me. Pushing someone all day gets very tiring. I always recommend an ECV to take the pressure off everyone

 

[KPeveler]

i am also an EDSer, with neuro problems, sensory problems, and fibro-like stuff...

I found an ECV impossible because all the ones i have used are thumb-driven. my thumb bends backwards 90 degrees, and i cant hold my arms up enough to drive it...

i found a manual chair good, but now my neuro problems are such that i have to use a powerchair.

if you are not comfortable using an ECV, using one in a crowd is worse!

PM or IM me if you want to chat more about advanced EDS problems in disney

 

[peemagg]

If you have problems with your hands like KPeveler has, then go with an ECV that has the type that you pull with you fingers in a more natural position. I know that the Pride Go-GO Traveler Plus has this style and Apple Scooters rent theses scooters.

 

[KPeveler]

i am not sure what kinds of propam not certain what kinds of problems with their hands the OP has, but there is no type of scooter which works for me. EDS causes spontaneous dislocations, and i cannot have that kind of pressure on my fingers for more than a minute or two without them coming off... i drive my powerchair with my palm.

try a bunch of kinds of scooters - i definitely know that not every EDSer is made the same! if you cant drive any of them comfortably, then look into a manual wheelchair...

 

[Cheshire Figment]

The normal (and official) reaction of Guest Relations for a mobility/stamina situation is recommending rental of a wheelchair or ECV and not issuance of a GAC. Many of the long attraction lines, such as Space Mountain, Soarin', and Safari do not have any alternate entrances or waiting areas.

 

[KPeveler]

The normal (and official) reaction of Guest Relations for a mobility/stamina situation is recommending rental of a wheelchair or ECV and not issuance of a GAC. Many of the long attraction lines, such as Space Mountain, Soarin', and Safari do not have any alternate entrances or waiting areas.

I will say this (i PMed you as well) - DO NOT RENT A WHEELCHAIR THERE!!!!

With EDS, if a chair does not fit you properly, it will make things much worse! Disney rental chairs do not adjust, and I dislocated my left hip just sitting in one long enough to get to POTC after leaving my powerchair outside!

They are also mesh, which is like a cheese grater on EDS skin! The offsite rental ones are vinyl, which is also a bad thing...

I would definitely look into bringing a wheelchair or using a rollator (walker with a seat), but get your OWN or bring one from HOME, so you can make sure it does not hurt you.

Also, i dont know how tall you are, but most EDSers are actually shorter than usual, and I found the disney scooters to literally be too big for me. If i sat all the way back in the seat (which i need to do - must always have my back supported), i could not reach the tiller even with my arms fully extended!

My suggestion is to talk to your dr, ask advice, try lots of things, but try to bring something from home whicj you know does not hurt you.

Also, ALL attractions have hard seats - if you have a seat cushion, you can use it on almost any attraction seat, except when it is a safety concern (POTC, due to the drop, for example). My hips BOTH slid out sitting on the hard seat on IASW and Buss Lightyear... Just another thought to make the trip easier.

You will not be able to push a manual chair yourself, so you will need someone strong to push you for that reason.

If you cant drive an ECV due to your hands (like me) and cant be pushed in a manual (dont know who is going with you), talk to GS and explain your problems - they may have some creative solutions!

 

[goofieslonglostsis]

LWR; how long have you known about the EDS and what have you learned about it since? Even more important how much have you learned since that is applicable to YOUR EDS? That information -or perhaps lack there of- can make a huge difference in which ways you might want to lean with regards to this question.

For instance in my case serious overdoing -which WDW is for me, has multiple causes- means permanent deteriation. Knowing this, I'm more carefull in deciding what I will or wont do, knowing what the 'cost' of it might be in the end. For those alike, you'ld rather go towards using a mobility aid with still some playroom left than reach for one after the fact.

Others are more trainable. While overdoing it will drain and take (a lot) time to recoop, they can basically get back to 'baselevel' thanks to maintaining a proper training routine. In such a case, you've got some more playing room.

Ask yourself the question if you can still do the walking involved. If not; you've just gotten your answer and only need to find out if an ECV or wheelchair (whether manual, mechanically assisted manual or powerchair) will be your friend this trip. If the answer is yes though, you might want to look into something called a rollator. Not only is it a lot easier to walk using a rollator -I've seen folks almost running again -, but with the right type of rollator there will be a small space on top where you can sit on while in line.

As you might already know, with EDS it's even more important to keep up what you've already got. If for you that means that for instance you can still do 80% of the walking involved; great! Go ahead, do so, enjoy it and appreciate the benefits it does for upkeeping muscle strength. If that means weird looks from others; THEIR tough luck, THEIR problem. Don't stay put in/on an aid because of what is 'expected', nor shy away from using one because you 'might not look like' needing it.

Don't know how proun -or not- you are to dislocations because of unexpected touching etc.? Luckily most aren't really, but if you are, you might want to use the aid for a second purpose; creating own space. Some of the mainstream waitlines like for instance at Soarin' will, well, as the name says it; be mainstream. You will be in one space as those walking around. An amazing amount of those folks seem to have this condition called mobility-aid-blindness. They will not see you, until the are knocking into you. I will manouver my powerchair into such a position it is impossible for people to bump into my body. Whenever possible, I'll also manouver it in such a way they can only bump into other parts than the seat. While I will still feel that, it has a lot less risk than having folks bump into the seat itself.

Look at YOUR situation. What works for others with EDS might not work for you and vice versa. Going by others could mean you cheat yourself out of an option that would've fitted you like a glove. Look at what might work for you and try it out at home. While it's not WDW, you will learn if the aid fits your expectations or not, hidden problems and hidden gems. You have basic knowledge of WDW, so know more or less how to translate this experience to a possible WDW one. If unfamiliarity with an aid is a problem, you can also tackle it this way. Still not so sure or uncertain? A proper OT with either proper knowledge of EDS or proper learning skills and eagerness can help you a long way to find something that fits you like a glove.

 

[lilwhiterabbit]

I really appreciate all the responses to my question. I'm glad to see everyone is so friendly and willing to help.

To answer some of your questions, I do have problems with my hands and grip, but can generally go for a while before it will cause any real damage. My hands will be achy after doing something like gripping a steering wheel for about an hour, but overall they're in pretty good shape. I can injure them by using them too much or putting too much pressure on them (opening jar lids is a good example), but I don't think that will be too much of a problem.

My biggest concerns with ECVs are twofold:

I find trying to travel through a crowd on one endlessly frustrating, as many people don't seem to notice they're even there and I'm constantly paranoid I'm going to hit someone or they're going to fall on me. And because, like KPeveler mentioned, I'm shorter than the average bear. I know not all ECVs are made equally, so I would have to locate one that allowed me to move the seat forward or steering column back so I could sit all the way back in the seat, thus not dislocating my back or shoulders while trying to steer (which is what happened the last time I used one). I *do* plan on looking into different types, though, before I make the decision whether to use one on this trip.

I've used manual wheelchairs before successfully, but, as mentioned, I would have to have someone to push me. I am going with my partner this time, and he's volunteered to wheel me around the parks, but he also has foot and ankle problems, so I'm not sure I want to put that sort of pressure on him. He's normally fine on his own if he wears braces, but adding the extra resistance of me in a wheelchair might make things much worse for him.

I've got a stability cane that I use on particularly bad days, so right now I'm really leaning toward the rollator that was mentioned, as I'm thinking that might be the best fit for me. Having done WDW several times now, I can tell you it's definitely the *standing* that really bothers me, rather than the walking, so having something that will allow me to remain mobile, but still have a seat in line may work really well for me.

I'm intending to keep my options open and do some experimenting before we get there. I do normally step up my fitness and activity levels a few months in advance to prepare me for the parks. That's part of what helped me get through it last time and I'm pretty sure it's going to help this time too.

P.S. - KPeveler, I got your message, but I'm not allowed to send PMs because I have less than ten posts on the boards. I tried replying, but I'm not sure if it got through!

 

[KPeveler]

that's ok - they'll let you PM soon!

I used a rollator for a while before my neuro problems moved me up to full time wheelchair use. It was VERY handy to sit down whenever i needed to.

the only ride i can think of where it might be a problem to use the rollator is HM - i know they wont let you bring a manual chair in the stretching room, but I dunno how a rollator works.

I found maneuvering an ECV too difficult, but you can usually sit in them and try them in local rehab hospitals or vendors locations - you may find one that works great for you!

Hope you figure out what works best for you!

 

[goofieslonglostsis]

I really appreciate all the responses to my question. I'm glad to see everyone is so friendly and willing to help.

To answer some of your questions, I do have problems with my hands and grip, but can generally go for a while before it will cause any real damage. My hands will be achy after doing something like gripping a steering wheel for about an hour, but overall they're in pretty good shape. I can injure them by using them too much or putting too much pressure on them (opening jar lids is a good example), but I don't think that will be too much of a problem.

You might want to talk to an OT and discus something called silver ring splints. Warning though, if you google them there is a realistic risk of you going on the spot. Great thing about these splints is that they will keep fingers in place and prevent you from making movements that aren't within 'normal' range, but they do NOT keep you from moving and using your hands in any other way like traditional splints would. It might mean you'll have to relearn some things if you are now doing those things by putting your hands in harmfull positions, but they are true life safers for all kinds of small daily things you might run into hand problems with.

My biggest concerns with ECVs are twofold:

I find trying to travel through a crowd on one endlessly frustrating, as many people don't seem to notice they're even there and I'm constantly paranoid I'm going to hit someone or they're going to fall on me.

This is not an ECV related thing. You'll run into this with any type of aid, heck even without. (allthough one becomes more invisable with an aid ). Paranoïa concerning your own driving skills can be killed by getting yourself to a level of good driving skills -never mind which aid-.

Others; be as noticable as you can be. Some will use stickers, bright colours, a light in the dark, talk a bit louder to your husband (read; so folks can hear you). Become friends with the phrase "excuse me". It's an all time user for both passing folks in your way as well as scaring those you feel are heading in a beeline for your lap.

A pro-active driving style will prevent any incidents by a very very high score. It'll never become zero, but hey. Those walking around also bump into eachother every now and then.

And because, like KPeveler mentioned, I'm shorter than the average bear. I know not all ECVs are made equally, so I would have to locate one that allowed me to move the seat forward or steering column back so I could sit all the way back in the seat, thus not dislocating my back or shoulders while trying to steer (which is what happened the last time I used one). I *do* plan on looking into different types, though, before I make the decision whether to use one on this trip.

Don't know the US rental market to it's detailed details, but there are many brands out there that will provide these options. If you find yourself using one on a more regular base AND find it a good option for yourself (plus some personalized settings, options etc.) maybe it's worth looking into getting your own?

I've used manual wheelchairs before successfully, but, as mentioned, I would have to have someone to push me.

Depending on your level, this might be no longer needed when going for a mechanically assisted manual chair. One of many options for instance are called E-Motion wheels. Simply put, these wheels run on batteries where if you even put the lightest of 'push' on the rims, you'll go "flying" fast. Wouldn't be surprised if they aren't readily available for rent on the US market, but still mentioning it in case you ever need to consider options for a chair of your own and disregard the option of manual without knowing the extra options out there.

I am going with my partner this time, and he's volunteered to wheel me around the parks, but he also has foot and ankle problems, so I'm not sure I want to put that sort of pressure on him. He's normally fine on his own if he wears braces, but adding the extra resistance of me in a wheelchair might make things much worse for him.

Besides all of this, it wouldn't surprise me if you are a regular person. You know the ones that have learned to say "I wanna do myself" since about the age of 3. While help isn't horrible, I could totally understand you not thinking this is an option even just on the not being independent factor.

I've got a stability cane that I use on particularly bad days, so right now I'm really leaning toward the rollator that was mentioned, as I'm thinking that might be the best fit for me.

In that case I would definately recommend trying one out at home.

 

[KPeveler]

You might want to talk to an OT and discus something called silver ring splints. Warning though, if you google them there is a realistic risk of you going on the spot. Great thing about these splints is that they will keep fingers in place and prevent you from making movements that aren't within 'normal' range, but they do NOT keep you from moving and using your hands in any other way like traditional splints would. It might mean you'll have to relearn some things if you are now doing those things by putting your hands in harmfull positions, but they are true life safers for all kinds of small daily things you might run into hand problems with.



This is not an ECV related thing. You'll run into this with any type of aid, heck even without. (allthough one becomes more invisable with an aid ). Paranoïa concerning your own driving skills can be killed by getting yourself to a level of good driving skills -never mind which aid-.

Others; be as noticable as you can be. Some will use stickers, bright colours, a light in the dark, talk a bit louder to your husband (read; so folks can hear you). Become friends with the phrase "excuse me". It's an all time user for both passing folks in your way as well as scaring those you feel are heading in a beeline for your lap.

A pro-active driving style will prevent any incidents by a very very high score. It'll never become zero, but hey. Those walking around also bump into eachother every now and then.



Don't know the US rental market to it's detailed details, but there are many brands out there that will provide these options. If you find yourself using one on a more regular base AND find it a good option for yourself (plus some personalized settings, options etc.) maybe it's worth looking into getting your own?



Depending on your level, this might be no longer needed when going for a mechanically assisted manual chair. One of many options for instance are called E-Motion wheels. Simply put, these wheels run on batteries where if you even put the lightest of 'push' on the rims, you'll go "flying" fast. Wouldn't be surprised if they aren't readily available for rent on the US market, but still mentioning it in case you ever need to consider options for a chair of your own and disregard the option of manual without knowing the extra options out there.



Besides all of this, it wouldn't surprise me if you are a regular person. You know the ones that have learned to say "I wanna do myself" since about the age of 3. While help isn't horrible, I could totally understand you not thinking this is an option even just on the not being independent factor.



In that case I would definately recommend trying one out at home.

I crave both Emotion wheels AND silver ring splints - the problem here is that most OTs/PTs don't know what they are (either of them) and insurance will NOT cover either one in most cases... They will cover a $20,000 powerchair for me, but NOT $7,000 wheels! go figure....

 

[goofieslonglostsis]

An OT not knowing a product can be overcome very simple. Telling them about it! SRR's not being covered in the US is contrary to what I've heard from many other experiences, but of course I believe what you say. Having said that, it is worth to invest in them yourself. I've seen amazing prices being quoted to some in the US. Even comparing to the -much higher- prices put on mine, one can get a lot done for the cost of one trip to WDW. With proper care taking, SSR's can easily be used for many years to come. Only downside is that some folks will need two sets; one for winter and one for summer do to size being so important and even slight retaining of fluid can cause one to need 2 sizes depending on weather.

 

[KPeveler]

I am actually seeing if BRS will help me pay for silver ring splints, since I cannot type or hold a pen without them. Right now I am making do with Oval-8s (non-sizeable plastic ones). I should rephrase what i said earlier - the Silver Ring Splint Company does not accept or bill insurance - insurance will sometimes pay for them, IF you have out-of-network coverage or they approve an exception - as of right now, I have had no dice with this But BRS may help!

I told my PT/OT about the power-assist wheels, but unfortunately, she didnt read much about them, and only after a wheelchair was spec'ed out did she announce that she just did whatever the vendor said. then the vendor tried to sell me M-11 wheels - non-programmable and OLD technology. Needless to say, I found another PT who specialized in wheelchairs, and by then my condition had progressed to the point that i needed a powerchair (guess it was lucky she didn't know anything, i guess!)

I am going to pay outright for SRSs if i have to - everyone i know who has them just raves about them!

 

[lilwhiterabbit]

Ooh... the silver ring splints look awesome. They remind me of something a cyborg would have.

I just wanted to let you guys know that I have, in fact, purchased a rollator and it is fantastic! I used it while shopping today and it worked wonders. Best of all, I got it off Craigslist for much less than I'd originally thought I'd spend. I think it's going to do just fine at WDW.

 

[goofieslonglostsis]

Congrats on getting the rollator. Wishing you many usefull years with it.