WDW with MS

[sb682]

My husband and I are looking into taking our 3-year-old to WDW in late February/early March. DH was diagnosed with relapse remitting MS in 2009 and is on medication for it and Ritalin for fatigue. He does really well most days but gets really fatigued by mid-afternoon if he doesn't get enough sleep or tries to do too much. He sometimes he keeps going even when he shouldn't, and then he's out of commission for the rest of the day. His fatigue also kicks in with too much stress, and he was definitely not a fan of waiting in lines or dealing with crowds at WDW before his diagnosis. I just have some questions for those of you who have MS, or family members with it:

1) He's unsure about getting a GAC. I'm used to the process (went to WDW with my autistic younger brother many times) and it doesn't faze me to use it, but he is a little embarrassed because he's young and doesn't look disabled.

2) Similar principle with using an ECV. He does not want to get one, but I'm afraid he'll wear himself out in a few hours if we don't get one. How hard is it to rent one from an outside source once you're there? Is it a must-have?

3) We will be taking midday breaks so DS can take a solid nap (he still needs one), which should leave time for all of us to at least lay down in the room. I'm also planning on bringing water bottles and fans with us and he has a Chilly Pad if necessary. Any other tips?

 

[redrosesix]

My husband and I are looking into taking our 3-year-old to WDW in late February/early March. DH was diagnosed with relapse remitting MS in 2009 and is on medication for it and Ritalin for fatigue. He does really well most days but gets really fatigued by mid-afternoon if he doesn't get enough sleep or tries to do too much. He sometimes he keeps going even when he shouldn't, and then he's out of commission for the rest of the day. His fatigue also kicks in with too much stress, and he was definitely not a fan of waiting in lines or dealing with crowds at WDW before his diagnosis. I just have some questions for those of you who have MS, or family members with it:

1) He's unsure about getting a GAC. I'm used to the process (went to WDW with my autistic younger brother many times) and it doesn't faze me to use it, but he is a little embarrassed because he's young and doesn't look disabled.

2) Similar principle with using an ECV. He does not want to get one, but I'm afraid he'll wear himself out in a few hours if we don't get one. How hard is it to rent one from an outside source once you're there? Is it a must-have?

3) We will be taking midday breaks so DS can take a solid nap (he still needs one), which should leave time for all of us to at least lay down in the room. I'm also planning on bringing water bottles and fans with us and he has a Chilly Pad if necessary. Any other tips?

My dad had MS for 42 years and while a lot (fortunately) has changed, this sounds like him when he was younger. It took him a long time to be able to blame his MS instead of himself for things he couldn't do. And he was pretty sure he had MS for several years before he was diagnosed, which explained a lot of how tired he got while in college studying for exams etc -- might explain why your hubby couldn't do the long waits before.

While your DH might feel he doesn't need a GAC, his MS might -- it's like taking an umbrella on a cloudy day. It might rain, it might not -- but if it does rain and you didn't take it you'll get soaked. You may only use the GAC one time when he's too tired to wait in line for your kid to do his favourite ride just one more time, but it would be worth it.

I can't advise you on scooter rental, but with my dad I always took advantage of him offering to carry things for me when he was using his or his electric wheelchair and let him carry all my stuff (and later my DD's stuff) -- he loved that he could lighten my load a bit. There aren't many great things about using a wheelchair or scooter if you don't want to use one, but this he liked.

My dad didn't mind the heat as much as being in the sun -- even the sun shining in his eyes would tire him out. It's why he gave up golfing, even when he could still physically do it. So rock the sunglasses or a ball cap and try to plan things like meals and rest stops in shaded areas if this is an issue for your DH. For example, don't eat your hotdogs out on the terrace by Casey's, think carefully about where you wait for any parades. My dad had an impressive collection of baseball caps for this reason.

 

[asoko]

My husband and I are looking into taking our 3-year-old to WDW in late February/early March. DH was diagnosed with relapse remitting MS in 2009 and is on medication for it and Ritalin for fatigue. He does really well most days but gets really fatigued by mid-afternoon if he doesn't get enough sleep or tries to do too much. He sometimes he keeps going even when he shouldn't, and then he's out of commission for the rest of the day. His fatigue also kicks in with too much stress, and he was definitely not a fan of waiting in lines or dealing with crowds at WDW before his diagnosis. I just have some questions for those of you who have MS, or family members with it:

1) He's unsure about getting a GAC. I'm used to the process (went to WDW with my autistic younger brother many times) and it doesn't faze me to use it, but he is a little embarrassed because he's young and doesn't look disabled.

2) Similar principle with using an ECV. He does not want to get one, but I'm afraid he'll wear himself out in a few hours if we don't get one. How hard is it to rent one from an outside source once you're there? Is it a must-have?

3) We will be taking midday breaks so DS can take a solid nap (he still needs one), which should leave time for all of us to at least lay down in the room. I'm also planning on bringing water bottles and fans with us and he has a Chilly Pad if necessary. Any other tips?

I have MS diagnosed in 2010 at age 41. No one who looks at me would never know I have issues (unless i fell in front of them LOL)

I can't say how helpful the GAC card is. Some CM wouldn't let me use the handicap line without it and I was in an ECV. I had to have the card with the correct stamp. I thought I could make it through the line to the rides, but by the time i walked through the line I was exhausted.

I've rented ECV from All Star Scooters (a division of Walker Mobility) before I arrived. I'm sure if you called and they had one available they would deliver it after you arrive. You can call one of the companies and ask them.

THE ECV is a MUST have!!! I cannot stress that enough. Disney is the definition of doing too much!! Remember it is MILES that you have to walk, not one mile, but many miles. My one wish after i was diagnosed was to be able to walk disney like i used too, but getting the ECV was the absolute smartest thing I could have done.

Sounds like you have the bases covered with the ECV, GAC and naps. I take a mister fan I got at walmart. It seems like you are going at a good time of the year and extreme heat would not be much of an issue.

I would also ask for a room close to bus stops and on the first floor. Remind you husband that it is not just the parks you have to walk, you have to get back to the room. make sure that he eats right and takes any vitamins he would need to keep his energy.

He needs to do what he needs to make his vacation enjoyable and ignore anything anybody else may think or say. There are many times I would like to look at someone and say I'll trade you. I'll give you my handicap tag and you give me your ability to walk from the 10th parking spot.

 

[Tiggerish]

I was dx'ed with progressive-relapsing MS in 2007 and have been to WDW several time since. All these trips were significantly better than the ones before the dx. Why, because I rented an ECV. Instead of dragging myself from bench to bench and always looking for somewhere to sit down, I could actually keep up with my family.

An ECV is not perfect, the view is of everyones back sides, people walk in front of you and into you because it appears to come with a cloak of invisibility. Also getting onto a bus is a learned skills and sometimes you have to wait for another bus. At the shows you are always in the very back or the very front.

However, an ECV is still the best thing to deal with the fatigue, the balance and gait issues. My family also makes me into the pack mule and I carry all the water bottles, rain gear, sweat shirts, etc.

I have been in July, August, November and January. The heat was not a problem because I drank and drank and drank water, wore a hat and used sunglasses. I agree the strong sunlight is tiring on the eyes and contributes to the fatigue. That is why a hat with a brim is a must.

Have your husband ask himself, who do I care the most about, my wife and son or a bunch of strangers I will never see again? He knows the answer and will make the sacrifice of a tiny bit of his dignity to make your trip better.

And I do understand the not wanting to "look disabled" or hating that people think I am cheating the system. MS is not fun and it forces you to make all kinds of changes to how a person operates.

 

[peemagg]

I don't have MS, but I deal with fatigue issues and have used a scooter since age 38. I didn't until recently, have anything that would suggest an issue until I walked. Then you could tell there was some sort of problem.

I would rent from an outside company right at the start of your trip. Maybe set up a deal with your husband that he can try the start of the day without it, then when you go back later, he can see if he needs it. My guess is one morning of walking, and one afternoon and evening of riding, the next day he will use the scooter the full day.

When renting from outside companies, keep in mind that there are only 5 companies that can drop off and leave a scooter at the resort for you and that you can leave it at the resort for them to pick up. All others you have to arrange face to face meetings with them. I have rented from Apple Scooters (one of the preferred providers) a couple of times with no problems, and would do it again if I needed to. If you look at the FAQ's section at the start of the forum there is a list in there of preferred provides and their numbers. There is also numbers for the non-preffered providers that get good reviews.

 

[luvmickey5374]

I'm 39 and was diagnosed 9 years ago with relapse/remitting MS. I know how it feels to not be able to do some things that you used to. I also know what it feels like when people try to make me feel I shoudl use it as an excuse. My DH is guilty of this all the time. I know that its out of love and concern so thats ok=) I just wanted to add my two cents that you should let your DH know that you are there to support him in any way, which obviously you are=) And that he should feel comfortable in whatever he needs to do. The one thing about MS is that it effects everyone differently. I hope you all have a fantastic trip and safe journey

 

[lanejudy]

Try presenting it this way...the GAC and ECV will greatly help you and DS to enjoy the trip. Why is it for you and DS? Because if/when DH gets too fatiqued and needs to go spend the rest of the day at the resort, you and DS will miss out on sharing the vacation magic with him.

Good luck and enjoy your vacation!

 

[sb682]

Thanks for all the great advice. I have talked him into getting a GAC "just in case", but I brought up the ECV again and he flat out refuses. I won't make him do anything he doesn't want to do, but I think I will keep the contact info for some of the scooter companies handy if he changes his mind.

 

[cove61]

Hi there.

I was dx with relapsing remitting ms about ten years ago. At home I can manage fine. But during my first trip to Florida I did hire a scooter. I would use it some mornings, or afternoons. I didn't want to spend my time crashed in my hotel room when I could be spending it with my children. Don't think I would have enjoyed the trip as much as I did without it.
We returning in October and again I will look at getting a scooter. I don't have to use it every day, mainlly I use it for half the day, walk the rest as I feel I should try to keep up my fitness (not always easy) but I would say I found the distances huge, and standing in long lines very difficult.
End of day he wants to enjoy his holiday, can he do this walking ( I think even the fittest person would find this hard going) yes it hard to admitt you need a bit of support, but once you get passed it find what suits your family best he will find he enjoys the trip far more. I mean would say most average fitness level adult would struggle with the heat and distances involved let alone someone with fatigue issue.
I loved my holiday and can't wait to come back and I for one will be hiring a scooter, if only so I can carry water bottles and bags for my clan.

Hope you have a great time, I am sure your 3year old will love it

Jen

 

[LilyWDW]

Thanks for all the great advice. I have talked him into getting a GAC "just in case", but I brought up the ECV again and he flat out refuses. I won't make him do anything he doesn't want to do, but I think I will keep the contact info for some of the scooter companies handy if he changes his mind.

Disney's suggestion for mobility and stamina issues is to get a wheelchair or ECV. A GAC doesn't shorten waits and there is often no where to sit while waiting. As such, I am not too sure how good a GAC would be. Plus, most of what will exhaust him will be going between attractions (which a GAC doesn't help with).

 

[chloelovesdisney]

I've traveled to WDW with an extended relative that has MS and she would be wiped out after a day walking all around WDW. She uses a wheelchair there, and we all take turns pushing her. Her eyes have been affected by the MS, and so driving an ECV is really not safe for anyone else walking around.

 

[cmesq61]

I have MS. And I have a life to lead. MS effects my life just like my height and complexion effect my life. I need really strong SPF cause I'm really fair and I need people to reach things for me cause I am under-tall.

At home, I use a combo of walker, WC or scooter depending on how I am.

At WDW (and other vacations) I use an ECV so that my challenges don't negatively effect my loved ones. And so I am not busy feeling miserable instead of having a blast. In addition, if i let the fatigue and heat exposure THAT EVERY SINGLE WDW VISITOR EXPERIENCES TO A DEGREE cause me to have a relapse or otherwise worsen my MS, then my family is in deep doo doo as I am a single parent and the sole bread winnder.

As to the GAC, I second the earlier comments--not sure what that's going to do as the lines are mostly mainstreamed and you don't "jump" the line with a GAC. A GAC can allow you to wait out of the sun, though. For me, I like to mainstream as much as possible, so I use a special sun umbrella. Forget the manufacturer, but you'll find it at LiveStrong, and MS support site. In addition to my big hat--which my kids still make fun of me for--I love my umbrella.

Hope you have a great trip.

 

[LilyWDW]

I have MS. And I have a life to lead. MS effects my life just like my height and complexion effect my life. I need really strong SPF cause I'm really fair and I need people to reach things for me cause I am under-tall.

At home, I use a combo of walker, WC or scooter depending on how I am.

At WDW (and other vacations) I use an ECV so that my challenges don't negatively effect my loved ones. And so I am not busy feeling miserable instead of having a blast. In addition, if i let the fatigue and heat exposure THAT EVERY SINGLE WDW VISITOR EXPERIENCES TO A DEGREE cause me to have a relapse or otherwise worsen my MS, then my family is in deep doo doo as I am a single parent and the sole bread winnder.

As to the GAC, I second the earlier comments--not sure what that's going to do as the lines are mostly mainstreamed and you don't "jump" the line with a GAC. A GAC can allow you to wait out of the sun, though. For me, I like to mainstream as much as possible, so I use a special sun umbrella. Forget the manufacturer, but you'll find it at LiveStrong, and MS support site. In addition to my big hat--which my kids still make fun of me for--I love my umbrella.

Hope you have a great trip.

I did not know there was a sun exposure issue with MS, so glad to learn something. However, most lines are covered and most sun/heat exposure would happen going between rides as well.

 

[sb682]

I guess I am a little confused about the GAC. I haven't been to Disney in 6 years and haven't been with anyone with special needs in about 10 years. I was thinking things were still very similar to the way they were back when it was a "pass", but I guess it's not the case anymore and I am trying to figure out how to make this trip as easy on my husband as possible. Is a GAC really not very useful in this situation? Should we bother getting one? I read the FAQ before posting here, but it's still not clear to me what accommodations can be made for someone who cannot physically stand in line for extended periods. Do ECVs go in lines now, as it seems like they got rid of disabled entrances/going through the exit? We are planning on using FP whenever possible to minimize waiting. Also, has anyone booked with a third party scooter company for the same or next day; is it possible or do you need to do it further in advance? I really appreciate all the input; keep it coming!

 

[LilyWDW]

I guess I am a little confused about the GAC. I haven't been to Disney in 6 years and haven't been with anyone with special needs in about 10 years. I was thinking things were still very similar to the way they were back when it was a "pass", but I guess it's not the case anymore and I am trying to figure out how to make this trip as easy on my husband as possible. Is a GAC really not very useful in this situation? Should we bother getting one? I read the FAQ before posting here, but it's still not clear to me what accommodations can be made for someone who cannot physically stand in line for extended periods. Do ECVs go in lines now, as it seems like they got rid of disabled entrances/going through the exit? We are planning on using FP whenever possible to minimize waiting. Also, has anyone booked with a third party scooter company for the same or next day; is it possible or do you need to do it further in advance? I really appreciate all the input; keep it coming!

Most lines are now mainstreamed. Some attractions (older ones) still have alternate entrances, but they are getting fewer and fewer due to renovations. Disney suggests that you use an ECV or wheelchair if you have mobility and stamina issues. Standing in lines for rides is only a super small amount of your time in the parks. The thought is, if you can't stand in line for a long time, how do you handle everything else?

 

[sb682]

OK, I went back and re-read the FAQ more carefully because I was clearly missing something before. I hope I can talk DH into getting an ECV. I understand where he's coming from and I get that he might feel like he's "giving up" in a way by using one. But if he doesn't, it might mean he's stuck in the room with a pseudo-exacerbation from the fatigue while DS and I try to have fun knowing Daddy isn't feeling good (well, not like a 3-year-old would even think much about that, especially at DW).

 

[Piper]

I understand where he is coming from. I fought using mobility aids for several years after my doctor told me I needed them. Then when I finally "gave in" I realized that I had only been hurting myself by refusing to use them. They truly made life more enjoyable and I could do so much more!!

He is going to a place where no one knows him and he shouldn't care about "what others think." By refusing to use an ECV, he is not only impacting HIS experience but the rest of the family, too!!!

 

[LilyWDW]

OK, I went back and re-read the FAQ more carefully because I was clearly missing something before. I hope I can talk DH into getting an ECV. I understand where he's coming from and I get that he might feel like he's "giving up" in a way by using one. But if he doesn't, it might mean he's stuck in the room with a pseudo-exacerbation from the fatigue while DS and I try to have fun knowing Daddy isn't feeling good (well, not like a 3-year-old would even think much about that, especially at DW).

I really would worry about how well he can handle a day at Disney without an ECV. Most people walk around 8+ miles a DAY at the parks. Ask him how he would feel about going for a 4+ mile walk... and then have to walk back. That should give him a better concept as to how much activity is done at a normal park day. Ask him how he would feel if he ended up stuck back at the hotel and missed out on his child's trip. Sometimes you have to be a bit tough about pointing this stuff out to get past the automatic "no" reaction.

 

[geek+nerd]

It might help if he thinks about using a mobility aid like he would use a pair of glasses. If you need glasses to see, no one would ever suggest trying to go without them; he needs an ECV to get around the park without being exhausted and miserable (and therefore making you and your son miserable).

Have you thought about showing him this thread and people's responses?

Good luck and let us know what ends up happening!

 

[memakwed]

I keep a backpack that my husband carries- so I don't fatigue. In the back pack we keep waters, and those icepacks that you just crush and get cold for about 20 minutes. I can not say how much of a life saver that was last trip. I never imagined I would need it but over by test track it was just too sunny and I needed to sit and sit quick. Got some water in me, put a cold pack down my shirt, and sat in a slim amount of shade on a bench. Make sure you have ice packs- they are cheap at Walmart.

We also plan Table service meals. It gives me a break from the sun and heat. I sit and rest in AC while having a meal. It helps a lot and we all need to eat so noone makes me feel like it's a problem or we're taking too long.

I don't use a wheelchair or ECV. My child has health issues and I am the leader of our group so 2 wheelchairs wouldn't fly and if I'm not leading we wouldn't go anywhere. I will say if my child can walk this trip I will cave in and get a wheelchair. the cost of the EVC makes me feel guilty too. Well Wheelchiar too but the lesser of the two evils I'll accept. I know the time is coming to use something and your husband will know when his time is too.Until then just pace yourselves and be prepared and it will be ok.

Be flexible. Napping and resting during your DS's nap will help so much. Be prepared to maybe not go back out if your DH has had to much. Once the fatigue hits it hits hard. Maybe have a back up resort plan for times when he doens't feel much like going back to a park

Lastly, I would suggest if able extend your trip and do less in your day. This trip we will be going for 14 nights. IT allows me to enjoy everything while doing it in smaller doses.

I hope those ideas and tips help