Multiple Sclerosis and Disney rides

[hygienejean]

My 34 year old DH has been diagnosed with MS since 4/99. His symptoms are mainly tingling sensations here and there.

In Sept. 2000 we went to Busch Gardens. the temperature was in the 90's...Soooo HOT and HUMID! We did tons of roller coasters...he didn't feel great when we were leaving the park that day.

the next morning he had an MS exacerbation that has been the worst he has ever had. It affected his eyesight...It made him dizzy to walk and he felt nauseaus. When we returned home his neurologist put him on steroids and the symptoms went right away.

He has been very wary about roller coasters and heat since then. We went to WDW this May and while it was quite hot,(we stayed in the heat as little as possible) we enjoyed our trip. He didn't do any wild rides...He REALLY wanted to to RnR at MGM and was disappointed to think it COULD cause a new exacerbation. It very well was going to happen anyway and it just was bad timing!

We are planning on going again in 2004 and I know he would LOVE to do MS and other wilder rides.

My question is: If any of you or anyone you know has MS how has WDW affected it? Any new exacerbations? How does the Florida heat affect you? (we are going to go in Oct.....should be better heat and humidity wise than May) Any tips?

While I am asking .....Is anyone here on the Swank diet? (for MS) He is on it (no fats) How has WDW accomadated your diets?

Thank you!!!!

 

[Chuck-PA]

I have MS and we went this past July. The heat was way too much for me. I did not have any exascerbations. I just did not feel right and I couldnt get cooled off no matter what I did. I finally gave in and allowed my wife to rent me a wheelchair for the day. It was the best thing, I wished I would have rented it all week. Too much walking for me.

We are going again in January. We want to see if the cooler temps will make it easier on me and less line waiting so I wont stand for long.

 

[hygienejean]

Chuck,
did the rides bother you in any way? How about Space mountain or the RnR? Hope your trip in January is better. The temps will be much cooler! Take care!

Jean

 

[SueM in MN]

I remember reading about a product that a number of people with MS mentioned was very useful to them in the heat.
It is a scarf that has a section filled with tiny gel beads. You soak the scarf in water, the beads absorb the water and the gel transfers heat from your neck to the beads (not a very good explanation, but the best I can do). It kept coling for up to 8 hours I think and all you do to re-use it, is put it back into water. The scarves were at Walmart and at sporting goods stores as far as I remember.

 

[Chuck-PA]

Sorry, but I did not go on Space Mtn or RnR this time.
Space Mtn makes me dizzy. RnR coaster, I went on before and had no problems.
I didnt even try Mission Space during preview openings in the summer.

Sue- I tried the scarf that you are talking about and it didn't work for me, it did not stay cold long enough. I used the scarf, had a wet bandana on my head, and was drinking lots of fluid.

Airconditioning and relaxing shows helped the most, LOL.

 

[Chuck-PA]

Did your husband's neurologist say that rides are not good for his MS?

What is the Swank Diet?

 

[UponAStar]

Hey Jean,

I have MS (diagnosed since '96 with fatigue and heat sensitivity my all-the-time symptoms and periodic exacerbations of "tingling", optic neuritis, vertigo and bladder problems). We went to WDW last year and I rode RnR (loved it!) ToT (loved it!), Space Mountain (loved it!) with no problems. The key for me was renting an ECV so I could conserve my energy for the fun stuff. Of course we didn't have to worry too much about the heat at that time of the year - I don't do heat well at all.

I've had two separate exacerbations after vacations where we stayed in large cities and did a lot of walking. Both times were in the winter/spring but the heat in the hotel rooms was way too hot with no way to cool it down - A/C didn't work in the winter. So for me too much activity coupled with prolonged heat = possible exacerbation, not a good thing. Maybe the same for your husband?

We're heading back this December and I'm definitely trying MS - Mission Space that is!

I would highly recommend that your husband rent an ECV when you go in October, drink plenty of cold fluids, and visit nice cool attractions to cool down. Have a great time!



BTW - no special diet, I just try to eat healthy well balanced meals, primarily low fat with lean proteins and the occasional splurge.

 

[dj2]

Hi,
I've been to WDW (several times) with MS. Everyone is different, but my best advice is to pace yourself, avoid the heat, and minimize the stress. (Remember, stress can bring on symptoms.) And don't forget if you're staying on site you can get your fridge "comp" for keeping your medicine (if you're on meds.)

As to your quesiton about MS diets, I HIGHLY recommend reading the following books (I'm sure there are others, but I've found these to be very useful):

1) Multiple Sclerosis: A Self-Help Guide to Its Management, by Graham, Judy (might be out of print, but worth the search!)

2) MS: Something Can Be Done and You Can Do It, by Soll, Robert W.

3) The Pulse Test, by Coca, Arthur F. (for detecting food allergies)

and for inspriation...
4) Curing the Incurable, by Rigg, Jacque C.

People might say there have been no definitive studies about diet and MS, but I know the for me, when I eat food I shouldn't, I get worse. It's worth the time to figure out what if anything might be aggrevating your symptoms so you can avoid it/them.

Enjoy your trip!

 

[ghcoughlin]

Hi there!I too am a MSer.I have gone to WDW 2 times in Sept and 1 in Aug. it couldn't get any hotter!!! We took a cooler with frozen wash clothes(I would soak them ,roll it up and toss into freezer,we were at FW cabins) and frozen bottles of water.We would take a break and I would just savor the ice cold wash cloth on my face.It was amazing how this revived me.I did all the mountains in MK with no problem.I do back away from TT and MS.I suffer from Optic Neurits along with vertigo from time to time.I think that combination would be lethal My family and I actually had a SM and BTMRR marathon over and over again.It was great.I'm not saying my legs weren't tingling and dragging when we left for the day.Remember everytime is diiferent,maybe this time the roller coasters won't even phase DH.
Hope it all works out
Heidi

 

[hygienejean]

Wow thank you everybody! It is nice to hear about other people's experiences. My DH got the optic neuritis after the Busch Gardens outing.....It made him really dizzy so I guess I could include vertigo too. It hasn't happened since 1999.....I will encourage him to try something easy and see what happens because he REALLY just wants to enjoy himself and not miss out on things. I love all of your ideas for keeping cool too. He is being pretty good with the Swank diet. (very low fats) and when we were there in May 2003 the chefs were very accomodating. Thanks and good luck to you all!

Jean

 

[ghcoughlin]

Hi again,I was thinking see how DH does on Goofy's Barnstormer.If anything it may give him the confidence to go on the bigger ones I know once you have a bad experience you're hesitant to try it again.Only a thought.
Heidi

 

[Firsttime101]

I have MS and we went this past July. The heat was way too much for me. I did not have any exascerbations. I just did not feel right and I couldnt get cooled off no matter what I did. I finally gave in and allowed my wife to rent me a wheelchair for the day. It was the best thing, I wished I would have rented it all week. Too much walking for me.

We are going again in January. We want to see if the cooler temps will make it easier on me and less line waiting so I wont stand for long.

i also have MS (scooter is a must) and will be going to WDW for the first time this coming February. Did you get the DAS pass? That’s the disability services that allows you not to have to stand in line. Are there slot of indoor places I can step in to? I get heat intolerance even when it’s slightly hot.

 

[mamabunny]

i also have MS (scooter is a must) and will be going to WDW for the first time this coming February. Did you get the DAS pass? That’s the disability services that allows you not to have to stand in line. Are there slot of indoor places I can step in to? I get heat intolerance even when it’s slightly hot.

If shade/cool air is a requirement, plan to bring your own (in the form of fans & umbrellas/parasols/hats, etc.)

There are a lot of shops, but they are not always located next to ride queues. And many of the QS (Quick Service or "walk up") food locations have outdoor or open air seating, although they are often covered, so you may want to plan for TS (Table Service) meals (sit-down, order from a menu full service dining) instead.

With your extreme issue to heat, you really need to go early in January, and even then, there can be 70+ degree days. And remember that it can get quite chilly in the evenings, especially when the wind moves over the waterways.

 

[Allison]

i also have MS (scooter is a must) and will be going to WDW for the first time this coming February. Did you get the DAS pass? That’s the disability services that allows you not to have to stand in line. Are there slot of indoor places I can step in to? I get heat intolerance even when it’s slightly hot.

The post you quoted is 16 years old so things have changed since then.

 

[Firsttime101]

If shade/cool air is a requirement, plan to bring your own (in the form of fans & umbrellas/parasols/hats, etc.)

There are a lot of shops, but they are not always located next to ride queues. And many of the QS (Quick Service or "walk up") food locations have outdoor or open air seating, although they are often covered, so you may want to plan for TS (Table Service) meals (sit-down, order from a menu full service dining) instead.

With your extreme issue to heat, you really need to go early in January, and even then, there can be 70+ degree days. And remember that it can get quite chilly in the evenings, especially when the wind moves over the waterways.

how close to a ride usually is a place where I can wait inside. Having never been there I don’t have any ideas on the layout. I don’t need them to have a place for me to wait. I need DAS because if I am in the heat too long it will make my MS worse and I will lose my energy to be able to get around.

 

[kaytieeldr]

It depends on the ride, and most queues are indoors.

how close to a ride usually is a place where I can wait inside

 

[lanejudy]

I need DAS because if I am in the heat too long it will make my MS worse and I will lose my energy to be able to get around.

DAS does not necessarily guarantee you can get indoors to wait somewhere; it also does not guarantee a place to sit while waiting. All it does is allow you to wait somewhere other than the actual queue (essentially a “virtual queue”). Many guests with DAS end up walking more because of it.

I suggest you request a DAS but also have other plans for your needs - a mobility device that provides a seat (wheelchair, ECV or rollator), going in winter for cooler weather, cooling towels and lightweight reflective clothing, alternate indoor shows between rides (Carousel of Progress, Hall of Presidents, Country Bears and Tiki Room are our favorite indoor shows for a cool rest), going back to the resort in the heat of the day (parks in the morning and evening), mid-day ADRs as a rest break, etc. These things will all help to mitigate your concerns. As PP mentioned, most queues are indoors and mobility devices are allowed through the queue. A DAS may not help as much as you think it will.

Enjoy your vacation!

 

[Chuck-PA]

i also have MS (scooter is a must) and will be going to WDW for the first time this coming February. Did you get the DAS pass? That’s the disability services that allows you not to have to stand in line. Are there slot of indoor places I can step in to? I get heat intolerance even when it’s slightly hot.

No I did not get the DAS pass. I now rent an ECV for my Disney trips.
The cast members help me out with special lines to get in and other help with parade area, etc