suggestions for juvenile arthritis - also sun sensitivity-sorry LONG

[lmmmdtmlem]

We are going on our first trip to WDW with our children in November and our youngest dd is three years old and has juvenile rheumatoid arthritis. When she is not in an active flare(and I hope she is not in one when we go!), it is very difficult to tell that she even has the arthritis. It mostly affects her right knee and besides a small limp and a joint contracture, there are no outwardly visible signs of the disease. She does however tire very easily and I know will have a difficult time keeping up because our other two children are 7 and 11. We are definitely taking a stroller for her, but, I think what concerns me even more is waiting in line for long periods of time in the sun. She is on a medication that makes her very sensitive to the sun. She must wear sunscreen at all times outside - even in the winter here in PA. She is very fair skinned on top of that. The medication causes pitting of the skin around the nose and cheeks if overexposed to the sun. Is there any way that we would be allowed to wait out of the sun with her in the lines? My husband and parents are also going so one adult could stay with her. I can just imagine the nasty looks we would get when we suddenly jumped in line with the rest of the family after sitting in the shade for the line to proceed. Any suggestions would be greatly appreciated.

Also, my father has bone malformations in his feet which cause him to have quite a pronounced limp and he tires very easily after walking for a while. I'm pretty sure he wouldn't go for the idea of renting a wheelchair though. Any suggestions for him? I guess we could have him wait with dd and both of them get into line together when we get close to the front.(?)

Sorry, this is long. Any ideas? Thanks a lot!

Julie

 

[SueM in MN]

Welcome. Those are good questions.
There is a Guest Assistance Card with just the wording that your dd needs. You can go to guest Services in any of the parks and ask about getting one. It would be good for your entire stay. The wording you want is to be able to us your stroller as a wheelchair (which means you can bring the stroller in lines where strollers are not usually allowed) and wait out of the sun when the line will be in the sun. The Guest Assistance Card doesn't allow you to jump to the front of the line; you will probably wait as long as anyone else is waiting for that ride, but the wait will be in a more appropriate place.
Most of the lines are actually quite well shaded with trees or roofs, so you may not have much problem, but you will be able to use the card for the times when it is a problem.
Fastpass will aslo be a help because you get a fastpass that tells you to come back in a specified time frame. When you come back, the actual wait in line will be only about 10-15 minutes.
Now, for your father. Most people worry about waiting in line, but the part that really tires you out is the walking between things. Those parks are huge and you will be walking at least 2 -3 (or even more) miles a day. A wheelchair or an ecv can help to conserve energy so that he can spend the day in the parks without becoming exhausted.
have fun and ask as many questions as you can think of.

SueM in MN
Co-Moderator of disABILITIES

[This message was edited by SueM in MN on 03-18-01 at 03:58 PM.]

 

[teri]

Make sure that you get the stamp on your GAC that states that you are to be allowed to wait in shady areas if the queue is in the sun for an extended period of time.

Here is a link to a post about Convincing someone to use a wheelchair or ECV when they need it.

And here is a link to a
post with information about sun protection.

And here is a link about constructive ways to deal with people who stare or make comments.

Look through some of the posts on the first 2 pages of this board, I think you will find some good information. I am sure you will have a great time!

"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

 

[JudithM]

My sister, who is now in her thirties, was diagnosed with JRA shortly before her second birthday. I remember those days well. I remember, too, how my parents felt, how she couldn't stand up until 6 p.m. each day, etc. Fortunately, my sister has done well since those early days. Other folks have given good advice & tips about the GAC & staying out of the sun.

As for your dad - please encourage him to use a wheelchair or an ECV. I was diagnosed last year with a knee condition. I am not supposed to do stairs or bend my knees at 90 degrees for long periods, etc. On our last trip to WDW I rented an ECV every day at the parks. It was wonderful & worth every penny I spent! By renting an ECV, I was independent & didn't have to have my husband push a wheelchair (I am not thin ). The way the ECV is set up I could stretch out my leg & not bend it at the knee. The ECV helped me feel better - not be achy, sore, etc. - & therefore both my husband & I could enjoy more things for longer periods or time. If I had to walk it all, I wouldn't have spent as much time at the parks. Plus the basket in front of the ECV held our jackets, sweaters, pins to trade, camera stuff, etc.

Personally I think your whole group will enjoy the trip more if your dad uses a wheelchair or ECV. There are many discussions on this board that helped convince me prior to our last trip that an ECV was the way to go for me. Have fun planning

 

[lmmmdtmlem]

Thanks so much for your responses. We will work on my dad to try to get him to accept the use of some kind of assistance. I'll read some of the other posts and email those to him that I think may help him change his mind. Thanks again!

Also, I feel much better about dd and keeping her out of the sun and allowing her to use the stroller in line. Thanks so much!

Julie