Hi there - wondering if any of you could share your experiences with me regarding coping with RSD at Disney World
My daughter who's 12 recently was diagnosed with RSD in her left leg
We have placed a hold on booking holidays until we come to terms with the situation but would like to treat her to a really nice holiday in the near future to cheer her up
My problem is that she loves all the wild rides at Disney, Busch, Seaworld etc and I assume that these sorts of rides would aggrivate the RSD in her leg - is this the case...?
I know we could stick to more sedate rides and shows but feel that this would only serve to demonstrate just how much her life has changed with the illness
We have a wheelchair for covering distances and I know that Disney are really geared to their wheelchair visitors but what about those in pain !!!!
If Orlando is not an option what other resorts would you recommend for a family who love sightseeing and themeparks - again based on your experiences
Many thanks
Andrea (Alison Mum)

Alison's Mum

I have some ideas
I would like to surprise your daughter so would you be kind enough to PM
me
Go to the right hand corner
Maybe you can register yourself so you don't have to use your daughters account and you can both ask questions.I am sure you have plenty of your own
This can be daunting for a parent to say the least.
You have one very brave daughter coming on here and taking charge of her medical future.
That is the # 1 rule in getting better.
Don't let the docs tell you everything.You be their guide in how you want to be treated

Much peace and all the good stuff you want

GnP

Hi Andrea,

I applaud what you're doing. I also have a child that age and I'm impressed with how you're dealing with it. I can't imagine my son having the amount of pain we all live with daily.

First of all, if she has less pain the morning, I would take advantage of that.

There are things that you can do in the water that may be easier for her. I just saw a show in the Travel Channel on things to do at Seaworld. They had a shark encounter that's in the water which looks really cool. You're in a cage in the shark exhibit - with a glass front. 2 people at a time in the cage.

They have Discovery Bay which is a full day park - dealing with animals in the water. - among other things. But they have a dolphin experience that looks wonderful and a shorkeling bay which might be fun for her.

Rides - I know that I can't ride because of the vibration and pressure on my arm. It depends how sensitive she is - which could change over the course of the day.

I'm not sure I answered your question - but I haven't been to Disney World/Land for about 20 years.

Hi Andrea! Yes, the rides would aggravate her so much more! she was talking about how much pain she was in. please no harsh rides. I can't think of any good rides that are gentle? There is the ocean, beach. maybe a cottage right off the beach? walking along in the sand.. collecting seashells, taking photos etc. just a thought. Love, Desi

Hi. My experience is limited to Disneyland, but I assume that it carries over for all relevant purposes.

First of all, for something like $40/day they should rent your daughter an electric cart, which is great. Call ahead though to make sure that they don't have any age restrictions which can't be waived in the event of significant disabilities. Even if you have to push her in a wheelchair there is one little secret of the Magic Kingdom I'm about to make public: people in wheelchairs/scooters go (along with their families) to to head of almost every line!

As to rides, I found that they didn't exacerbate my RSD one bit. The roller coasters did however give me enough chest pain to put me in the hospital for a couple of days, but that was only because at age 54 I now have a history of cardiac artery disease, nothing to do with RSD/CRPS-1.

Finally, I would do whatever you think is most appropriate for dressing your daughter in order to be out in warm, sunny and humid weather.

Good luck and enjoy!

Mike

Hi Andrea, We went to Disney World in Oct. I rented a scooter from Randy's mobility for $150 a week with the coupon on the Internet. They drop off at hotel and pick up., It saves chancing a rental at the parks. The buses are accessable for the scooters, and break down to take in a car. One with a canopy is great too, the sun and heat can overwhelm.

We did not find the availbility to goo to the front of any lones in Oct. They were acomadated for the wheelchairs and scooters and you waited as everyone else. There were a few instances an alternative enterance was available not generally though. When the heat was overwhelming, we were able to get her inside a bit faster but, she had to wait anyway.

Universal often allowed her use of the express lanes, but NOT ISland of Adventures. The one Dr. Suez land ride a choo choo type, was long upholl and extremly hot that day....then we found out that only if you can't transfer from wheelchair they will take you up an elevator.... I was furious as my daughter was so overwhelmed by the uphill hot wait, when we could have utilized the elevator...Even the cat in the hat ride, instead of allowing to go in the exit to wait, a near hour wait in the heat with so many people happened the first day. The second day I demanded some accomadation as the day before she got on two attrations and it was too much, she was ill from heat and the wait in super long and very warm, muggy lines.

Get a water bottle with a spray, take a cooler, with water bottles, and power bars.
A handicap room on site at Disney is closer to the main building and pools, also on the lower floor. It has a refridgerator and more room. We had a connecting room for four of us and no extra charge.

Stop at Main street Town Hall on the way into the Magic Kingdom to get a brochure to have a list of alternative ride entrances for wheelchair access if any.
Stop by Aid stations during the day to cool off have gatorade, and any meds can be taken or kept there. They are very kind and helpful if you run into problems.
The rides were no problem, and the pain levels down.

When we went in Oct there was record heatwave.
we are going with the sons family in Oct again.

Have fun
Dianne
Good luck

Andrea
Remember no matter where you end up taking Alison on vacation it will be special Family all together relaxing and having fun, nothing better than that
Jeanne