Experinece with RSD or other nerve disorders?

[kschafer]

I am planning a trip in May with a dear friend who is suffering from RSD. I'm wondering if anyone with a similar condition (or has travelled with someone who does) who can offer some suggestions.

I must confess upfront, I don't know a lot about this disorder except what she had described to me about her experience. She sometimes feels extreme pain if even gently touched on one side (mostly throughout her arm and shoulder). I am concerned about how to help keep this a magical trip for her and not one of pain.

Basically I'm wondering how I can protect her from being bumped too much. I've considered a wheelchair rental just to prevent her from being bumped when in "open" areas. I'm also concerned about being in close quarters of queues. There is the mental aspect as well because it can be very stressful for her with the worry someone may run into her which of course is bound to happen in crowded spaces.

She has an amazing optimism but of course stuggles often with this condition. This will be her first trip to WDW and she is very excited!

Any suggestions are greatly appreciated!!

 

[peemagg]

I too have Rsd but mine is in the foot. Disney will not be too bad for her. My suggestion is to get her an ECV and have you walk on the bad side as a buffer from the rest of the crowd. Use your fastpasses and maybe get a good touring plan (alot of people like TourGuideMike), to expedite your days.

Don't worry too much. I'm sure you'll find it is a easy place to tour and she will have a good time.

If you walk it just act as a buffer as much as possible for her. If there are more than just the 2 of you, maybe you can kind of surround that bad side.

Good luck with your trip.

I understand what your friend is going through and sympathize with her. RSD is a nasty disease, and commonly misunderstood. You are a good friend to try and understand what she is going through. Many don't even try. Have a great trip!

 

[kschafer]

Thanks for your advice!

It will just be the 2 of us and I have been several times so know my way around for the most part which should make things a little easier. I'll have to ask her about an ECV

 

[KPeveler]

I second the suggestion for a wheelchair or ECV.

I have a neurological disorder which makes it VERY painful for me to be bumped into. I use a powerchair for a variety of reasons, so that provides a buffer for me.

I also approached guest services when I got to the park to ask about a GAC, which they provided for a variety of my needs not met by the wheelchair. I dont know what she needs (RSD often goes with other things), but if she does not think a wheelchair or ECV will meet her needs, I would definitely suggest asking guest services to see what they can do for her. A GAC is personal for a variety of needs, so I am not sure what will be best for her... just saying!

 

[kel&eun]

Hi everyone..
My wife has RSD throughout most of her body including face and scalp. She has her first WDW experience 4 years ago. We return there every year. She does use an ECV and obtains a GAC. She has learned since 2003 having this illness has it's up and downs but always the pain remains. Disney itself lifts her spirits and that in itself is good for her.

 

[kschafer]

I really appreciate eveyones input!

A question about the GAD card that I can't find. I read that some attractions have a seperate waiting area for guests who can't handle the crowds of the regular line. Is there someplace you can find a list of these attractions? I am hoping that going at a slow time of year and using a good touring plan, lines won't really be an issue but thought I would ask.

I'm glad to hear that you all still enjoy Disney just as much! My friend is very excited about this trip

 

[peemagg]

What you want is a GAC (a Guest Assistance Card). When you go to Guest Services explain to them what she needs, not her diagnosis. They will then give you a card that lets the other CM's know what type of accomodations are needed and then that CM will try to accomodate that if possible.

For more info on all of the look at the FAQs sticky at the top of this forum. The Moderators have covered most everything in great detail.