Multiple Sclerosis and Guest Assistance Pass

[AndrewJackson]

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?

 

[Cheshire Figment]

Hi and to disABILITIES!

This is going to be a long answer for you, in several parts.

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. You will probably find Post #6 and Post #2 most useful for you.

Or, if you want an easier route, click on the link in my signature.

Note the official response when requesting a Guest Assistance Card for a mobility and/or stamina situation is the recommendation that you rent a wheelchair or ECV.

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.

Once around the World Showcase Lagoon Promenade is more than 1¼ miles; most people tend to average 8 - 12 miles per day at WDW.

And last, please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[SueM in MN]

The answers to most of your questions about Guest Assistance Cards (GAC) is in post #6 of the disABILITIES FAQs thread.

This is not what you probably want to hear, but a wheelchair or an ECV does make the most sense for the type of needs you are describing.
The GAC is not a "Pass" and will not necessarily shorten the time you spend standing. It is not meant to shorten or eliminate waiting in line; just to give accommodations needed to meet needs related to a disability. It would allow you to avoid going up stairs for the few attractions with stairs and would allow you to board attractions with a moving walkway in a place where you would have more time and/or space to board. Sometimes, that means a longer wait. For example, at Small World, we often wait longer in the accessible boarding area than we would have if we had walked in the 'usual' entrance.

Many attractions involve a preshow or a wait in a 'holding area' for 10-15 minutes or more. Those are often shows that have guests 'collect' in a prehow area while another 'set' of guests is in the show. Once the first guests leave the theater, the doors open for the next set of guests who are waiting in the preshow area. Having a Guest Assistance Card will not prevent you from standing in those situations. Most of the areas have a very few or no seats at all and you have to wait in the preshow area to get into the show.
Some examples of places where you would have to stand - Guest Assistance Card or not would be:
Studio
Great Movie Ride
American Idol Experience
Sounds Dangerous
Muppet Vision 3D
Voyage of the Little Mermaid
Studio Backlot Walking Tour
Journey Into Narnia
One Man's Dream (This is a walking tour)
Twilight Zone Tower of Terror

Magic Kingdom
Railroad - there is not a preshow, but the train has to come to the station for you to board it.
Tiki Room
Hall of Presidents (currently under renovation)
Haunted Mansion
Country Bear Jamboree
Mickey's Philharmagic
Monster's Inc. Laugh Floor
Stitch's Great Escape

Epcot
Ellen's Energy Adventure
Mission Space
Test Track
Circle of Life (Movie at The Land)
Soarin'
American Adventure
Reflections of China (a 14 minute movie that has no seats, just rails to lean against)
O Canada (a 14 minute move that has no seats, just rails to lean against

Animal Kingdom
It's Tough to Be a Bug
Festival of the Lion King (you will need to wait for the next show)
Wildlife Express Train (you will need to wait for the next train - they leave every 5-7 minutes)
Flights of Wonder (there may not be a place to sit when waiting for the next show)
Finding Nemo (you will be standing during your wait for the next show)

Having a wheelchair or ECV would give you a place to sit during those kinds of attractions and would also help you cover the distances for a WDW visit. Many people don't think about how much they walk in a day at WDW, but the average is at least 3 miles per day. Many of the lines are very long distance to walk from the entrance to the actual boarding area. A GAC would not shorten the distance and the GAC is only used in lines and does nothing to help you get from place to place.

 

[goofieslonglostsis]

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.

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.

 

[lmgaddis]

This was my experience going to WDW with my Mom last year.

We went last April and my Mom had just been diagnosed with MS. She decided to start her injections when we got back from Disney b/c she wasn't sure what her side effects would be.

She did not rent any sort of wheelchair or other device, I had not been to these boards yet and didn't really know that she could.

She was exhausted!! I can't stress that enough to you. I mean just bone tired! We took breaks from the parks everyday at around 2:00 . We only went back to the parks one day. She just couldn't do it. We got to the parks at around 10:00am or so. We took breaks at the parks also.

I would rent something if I were you and I would not hesitate to rent something for my Mom if she were to go back with us. She really wants to go again so this is something I have looked into for her.

Good Luck with your trip and have fun! Don't worry about what anyone else thinks. Do what is best for you and your family. Since my mom was diagnosed with MS I don't think twice about people in chairs at the parks. You just never know. No one would ever guess she has MS. I hope your shots are working well for you!

 

[KPeveler]

rent a scooter - you will not be pushed in a chair all day, and will have mobility and independence.

There is no pass which will allow you to skip any lines, and you will have to walk about 8 miles a day even with a GAC (even if you walk through a line, without waiting, you still have to walk that whole distance).

I am in the process of accepting a wheelchair in daily life (I do not have MS, but my symptoms mimic it exactly except for the vision problems), so I know how difficult it can be. however, sometimes it is necessary to enjoy life. Disney is one of those times.

Remember, there is a difference between surviving Disney and ENJOYING Disney.

If you go to guest services and tell them your issues are with mobility and endurance, you will be told to rent a wheelchair or ECV, since no pass can shorten the distances between the rides...

 

[bonybroad]

I have MS, also.
I've been diagnosed for 5 years, but this last year has been really kicking my butt. (Darn white blood cells! I wish they would calm down!)
That being said, I have been to Disney 6 times since diagnosis. I always go in spring because of the heat issues. This time we are going in June. I have a cooling vest that will really help with that aspect. If you don't have one, I recommend calling your local NMSS chapter and see if they will send you one. Mine was free. Also, rest is imperative, as you know. There are benches scattering throughout the parks, and I park myself at one of those every chance I get! My husband has convinced me that I need my cane for this trip, even though I hate it.
You know what you can handle, and what you can't. This diease is so unpredictable, and you know heat makes it so much worse.
Good luck with the Avonex, and have a good trip, no matter what anyone else thinks. Our white blood cells have turned against us, and there is nothing we have to explain to anyone!

 

[tiggeraholic]

I also have MS and was diagnosed in 2000. I am not on injections but on the once a month infusion, Tysabri. I went to WDW twice last year, once during Spring Break and then in November. I always get a GAC. I just save my letter from the MD and my last GAC and no questions are asked. I wouldn't worry about anyone questioning your "invisible" disability. I have had one person question me in the last 8 years and he was a teenager and my husband quickly put him in his place.

Good luck and have fun!

 

[bonybroad]

Okay, now I want to discuss a little..
I've been on Avonex, Copax, Tysabri, IV steroids every month, and now I'm waiting for IVIGG. So far nothing has worked.
Isn't it crazy that it so different in different people?

 

[tiggeraholic]

Avonex made me feel like I had the flu all the time. Copaxone gave me welts and they would itch really bad. I tried all kinds of remedys to make it stop but couldn't find anything that worked on me. I have been on Tysabri for over two years now and it is the best fit for me right now. I haven't had a flare up in over two years and I love just having to worry about my meds once a month! I also have very good insurance that pays all but a $15 copay each month.

 

[bonybroad]

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!

 

[Tiggerish]

Please consider renting a ECV from an off site vendor and having it all the time. I have also been "blessed" with MS and would have had to spend the majority of my time in the hotel room at WDW without an ECV. It was exhausting just to walk from the room to the food court area or the bus stops. I needed the EVC even though I was fully functional at home at that time. But at WDW the distances are deceptive and the heat creeps up on you.

I decided that I did not care about the "looks" because I was never going to see those people again.

Your family will have a much better time if you are able to keep up with them and not always looking for a place to sit down or saying, "go ahead and do that without me, I will wait here on this bench." I know this from experience.

 

[Tara619]

See my similar post http://www.disboards.com/showthread.php?t=2101925

I am 27 and look healthy too. I can get around just fine with barely a limp in my normal every day life. About 1 hour of shopping is all I can handle, though. I KNOW for a fact that I will not be able to survive more than 2 hours of our 7 day vacation w/o some help. I have accepted the fact that I need to rent an ECV thanks to the wonderful DISers here.

You're spending all this money on a vacation, do what you need to do to enjoy it. Don't worry about what others think. Would you rather be miserable the whole time just to avoid an eye roll from a rude, ignorant person? Or would you rather enjoy yourself?

I rented a ECV from Walker Mobility. Hopefully I don't run over anyone!

I've come a long way since that first post, huh DISers?

 

[AndrewJackson]

Thanks to everyone for the advice. You can tell there some anxiety regarding this. I especially don't want to embarrass my two teenagers.

In terms of the medication.... I experienced severe flu like symptoms the first couple of injections with the Avonex. After that, they started to subside. Now there is hardly any side effects, and I have had no additional flare ups.

 

[bonybroad]

Thanks to everyone for the advice. You can tell there some anxiety regarding this. I especially don't want to embarrass my two teenagers.

In terms of the medication.... I experienced severe flu like symptoms the first couple of injections with the Avonex. After that, they started to subside. Now there is hardly any side effects, and I have had no additional flare ups.

I am sure your teenagers will understand. And if they don't tell them you won't carry their stuff on your ECV. I am so glad that the avonex settled things down for you. Remember to stay cool, and have lots and lots of fun!

 

[Cheshire Figment]

Thanks to everyone for the advice. You can tell there some anxiety regarding this. I especially don't want to embarrass my two teenagers.

I'm sorry, but your two teenagers are automatically embarrassed by your very existence and being with them in public. Using an ECV cannot make it any worse.

 

[goofieslonglostsis]

I'm sorry, but your two teenagers are automatically embarrassed by your very existence and being with them in public. Using an ECV cannot make it any worse.

Amen! It's a teenagers job to be embarrassed about their parents and the parents job to embarras them.


But besides that; think about the benefit it will do the teenagers to have you not in a lot more pain and exhausted. Experience WDW in the best possible way, doesn't that sound like a ball?

Or ask yourself the question "what if it was one of your teenagers that had the MS instead of you?" Wouldn't you want them to get the ECV and focus on enjoying themselves instead of having pain and exhaustion rule them? Wouldn't you tell them to act upon what they need, not what others think? Wouldn't you tell them you love them, never mind if they walk, propell, drive, crawl or whatever? Why not give yourself that same love and compassion? You do not need to hold yourself to a silly 'higher standard' than any of your loved ones.


*yep, if need be a little emotional blackmail using loved ones is always permitted if it is the one last push one needs to accept they might benefit themselves from using an aid, do it to myself also*

 

[Mindy5767]

Hi there. An able bodied mom here to get information on ECV's for my MIL. She said her physical therapy really helped and says she won't need one (she's had double knee replacement and is 74). But she hasn't been to the Magic Kingdom since 72!! She has NO idea! She won't rent one in advance (cause she doesn't need it). I just hope that we can get one if she decides that its too much walking for her. She says she now can walk 3 miles a day. That's great!! But Disney is way more miles, plus its hot (she lives in Waco) and humid. We shall see. I've now got some information that i'll need just in case.

BTW... WHO in their right mind would give a second look to an ECV at Disney?? They're all over the place. and No matter what you're in or not in, ECV, wheelchair, your feet... you're teenagers will be embarrassed by you. That is what they do! Mine included. Give them something to REALLY be embarrassed by, buy a Yeti or Stitch hat and wear it!!

 

[Tiggerish]

Mindy, take the telephone numbers for the ECV rental places that is in the FAQ section with you. I know that Walker was able to get a scooter to the hotel by the early afternoon when called in the morning when a stubborn person came to her senses after one day of misery. That way, if your MIL changes her mind she could get a multiple day rental and use it at her resort also. After getting worn out at the Magic Kingdom, I swear that evil pirates had move my room five times further away from the bus stop while I was in the park.

 

[Mindy5767]

Mindy, take the telephone numbers for the ECV rental places that is in the FAQ section with you. I know that Walker was able to get a scooter to the hotel by the early afternoon when called in the morning when a stubborn person came to her senses after one day of misery. That way, if your MIL changes her mind she could get a multiple day rental and use it at her resort also. After getting worn out at the Magic Kingdom, I swear that evil pirates had move my room five times further away from the bus stop while I was in the park.

I have copied it to my Microsoft Onenote Disney Notebook on my laptop. When my MIL decides she's ready to rent one, we can call any company that can meet our needs. My DH programmed the one at the Boardwalk, Buena Vista Rentals into his cell phone. So, we're ready!

Thanks for your help.