Overwhelmed, uncertain and considering cancelling.

I have been reading your post and hope that I can add some hope. My dad had a heart attack and a stroke 3 weeks apart in January. We were in Disney in November.

Not saying that your issues are not difficult but I would like to offer some help. Dad has stamina issues and some balance issues as well. (Heart only works at 13%). Stroke left him with some leg pain and weakness issues. He also has paralysis in his right arm so he worked a scooter with only one arm and did remarkably well. He actually felt great being able to keep up with us and often left us behind because he wasn't trying to tax himself. We rented scooter from external company so that we didn't have to try to make it to gates to get one, we showed up at park with it so drove it from lot to door.

Before we left, we practiced the scooter for months at several big box stores so that he could feel comfortable. We also got some advice from his occupational therpist. She recommended that he not even try to ride scooter because he was still suffering issues in his brain from stroke. We were diligent and he managed to operate one perfectly.

We plotted lots of stuff that was kind of close as well. Downtown Disney movie theater and a show at House of Blues. We did dinner at Victoria and Alberts and he got to choose some other stuff that he really wanted to do and we made it happen.

We also found that boat was a little better than Monorail for Magic Kingdom since the climb wasnt as steep.

Thanks very much... that really has given some hope. My partner is very keen for me to try a scooter so we'll be renting one to test drive on Thursday.

He keeps saying that it's much easier than a car, so I shouldn't let my driving (in)ability stop me from using a scooter. I guess we'll see but I hope he's right! Glad to hear that you all had a wonderful holiday!
 
We are considering a manual wheelchair, and so far i think its the most viable option. My partner woke up a lot more supportive yesterday morning, which has helped me feel more positive. It was looking a bit grim, being that his attitude was "hey, well you stay in the hotel room and daughter and I will do the parks". He also wants me to try a scooter so we will be test driving one on Thursday. It would really be the answer to things if I can get scootering about the place.

Am I right in thinking you're in the UK too?

I think I'll check out AYME. Sorry to hear about your misdiagnosis. What did it transpire to be in the end (please tell me where to go if I'm prying :))

I'm glad you're going to test the scooter. It may go better than you're expecting. Depending on where you are, you may have access to a Shop Mobility scheme and that would be really useful for getting used to using one. If you then rented from an offsite vendor, you'd probably rent something far, far easier to manouver than something from ShopMobility.

I'm actually in the US. I just have loads of friends in the UK.

AYME is Association for Youth with ME so you may be too old for them now. It's a very long story about how I got involved with them. It couldn't happen these days.
 
Thanks very much... that really has given some hope. My partner is very keen for me to try a scooter so we'll be renting one to test drive on Thursday.

He keeps saying that it's much easier than a car, so I shouldn't let my driving (in)ability stop me from using a scooter. I guess we'll see but I hope he's right! Glad to hear that you all had a wonderful holiday!

I no longer drive a car, but I use a scooter daily. You do need to be very aware of the people around you, but it gets easier with practice.
 
We are considering a manual wheelchair, and so far i think its the most viable option.

I've done WDW with a manual chair, and it worked out well. I'd walk some (pushing/leaning/balancing on the chair), then sit when I needed to. At times, my family pushed me.

Having a seat whenever I needed one (and a fairly comfortable seat, at that) was worth a great deal.
 

As a pp bring your blue badge with you si you can get free valet parking at any Disney owned resort so that will might help because your be closer to the front so hopefully it will shorten your walking and help.

Thanks :)
 
i only suggested the contempory because she didn't seem like she wanted to take the monorail your right it might be to far for her to walk then she can park at the ttc and take ferry or monorail.

Its not that I dont want to use the monorail.. just that I had no idea what sort of walking, waiting etc was involved. Basically, the monorail is out if its going to tire me out before I even get to a park. :)
 
Its not that I dont want to use the monorail.. just that I had no idea what sort of walking, waiting etc was involved. Basically, the monorail is out if its going to tire me out before I even get to a park. :)

I think your best bet might be the ferry because the monorail you need to go up a ramp to board. Which can be tiring but with the ferry it it one stop and your their and they have seat.


The walk from contemporary resort is a 8-10 min walk that all level. Are you staying at a Disney resort if so the bus to mk might be the best bet because it drops you off right in front so no need for another form of tranportation.
 
The parking is really only an issue at magic kingdom- a the other three parks its very convenient right out front. OP I think your idea of renting a wheelchair or rollator to carry your stuff and to steady you a d be a convenient seat is a really good one. Another thing we do is to plan shows and meals during the heat of day. For us we find that going first thing is helpful because it is cooler and less crowded. Then we try to do a table service lunch and then go back to the hotel for the afternoon- we return if we are up to it in the evening. I think if you go with the expectation of enjoying the atmosphere and taking things as they come listening to your body's needs that you can have an enjoyable holiday- honest!

Thanks :) Our plan was to make the most of extra magic hours... get to the park early, pace myself, eat lunch in the park, return to the hotel to have a lie down/sit in the pool/do nothing, then return to the parks for dinner some nights, downtown disney and epcot other evenings. Thats pretty much how Ive managed at the Paris resort. Of course, with MK, the mile round walk to do the hotel afternoon break isn't going to work in my favour. But, lets see how I get on with the scooter :)
 
The set up at the Magic Kingdom is exactly the same as at Disneyland Paris, there is a train around the perimeter of the park with stops in Frontierland and new Fanstasyland (which doesn't get used quite as much as a 'ride' as it does in Paris, so the queues are usually shorter). There are methods of transportation up Main St just like in Paris and there are benches and seats you can sit on. The only main difference you'll see is there aren't the arcades up the sides of Main St which can provide places to sit as there are in Paris. If you want to be able to access the Magic Kingdom easily (like you can from the Disneyland Hotel in Paris) you would need to stay in one of the three 'Monorail' hotels - the Grand Floridian, Contemporary or Polynesian. These are the most expensive hotels and you might therefore want to split your stay and maybe stay there for one or two nights whilst you visit the Magic Kingdom (there is no doubt that the Magic Kingdom is far more of a trek to visit than any of the other parks).

If you've managed to get around in Disneyland Paris you can do it in WDW, you will need to pace yourself and consider how much you can do in one day but it is do-able - Epcot probably has the most walking to just get from attraction to attraction, but if you spent one day in Future World and saved World Showcase for another day you might find that easier.

I've got lots of experience of both Paris and WDW so if you need me to draw some comparisons between the two resorts just let me know :)

Oh, thats really great to know, thank you! I like to camp out on Main street for a couple of hours on the first day at DLRP.. because I know I'm going to miss it using the transportation the rest of the time.

Is MK at WDW much larger than DLRP?
 
Isn't there someone you could invite, perhaps pay for, that could assist you? I know you want to be independent, but it might solve all your problems if you had someone who could push you in a wheelchair?

No, not really. And being that we're travelling from the UK it would cost an absolute fortune for a fortnight! My partner would be able to do a small amount.. but then would be in pain the rest of the day so it wouldnt work out better overall.
 
I'm glad you're going to test the scooter. It may go better than you're expecting. Depending on where you are, you may have access to a Shop Mobility scheme and that would be really useful for getting used to using one. If you then rented from an offsite vendor, you'd probably rent something far, far easier to manouver than something from ShopMobility.

I'm actually in the US. I just have loads of friends in the UK.

AYME is Association for Youth with ME so you may be too old for them now. It's a very long story about how I got involved with them. It couldn't happen these days.

Oh yes, I'm far too old to be considered for anything youthful.. I'll find another ME group :) its a relatively new diagnosis for me.. and again, they cant rule out MS.

Yes, we found a free shopmobility scheme near us so thats where we are headed on thursday.

Have you ever visited your friends in the UK?
 
I've done WDW with a manual chair, and it worked out well. I'd walk some (pushing/leaning/balancing on the chair), then sit when I needed to. At times, my family pushed me.

Having a seat whenever I needed one (and a fairly comfortable seat, at that) was worth a great deal.

That's good to know.. its my plan A... unless I become a champion scooter driver... then that would be plan A. :rotfl:
 
I'd say go for it. Take advantage of their transportation. I always am willing to give up my seat to someone who needs it more. I'm sure you'll find this the case as well. Also Port Orleans French Quarter is a very small resort with short walks to their bus stops. All of which have benchs. I would just say to the line when you get there that you need to rest waiting on the bus and anyone with a decent heart will let you return to the line when the bus arrives. At the parks there are places to take breaks everywhere, literally every 50 feet I bet has a bench or table to take a load off.
 
Oh, thats really great to know, thank you! I like to camp out on Main street for a couple of hours on the first day at DLRP.. because I know I'm going to miss it using the transportation the rest of the time.

Is MK at WDW much larger than DLRP?

no its not much larger ... since fantasyland has been expanded that area is a little larger (but they don't have the storybook boats or casey junior ride). Adventureland and frontierland are the opposite way round (so you reach adventureland first coming off the hub) but you'll find it pretty similar to Paris. There are loads of places you can stop and sit, my dad loves it at the top of Main St watching the castle opposite Caseys Corner.
 
I'd say go for it. Take advantage of their transportation. I always am willing to give up my seat to someone who needs it more. I'm sure you'll find this the case as well. Also Port Orleans French Quarter is a very small resort with short walks to their bus stops. All of which have benchs. I would just say to the line when you get there that you need to rest waiting on the bus and anyone with a decent heart will let you return to the line when the bus arrives. At the parks there are places to take breaks everywhere, literally every 50 feet I bet has a bench or table to take a load off.

OK, thanks :) How very lovely of you to offer your seat! We dont really get that here in London... you forget how much nicer people are elsewhere in the world!
 
no its not much larger ... since fantasyland has been expanded that area is a little larger (but they don't have the storybook boats or casey junior ride). Adventureland and frontierland are the opposite way round (so you reach adventureland first coming off the hub) but you'll find it pretty similar to Paris. There are loads of places you can stop and sit, my dad loves it at the top of Main St watching the castle opposite Caseys Corner.

brilliant, thanks. I love to chill out on main st with a view of the castle and a nice coffee too. How many times have you been to each park?
 
Op if you are staying at por I would suggest taking the bus to mk it drop you off right in front. Plus let Disney doing the driving your on vacation. And for dtd I take the boat very easy you can even take the boat if your in the market place to west side saving walking.
 
Op if you are staying at por I would suggest taking the bus to mk it drop you off right in front. Plus let Disney doing the driving your on vacation. And for dtd I take the boat very easy you can even take the boat if your in the market place to west side saving walking.

We've booked OKW, which looks lovely. I believe there's a boat from there too? I think the bus to MK might be the best idea. Thanks so much.:)
 
I'd totally recomment Disneyland Paris to those with disabilities though..

Personally I view DLRP as a very very bad apple in the Disney basket when it comes to accessibility. To me it is not a disney-product when it comes to this subject. It's all peachy and "oh so great" for those who are mobile in certain ways. But there is a HUGE group that is not. Then DLRP, a park that was very recently built from scratch is a death pitt. It was built in a way to segregate. Not only is that not my idea of a true accessible society and does it result in missing a lot of the actual experience and extra options offered in line, but it results in a much higher level of inaccessibility than at any other Disney product. Even as far back as 2000 there was literally zero options for me at DLRP that could accomodate me, incl. when bringing along help. Yet I've been going to WDW annually since 2007, most of those trips as a solo. While my situation is progressive and my options back in 2007 were a world of freedom compared to my upcoming last trip, WDW still has many options to offer that can accomodate me. I wish it were differently, but I'm not the only one with this experience but part of a large group.


WDW does it differently than DLRP. Those that have been to DLRP might need time to adjust. But; WDW does it much more all-inclusive, for each and all.

With info you've given so far WDW should be no problem. But, that does also require some imput from yourself. Not just the focus on what is not possible and "oh it will be disaster, because I do not know each exact detail" but built upon the possibilities that are there, info that is available and most importantly; have a bit of a flexible mindset to go from things as they are.

For instance; distances will be in multiple miles per day, even when being conservative, doing very little and using railroad at MK (not available at other parks). Be forwarned; railroad will be closed later this year for maintenance, dates can be found online. WDW is in the business of magic, but magically making distances disappear is not within their skillsets. You WILL have to cross certain distances. There are a load of mobility aid options, ranging from the familiar wheelchair and ecv to other options as rollators etc. etc. When not familiar enough with things yourself, do not make the assumption that thus you will not be able to do something. That is silly limiting yourself unneedingly. Instead get yourself a good OT and together look at the problems you are struggling with and together go looking at which options there are. You would be amazed. Let me put it this way; there are options for people that are fully bedridden to have mobility while lying down, so weird luck if your situation would not be workable with. For instance your worry about a rollator being problematic with CTS. Sometimes the standard handgrips might not be the best. But; there are so many options for just merely the grips that you'ld be amazed. Right upto where need be rollators being there for those to use by not using their hands but underarm or upperarm resting in a rest and using them instead.

Yes there are benches all around. But; they are also in quite high demand. WDW is tiring for any and all involved, so all like a rest. Florida is warm, so sitting down is more loved. With families not everybody wants to ride each ride and you can easily find Grandma and cousin Tim waiting on the bench for others to ride a ride. So be prepared for benches to be there but space not always being there. Pacing yourself to such an extend where one, 2 or 3 full benches gets you into trouble then is wrong pacing. Know location of benches and the options there are besides benches and their limitations. Like resting options in first aid at each park (incl. knowing their location and how far of a hike it can be from certain parts of the park), but again; first come, first serve. Value season and "off time" helps a lot for first aid option and results in a very high succesrate, but no guarantee. So don't keep going until you absolutely need it and end up in trouble if you find first aid full. Have enough left to get yourself to a back up option. Same for getting back to the room. Keep in mind a bus might already be full, monorail can be full or sometimes break down etc and thus built in plenty of back up time. Driving gives certain freedoms for this but also comes with other limitations because of the location of the handicapped parking esp. at MK.

I'm a big advocate for taking responsibility oneself and not relying on outside parties when not needed. One can not control others and things can happen, which results in one having to deal with the consequences. Taking responsibilty oneself on the other hand means you have more control over things, including back up options when taking care of those.

Same thing goes for relying on a partner to push a manual chair. It is hard work when not used to it, even for a healthy person that regularly excersises. It's the combination of long distances, heat, going up and down a lot without noticing it (they did a good job hiding it in many locations hiding it, but many parts of for instance MK you are not on ground level but first and steadily go up or down many times) and multiple days in a row. Great if a partner manages, but always have a back up in case they end up one of many that kinda need at least a break or can't manage.

When considering ECV: also keep in mind safety. Both for yourself and all others. Some healthissues do come with stuff that can result in safety issues. This becomes worse in such a crowded place as WDW. Mobility is very important, but safety trumps all. Some problems can be dealt with by certain (extra) options on ECV. For which again you will not be aware of all options out there. Very normal and one of those things where a knowledgable OT can make a huge difference. Sometimes not all problems can be dealt with, in which cases an ECV or even any motorized self-operated option is not safe and therefor no option. These are therefor things you want to have already tried out plenty beforehand. More then enough time beforehand that if you need to look at other options you still have time to do so instead of "oh boy, but we're flying tomorrow and I've just tried it for the first time but it is not for me". Bonus is having experience results in better driving skills, thus many times more trust in ones own capabilities to use the aid and that also will translate in better operating skills. :)

If you see so many possible problems, I'm wondering if you have tought about the flight and everything surrounding that yet. An airport alone can easily result in walking miles. MCO can be stretched out, esp. when arriving from a flight needing to clear customs at MCO. Add up to it having just done the flight instead of being "fresh". Depending on transportation you have arranged, you might find yourself waiting after checking in for that. For instance the DME can mean a wait. There are some benches. Busses used for DME are the type that are higher up requiring you to walk up a few stair steps into the bus. If a problem, you will want to put your affairs in order and either thus travel with a mobility aid from home on or use an airport wheelchair to get onto the bus by using the wheelchair lift (and using resort wheelchair getting off). In that case; inform DME about the need for said lift beforehand. Needing said lift can influence your wait time for your bus either way.

Planning and having back ups is important. Just as important is being able to let go of that and be able to go with the flow and be flexible. Loads of things are not 100% predictable. Whether at WDW, off property or with regards to the flight. Not overplanning and being to detailfocussed but instead having flexibility in your skills to navigate needs and most of all, your abilities, will help you get much further than being too focussed on having a fully known predictable picture. If not just because things will happen and change. With flexibility in your skillset you can tackle much more situations and thus be able to do much more. But also it is an important factor in not making yourself "crazy" with worry or fear. And not in the least; knowing you are flexible in dealing with situations gives trust that indeed you WILL be able to deal. Trust is an amazing power in itself already resulting in a higher ability to do things.

I'll be going back to WDW this fall for 3 weeks. A solo trip, very concieus choice to do so. I want to focus on just me, myself and I and be able to close of my Orlando times on my own. Where needed I will be hiring some personal aids/nurses for stuff like nursing, getting dressed, showering etc. But; solotrip. Like you it does require me to fly transatlantic. I'm from the other side than yours from the Channel. ;) At the moment I'm bedridden for at least 20 hours a day and can only sit for 30 minutes at an end before when overdoing it eventually causing lasting worsening. There's another myriad of health issues that need some attention or working around. But you know what? It can be done and it can be done in such a fashion I have a blast. My recepy for succes is having a basic info of stuff like distances, getting my aids and nursing stuff in order and beyond that built upon my flexibility to deal with situations. To be highly aware of my abilities, how I can navigate around things, how I can make things possible and that I can deal with many curb balls that might be thrown. But also knowing it is OK that I can not deal with them all, c'est la vie.

I have my back ups, have anything and all info on me or if not know how to get to it if need be. I know I can trust MYSELF. I am my biggest friend and aid and am aware of the power of that. I know my skills are such that I will get there one way or another and make the most of things. I know how important these travels are to me and what it is worth healthwise and what not. Each trip factually I have been physically more "limited". Each trip I have enjoyed more intensely. I've gotten myself in quite some pickles at times, ranging from powerchair not functioning due to damage right upto finding myself in icu last year. Oops. But again; all those things have strengthened my trust in myself that I can handle what live throws at me when need be and still end up saying "it was worth it and was the best it could've been considering". It simply adds too much sparkle and quality to life instead of having staid at home. Sometimes live happens, including cr*p (sorry for the language) but that would've happened at home also. Yet staying at home would've meant not having that extra sparkle and good times.

It can be done. You'll want to read the stickies Sue has made here on the disABILITIES board. It has loads of info, ranging from pics of bus steps, certain rides, well... all kinds of special needs info one might need. Then get yourself a book called the Open Mouse. This books deals on doing WDW (and DCL) with a disability and only that. It deals with loads of different disabilities and uses easy labels so you can easily see what is important for you. They discuss things to such details you get accessibility info per ride, show etc. Combine that with knowing your milage might and will vary. That things are not fully predictable but you can deal with that yourself by taking that into account. Give yourself the gift of learning to find your way to deal with situations, whatever they be. Know your abilities more than your limitations. Trust yourself to have or built up a skill set that allows you to manage. Be ok with managing does include every blue moon perhaps deciding not to do something, needing a bit more rest than hoped or planned etc. Then let it go a bit and trust yourself. It can be done and you can do it. This will not be the first time you will be doing something for the first time. This will not be the first time you don't have all info or everything is predictable. You've had succes before, or otherwise for instance wouldn't have gone back to DLRP. Trust on your previous experience of positive feedback/results.


Oh and focus not "just" on WDW. Orlando has so much more to offer and with great accessibility. I know many can easily fill weeks with only WDW but there is so much more you might want to look into for perhaps a day or more offsite.

Enjoy, you'll have a blast!
 



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