Disney with MS /First Time ECV User

[scooby9932]

Hi! Thanks for this thread...I was going to post almost the same exact questions today. I don't have MS but I do have Fibromyalgia and arthritis. Walking for short distances is fine but walking more than 20 mins much less all day long and trying to stand in lines will have me bed ridden for the rest of the week so I am going to be renting an EVC as well. I am a bit nervous about it but after reading these posts I do feel better. I do use the EVC's at Walmart and delighted to know the rentals are easier to navigate. I am a pro at the Wally world ones...lol. My biggest concern is my weight. Not being able to get exercise like I used to I have put on a good bit. I have seen some nasty youtube videos of people filming heavy set people using scooters and I am so afraid of running into that sort of problem. And also other forums were people say such nasty things. At Walmart people are almost always so nice to me. They help me get things off of shelves and such. Not sure how it would be at a big place like WDW. But I won't let the rudeness of others ruin my vaca!
Also I would have never thought of the idea of using a shower cap over the scooter...great idea!
Thanks again for all the tips and for the OP having posted the thread!

I think you'll be very glad you got a scooter. The amount of walking required at WDW not even counting all the standing is very hard on your joints & trigger points.

I wouldn't over worry about the rude people saying or doing things (such as the video taping). Just enjoy yourself and your family and ignore all but the good around you. There really are more polite, kind people around. It's just the ugly, small minded ones stand out in memory So you hear those stories more often. Don't give them that power over you & your vacation!

Go, utilize your mad ECV skills, and soak up the joy that is Disney World! You'll have a great vacation!

 

[scooby9932]

Thank you for your response! I am traveling with my mom and MIL so I am hoping I will get some good bus drivers who can help me. I am getting a Solu-Medrol treatment literally 3 days before we go on this trip. Do you have any experience with this? I have no idea what to expect. I got it into my head to get a cane and walk since my current symptoms are starting to improve somewhat but then my parents talked me back into the scooter. I was trying not to be selfish, thinking if I may not need the scooter not to get it, and now I am thinking, well maybe I am being selfish because I don't want my party to be worrying about me the whole trip if I am walking. It doesn't help I got diagnosed with MS just over a week ago so it has been a roller coaster of emotion.

I understand the roller coaster you're currently on. Just know, it does get easier over time. Maybe find an online support group for other MS patients. There is one community that's very helpful with all types of "invisible diseases" - here is a link to her FB page: https://m.facebook.com/bydls?id=19266644728&_rdr

As for the SoluMedrol treatments, everyone is affected differently. Everyone's treatment is tailored to their needs, some have pulse dose therapy others use oral therapy. Each has its pluses & minuses. But there are some common side effects:

Maintain adequate nutritional intake; consult prescriber for possibility of special dietary instructions. If you have diabetes, monitor serum glucose closely and notify prescriber of any changes; this medication can alter glycemic response. Avoid alcohol. Inform prescriber if you are experiencing unusual stress; dosage may need to be adjusted. You will be susceptible to infection (avoid crowds and and exposure to infection). You may experience insomnia or nervousness; use caution when driving or engaging in tasks requiring alertness until response to drug is known. Report increased pain, swelling, or redness in area being treated; excessive or sudden weight gain; swelling of extremities; respiratory difficulty; muscle pain or weakness; change in menstrual pattern; vision changes; signs of hyperglycemia; signs of infection (eg, fever, chills, mouth sores, perianal itching, ******l discharge); blackened stool; other persistent side effects; or worsening of condition. Pregnancy/breast-feeding precautions: Inform prescriber if you are or intend to become pregnant. Consult prescriber if breast-feeding.
Oral: Take as directed, with food or milk. Take once-a-day dose in the morning. Do not take more than prescribed or discontinue without consulting prescriber.
Intra-articular: Refrain from excessive use of joint following therapy, even if pain is gone.

 

[scojos]

Hi! Thanks for this thread...I was going to post almost the same exact questions today. I don't have MS but I do have Fibromyalgia and arthritis. Walking for short distances is fine but walking more than 20 mins much less all day long and trying to stand in lines will have me bed ridden for the rest of the week so I am going to be renting an EVC as well. I am a bit nervous about it but after reading these posts I do feel better. I do use the EVC's at Walmart and delighted to know the rentals are easier to navigate. I am a pro at the Wally world ones...lol. My biggest concern is my weight. Not being able to get exercise like I used to I have put on a good bit. I have seen some nasty youtube videos of people filming heavy set people using scooters and I am so afraid of running into that sort of problem. And also other forums were people say such nasty things. At Walmart people are almost always so nice to me. They help me get things off of shelves and such. Not sure how it would be at a big place like WDW. But I won't let the rudeness of others ruin my vaca!
Also I would have never thought of the idea of using a shower cap over the scooter...great idea!
Thanks again for all the tips and for the OP having posted the thread!

i have OA and fm too and am planning my first trip since diagnosis (started by a car crash in 2011) im "borrowing" an electric chair rather than a scooter and was also concerned about the lack of key so understand the OP. I have planned our 14 day holiday so the first day (after a 9hr flight) is quiet and have organised TS meals to allow calm time at key times... kids are older and will want to spend more time at water parks this holiday (i hate them lol) so im taking my kindle and will relax while they play....

i think with planning and a comprehensive family our normal holiday will still be do able, i ll be the fp "runner" while they ride the violent rides i cant do, and have already spoke to gp about appropriate meds to take... we have a fb group for fm sufferers im ur on fb please feel free to join xx

http://www.facebook.com/groups/158718084277829/164277450388559/?notif_t=group_activity

 

[KPeveler]

i have OA and fm too and am planning my first trip since diagnosis (started by a car crash in 2011) im "borrowing" an electric chair rather than a scooter and was also concerned about the lack of key so understand the OP. I have planned our 14 day holiday so the first day (after a 9hr flight) is quiet and have organised TS meals to allow calm time at key times... kids are older and will want to spend more time at water parks this holiday (i hate them lol) so im taking my kindle and will relax while they play....

i think with planning and a comprehensive family our normal holiday will still be do able, i ll be the fp "runner" while they ride the violent rides i cant do, and have already spoke to gp about appropriate meds to take... we have a fb group for fm sufferers im ur on fb please feel free to join xx

http://www.facebook.com/groups/158718084277829/164277450388559/?notif_t=group_activity

Have you use a power chair before? Eats more difficult than a scooter. What type a power chair are you borrowing? Will it have tied down? Do you know how to adjust it speed? Power chairs are a lot more complicated than scooters, so you want to be prepared when you get there for how to use it in the crowded parks.

Powerchairs are usually built or programmed for their users so it may be very different than a power chair you used before. I'm not saying not to use it, just that it may be more complicated, so you want to plan ahead.

 

[Tony NY]

Have you use a power chair before? Eats more difficult than a scooter. What type a power chair are you borrowing? Will it have tied down? Do you know how to adjust it speed? Power chairs are a lot more complicated than scooters, so you want to be prepared when you get there for how to use it in the crowded parks.

Powerchairs are usually built or programmed for their users so it may be very different than a power chair you used before. I'm not saying not to use it, just that it may be more complicated, so you want to plan ahead.

I was going to seguest this to you power chair is a lot easer then a scoter on a bus this just my oppion. scotter are great it give u more space to put things on ..

I hope you have good days in disney I know what a pain it can be to be week in the legs ..

 

[enzati]

I was very recently diagnosed with MS after my first bout with flare ups (numbness, tingling, vision loss, severe vertigo) and am doing IV steroids to try and make it better. We have a trip planned for April 23rd - doc said it shouldnt be a problem except the staying cool part and being more fatigued than normal. I have three young children that will want to see a lot and I don't want to dissapoint them. I'd love to get any trip reports, ideas, tips/tricks, etc, from people who have gone. We are no stranger to Disney so I know it's a bigggggg place! But for me it truly is the most magical place on earth, being able to go with my family means everything to me, and I'm determined not to ruin it!

Thanks in advance for your thoughts!

Jaime

 

[Mama Who]

I was very recently diagnosed with MS after my first bout with flare ups (numbness, tingling, vision loss, severe vertigo) and am doing IV steroids to try and make it better. We have a trip planned for April 23rd - doc said it shouldnt be a problem except the staying cool part and being more fatigued than normal. I have three young children that will want to see a lot and I don't want to dissapoint them. I'd love to get any trip reports, ideas, tips/tricks, etc, from people who have gone. We are no stranger to Disney so I know it's a bigggggg place! But for me it truly is the most magical place on earth, being able to go with my family means everything to me, and I'm determined not to ruin it!

Thanks in advance for your thoughts!

Jaime

Here's the thing I learned from pushing myself to "not ruin it" for my family: that's what ruins it.

"I need to go take a break" is much more palatable to my son than "mama just had a panic attack in the middle of Main Street." We push ourselves to "not miss anything" but I've learned that 10 rides and a strategic retreat is a much nicer day for those that love me than 12 rides, a trip to First Aid and me in the fetal position back at the hotel.

Be prepared to let the other adult (there will be another adult, right?) take the kids on a ride or two while you have a break. Don't fall into the trap of "toughing it out" and hurt yourself. You will not improve the vacation that way. (This is not so much wisdom as hard won experience. Very embarrassing to break down in Disneyland. Twice. Yeah...)

 

[rewardsinlife]

Don't have MS, but have many of the symptoms..dr.s still working on the diagnosis. Anyway, most important thing is to take your time! The more you conserve your enery..the better! Having everyone understand tht as well helps too. Also, think creatively about how to get around the park to give yourself breaks. For example, I found out that taking the train around Disneyland to get from Tomorrowland to new Orleans is much easier than fighting the traffic and walking that whole way. Plus, it gives you anywhere from a 10-20 minute break which is good for tired lgs and cooling off too from the sun. Also, last trip I took the trolley down main street ito the castle! So much easier! Especially when crowds are Thick. The stop and go really gets to me so the more you utilize the vehicles there for you...the better off you will be!

 

[cynthiav2011]

I was just diagnosed with MS a month ago, and went to Disney World about two weeks later (2/28-3/5). I have problem with numbness and tingling in my feet, leg weakness and limping, and also extreme sensitivity to heat. I would encourage you to consider renting an ECV. I do not know if you have any mobility issues currently, but I think having the scooter for me was a great reassurance that I could keep up and keep going all day long with the rest of my group. I don't have children, but we traveled with my 5 year old niece, and she was protective of my scooter and would hold onto the arm rest and walk with me. I also got a GAC and my experience was great using it. There are some rides I did have to transfer to a wheelchair for the queue and my sister would push me.

I think the main thing to keep in mind is be careful of your limits. With MS you get tired so much more easily. I struggle with that now, even just cleaning my house. I don't know when to let up when I am pushing myself too hard. It's okay to take breaks, or schedule to go back to the hotel to rest in the afternoon (especially when its the hottest). I have never been in the end of April, but I have been in the beginning of May and I found it very warm. Make you sure you plan on drinking a lot of water and wearing loose and light clothing.

I also did a steroid treatment literally days before our trip and I wouldn't recommend that. It sounds like you will have a good break after before your trip. The steroids gave me insomnia and also wrecked my immune system, so I was half-sick our entire trip. Make sure you take some vitamin C before you go so you don't get sick!

I hope your trip goes well and you are able to have a great time, despite the MS diagnosis! Its something I was extremely worried and stressed about and Disney was GREAT about everything and it was a great experience.

 

[cynthiav2011]

I want to thank everyone for their comments, advice, and encouragement!

First off, Apple Scooters was GREAT and I had no problems with the company or the scooter I used. I recommend the Go Go Elite Traveler Plus scooter for first time ECV users and those who are concerned with maneuverability and the amount of space they take up in the scooter. I was able to turn extremely easily and park with ease (most of the time). I used it all day in the parks and the battery indicator light never once flickered a tick mark. I did charge it every night in our hotel room though.

My experience with parking it on the buses was a lot more mixed. After I got some initial practice using it I could park it easily- when no one was watching me. However, that is very rare in the parks and I just felt so flustered and nervous with everyone waiting to board the bus on ME to park that I messed up several times. My main saving grace was that my dad joined us for our trip half way through and rented a van. We then drove to the parks and my dad and I could disassemble and stow the scooter in under a minute. I think if I need to use an ECV for a future trip (which is probably likely) we will rent a vehicle. My anxiety is just too much and I don't like being the center of attention.

I had a GAC that allowed me to use an alternate line entrance and showed it to the cast member outside every attraction just in case. The only line we ever had to stand in the regular queue for was Pirates of the Caribbean and then my sister pushed me in a wheelchair.

I was extremely careful operating the scooter, and the first night there we were exiting Magic Kingdom down Main Street RIGHT after the fireworks finished. Talk about a crowd! I was pleased on how quickly the scooter would brake. I never once hit anyone. My dad would rent a scooter from Disney because of ankle pain, and I actually saw him run into a woman who darted in front of him. I got used to people constantly running across/stopping in front of me.

For those with MS, I would NOT recommend going right after a steroid treatment. I had absolutely no rest before the trip and my immune system was weakened. The timeframe we went in has beautiful (if cold) weather and didnt sweat once, which is a miracle.

If anyone ever game me a dirty look or made a comment, I never heard it. Disney was wonderful and I think the general public were very kind. When were leaving after the fireworks, the Main Street lights were still turned off. We could not see where the curb ended and it was wall-to-wall people. A man and his wife who were behind us actually PICKED UP my scooter (with me sort of still sitting in it!!!) to help guide me over the curb.

I hope this will be able to help someone else who is considering using an ECV!

 

[disney david]

I want to thank everyone for their comments, advice, and encouragement!

First off, Apple Scooters was GREAT and I had no problems with the company or the scooter I used. I recommend the Go Go Elite Traveler Plus scooter for first time ECV users and those who are concerned with maneuverability and the amount of space they take up in the scooter. I was able to turn extremely easily and park with ease (most of the time). I used it all day in the parks and the battery indicator light never once flickered a tick mark. I did charge it every night in our hotel room though.

My experience with parking it on the buses was a lot more mixed. After I got some initial practice using it I could park it easily- when no one was watching me. However, that is very rare in the parks and I just felt so flustered and nervous with everyone waiting to board the bus on ME to park that I messed up several times. My main saving grace was that my dad joined us for our trip half way through and rented a van. We then drove to the parks and my dad and I could disassemble and stow the scooter in under a minute. I think if I need to use an ECV for a future trip (which is probably likely) we will rent a vehicle. My anxiety is just too much and I don't like being the center of attention.

I had a GAC and showed it to the cast member outside every attraction just in case. The only line we ever had to stand in the regular queue for was Pirates of the Caribbean and then my sister pushed me in a wheelchair.

I was extremely careful operating the scooter, and the first night there we were exiting Magic Kingdom RIGHT after the fireworks finished. Talk about a crowd! I was pleased on how quickly the scooter would break. I never once hit anyone. My dad would rent a scooter from Disney because of ankle pain, and I actually saw him run into a woman who darted in front of him. I got used to people constantly running across/stopping in front of me.

For those with MS, I would NOT recommend going right after a steroid treatment. I had absolutely not rest before the trip and my immune system was weakened. The timeframe we went in has beautiful (if cold) weather and didnt sweat once, which is a miracle.

I hope this will be able to help someone else who is considering using an ECV!

I so glad you had great time and was able to use the bus a couple times how was the drivers. I also don't like to be the center of attention so I understand how you feel glad it worked out for you so you didn't have to deal with that the whole trip.

 

[scooby9932]

I'm so glad your scooter experience went well! I completely understand the dislike of attention. As the years have passed and I have gotten used to using wheelchairs and scooters, my anxiety about that has lessened. I hope yours will too.

I'm sorry the steroid treatment was hard on you. They really do wipe you out, I know. I once went 2 days after a radiation treatment & boy was that one hard! I thought it wouldn't be any worse than going to work (I worked through all my chemo & radiation treatments). But the combination of the excitement, travel, change in schedule, etc. all together made it much harder.

My husband and I are considering taking our vehicle with our scooters. We rent the same kind you did. We have a crossover so they should both fit when broken down. The question I have is: Were the pieces really heavy? With bad backs we have to be careful with that.

 

[Shelly F - Ohio]

I would suggest getting a Frog Togg. Its a cooling towel that when you wet it, it get cold. I carry mine in a gallon size ziplock bag to keep it from getting things wet. At night hang it up to dry and they simply rewet it and you are good to go for about 4 hours. Then all you have to do it rewet it and it gets cold again.

you can find them at Walmart in the camping section or at Bed Bath Beyond.

 

[SueM in MN]

Since there are 2 very recent open threads about travel to WDW with MS, I am going to combine them. That way people will get the benefit of things that were already posted in each thread.

Also, a Just a reminder for posters:
We ask posters not to post specific names of stamps, descriptions of stamps or exactly what happened to them at specific attractions for Guest Assistance Cards (GACs)

Some of the reasons are:

WDW can and does change the Guest Assistance Card from time to time. Sometimes it is what it or a specific stamp is called or looks like. Sometimes it is how it works.
And, things you may not be able to see can change how guests are handled.
This can include things like staffing at an attraction, how busy the park and that attraction are, time of day and time of year and how many other guests with special needs are waiting,
How a particular GAC is handled may not even be the same on the same attraction on the same day (even for the same guest).

People tend to read things other people posted and ask for the same stamp, whether or not it is the one that best fits their needs. Guests need to be prepared to explain their needs to Guest Relations.

These are some of the reasons why we ask people not to post the names or descriptions of stamps or exactly what accommodation they were given.

The informations about GACs in post 6 of the disABILITIES FAQs thread is up to date and accurate. It is based on the ADA and is general enough to not give a lot of information that is likely to change. Someone who knows that they need to explain their needs, should be able to get the assistance they need.
You can find the disABILITIES FAQs thread near the top of the disABILITIES Board or follow the link in my signature.

 

[tigger&tigerlover]

I'll be going to WDW in December. Like many here, I can't walk or stand for more than about 15 minutes. I'm going to rent a Scooter, and I know to practice at places like Walmart (thank you for the zoo suggestion!).

I have lower back problems, and need a pillow or some type of support in my lower back. I noticed some of the available scooters for rent look like they have taller seats, and look like that have more low back support.

My question is this: I already plan on bringing a small pillow or similar for support, but would the different chair help as well? Is it worth it to go to the larger model, losing mobility of the scooter but possibly getting more comfort? (I'll be staying onsite, so I won't need to take it apart to put it in a rental car). Thoughts?

I also plan on looking around my city to see if there's any of the same model(s) that I could at least compare by sitting in. I also know that I might not find something comparable.

Thanks!