Anyone been with Rheumatoid Arthritis

[tigger_03]

My doctor thought I had fibromyalgia but now believes I have the beginnings of RA. So it's looking like the next time we go back I'll need some help. I knew after our trip this year that would most likely be how things would go. I had so much trouble walking. I pushed myself to continue each day since it was my children's first trip but really I just wanted to sit in the room.

Looks like I'll most likely be renting a scooter next time. Or scheduling a LOT more down time at the resort each day which would then mean a longer trip. I don't like having to do that but at the same point I can't be in as much pain as I was this time walking around.

 

[SueM in MN]

I think you will find the information about people who have gone to WDW with fibromyalgia will be very helpful to you. Besides a recent thread (which I know you posted on, but I'm putting a link for readers later on who may not have seen that thread). There is also a link to a past thread with hints for fibromyalgia in the disABILITIES FAQs thread, near the top of the board.

Even though you may not have the same diagnosis, the situations you are dealing with and the needs you have will be similar to the things discussed on those threads.

I think you have already made one important leap that will help you very much in the parks - that is you are thinking realistically about using an ECV. It is a tool that can help you to enjoy your day, the same as people use glasses to help you see. Choosing to use an ECV has certain 'prices' that come along with it. But, increased pain, shortened days and missing things are some of the 'costs' of not using assistance you need.
If you are able to look at it that way, you will be way ahead.

 

[Mrsjvb]

I have RA.. 35 Plus years now. for me, it works best to rent a manual Wheel chair. DH doesn't mind pushing me around as I am unable to do so myself. an ECV is out for a variety of reasons.

 

[tigger_03]

SueM ~ Thank you. I'll check out both the link to the previous fibro thread plus the more recent one. I need to read through the current one. I had previously just skimmed over it.

After our trip this year I know that having to deal with the pain and having to stop every so often didn't allow us to get much done/see as many things as we wanted. But we also have 2 small children so we weren't trying to see how much stuff we could get done. I know that will change as they get older. Using an ECV is something that I've definitely considered.

Mrsjvb ~ Thank you as well. I'm thinking that a manual wheelchair would be out for us until the kids were a little older. I have a feeling that we'll probably take a stroller again on our next trip since DS will be 2 or 3. DH's aunt and uncle take their ECVs with them so I'm sure if needed they would let me borrow one of theirs if they weren't using it (mainly just used on vacation since walking long distances is a problem for them).

 

[sharadoc]

SueM ~ Thank you. I'll check out both the link to the previous fibro thread plus the more recent one. I need to read through the current one. I had previously just skimmed over it.

After our trip this year I know that having to deal with the pain and having to stop every so often didn't allow us to get much done/see as many things as we wanted. But we also have 2 small children so we weren't trying to see how much stuff we could get done. I know that will change as they get older. Using an ECV is something that I've definitely considered.

Mrsjvb ~ Thank you as well. I'm thinking that a manual wheelchair would be out for us until the kids were a little older. I have a feeling that we'll probably take a stroller again on our next trip since DS will be 2 or 3. DH's aunt and uncle take their ECVs with them so I'm sure if needed they would let me borrow one of theirs if they weren't using it (mainly just used on vacation since walking long distances is a problem for them).

Hi. I'm going in January and I have RA - have for 30 years. In the past 10 years, it's gotten much worse. I'm now on cortisone shots, so I'm planning on getting them in both knees about 2 weeks before we go. I am concerned with my hips and ankles, although I have learned that Crocs have really given me a LOT of relief in walking. I am planning to walk and sit whenever I can, and will get an ECV if it seems like the walking is tough. Remember that fatigue is also an issue with RA, so you need to make sure you rest when you can. But use shows and benches, meals, etc. to rest - no need to go back to your room all the time.

My biggest issue is standing still. I'm planning to get a GAC that allows me to sit and wait my turn. We have a few issues in our family - my son has Autism Spectrum Disorder too, so he has a real problem waiting in lines without freaking out. It will be interesting to see how we handle both of us and our own needs with getting on rides.

I am also making sure my GAC says something about the moving sidewalk rides, so I can go into the handicapped area and have the ride slowed or stopped for me. I don't think I can "hop" onto the rides like I used to.

All the best - please keep in touch. Feel free to PM is you want to talk about the RA issues.

 

[KPeveler]

Hi. I'm going in January and I have RA - have for 30 years. In the past 10 years, it's gotten much worse. I'm now on cortisone shots, so I'm planning on getting them in both knees about 2 weeks before we go. I am concerned with my hips and ankles, although I have learned that Crocs have really given me a LOT of relief in walking. I am planning to walk and sit whenever I can, and will get an ECV if it seems like the walking is tough. Remember that fatigue is also an issue with RA, so you need to make sure you rest when you can. But use shows and benches, meals, etc. to rest - no need to go back to your room all the time.

My biggest issue is standing still. I'm planning to get a GAC that allows me to sit and wait my turn. We have a few issues in our family - my son has Autism Spectrum Disorder too, so he has a real problem waiting in lines without freaking out. It will be interesting to see how we handle both of us and our own needs with getting on rides.

I am also making sure my GAC says something about the moving sidewalk rides, so I can go into the handicapped area and have the ride slowed or stopped for me. I don't think I can "hop" onto the rides like I used to.

All the best - please keep in touch. Feel free to PM is you want to talk about the RA issues.

I am sure that Mike or Sue will come in to clarify my response, but I am under the impression that there is nowhere to "sit and wait" for most rides and shows. If you have problems standing, Disney will suggest you rent a wheelchair or scooter... I cant think where you would sit and wait for something like space mountain or even Small world... perhaps Sue or Cheshire have more info

 

[Cheshire Figment]

The moving walkways can all be slowed and, except for Peter Pan, they can all be stopped if necessary.

Just as examples, Small World, Space and Soarin' do not have any seating at or near either the entrance queue or the exit. There is no place to sit and wait your turn.

If the attraction is continuous load, such as Small World or Space the queue tends to remain in motion, or with very little non-moving. However, shows, or attactions that have a preshow and then continuous load, such as Haunted Mansion or Rock 'N Roller Coaster entail a lot of standing on one place.

Even with a particular stamp (or combination of stamps) on a GAC you may not get the same treatment at each attraction as load/unload and the queue have differences.

And the official policy is that mobility and/or stamina issues are suggested to rent a wheelchair or ECV. It is also official policy that a person with a wheelchair or ECV does not need a GAC unless there is a separate problem not involving mobility/stamina (such as vision or hearing).

 

[tigger_03]

Hi. I'm going in January and I have RA - have for 30 years. In the past 10 years, it's gotten much worse. I'm now on cortisone shots, so I'm planning on getting them in both knees about 2 weeks before we go. I am concerned with my hips and ankles, although I have learned that Crocs have really given me a LOT of relief in walking. I am planning to walk and sit whenever I can, and will get an ECV if it seems like the walking is tough. Remember that fatigue is also an issue with RA, so you need to make sure you rest when you can. But use shows and benches, meals, etc. to rest - no need to go back to your room all the time.

My biggest issue is standing still. I'm planning to get a GAC that allows me to sit and wait my turn. We have a few issues in our family - my son has Autism Spectrum Disorder too, so he has a real problem waiting in lines without freaking out. It will be interesting to see how we handle both of us and our own needs with getting on rides.

I am also making sure my GAC says something about the moving sidewalk rides, so I can go into the handicapped area and have the ride slowed or stopped for me. I don't think I can "hop" onto the rides like I used to.

All the best - please keep in touch. Feel free to PM is you want to talk about the RA issues.

Thank you. I'll probably take you up on sending you a PM soon.

I had considering getting a GAC as well. I had also considered buying a pair of crocs for our next trip as well. I know all too well about the fatigue. It's my biggest issue along with the pain right now. Thankfully I could sit and halfway relax when DH was riding some rides that I didn't and/or the kids couldn't go on (most of those I didn't really care about riding so sitting out didn't bother me). However it was not a totally relaxing time for me since I still had the kids. Thankfully my mom went with us but I don't think she'll be going back with us (I'll just say she didn't really enjoy the trip and was in a cranky mood from the moment we left on the trip...which made for an enjoyable 2 week vacation).


Another question. If you rent an ECV from somewhere other than Disney where do you keep it when at the resort? Is there enough room to keep it in your resort room? I know keeping our jogging stroller in our room this trip was on the tight side. Getting a handicapped room would not fit our needs since we'd need a place for the kids to sleep.

 

[Cheshire Figment]

Another question. If you rent an ECV from somewhere other than Disney where do you keep it when at the resort? Is there enough room to keep it in your resort room? I know keeping our jogging stroller in our room this trip was on the tight side. Getting a handicapped room would not fit our needs since we'd need a place for the kids to sleep.

The off-site ECVs are much smaller than the Disney rentals. I think a lot will depend on the kids age and if the stroller can be folded.

Also, where you stay may have a big effect. For example, I think the rooms at CBR actually have more avaailable space than at WL since there are two doubles instead of queens. Or, at AKL and WL you can reserve a room that has one queen and a set of bunk beds.

 

[tigger_03]

The off-site ECVs are much smaller than the Disney rentals. I think a lot will depend on the kids age and if the stroller can be folded.

Also, where you stay may have a big effect. For example, I think the rooms at CBR actually have more avaailable space than at WL since there are two doubles instead of queens. Or, at AKL and WL you can reserve a room that has one queen and a set of bunk beds.

Thank you for the information.

Our kids are currently 3 and 1. Therefore the bunk beds would probably be out for a few more years.

Our jogger can be folded but it still takes up a fair amount of room. We probably won't be taking it again and will go with a smaller stroller but still one that some storage or DH will just take a larger backpack with the items we need each day in the parks.

We opted for the WL this time since we spend most of our time at MK. The boat over to MK was nice. And having the larger beds is nice when you have little one who decide to join you in bed.

 

[slctlc]

I have lots of arthritis and bone issues (osteomalacia, osteoarthritis, disc problems). I went last Christmas and rented an ecv from Walker Mobility. I can't even begin to tell you how often I told my husband that I had made the right decision to use a scooter. I rode all the rides that I wanted (parked the ecv at the rides and got on as I was able to transfer and walk a little bit), went into every shop - yes, in my scooter, and usually was able to sit in the scooter at most of the shows. I parked the scooter at most of the restaurants and sat at tables in regular chairs, but many restaurants have enough room for the ecvs at the tables. I was worried about feeling embarassed, but my family laughed at me. Once I got used to the scooter, I zoomed around and usually was the last one to get tired! It was so worth the money spent. I am heading back on December 13th and will have a scooter waiting for me at my resort! I wouldn't do Disney any other way!

 

[SueM in MN]

I am sure that Mike or Sue will come in to clarify my response, but I am under the impression that there is nowhere to "sit and wait" for most rides and shows. If you have problems standing, Disney will suggest you rent a wheelchair or scooter... I cant think where you would sit and wait for something like space mountain or even Small world... perhaps Sue or Cheshire have more info

As Cheshire Figment already replied, many places do not have anywhere to sit and wait unless you bring your own seat (wheelchair, ECV or walker with a seat).
This is true for rides, but also shows and movies. Most of those have a preshow or preload area where guests wait for their turn at the show. Your wait there will usually be at least as long as the show is (you came into the room as the guests for the last show entered the theater and you will wait there until the show they are watching is over and they have emptied the theater).
Some of the preshow areas have benches, but the majority do not and if the benches are already full, other guests will not usually move to let you sit.

Thank you. I'll probably take you up on sending you a PM soon.

I had considering getting a GAC as well. I had also considered buying a pair of crocs for our next trip as well. I know all too well about the fatigue. It's my biggest issue along with the pain right now. Thankfully I could sit and halfway relax when DH was riding some rides that I didn't and/or the kids couldn't go on (most of those I didn't really care about riding so sitting out didn't bother me). However it was not a totally relaxing time for me since I still had the kids. Thankfully my mom went with us but I don't think she'll be going back with us (I'll just say she didn't really enjoy the trip and was in a cranky mood from the moment we left on the trip...which made for an enjoyable 2 week vacation).

If you have not already loked at it, check out the GAC information in post #6 of the disABILITIES FAQs thread.
Also, keep in mind that a GAC will not usually shorten the distance you have to walk. You can get a GAC that would allow you to use the wheelchair accessible entrance (bypassing stairs for the few rides that have stairs and also boarding rides with moving walkways at the accessible boarding area). Using wheelchair accessible entrances doesn't mean a shorter wait or less distance. Often, people with wheelchairs or ECVs are routed to the exit for boarding right before the regular line reaches the boarding area. Since you are at the exit, there is little room for seats.

Another question. If you rent an ECV from somewhere other than Disney where do you keep it when at the resort? Is there enough room to keep it in your resort room? I know keeping our jogging stroller in our room this trip was on the tight side. Getting a handicapped room would not fit our needs since we'd need a place for the kids to sleep.

You may find it's not a problem to keep it in your room. If you find that removing a table of chairs would allow you to have enough room to store it, just call Housekeeping and ask for furniture to be removed.
Some people store the rental ECV with Bell Services or at the resort front desk. Depending on how far your room is from those, that might be a good option for you.
Also wanted to clarify that handicapped rooms are no bigger than non accessible rooms. Some of the handicapped rooms have only a raised seat toilet and grab bars for the tub; they are otherwise exactly the same as a 'non-handicapped' room.
In the fully wheelchair accessible rooms, the bathroom is larger to make space for a roll in shower and room to park a wheelchair by the toilet. To get that space, the sleeping area is actually smaller. The accessible rooms use the same space as non accessible rooms, they just divide the space differently.

 

[sharadoc]

Hi. I don't think I meant to say that you can sit and wait in a line for a ride, I meant to sit during shows, meals, etc. I also said my son doesn't like waiting, so it will be interesting to see how we can manage that. I think what i meant and what I said are two different things - I confused myself! Although I thought I read that there were some attractions that your family can go into line and I can sit and wait my turn on a bench until they get close. I know that's sort-of like line-jumping, so I don't want to do that.

I'm not looking for shorter time, I'm looking for safer - that's all.

We're going in January to hopefully avoid any line issues.

 

[PrincessMom4]

I am just being seen my a specialist for RA, but I am still waiting. I can't move my hands some days without extreme pain.

Any tips??