Multiple Sclerosis and Guest Assistance Pass

[Capt. Barbosa]

DW has MS and our first trip to WDW after her diagnosis she decided to tough it out, well our 4 trips since we have always rented an ECV from off site and she (and we) enjoys our trips so much more.

 

[violentlyserene]

What a helpful thread! I don't have MS but do have other mobility and endurance problems that have me seriously considering getting a wheelchair. Right now I'm leaning towards just reducing extraneous walking as much as possible and sitting on the ground in line if need be. It's good to know there are others with similar problems.

Mindy5767, I'm using a onenote notebook for planning as well! It's only got two pages in it so far but I think it's going to be invaluable for flexible planning.

 

[Schmeck]

Two things to note - I don't remember ever having to stand still in line and wait for any attractions other than the ones SueM listed, the ones with pre-show holding areas. Everything else was at least a slow crawl.

Second - even if you have a GAC, this does not guarantee that you get there in a shorter distance (FP lines tend to run parallel to the standby lines) and a GAC is not intended to get you on the ride any faster. Actually, depending on the people ahead of you with GACs, and those needing to wait for a special ride vehicle, you might have to wait even longer to get on.

So, a second/third the motion that anyone not having the stamina to be in a queue at WDW should really get an ECV or wheelchair. You do far more walking between attractions than in them, and you're doing nothing but using up precious energy and time with your family if you have to stop on a bench every 20 minutes to get relief.

 

[tiggspring]

AndrewJackson. I understand completely regarding not wanting a WC or EVC. I have severe Fibromyalgia. My greatest fear was getting to WDW and being in bed for all of it. While I understand those who recomend ECV's and would have used one if I had to, like you I did NOT want to do it. I wanted my trip to be an escape and seeing a ECV waiting for me at the exit would have been a reminder of my disability after every ride. For one week I wanted to be "Normal". Here is what I did. Hope it helps.

Since you have picked a good time of year from crowds you have that on your side. I highly recomend Ridemx. It allowed me to customize a plan and in May I waited on average 5 min per ride. including rides like Peter Pan. I hear tour guide mike is good too. I was done packing two weeks before and did absolutely nothing the week before my trip. For me that ment staying in bed most of that week. Once at WDW I utilized my meds to the max and followed my plan closely making sure to take breaks at the room in the afternoon. We spacificly picked a monorail resort so I would not need to get in/out of the car and walk very often. When we did need to park I used my handicap plate even though I dont look disabled going in comming out is often a different story.

In the parks it ended up most of the time I would walk less that 5 minutes, stand in line 5 minutes and be on a ride or in a show for 5-20 minutes. This was great for my pain/fatigue/numbness in legs because I never did anything long enough to cause problems. We were on the dinning plan so that was well planned too. I did get a GAC and twice when waiting in line for a show I nearly used it beacuse we had to wait 20 minutes and they insisted we stand when it started to fill up. But this happened only twice out of 7 days.

I will admit once I got home I crashed for a week and had residule issues for many more. For me it was worth it to have a week where my Fibro wasnt frount and center. Where I could just be a mom. But do have a backup plan for an ECV it easily could have gone the other way if the weather had not been perfect for me the week I went. Good luck
Sending painfree vibes and pixie dust your way

 

[goofieslonglostsis]

What a helpful thread! I don't have MS but do have other mobility and endurance problems that have me seriously considering getting a wheelchair. Right now I'm leaning towards just reducing extraneous walking as much as possible and sitting on the ground in line if need be. It's good to know there are others with similar problems.

Maybe a rollator is the way to go for you? It would allow you to keep walking (you'ld have to ), yet can make the walking lighter because you are able to lean/hold onto it. Also reduces risks of falling. Best thing though; there are all kinds out there with a seat on it!! This way, you can walk and if need be; sit down.

 

[Tosie]

Avonex made me sick, AND it didn't work.
Copax was no good, either.
Tysabri - well, it caused some type of allergic reaction where my throat swelled shut and I got hives and they had to pull the IV and shoot me up with Benadryl.
IV steroids didn't do anything except make me gain weight and make me crazy.
Mine just WONT remit!

Dh uses Beta Seron. He did Copax and then had the WORST exacerbation of his life (right after a WDW trip one October). With the Beta he wakes up with good days and bad days BUT he really has not progressed much after 12 years.

To the OP: do what you need to do to have a wonderful vacation. I think those of us who live with "invisible diseases" and/or those who have them are much more in tune when we see someone in the parks who "looks healthy." Don't worry about what the other ignoramuses (or is it ignorami?) are thinking.

Have FUN and enjoy your family and allow them to enjoy YOU!

 

[ilovetivo]

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available will increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

Thank you for this! Wonderfully stated. I may quote you from time to time ")

 

[Minnie&Nana]

MS can be a stinker. I've had it for 33 yrs, but you would not know it to see me. Meds haven't worked due to severe reactions, so it's been a challenge, but am very grateful not to be in a wheelchair.

Have not yet rented a WC or ECV, but if we had to visit between mid March and late October would definitely rent one. There have been times when I wish I'd rented an ECV, but I don't drive and not sure I'd be able to maneuver one safely. With your situation, I hope you will consider renting one.

When we first found out about the GAC, I didn't even want one of those because I worried what the CM's would think - now first thing is to stop by MK City Hall - the GAC makes a world of difference. I never have to worry about stairs or moving walkways - rarely does a CM give me a questioning look - but if so, I simply say I have MS and cannot handle stairs. Also, on a few attractions I must ask for the seat with a teeny bit more leg room b/c it is painful without even that little bit of extra room. Some attractions I no longer ride - Peter Pan for example, as the moving walk cannot be stopped during most of the day.

We always make it to park opening and leave between noon and 1 p.m. to go back to the resort. Without a midday rest I'd not be able to do much - we also do not stay late into the evening and never stay for IllumiNations as the crowds and the long walk back to the monorail/buses are very difficult. This is easier now that my children are grown and I travel with friends.

Resort reservations Special Needs dept have been wonderfully helpful in blocking a room and having my needs taken care of - even though I do not have a wheelchair, a roll in shower is sometimes necessary now, but they can also block a room with bathroom hand rails and arrange for a shower/tub seat, if needed. They also arrange for a deep cleaning since MS has seriously effected my immune system.

Please remember to take Park time in small amounts and no matter what, do not push yourself at all to do more, stay longer etc. REST is essential, which includes sitting on a bench and people watching (if no ECV). It can make such a difference. Since I cannot do any of the "thrill" attractions, it allows several times during the day to sit/rest while friends/family enjoy those attractions.

Have a wonderful trip!

 

[maryserv]

The family and I are going to WDW in a few days. This is my first trip since being diagnosed with MS. I do pretty well with it, and am taking my Avonex shots once a week. My biggest symptoms are numbness in the feet and weak knees and leg strength. Also, my feet will hurt very badly at the end of a day if I stand too much.

With that said, I would really like to enjoy the parks without a wheelchair. I worry about the looks etc. Honestly, if you looked at me you would have no idea I have a disability.

I am considering hitting the parks early, then taking a long break at the resort, probably from around 1:00 - 5:00 or so, then come back to the parks for a while. Since I will be limited to how much time I can enjoy at the parks, and the fact that standing in line all day would be painful by the end of the day, is it appropriate for me to ask for a guest assistance pass? Are they just going to tell me to get a wheelchair instead? I really do not want to do this.

I am also concerned about the looks I will get when I walk up to the ride and ask for special access. I am not sure I am ready for the rolling of the eyes, etc.

Last question... If I decided to get the guest assistance pass, what type of documentation will I need?

I also have MS. I have tried WDW various ways and always end up going to get a GAC. For the following reasons - fatigue, pain in hands and feet (made worse by fatigue), heat intolerance (makes everything else worse). Last year was my first year to use ice vests. They worked great, but were heavy. Let me know if you want more info on those. I did end up having a"discussion" with a Cast Member at Epcot over the type of GAC I received upon request (It was different from previous times. Last year I also found that 50 spf sunscreen did help with the sun-related energy zapping. That was a nice surprise!

Good luck, holler if you have questions! Mary

 

[bouncy54]

I posted this a few weeks ago. I wrote it to encourage others who are thinking twice about renting a scooter or WC.

http://www.disboards.com/showthread.php?t=2402174

 

[tinkerfan1]

I also have MS. It is nothing to be embarrassed about. I know, easy to say. Last time we went was in November. I had asked about rollators at the time and decided against that. I tried one before going and it just didn't work for me. We ended up taking a wheelchair and leaving it in the room. However, many days we would end up renting a wheelchair once we were in the park and it was wonderful! My family did not mind pushing me around at all. They are used to it now so we may certainly do that again. My walking is worse over the past several months than it had been the previous few years since being diagnosed. The thing with MS is it is so unpredictable. I made it a couple days on our vacation and walked pretty good. Then other days, I couldn't walk at all. And, like you said, to anybody who didn't know me, they couldn't tell what was wrong. DISABLED was not typed on my forehead. But, who cares! I have been on Avonex, Tysabri, and most recently Copaxone. I am now in limbo while awaiting some blood tests. Good luck with your MS. I hope you get it under control. Have a great time on your vacation, too!!

 

[Punchy]

I went to WDW in 2008 and in 2009.

The first trip I decided to tough it out and walk. It was very stupid of me. I spent a lot of money on that trip, and I spent it going "only that much further until the lamp post" or desperately scouting for benches.

The second trip, I walked the first day, then rented an ECV for the rest of the trip. My fun level went up 75%!

For me, the heat is worse than anything. Then my walking starts to fail. I end up in a mental haze, unable to enjoy anything.

My family loved it too. I carried their stuff when they were tired. I zipped ahead to check ride times or to secure our ADR. They made me go buy ice creams and drinks while they rested in the shade. I felt useful.

And since you are mobile otherwise, getting on rides etc. isn't a problem.

My four pieces of advice for people with MS:

- rent an ECV
- stay on the monorail
- take afternoon naps and a swim or
- book lunchtime ADRs instead of dinner

 

[samnbilly]

Pst, don't tell anyone about this big secret. Most of us using a wheelchair don't have a tatoo on their forehead saying DISABLED.

Seriously though; most using a wheelchair do not 'look like having a disability'. If you let your looks determine what you will and wont do in life, you will miss out on SO much! Do whatever you want and whatever you need, never mind if you fit the stereotype exterior look people might associate with that.

Think about not using the wheelchair. Yes, you will safe your 'ego'. Or probably more, you will save your own fear and perhaps even 'prejudice' of those 4 wheels. How much is that worth to you? How much is it worth to do WDW the way you want to, without having pain and fatigue hold you back more than absolutely needed? How much is it worth to do WDW without worrying you are 'keeping back' the family? How much do you think you would enjoy the day more if you're not in so much pain it blurs everything else you get in during that day?

Let people think whatever they want. They'll think anyway, so we'ld better give them something to think about. Using a wheelchair does not mean you should look a certain way. It doesn't mean you are now literally convined to the chair. You don't need it at home; great! You do not even have to sit in it and keep there the whole day at WDW. You can alternate between some walking (walking behind a wheelchair might even be easier to walk) and using the chair.

I wouldn't recommend a wheelchair for this situation, though. I would recommend looking into using an ECV. Doing all of those miles in a chair is energydraining enough for those used to pushing a wheelchair around. You're not used to it, have a limited amount of energy, so I wouldn't think it's the best use to use it up on moving around. Never mind if that is walking or propelling. Think about the freedom an ECV could give you. You could do things solo if desired. You can keep up with the family. You wont have to deal with too high levels of pain. Think about the fun that doesn't get mixed up with all of that. Stick your nose up in the air and let others, ehm, store their comments where the sun don't shine. If they have a problem with you using an ECV or wheelchair, it's just that. THEIR problem. Don't make it yours and let it influence your trip negatively.

Seriously, think about YOU, not others.

I know this post is old, but I really appreciate it SO much!
I don't have MS, but I have Chronic Regional Pain Syndrome Type ll (the old name RSD) & I herniated discs in my back trying to take care of a patient at work.
Last time we went to Disney, I had my poor DH pushing me in a WC. I thought because I could walk for a little while, I didn't need an ECV, and I also felt embarrassed because of the sneers and comments I get when I occasionally use my Handicap parking decal.
This year for the first time, I am renting an ECV. I find that not only is the distances in the park tough, I would walk thru the attraction Ques and it was exhausting!!!!
I'm so glad I read this because I also felt concerned about me wanting/needing to walk-I'm in a bad flare up right now and the nerve pain goes from my lower back, both sides of my buttocks, all the way down both legs to my feet/ankles. if its TMI, I apologize!! It makes me unable to sit at times waiting for me to admin my pain pump dose.
This post especially has helped reinforce the need for an ECV this trip..
Thank u all!!

 

[goofieslonglostsis]

You're most welcome! This is exactly why I post and speak up. It's a lot nicer to learn from others experiences than having to find it all out yourself. And with a stay at the Boardwalk, you will find you are in the right place for a very comfy accessible experience.

 

[samnbilly]

You're most welcome! This is exactly why I post and speak up. It's a lot nicer to learn from others experiences than having to find it all out yourself. And with a stay at the Boardwalk, you will find you are in the right place for a very comfy accessible experience.

Thank you!! ;-)