WDW with MS

[the_green_machine]

Hey guys,

I am, secretly, planning a trip for my wife and I in Jan of 2012.

My wife has Relapse and Remitting MS and I have a few questions about the park. and would love it if someone with some experience in the matter could give me some advice.

I've done my best to try and stack the deck in our favor in as much as this trip is concerned, i.e. I'm planning on booking in mid Jan. to take advantage of the low crowds, less time waiting in lines (also researched the Fast Pass and how we can use this to our advantage) and also Jan. should afford us some more reasonable temperatures.

My wife's biggest issues are fatuigue and, at times, lack of stamina in regards to walking or standing for long periods of time. Heat is also an issue but with an average high of 22 c (we're canadian ) we should be able to manage (we live in Manitoba so at that time of year we should be sitting at about -40 with the wind chill so we wont be complaining much for that week ).

I also must preface these questions with, I am somewhat aware of the size of DW and we are not going to be going commando on these parks, rather, trying to get a few things in each day and enjoying the experience.

These are my questions:

1. While at the various parks are there park benches along the walkways or streets that you can use or do you have to go into stores or restaurants to rest?

2. If you were to take a bus back to your resort (in our case POP more than likely) in the middle of the day for a nap/break, what kind of time would you be looking at from, say, the MK to POP on the buses....are they air conditioned?

3. As well I understand you can visit the Customer Service department and they can provide you with disability line passes...what do these entail?

Thanks, these boards are the best!

 

[peemagg]

I find that using my scooter helps greatly save my energy. You might want to think about renting one of them or a wheelchair. Anything that can help her from over doing it will be the best idea.

 

[SueM in MN]

I only have the time for a quick answer, but wanted to point you toward the disABILITIES FAQs thread, specifically post 6 which is about Guest Assistance Cards, post 3 which has a lot of helpful information and post 2 which is about renting wheelchairs and ECVs.

To answer 2 questions quickly:
Yes, the buses are air conditioned.

Most attractions are accessible through the regular queue and do not have a 'disability entrance'. Guest Assistance Cards (GACs) can provide some accommodations (discusses in post 6 of the disABILITIES FAQs thread), but the accommodation for fatigue and concern about standing in line is to use an ECV or wheelchair, along with using Fastpasses and touring plans that help you to avoid crowds.
There are many attractions that involve standing during part of the process - many load in 'batches' and you will be standing still for a few minutes while you wait for them to 'gather' one batch of guests, then move forward as that group is brought into the show or loading area. That process is repeated multiple times during the time you are in queue. How long you will stand each time depends on how long the attraction is. Fir example, Dumbo loads in batches, but because it takes about 3-4 minutes to unload guests, reload with a new batch and then he ride itself us about 90 seconds, each time you are standing completely still for one batch will be no longer than about 3-4 minutes. A show like the Tiki Birds loads one theater qt a time, so the standing time will be equal to one show (8-10 minutes). GACs don't change that and unless you bring a seat along in the form of wheelchair or ECV, she will no have one.

 

[livndisney]

1. While at the various parks are there park benches along the walkways or streets that you can use or do you have to go into stores or restaurants to rest?

Benches are few and far between, and rarely where you need them. You would be better off renting a wheelchair or ECV to have a seat when you need it. (Even consider a rollator)

2. If you were to take a bus back to your resort (in our case POP more than likely) in the middle of the day for a nap/break, what kind of time would you be looking at from, say, the MK to POP on the buses....are they air conditioned? From MK, you would need to exit the park and walk to the bus loading area. If you have just missed the bus to Pop there will be about a 20 minute wait for the next one. Then about 25 minutes back to the resort. You could easily be looking at 1 hour(or more) from the time you exit the turnstile until you are back in your room.

3. As well I understand you can visit the Customer Service department and they can provide you with disability line passes...what do these entail?

There are no disability line passes. As Sue mentioned you may want to read about Guest Assistance Cards. But, Disney's answer to mobility/stamina issues is rent a wheelchair/ecv. You will be walking miles each day, having a wheelchair/ecv will give you wife a break when she needs it.

 

[Tosie]

We have always been able to find a place to sit and rest when necessary.

If your wife gets REALLY fatigued you may want to consider a scooter or wheelchair. (We never have.)

We have never utilized the GAC - if we need to in the future we most certainly would.

Pace yourselves, stay hydrated, take breaks. We travel in August (and dh has heat issues too) so we find people watching a great way to pass the time when dh needs cool down.

Here's something to consider:

I think it's so incredibly sweet you're planning to surprise her. However, given her possible limitations can you get her involved in your park planning? Go over the maps, read some guidebooks and decide what are absolute must sees/must do's.

Have a great trip!!

 

[sbtrfly74]

Just a thought but is your wife taking either Nuvigil or Provigil? I have RRMS also and the heat intolerance and fatigue are the worst part of it for me as well. I don't have any mobility problems except for some balance issues but I've just started riding a stationary bike to get my endurance up before our trip in May.

Both Rx's are considered as an unlabeled use for MS to help with the fatigue.

 

[Tiggerish]

Hi, anotherMS'er here. Make sure she drinks lots of water. Even though I some times think MS stands for multipe searches for a bathroom, you have to stay hydrated. Also think about a brimed hat for the sun. Even though the temp may be okay that time of year, I am senstive to the sun from some of my meds.

You should at least consider an ECV. I have spent a trip hobbling from bench to bench and looking for attractions that offered an opportunity to sit for while. Then I rented an ECV and cannot express how much different and more magical my experience was.

 

[the_green_machine]

Just a thought but is your wife taking either Nuvigil or Provigil? I have RRMS also and the heat intolerance and fatigue are the worst part of it for me as well. I don't have any mobility problems except for some balance issues but I've just started riding a stationary bike to get my endurance up before our trip in May.

Both Rx's are considered as an unlabeled use for MS to help with the fatigue.

First off I want to thank everyone for your help, I dont know how I'd plan this without all of you.....

As per above, my wife is taking Rebif (but nothing for fatigue). She also has balance issues but she uses our treadmill 3 times a week (usually for 25 to 30 minutes at a moderate walking speed) coupled with 3 resistance workouts per week (involving all body parts).

She doesn't realize it but she will be in fine form when we take on the world together in 2012...Thanks again.

 

[livndisney]

Wait a minute, I just caught this is your first trip.

WDW is not level-if balance is an issue, you will want her in an ECV. Just walking from the bus to MK involves walking down a slightly steep hill and up the other side. This area is narrow and gets very crowded. Then you need to wait to get through bag check, then to the turnstiles. (All before you get into the park). The ramps to the monorail are quite steep.

Animal Kingdom has jagged paths vs smooth cement.

Epcot is just vast. Once you are actually in the park, you are still a distance from the first ride and then a good distance to the next one. The Land is at the top of a steep hill. Then there is World Showcase with is almost 2 miles around.


Having done the "bench to bench" thing with my Dad, I do not recommend touring that way.

Whatever you choose, each park has First Aid, where she can lie down for a bit and rest.

I hope you have a wonderful trip!

 

[WheeledTraveler]

First off I want to thank everyone for your help, I dont know how I'd plan this without all of you.....

As per above, my wife is taking Rebif (but nothing for fatigue). She also has balance issues but she uses our treadmill 3 times a week (usually for 25 to 30 minutes at a moderate walking speed) coupled with 3 resistance workouts per week (involving all body parts).

She doesn't realize it but she will be in fine form when we take on the world together in 2012...Thanks again.

I hate to sound negative, but do you think she would be able to manage 6-8 miles a day for multiple days in a row? And with probably relatively few chances to sit down? (It really is hard to find places to sit) I don't have MS, but have some neuro symptoms that can mimic MS and even when I could still do the level of activity your wife is doing now, there is no way I could have done the amount of walking needed for WDW and still enjoyed myself. There's no shame in using an ECV (and if she wants she can use it for longer distances and park it and walk for shorter ones). Either way, don't expect to commando tour the park.

Other suggestion I'd have is to get and bring with you a cooling vest. You hopefully won't need it, but better to have it and not need it than need it and not have it.

Along with using Fastpasses to your advantage, you might want to look at a touring program like Tour Guide Mike.

 

[Punchy]

I think she will do fine.

Here are some tricks I use when I'm there:

- The first few days I walk until I feel I can't anymore. Then I rent an ECV. They're SO MUCH FUN!
- I wear a wide hat to protect from the sun.
- I carry a water spritzer w/ ice in it. You won't need this in Jan., though.
- I try to time my flights on off days for the Rebif. I find the flu-symptoms increase for me if I inject and fly.
- I take Advil preventatively in the mornings.

Also, you will have to get a letter from her doctor stating that it is necesary to bring the Rebif and needles onboard in her carry-on luggage. When I flew with it, security just waved it through, but you never know how it will be handled. You also will need to look up acceptable methods to keep it cool.

You guys are going to have a great time!

 

[the_green_machine]

I hate to sound negative, but do you think she would be able to manage 6-8 miles a day for multiple days in a row? And with probably relatively few chances to sit down? (It really is hard to find places to sit) I don't have MS, but have some neuro symptoms that can mimic MS and even when I could still do the level of activity your wife is doing now, there is no way I could have done the amount of walking needed for WDW and still enjoyed myself. There's no shame in using an ECV (and if she wants she can use it for longer distances and park it and walk for shorter ones). Either way, don't expect to commando tour the park.

Other suggestion I'd have is to get and bring with you a cooling vest. You hopefully won't need it, but better to have it and not need it than need it and not have it.

Along with using Fastpasses to your advantage, you might want to look at a touring program like Tour Guide Mike.

No, you dont sound neg. at all, this is why I'm using these boards, to get a wide variety of opinions that will, hopefully, make this a great experience given our limitations.

at the end of the day, we will be looking at 4-5 attractions a day with 3 days in the MK (with multiple breaks/fast passes and mid afternoon returns to our resort for naps). MK will be on days 1, 4 and 6 with DHS on day 2 and Epcot and AK used on days 3 and 5 as shorter relaxing days (we dont plan to spend much time at Epcot of AK this time around).

We will be returning in 2013 with friends of ours (they have 2 small children) so we will use this trip as a test to see what our limitations are.

 

[KPeveler]

No, you dont sound neg. at all, this is why I'm using these boards, to get a wide variety of opinions that will, hopefully, make this a great experience given our limitations.

at the end of the day, we will be looking at 4-5 attractions a day with 3 days in the MK (with multiple breaks/fast passes and mid afternoon returns to our resort for naps). MK will be on days 1, 4 and 6 with DHS on day 2 and Epcot and AK used on days 3 and 5 as shorter relaxing days (we dont plan to spend much time at Epcot of AK this time around).

We will be returning in 2013 with friends of ours (they have 2 small children) so we will use this trip as a test to see what our limitations are.

If you plan on doing even 3 attractions in Epcot, plan on walking at least 5-6 miles, and that is without going into World Showcase at all. From the bus at the front entrance to Soarin and back to the bus again (just 1 attraction) is nearly 2 miles all by itself. This is not including the time you will spend standing in line (if you do not do FP for Soarin, that will be about 60 minutes minimum). If you get a FP, you will have to walk up the very steep hill twice. And down it.

From the bus into MK, through bag check, through the turn stiles, and down main street, get a hot dog, then back out, you are again looking at nearly 2 miles. And you did not even hit an attraction yet.

I am glad you are planning on limiting the number of attractions you are going to do in WDW, but you should know that, in general, that does NOT limit the distances walked! You will STILL walk at least 6 miles a day! And with frequent quests to find a bench (there are not many) and a trip BACK out of the park each day, then you will be walking even more.

I am going to definitely recommend an ECV for your wife. I think she is going to be exhausted after just a few hours, and those of us with neuro issues just dont recharge the way others do.

 

[Tiggerish]

I do Rebif also. The little travel bag with the cold pack that I got from the drug company worked well for transporting it through the airport. Going through security I just put the bag on the top of the stuff in my bin and mentioned to the security person that it contains needles. Never had any problem.

If you are staying at a value resort you will not have a frig to keep her meds in but when you make your reservations, talk to special services (or have your travel agent do it) and get a medical needs frig. It will be delivered to your room for free (instead of a $10 a day charge).

Only you and she will know whether to walk it or get the ECV but if you do not start with one, take the number for Apple Scooters or Walker or somebody with you. Apple was able to get one to my friend the afternoon of the day she called when her hubby conceded he did in fact need it and saved their trip.

 

[cove61]

I too have MS. but cant offer a lot of advice as this will be my first ever trip, we going in ocotber so i can say more after if i survive

But i would say after going round the much smaller park in Paris i am going to hire an ECV. i wasn't going to but i have decided that to enjoy my holiday and not be totally shattered then it is a must (just hoping i dont run too many people over ( well maybe just the rude ones )

anyway i hope you both have a great trip

 

[starshine514]

My DH has MS and is also on Rebif. We did 'the world' last January and we rented a scooter for him from Randy's Mobility. Everybody is different and DH's MS is much worse now than it was 14 years ago when I met him (he's been diagnosed for 22 years). However, I couldn't image doing it without an ECV. Even with it, he needed naps in the afternoon and even stayed behind one morning (after one shot night) while we went to the park without him. He was just too fatigued - and we weren't commando-style touring, or closing the parks either. We were actually taking it reasonably slow.

At Epcot (day 1 at WDW), we got FPs to Soarin' and he decided to leave the ECV behind and get into the line without it; he came back stumbling around. The walk was too much for him.

About 10 years ago, his MS was in a remitting stage and he did Sea World (San Diego) without anything other than sitting when needed. So, it really does depend on her and what her MS is doing at the time. She may not need it, but be sure to have some ECV rental #'s handy, just in case. And, don't let her push herself too hard. If you see she's struggling, make sure she gets one.

 

[sbtrfly74]

First off I want to thank everyone for your help, I dont know how I'd plan this without all of you.....

As per above, my wife is taking Rebif (but nothing for fatigue). She also has balance issues but she uses our treadmill 3 times a week (usually for 25 to 30 minutes at a moderate walking speed) coupled with 3 resistance workouts per week (involving all body parts).

She doesn't realize it but she will be in fine form when we take on the world together in 2012...Thanks again.

That's awesome! As a person with MS, i wouldn't suggest slowing down... its the exercise that keeps you going and the strength to do it. I just finished nursing school after everyone around me told me I shouldn't/couldn't do it, but I feel so much better the more active I am than between semesters doing nothing. I would look into provigil for fatigue, technically its for narcolepsy but can help a lot with chronic fatigue. Hope you have a magical vacation

 

[the_green_machine]

I too have MS. but cant offer a lot of advice as this will be my first ever trip, we going in ocotber so i can say more after if i survive

But i would say after going round the much smaller park in Paris i am going to hire an ECV. i wasn't going to but i have decided that to enjoy my holiday and not be totally shattered then it is a must (just hoping i dont run too many people over ( well maybe just the rude ones )

anyway i hope you both have a great trip

I look forward to hearing all about it when you return, try to keep me in mind. I was suprised at how few resourses there are out there regarding this issue. Probably a good idea for a web site....

As far as the ECV is concerned, although initially I didnt think (or hope) it would be necessary, the more I think about it and read the opinions and advice from people on this board it is definitley something that we will have to have a long talk about once she finds out that she is going.

Ultimately its about her having the time of her life and if that means using an ECV then so be it. I have no idea about the scope of the parks and its probably enough to kick my rear .

I assume you can rent directly from the park? and if so are there areas that you can park the unit while on a ride or in a line? Do you have to book these in advance or is it something that you can book the day of if it is needed?

 

[KPeveler]

I look forward to hearing all about it when you return, try to keep me in mind. I was suprised at how few resourses there are out there regarding this issue. Probably a good idea for a web site....

As far as the ECV is concerned, although initially I didnt think (or hope) it would be necessary, the more I think about it and read the opinions and advice from people on this board it is definitley something that we will have to have a long talk about once she finds out that she is going.

Ultimately its about her having the time of her life and if that means using an ECV then so be it. I have no idea about the scope of the parks and its probably enough to kick my rear .

I assume you can rent directly from the park? and if so are there areas that you can park the unit while on a ride or in a line? Do you have to book these in advance or is it something that you can book the day of if it is needed?

Yes, you can rent at the parks. The ECV cannot be taken out of the park (and it can be a bit of a hike to get to the rental counter), so if you go back to the room for an afternoon break, you will have to turn it in. You do not have to pay more than once a day but there is no guarantee that there will be a scooter available later in the day.

Park rental scooters are first-come first-served. Off site rental places can be reserved well in advance.

Park rental scooters are large and bulky 4 wheel things. Off site rentals are smaller, move maneuverable, and can be more comfortable (adjustable).

All rental scooters can be brought on park buses, so if you rent off-site that will not be a problem at all.

It costs $70 a day to rent in the parks (you get $20 back when you turn in the scooter). The average cost of off-site rentals is half of that.

Yes, you can park scooters outside of lines and walk in, but almost all lines are mainstreamed, so you will go in the regular line, even if you keep the scooter. I suggest keeping it whenever possible, because there ARE attraction that you cannot go in with the scooter. Many Fantasyland attractions require that you park the scooter. POTC requires a transfer to a park wheelchair. If you want to do the first part of the HM, then you have to park the scooter and walk in. the Peoplemover is not accessible either.

I suggest parking the scooter and walking in for shows. Wheelchair space is very limited and almost always in hte back row. If you walk in for the shows (you can generally get a good idea of how long it will be, and there is not usually any real distance to walk), this will let you sit anywhere you want.

Also, there are some places she may not be able to or will not be comfortable sitting for any length of time. For example, the Lion King show (which is amazing!) is only backless benches. I too have balance problems, and I cannot sit up for long without there being a back on my seat!

I suggesting going online and purchasing Passporter's Open Mouse. This is an amazing guide to all things WDW. I do this (a lot!) but even I still reference this guide! It lists every resort, ride, show, restaurant, and lists what to expect on each thing. It was the greatest purchase I have made in terms of Disney touring!

 

[S'sMom]

Hey guys,

I am, secretly, planning a trip for my wife and I in Jan of 2012.

My wife has Relapse and Remitting MS and I have a few questions about the park. and would love it if someone with some experience in the matter could give me some advice.

I've done my best to try and stack the deck in our favor in as much as this trip is concerned, i.e. I'm planning on booking in mid Jan. to take advantage of the low crowds, less time waiting in lines (also researched the Fast Pass and how we can use this to our advantage) and also Jan. should afford us some more reasonable temperatures.

My wife's biggest issues are fatuigue and, at times, lack of stamina in regards to walking or standing for long periods of time. Heat is also an issue but with an average high of 22 c (we're canadian ) we should be able to manage (we live in Manitoba so at that time of year we should be sitting at about -40 with the wind chill so we wont be complaining much for that week ).

I also must preface these questions with, I am somewhat aware of the size of DW and we are not going to be going commando on these parks, rather, trying to get a few things in each day and enjoying the experience.

These are my questions:

1. While at the various parks are there park benches along the walkways or streets that you can use or do you have to go into stores or restaurants to rest?

2. If you were to take a bus back to your resort (in our case POP more than likely) in the middle of the day for a nap/break, what kind of time would you be looking at from, say, the MK to POP on the buses....are they air conditioned?

3. As well I understand you can visit the Customer Service department and they can provide you with disability line passes...what do these entail?

Thanks, these boards are the best!

My dh has Relapsing Remitting MS as well. He mostly has the fatigue and heat issue. He takes the weekly Avonex shots

We go to the World quite frequently. When he is not feeling well, we take breaks. He doesn't want to miss anything, but he also knows his limitations. Besides, we have two young kids so it has always worked out. If you have any additional questions, just let me know and I will do my best to answer from his perspective.

To answer your questions, yes the buses are air-conditioned goodvibes). As far as the disability line passes, I had not heard of those. So I wont be much help there.

I hope this and the other suggestions help.