Newbie with RA

[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!

 

[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". 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!

 

[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. 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!

 

[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, 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. 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.

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!