Newbie with RA

[mamaloya]

I have been lurking here for a while and reading. I am in a little bit of denial about my needs, so posting this is very hard. I have rheumatoid arthritis. We are just now in the process of trying different meds. Anyway, I have mobility issues. I live in army housing and they are modifying my current 2 story because I am not ready for the ADA homes yet, not to mention I don't want my kids to move away from their friends. I have great difficulty with stairs, especially in the morning and some evenings. There are days where it is all day, but those aren't many. I am not sure how I will be when our trip comes the 1st of Feb.

I am reading a lot about w/c's on busses. I have not decided whether or not to rent offsite, buy, or rent on a day by day basis. I am staying at FW. We will drive to AK and MGM. We will take the boat to MK and the boat/monorail to Epcot. I know that some boats can accomodate a w/c and some cannot. Now, back to the busses. I was reading the argument about whether to hold it or sit in it. I am travelling with 10 other people. My kids, my niece and nephew and a friend of mine just decided to join me with her 1 and 2yo's. My dh will not be there. I know that some busses "kneel" and some are low enough that I should be able to make the first step even if my ds16 has to help me. We will only have 1 double stroller in our group. We plan to rent another one in the parks. I can make the stairs if I pull myself by the handrail, but it is slow. I also have days where I walk at a snails pace. Some days are great though. Sometimes I start out bad and get better, sometimes it is opposite. I do know that if I push myself too hard one day, then I am worthless the next. I don't do the "disney or die in a day" type touring. We will have 7 day tickets and plan to spend 2 days in each park, except AK. We will go slow.

Now, I guess I should get to my question about now huh?! Well, what would any of your advice be. I would hate to bring a chair into the parks and then not need it, but also would hate to not have it and then send someone to rent it for me. ds16 would love to go get it and "drive" it to me as there is no way I would be able to go back for it. I also don't want to deal with the busses and boats. Now, if anyone has stayed at FW, you have to take a bus to the depot to catch the bus or boat to the parks, which is why we drive to MGM and AK. It can be a walk to the first stop depending on where your site is. It is also a walk to get to the marina from the bus stop. As long as we are not in a hurry, I will be fine. We do have breakfast at Ohana one day at 8:30am before we head to Epcot. That will be a bus to the marina and then a boat to CR and then monorail to the Poly. I guess we leave at 7:30 am.

OK, so I guess I don't know what my exact question is. One I do know is do I need a GAC. I know I can't stand for long which is why I only go in value season. So, any advice on how to do this. I have been to WDW and FW many times before, so I know what is involved, just not in a w/c. HELP!!!

Sorry to ramble on and be so confused, but I honestly don't know where to start. Thanks for being patient with me.

[Cheshire Figment]

Hi and :welcome: to disABILITIES!

I cannot answer most of your questions. However, if youo go to Guest Relations for a GAC that is related to either mobility or stamina the response is that you should rent a wheelchair or ECV. It is not intended to allow you to bypass lines.

All the boats can accomodate wheelchairs. Some of the smaller yachts cannot accomodate ECVs all the time. What you may need to figure, in advance, is who will be walking, who will be riding in strollers, and who will be pushing strolers. This comes down to the question of can you be regularly pushed in a wheelchair?

We tend to recommend renting from off-site, so you have the chair available at all times. Note that even if you think you may not be needing it in a park, there is nothing to prevent you from walking and using the chair for support.

And then there is the other potential answer, and that is to rent an ECV.

Also, make sure that you have a handicap parking tag; it can be a real lifesaver.

And I would suggest driving to the breakfast in the Poly, and then drive over to Epcot. You would have to get a bus to the marina, then wait for a boat, then get to TTC and get from the boat over to the Resort Monorail, and then it is three stops to the Poly. I would say that it would be closer to 1½ hours rather than one hour for the transportation.

[sixxmum]

I have RA (for 10 years +) and I completely understand. I've done WDW 3x so far with RA. My best advice, if you don't want to get a scooter or wheelchair, is just take it slow and easy and make sure your family all understand that is what you need to do. Someone else can always run ahead and get FastPasses for the rides that will fill quickly. If you have a handicapped tag for parking, use it. I didn't the first 2 times and by the end of the day I was crying trying to get back to the car. My spouse isn't comfortable with me using a scooter or wheelchair, so I just have to go slow and hang in there. The good news is that a lot of disney is sitting down, so that helps some, and there aren't that many stairs to manage other than in the transit station. Good luck with all your decisions and have a great trip (we go back Jan 4-12)

[mamaloya]

Thanks for the responses.

The ECV is cost prohibitive for me. I do not have a handicapped sticker. I was going to ask about it at my last appt, but feel a little silly even though there are days when I have to get groceries and almost can't make it into the store.

Thanks for the info on boats and w/c's. That is good to know. As for the poly, I was told that there is a boat from FW to the Contemporary and then I could hop the monorail to the Poly. Was that info incorrect? We could drive, I just wanted to take the monorail into Epcot our first day. We will also be going to Epcot later in the week after a 10am breakfast with Chef Mickey. That will be more easily doable by boat and monorail.

As for the GAC, I was not trying to avoid lines, but I thought I read that you can wait in an area where you can sit. So I was thinking that the others in my party could get in the regular line and I could sit somewhere until it was our turn to load. That time of year the lines are usually only 5-10 minutes anyway, so I may not need it much, but ya never know when there is going to be a 45 min wait. I just need to be able to sit while we wait. Is that possible?

We will have enough people to push 2 strollers and 1 wheelchair. My friend will push hers, my ds16 will push me, and dn16 will push the other stroller. Then there will still be dd11 and dn14 around to pick up any slack. I can also hold dd4 in my lap.

[aPiratesLife4Me]

I would say the wheelchair might be the key to your enjoying WDW even more. Can only speak for myself...but without it I would not be able to go. I am mobile, to a point, (muscular dystrohpy, and with each year the progression makes it more difficult to get around) and our first 2 trips years back, I rented wheelchairs at the parks. this was OKAY, but, by the second trip it was then terrible for me to leave the chair and make my way all the way to the bus and stand and wait for however long we had to. Then the walking from the bus to our room at the resort, it just was too much. Got my own manual wheelchair after that and have to say what a blessing...at the parks as well as the airport. I never would have made all the walking involved at the airport leaving home or arriving at MCO. Anyway, I have no input on a GAC at all, sorry. But for me the wheelchair opened up a whole new world, as much as I did not want to accept one at first, if I was not using one now I would miss out on everything with my husband and kids.

This board has some wonderful people here and if you search some threads you will find great info. about using a wheelchair at WDW, and also about places to rent them if you decide to do that. I have found the more information you have..the more prepared you are, the better trip can be. Our most recent trip, in 2007, was by far our best as I was most prepared and these boards were a great help.

Sorry if I didn't really answer your questions, just kind of wanted to throw out there how I felt. Hope you have a GREAT trip!!!

[mamaloya]

Thank you aPiratesLife4me. That is EXACTLY the info I was looking for. I am still in denial. I just can't accept the need for a w/c. I am only 35. I should still be leaping and bounding. I do have days where I can, but if I overdo it, I am in a lot of pain the next day. Of course, that does not keep me from doing it anyway. ;) I just don't want to have a flare up while at WDW.

You say you have no experience with the GAC. Does that mean that you didn't need it. How were you accomodated on rides. Were you able to wait in a different area to avoid standing in the line. And I don't mean waiting, I mean standing. I have no problem waiting, it is the standing I can't handle. I can handle walking better than I can handle standing. If I stand in one place for more than a couple of minutes, my lower back and hips kind of lock and I have trouble moving again. (Boy do I sound old!) Of course, even sitting for too long is painful, so I will be glad to get up and go into lines that are quick moving.

Also, how do you handle parades and fireworks? There is no way I can stand for them, but there is no way I can see sitting. Do I have to arrive early at a certain place? When we were there last Dec we went to MVMCP and sat outside the country bears. I got to sit AND see. I was not in a wheelchair and sat on the little porch on the edge. The stroller was in front of me. It was perfect. I don't think I could get there in a w/c.

Well, I think after Christmas my mom is going to come with me to look at w/c's. It is going to cost more than renting, but then I will have it if I ever need it again. You did make a good point about getting to the car and/or bus at the end of the day, especially being at FW. I am also not ready to accept a handicap permit. I just don't think of myself that way. I do remember on our last trip feeling so bad at the end of the day at Epcot. They actually lent us a wheelchair at no charge to take into the parking lot. I think they called it a courtesy chair. It was such a wonderful blessing.

Thank you so much for the info and pep talk. I really needed that.

[aPiratesLife4Me]

My neurologist wrote up a prescription for the wheelchair and our insurance paid for it, so that was a blessing.

I don't need a GAC because with the wheelchair I have no need to stand in the lines, which is one of my issues. If the line for the attraction is accessible, as many are, my husband pushes me through the same line as everyone else and we are almost always treated wonderfully with some understanding cm's who are in no way pushy or anything with me. I usually explain my needs...yes I can get up to transfer, I just may be a little slow. ;) There are some threads here that can explain specific attractions to you so you can decide beforehand if you will need to ask for something specific when you are there. For example, I cannot do the Haunted Mansion stretching room....I will not walk in there with my cane and take the chance of falling or tripping. I ask that we bypass it please. Getting on some rides is difficult...haunted mansion being one, with the moving walkway. I have been fortunate in having them slow it down and my husband helps me in. There are a few threads here about POTC you may want to read...just to have an idea of what they might ask of you there. Just don't be afraid to: speak up for yourself, and ask questions when needed. An example...one trip we were in AK and did Kali River Rapids. The cm took me to the wheelchair entrance where they pull the ride vehicle over to a STOP and I was able to get in and out without too much of a problem. Later in the week we went back, told by a cm I would have to get out of my chair and walk onto the regular entrance. (stayed in my wheelchair the entire line until the very end, where they could have sent me left to the wheelchair area) as this is also a moving area getting OUT after the ride was not a good situation for me. Lesson learned, after that I spoke up for myself and said sorry but I cannot do that and they are usually very good about listening.

Parades and fireworks, well, someone else will have to help you there. As sad as it may sound, lol, we usually end up not taking the time for the parades as we decide there is so much else we want to do. Fireworks, we also don't line up for those but depending on where you are in the parks you still might get a good view. It's one of those things we say "next time" we will plan around the fireworks and still have yet to do.

I am 39, so I fully understand what you mean, as I am sure do many others here. I read this board more than I post on it, but it has been a big help. I think the biggest help is just knowing you are not alone. My handicapped tag, I have one and use it only when I have to. I am usually with my husband who can always help me into and out of the car and we carry the wheelchair in the trunk so even if we park further out I have him and my kids to help me. It is good to have and there are instances when I really do need to use it, so all I can say is there is nothing wrong with you getting one in your situation. It was another of those things I did not want to accept...but what can I say, I have a wonderful husband and children who are there for me in every way they can be and these things HELP me to enjoy more of life with them. Every day I am thankful for all that I have, I am truly blessed.

Happy holidays :santa:

[OneLittleSpark]

I too understand what you're going through :hug:. I'm 22 and now need to use a wheelchair pretty much any time I leave the house, due to undiagnosed joint pain (probably something in the region of Fibro or CMP). I know it's not easy to accept a wheelchair, especially when you feel you should be bouncing around on your feet for hours at a time, but they really can help. Before I get the chair I was becoming more and more housebound, but now I can go out folk dancing, shopping, for a 'walk' etc as much as I like (well, as much as the fatigue will permit, now). If you need some moral support, or to talk to people who understand what you're going through, you might like to check out But You Don't Look Sick (http://www.butyoudontlooksick.com). There are lots of useful articles there, as well as a message board, which is really useful. There are quite a few of us DISers over there now, so you'll be in good company!

Now, as for Disney. I really would suggest you use a wheelchair, as it will make the holiday a pleasure rather than a trial. Whether you buy or rent from off-site is up to you, but I would suggest you did something that allows you to have it 24/7. As you said, buying might make more financial sense, but before you do that, see if you can get it paid for on insurance (you'll need a prescription) as this will make even more financial sense!

I would suggest you take the chair into lines with you, as this will mean you can sit while you wait. Doing this would be a lot easier than trying to get an alternative place to sit, as not all rides have seating areas, and it may over-complicate things. When you approach the ride you should find a CM at the entrance. They will direct you as to where you go with the chair, and will be able to answer any questions on boarding procedure.

Most rides can be slowed or completely stopped to allow you to board if needed, but you may have to ask for this (Peter Pan cannot be slowed or stopped except in emergencies, for safety reasons). Some CMs at some rides may ask you whether you can walk a bit; make sure you ask them to clarify. Sometimes this means a few steps from the chair to the ride cart, sometimes it means the entire length of the queue with starts and stops (not fun!).

For Pirates, I would suggest you insist on using your own chair. They will often try to persuade you to change to one of their's, but the footplates are very high, which gets painful quite quickly. If you use yours, a CM will have to wheel it to the exit for you. Some people have said that they have got to the exit before their chair, but we rode a lot in September, and didn't have a problem once (as you're going at a quieter time, this should hopefully be the case for you too).

I would suggest you look through the FAQ thread at the top of this board. It has loads of information on all sorts of things, from boarding buses to getting on rides. There is also a link in it on tips for wheeling Disney, which you may well find useful.

For parades and shows, there are wheelchair seating areas. They are marked on the map with a red box containing a wheelchair and a letter P (I think it may be a letter I for Illuminations). These areas are manned by CMs and will ensure that you get a good view without some idiot standing in front of you at the last minute. For the fireworks, they don't have wheelchair seating, but there are lots of good areas to park up. I'd suggest one of the bridges leading from the hub. You can pull right up to the railings so no one can get in your way.

Not all of the boats can be wheeled on to; some of them you will have to fold the chair, get someone to carry it aboard and walk onto. The ones that can't be wheeled onto are the smaller ones with a canvas top, that look a bit like the Steamboat Willie boat (at least they do to me). I think these do the little hops between the hotels now, and the bigger ones (that you can wheel onto) go to MK. IF in doubt, ask a CM.

I'd suggest you wheel on to the bus and either get strapped down, or transfer to a seat. The lifts and ramps are actually very easy to use, especially with a manual chair. I found the journeys were a lot more comfortable when I stayed in my chair and didn't have to strain myself hanging onto the thing.

Are you under canvas or in a camper at FW? Whichever it is, make sure you have good bedding, to avoid causing a flare up. If there's not room for a wheelchair inside, you might want to bring a tarp to cover it with, so it doesn't get wet. All the comfort stations apparently have wheelchair accessible cubicles in them, and from what I've seen of the place it's easy to wheel around.

Decorating wheelchairs can be a lot of fun, and helps break the ice between you and CMs or other Guests! I got talking to a lot of people becuase of the decor on my chair.

Disney is really wheelchair friendly, so you should have a fairly easy time of it. There will be the odd door that's rather heavy, or a counter that's too high, but generally accessibility is good. Don't be scared to ask if you need help, most people are very friendly and willing to help at Disney. The CMs have all been great with me, and really go out of their way to make everybody's visit as magical as possible.

I say use the chair, use whatever help you need to enjoy yourself and have a brilliant trip! Good luck! :goodvibes



Goodness me! That was a lot longer than I thought it would be!

[mamaloya]

Thanks guys, you are awesome. I did not know that insurance may pay for one. My next appt with my rheumatologist is after my trip. He, btw, is at WDW next week. Maybe I will call him after he returns and ask him about it. Or I can go to the doc at the army base here and see what he can do for me. There is a PA here that I really like and I think will work with me and point me in the right direction. I just don't have much time. I am in New Orleans this week for Christmas, but will return to the base next week. Here in NO there are a lot of stores where I can buy a w/c. Where our base is at, is in the middle do nowhere. I am not sure what opportunity I will have between now and our trip to get one. Maybe the army medical center will have them available. I will call them before I leave here to head home.

I will read through the FAQs again. I skimmed them before, but was still in deep denial and teary through much of them. I will read through them with a pen and paper this time.

Ya'll are really helping me come to terms with life right now. I need to get past this phase and move on. I also need to get over what other people think. I keep worrying about how it will look if I am in a chair sometimes and walking others. I can't do either one for too long. I need to just focus is what is best for my family and myself.:flower3:

[aPiratesLife4Me]

I was "in between" visits to my neuro when I decided I needed the wheelchair. I called and they gave him the message and he sent me the prescription within the week, and they called to let me know it was on the way. guess it depends on your doctor, but worth a try to have it done without a visit. :)

[KPeveler]

I understand being in denial - I was too for a long time...

Something to consider is that when you board the bus with a wheelchair or when you enter lines using a GAC, only 5 (five) people can accompany you. Sometimes you will get a CM bending the rules, but not always... So if you have a GAC and they decide sending you through the fastpass line is the way to go, not everyone can accompany you. a similar deal awaits you in the wheelchair seating sections - they are quite small and it would not be fair to the rest of the wheelchair users if it was taken up entirely by "standers." again, that is not to say that you will not be able to have your entire family with you, but be aware that this may happen.

there usually are not places to wait while your family is in line. this is because most queues are covered/indoors, and you can rarely see where your family is in line. this would make it impossible to rejoin your family in most cases.

i would check out getting a wheelchair, especially if your insurance can pay for it. your dr may even have one they can "loan out" so it may be worth asking for suggestions. keep an eye on ebay, which is where i got my wheelchair (I am 22 btw). use caution as you always do with ebay but you can find some very good deals.

can you walk 5-6 miles a day? With your descriptions of your symptoms, I would guess not (no worries - neither can I, and just 5 years ago i had a 5 minute mile!)... you will need a wheelchair just to get around, trust me. i did disney without one when i should have had one, and it was not very fun.

i say get a wheelchair of your own if you can. if not, rent one. i doubt you will even be able to navigate the airports without one (i cant anymore), so you can even look into rentals from home.

i would check out butyoudontlooksick, like one little spark said (after all, i am the one who sent her over there!)

feel free to PM/AIM me if you just want to chat - i know this can be hard accepting!

[fla4fun]

I have RA (for 10 years +) and I completely understand. I've done WDW 3x so far with RA. My best advice, if you don't want to get a scooter or wheelchair, is just take it slow and easy and make sure your family all understand that is what you need to do. Someone else can always run ahead and get FastPasses for the rides that will fill quickly. If you have a handicapped tag for parking, use it. I didn't the first 2 times and by the end of the day I was crying trying to get back to the car. My spouse isn't comfortable with me using a scooter or wheelchair, so I just have to go slow and hang in there. The good news is that a lot of disney is sitting down, so that helps some, and there aren't that many stairs to manage other than in the transit station. Good luck with all your decisions and have a great trip (we go back Jan 4-12)

This post made me so sad. I can't imagine anyone "not feeling comfortable" with their spouse using a scooter or wheelchair whey they are crying in pain at the end of the day when they didn't use one. I'm afraid my spouse would just have to get over their "discomfort" so I could be comfortable and pain free. Here's hoping your trip in January can be pain free!:wizard:

[Mrsjvb]

Navy Spouse, here, Diagnosed at Age 5....35 years later, I have learned to deal.
DO NOT feel guilty about staying in the chair all day long, and TRUST me when I say on one day you may be able to walk the whole day, but the next day, you won't even be able to get out of bed.

there is NOTHING worse than the guilt you feel when holding everybody else in the group up becuase you can't keep up. I felt it in spades, and it's just me and my husband!.

The $8/day in the parks(multiday passes, otherwise it's Ten bucks) was well worth the price and ability to walk at the end of the day. Off site places look to be comparable in price as well, and with those, you can have them with you all the time, and not have to transfer when leaving the park and going to the monorail.

[HarbinsMom]

Navy Spouse, here, Diagnosed at Age 5....35 years later, I have learned to deal.
DO NOT feel guilty about staying in the chair all day long, and TRUST me when I say on one day you may be able to walk the whole day, but the next day, you won't even be able to get out of bed.

there is NOTHING worse than the guilt you feel when holding everybody else in the group up becuase you can't keep up. I felt it in spades, and it's just me and my husband!.

The $8/day in the parks(multiday passes, otherwise it's Ten bucks) was well worth the price and ability to walk at the end of the day. Off site places look to be comparable in price as well, and with those, you can have them with you all the time, and not have to transfer when leaving the park and going to the monorail.


Isn't that the truth?!!! I sometimes push myself to the brink, then the next day, my husband is having to help me out of the bed because I can't walk. This last trip, due to knee surgeries, I had to use an ECV and it was such a help. I will never again do WDW or DLR without one. It does slow us up a bit, but it's worth me being able to get out of bed on my own the next day. And, I'm not so tired that I need to go to bed at 7pm and can stay up longer. But, I wouldn't miss my yearly trips for anything. They keep me going.

[mamaloya]

Ya know what, ya'll have sold me on the wheelchair. I used an ECV in WM yesterday and it was nice not having to cut my trip short because of the pain. I also was not unable to move today. If my ins does not cover one, I will either rent on a daily basis or rent offsite.

Ya'll are so right about paying the price the next day. I have a bad habit of pushing myself to the brink when I have a good day. Trying to catch up on housework or laundry, doing all the things that I was unable to do. Then, the next day I can't move at all and am that much further behind. If I can just learn to take it slow, it will be much better. I am still learning.

I really don't think I will have a handicap pass before we leave, so either bringing my own or renting offsite is the only way to go I think. Although, I think after taking it easy in the chair all day, walking to the car should be no prob. I just need to remember to get out of the chair frequently or I won't be able to get up at all. LOL

I am staying in my camper at FW. If I rent from offsite and they deliver it, does anyone know where I would pick it up? Also, I guess we could leave it in the van at night so it doesn't get rained on or anything. That is one thing great about FW, your car is right there, no long walks to it. We drive to most parks, with the exception of MK and one day to Epcot. We have to ride the monorail.

I am getting so excited. First thing after the holidays, I will make an appointment at the clinic and see what they can do for me. If they can't help me with a chair, I will reserve offsite. It will be nice to have at DTD and BW.

Does anyone know if I can bring the chair on the boat from BW to MGM? We plan on spending an afternoon at BW and then going to MGM for fantasmic and EMH. Someone said we may be able to walk, but I think the kids would like the boat. Which would be easier with a wheelchair, lightweight double stroller and dd4, dd6, and ds8, plus the teenagers?

I am sure I will have a blast.

[OneLittleSpark]

OK, here goes! All of the off-site companies, except Randy's, deliver to the front desk. I guess at FW that would mean Pioneer Hall, though I'd check when you ring up to reserve it. Randy's normally deliver to the room, but I don't know what they would do at FW, whether you'd have to arrange to meet them at PH or whether they'd come to your plot. Leaving it in the truck sounds like a good plan, as long as you have someone to help get it in and out for you!

Almost all of the boats in Disney are wheelchair accessible. I think the only ones that you can't wheel on to are the small, steamboat-Willie style ones with the canopy on top. As far as I'm aware, the unaccessible ones now go between the three resorts on the MK lake (FW, WL and CR), but the ones to and from the parks are accessible. On the 'unaccessible' ones, if you are able, you can walk on and have someone else carry the folded chair aboard.

Be aware that even just sitting in the chair, with someone else pushing, can be surprisingly tiring. As others have said, don't push yourself too hard (easier said than done, I know), pace yourself and don't worry if you don't do everything the parks have to offer.

Have a brilliant time, and keep us posted! :goodvibes

[mamaloya]

Thanks Spark, I plan to take a few stretches to keep my joints from locking on me. I intend to stand in as many lkines as I can handle just to stretch. As long as the lines aren't more than 5-10 minutes and they are moving fairly smoothly, it will be nice.

One more question, can anyone recommend a good shoe. I have like 50 pairs of shoes. I have tried flyflot, crocs, dr scholl's, earth shoe, aerosoles, etc. And just can't find a shoe that I can last in. Flyflots were the best, but after 1-2 summers, are not so great anymore. I can't find them again either. I really can't affor $100 on a pair of shoes, although, looking back, I think that I could have passed on many of the others for 1 good pair. I can't wear shoes that are too flat or too high. The dr said the joints in my feet are deformed and that is why at the end of the day, it feels like someone has beat them with a sledgehammer. Any tips on shoes?

[sixxmum]

Thanks for the thoughts, fla4fun. I've got all my digits crossed (well, not really ;) ) that this trip goes well and that I can make it through on foot. If not, he may have to just suck it up.

[pfalcioni]

As far as shoes go, i've got crummy feet and have a heck of a time finding something comfortable for all day.

I usually go to try on shoes late in the day. New Balance and Nike seem to be my best fit. I make sure new DW shoes are:

1. lightweight. Amazing the difference in shoe weight when you check these things.

2. Ventilated. Hot feet are not happy feet.

3. Very good arch support, but with a heel area than doesn't come up too far - some nike's have a heel area that rubs my ankle bone.

4. Heel area that is tight enough to not slip around when I walk.

I used to care what they looked like. Now I don't. A nice wide toe box may not look 'cute' but makes my toes happy.

After purchase, I'll wear the shoes every day for at least 2 weeks before we leave - and also bring along one pair of 'old ugly favorites' just in case.

[natcat]

Hey!! I have PA(very similiar to RA)and scolios and I am sooooooo very in denial:sad2: I did WDW without a chair and somedays wished that I had one but again I think part of you sometimes wants to fight all the way! Let your family help you when you need them, get the chair and only use it when you want to, all the time if you want. A tip for you.....use the pool to stretch when you return from the parks or bring epsom salts with you and soak in your tub......it helped me fall asleep on last trip. And shoes........I live in crocs with my orthopedic inserts at home and like them because they slip on and off easily and are so lightweight.........I didn't have them yet when I went on the last trip but wore new balance walking shoes with inserts which were really great. Best of luck with your trip.

[mamaloya]

I never thought of putting inserts in crocs. I just gave mine away because they were so painful to wear. Maybe I can snag my dd's and try them out.

[OneLittleSpark]

I was going to suggest using inserts, but it seems you have some already! I can't really think of much more advice to add on the shoe-front.

I would suggest that instead of doing your walking in lines, you do it in shops and restaurants. Even if a line says 10 minutes on it, and seems to be moving well, the ride may break down while you're in line, or they may stop the regular line to let some from the Fastpass line board. The queues can be pretty unpredictable because of this, and you don't want to get caught standing in a queue for half an hour. Also, if you have a wheelchair, you can often get more time to board; they can slow or stop the moving walkways to give you time to get in and seated. If you did the walking in shops, you would be able to control how long you were standing for, and won't have to worry about getting a wheelchair around in the stores (some of them can be fairly cramped and hard to wheel in).

Hope this helps! :goodvibes

[mamaloya]

Hmmm, shopping??? I think I can do that. Best advice ever. If dh wants to know why I spent so much, I will blame it all on you. I will say "but onelittle spark told me to". ;) :rotfl: That is true about the rides stopping unpredictably. We usually get fastpass and at the times we go the lines are usually quick moving. I do remember soarin being a particularly tough line for me and that was 1 year ago before the RA advanced. The slope and the wait, even in the FP line, about killed me.

This morning I was in the kitchen standing and typing an email. I did not realize that I had been standing in one place for 5 minutes. I went to walk away and could not. My lower back locked. My kids were standing there and I yelled out when I tried to move. Poor things were startled. They were trying to help me. It took me a lot of wiggling, but I finally got moving again. Can't imagine having that happen in a line.

One other thing. Does anyone with FA use a cane? My mom suggested it. I borrowed hers for a few minutes and it did relieve the strain on my feet. I am just wondering if using it for long periods might hurt my shoulders, neck or elbow/wrist. Anyone tried it? It may help in lines, if I remember to shift around.

I still have to say that I am feeling a little anxious about arriving at a ride in a w/c. I don't want to be treated different. That is one reason that I am wanting to wait in line as well. I would just feel so awkward. Plus the fact that we are such a large group. If they don't let us all in the same way, I would want to wait for them or have them wait for me. I want us to all be together. I definitely want my younger 3 with me, but I also will need my ds16 to help me on and off some rides, like PotC. That one is gonna be rough.

[fla4fun]

I still have to say that I am feeling a little anxious about arriving at a ride in a w/c. I don't want to be treated different. That is one reason that I am wanting to wait in line as well. I would just feel so awkward. Plus the fact that we are such a large group. If they don't let us all in the same way, I would want to wait for them or have them wait for me. I want us to all be together. I definitely want my younger 3 with me, but I also will need my ds16 to help me on and off some rides, like PotC. That one is gonna be rough.

Don't feel anxious about it. There are so many people touring Disney with so many different special needs, that you can be sure no matter what your needs are, there are more than a few people with the same challenge in the park the same day as you. The important thing is to make sure you take care of yourself so that you get the most enjoyment out of the trip. If that means standing in some lines and using the wheelchair in others, then that's what you do. If that means using the wheelchair in all the lines, but walking occasionally in the shops or restaurants, then that's what you do.

Really, the only people who will give it a second thought are the selfish people who give everyone a second thought because they can't stand for anyone to get ahead of them anywhere. And those people aren't worth suffering for, are they?

[BratDet]

Hi,
Find out from your Division of Motor Vehicles what form you need to get the disability placard & GET IT DONE!!!!
Your pride will get in the way of you and your family have a much better time if you don't plan for the worst.
Call your insurance company to find out if they cover a wheelchair. I bought one for under 200$ and am waiting to see if they are paying for it. I sent in a Dr's prescription with it.
Since then, a thrift store opened by me and I could have gotten a really nice wheelchair for 28$, also on craigslist.com on their free boards- I have seen electric wheelchairs given away for free...good place to check out....also join your local freecycle.org lists....I have seen wheelchairs of both (motorized and manual)kinds given away for free.
I hated having to use a wheelchair but I would have never made it to as much as I did without it. Forget the standing......would have wiped me out....
I want you to have a GREAT time= so figure out how to get a WC & placard and use them.....
Each park has their own brochure about disabilities....different for each park. I never asked for the MK one or Epcot...but if you go ask in guest relations for their brochure. We got the MGM one and it was helpful.
Weirdly they are not available online...maybe they are being revised....
Take care of yourself and you will last longer, have a better time, and your whole party will enjoy it more knowing you are able to rest and last longer......
PLEASE take care of you!!!! & have a GREAT trip!!!
Bernadette

[SueM in MN]

Each park has their own brochure about disabilities....different for each park. I never asked for the MK one or Epcot...but if you go ask in guest relations for their brochure. We got the MGM one and it was helpful.
Weirdly they are not available online...maybe they are being revised....

They actually are available online. There is a link in post #3 of the disABILITIES FAQs thread. They don't look quite the same because the link has just the text, not a nice pamphlet form, but the information is the same.

You can get a copy of one for all the parks at Guest Relations in any of the parks.

[OneLittleSpark]

Try not to worry too much about being split up at rides. Though officially the maximum size of a group allowed to use the wheelchair entrance is 5 plus the wheelchair user, they may bend this for you if you ask nicely. They may not, however, especially if it's very busy, but whatever happens you'll be allowed to have your kids with you. A lot of rides have mainstream queuing now, meaning wheelchairs go through the regular queue, so for those it won't even be much of an issue.

Try not to fret, everything will be fine, Disney will take care of you. When you're boarding a ride, ask the CM at the queue entrance what you should do, and they'll direct you. If you have any problems or questions when you're out there, ask a CM or go to Guest Relations and they'll sort you out. And most of all, relax and enjoy the holiday! :goodvibes

[SueM in MN]

Try not to worry too much about being split up at rides. Though officially the maximum size of a group allowed to use the wheelchair entrance is 5 plus the wheelchair user, they may bend this for you if you ask nicely. They may not, however, especially if it's very busy, but whatever happens you'll be allowed to have your kids with you. A lot of rides have mainstream queuing now, meaning wheelchairs go through the regular queue, so for those it won't even be much of an issue.
The majority of lines are mainstream lines, so you would be waiting in line together. When they do split wheelchair parties up, there are reasons for what they do - usually it's a space concern. Your party is not that large and because you are one family group with children, they will try to keep you together as much as possible.

Most attractions don't actually have a wheelchair entrance, but if they have a separate wheelchair boarding area, the size of your party to board at that location may be limited because of the size of the area. Some areas just don't have the space for a party of more than a few people to wait there for boarding and they need a smaller group.
In most of those cases, the ride car only holds a few people, so you would not be riding in the same car with the rest of your party in any case. In case the number is limited, be prepared to divide your party. Decide ahead of time who needs to be with you to help you and which other people would be with your group.
There are shows where you will be allowed to have only one person sit right next to you. That's because the seats are arranged to have one wheelchair spot and one companion seat next to it. The seating for the rest of your party is usually going to be in the row right ahead of where you are sitting. We have had to choose one person to be with DD in her wheelchair for some shows even when we were a party of 3 total. The reason is that there to make space for more guests using wheelchairs, there just are no seats for the companions in the row reserved for wheelchairs. So, again, be prepared for movies and shows that you need to decide who needs to sit with you. You might not be sitting right next to everyone in your group, but they will be in the same show in the general area.

[BratDet]

Hi,

i just got a check for the full amount of my wheelchair cost and my shower chair I mentioned I was waiting for in a previous post.

It made me think of the handicapped room I asked for in Orlando.

They had a fold down shower seat which was well used by me.

It allowed me to take a nice long shower and not be worn out for the rest of the day.

Bernadette

[mamaloya]

:) Thanks guys for all the tips. This is so difficult for me. I am crying a little reading everything. I just cannot cope very well with this. I am having to get used to decreased mobility while my dh is deployed. It just seems like too much. Luckily the army family is awesome. I have great neighbors and my fellow chaplain wives will be there if I ever need it.

My friend kept my kids yesterday so I could run some errands, among them getting shoes for disney. I bought 2 pair. One pair is a cross between tennis shoes and ballerina slippers. They are Skechers Cali. They are very comfortable and lightweight and small. They have decent arch support and are flexible and cushioned. The other pair are the ugliest shoes I have ever seen (uglier than crocs) but they are the MOST comfortable shoes. They are by KEDS. They are slip on with no back. I hate my feet being totally enclosed. They have a great arch support and are soft. The ugly part is the color. They are black with white dots and hot pink trim. I don't know what they were thinking when they picked the color. Tan, white, navy, black, any of these colors alone would be great, but polka dots!!! Oh well, they are SOOOOO comfy. I told myself ahead of time I would go by feel only. If they had been red with white dots they could have been my Minnie shoes.

I ran so many errands yesterday while I was w/o kids that I am really hurting today. I almost could not get out of bed. That just confirms my needing to take it easy. I used to be the one running all over the place at WDW. I was the energizer bunny. This is so crazy to me. Do you ever get used to it?

Ya'll are really great. I don't know what I would do w/o you. Well, I have to go call FW and make sure they give me a site close to a bus stop. I also need to call the clinic about mobility aids. I know I have other calls. I should have written them down. The trip is gonna be here soon. YAY!!!!

[BratDet]

Sue,
When I said the disability guides were not on line- I was referring to the ones posted by Disney...their links were broken
I did not realize you had a link to them here....good to know to pass onto others...thanks!!!

Bernadette

[OneLittleSpark]

Mamaloya, I'm so sorry you're having such a rough time of it. :hug: I'm afraid it is tough, and I guess you never stop missing the things you used to do, but you will get more accustomed to it and learn how to balance things a bit better (though, like all of us, I'm sure you'll still have days when you push too hard). If you need to talk, feel free to PM me, or come see us over at But You Don't Look Sick. I'm glad to hear you have a good support network around you, that makes all the difference in the world.

Glad you got some good shoes; it doesn't matter if they look like a couple of dead pigeons, as long as they're comfy.

Have a wonderful, magical trip - I'm sure it'll be the best medicine in the world for you!:goodvibes

[SueM in MN]

Sue,
When I said the disability guides were not on line- I was referring to the ones posted by Disney...their links were broken
I did not realize you had a link to them here....good to know to pass onto others...thanks!!!

Bernadette
They changed the link on their website, but they still have links. It's possible that when you tried, they had removed the links and then they put them back; they change around their website pretty often and might have not had the links for a while.
If you go to the bottom of this Disney page, (http://disneyworld.disney.go.com/wdw/index)and click on "Guests with Disabilities" near the bottom, it takes you to the same pages my links go to. For some reason, there are 2 "Guests with Disabilities" links on that page. The one closest to the bottom goes to a page without an address bar, so it's not possible to make a direct link.

[mamaloya]

I went to my PPP today. In the army, you never get the same one twice. LOL This dr was not very friendly. She did sign a handicap tag form for me to bring to the DMV. She also wrote me a prescription for a wheelchair for 3 months. I would think that a 3 month rental would be more than the cost of a wheelchair, but at least I will be covered at WDW. She also prescribed prednisone to help with the increase in pain until I get back to the rheumatologist.

Has anyone taken prednisone before? What should I expect? Will I be OK taking it at WDW?

Thanks

[aPiratesLife4Me]

Sorry you didn't get a very nice doctor. I'm not trying to be a total pain here, but I would think a call to your rheumatologist MIGHT be a good thing, to ask about taking prednisone and what you can expect. And also about the wheelchair. I would think with a condition such as yours, they would be likely to allow you to purchase a wheelchair rather than ongoing rental.
When my neurologist sent me my prescription, I called my insurance and they gave me a phone number they said I had to call, the woman said this was the only place they deal with to get a wheelchair. It made no sense to me, I figured I could choose a place nearby to go with my prescription. :confused3 Anyway, I called the number and this woman starts taking my info. and says we can get you a rental by such and such a date, I said oh I'm sorry maybe I didn't explain well enough but I am purchasing a wheelchair, not renting. She was not very nice to begin with, but at this point in the converstaion her tone was she quite rude telling me we don't do that here, we do rentals so I can get you rental only. I said well unfortunately my condition is going to progress and NOT get any better, so a rental won't do me any good but you have a nice day! I called my insurance back and got a different person than I had spoken to the first time and she could not figure out why the first person even told me to call there. :headache:

Anyway, I know your trip is pretty close so you might just have enough time to do the rental and all but later on you might want to check into purchasing if your insurance will do it. I don't understand their logic in the cost, but that's insurance for ya.

GOOD LUCK no matter what, hope your trip planning is going well and that you and your family have a wonderful trip!