1st timer with MS saying HI! Any advice?

[UponAStar]

After reading old posts and lurking a while I thought I would introduce myself and say hi!

I'm a 40 something female with relapsing/remitting multiple sclerosis and a member of the "but you look so good" club. Fatigue and heat sensitivity are my ongoing issues with occasional vision loss, numbness, vertigo. I am pretty ambulatory and occasionally use an ECV for shopping and wheelchair transfers at the airport. As long as I pace myself, avoid the heat and rest/nap everyday from 3-5 I do OK.

My husband and I are heading to the Dolphin the week before Christmas, our first time as adults. I never thought I could handle Disney (I avoid crowds like the plague, can't handle long distances or standing for long periods of time and melt in the heat) but we're going to give it a shot! Am I bonkers?

I'm planning on renting an ECV from Walker or Care, getting a GAC for the heat/sun issue, a fridge for my meds and not do the commando thing. Any other tips or advice?

I'm concerned about people's reactions to the ECV since I look OK (or as DH would say - more than OK but he's biased) and can walk fine - just not for long distances or in the the heat. Also, the logistics of the ECV on the busses and boats is a little scary. Almost makes me not want to use an ECV at all, but if I don't I probably won't last more than an hour or two. Can you tell I'm ambivalent?

Sorry for the long post and thanks for listening. I'm sure I'll be posting more messages later....

 

[Nanajo1]

Welcome!
You are not bonkers. I also have RR MS and been diagnosed for 18 yrs but symptomatic for more. I have been to WDW before and after my DX. The ECV is a blessing. Use it to conserve your energy. The bus transfer get easier each time. The trick is to relax and not get rattled. The drivers on the whole know what they are doing and will be helpful and instruct you. Keep hydrated and cool off in the indoor shows and exhibits. BTW Mousekeeping will supply a sharps container for you if asked. Please ask any/all questions. PD for a great trip.

 

[figment27]

I have RRMS, and this will also be my first trip to WDW post dx.
My major problem is vision, I am legally blind due to ON.
Fatigue does not seem to be an issue with me. Thank goodness for that!
I plan to ask for a GAC pass primarily for those shows/rides that I will be able to see a little of if I sit up close.
Getting very excited, it seems to be coming up fast!
Good Luck to you!
Figment

 

[UponAStar]

Thanks for the encouraging words Nanajo1 and figment27. I didn't even think about a sharps container!

Any particularly cool shows or spots (as in temperature ) that you can think of? Likewise, are there any hot spots to be aware of? I'm hoping December will be tolerable but you never know what mother nature will have in store. I've had problems in the past with hotel rooms being uncomfortably warm in the middle of winter and no way to open a window. I hope the the A/C will be working!

Figment - is your ON in both eyes, how long have you had it? I just got over a particulary nasty ON attack but am back to normal. (Reminds me of my favorite bumper sticker - Why Be Normal?)

Did you notice that we all are from New Engand?

 

[figment27]

Can't help you with what are "coo" spots/rides/attractions, but there are many very knowledgeable people on this board that are able to offer great information.
I have had ON since '95, started in my left eye and progressed to the right eye in '97. I have not been able to work since February of 1998. The neuro-ophthalmologist I see at Mass Eye and Ear tells me I am a most unusual and rare case ( how lucky am I?). He tells me the majority of cases make a full recovery of their vision.
Yes, I did notice we are all from NE, kind of goes along with NMSS statistics of the higher incidence of MS in temperant climates, especially in the northern latitudes.
I also noticed that Nanajo is a RN like myself. Acton, MA is only about 45 minutes from here.
What a "small world".
Figment

 

[ghcoughlin]

Hi!I just read your post and had to add a few words.First off you sound like I did the first time I was going to WDW since MS was diagnosed.We went in the HEAT of Sept.I was starting to get all worked up with"what ifs"I was afraid my MS would get in the way of my family having a great time.Well I put the trip /MS into prespective.I haven't aloud the MS to dictate my life up to that point and I wasn't about to start now.I had a plan:stayed on sight just in case I had to go rest,drank plenty of water,had a mini fan at all times,went into air conditioned attractions often,(there are plenty of them)Took cold showers when possible and took it easy.My family and I had a wonderful time.That first trip was 3 trips ago in 1 year.And I was a gluten for punishment and went back in Sept again.We get more accomplished when we went in Feb.
You will find in Dec it won't be that awful heat you are concerned about.The sun won't be that strong either.It sounds like you have a great husband that will help you iron out any problems that arise.Sit back relax and have a great time!!!!
Heid
PS another New Englander

 

[SueM in MN]

You got some real expert advice.
I won't add anything except some pixie dust for a great trip and a link to a web site that you might find helpful.

 

[UponAStar]

Heidi - thanks for the encouraging words, we're leaving in a week and a half and I'm so excited (and just a little anxious.) I rented an ECV through Care Medical and they even let me choose the color - red, of course! Now if only I can maneuver it through the crowds and onto the busses I'll be all set.

And you're right about my DH, (do you know him ), he is an expert at anticipating potential problems and making sure things go as smoothly as possible. It really helps to have someone "on your side".

Sue M - thanks for the pixie dust and the great link!

- Suzan

 

[cupcake]

I just wanted to offer some encouragement on the ECV front. I have an "invisible" disability (extra bones in my feet, which limits my ability to walk/stand) and used an ECV for the first time this fall, after many visits with my dh pushing me in a wc. I rented from Walker & stayed at the Dolphin and mostly toured myself while my dh was at a conference.

I suggest going to Epcot first to get accustomed to the ECV, as I found that it was the least crowded and easiest to get around in. After the first day, it really wasn't an issue, they are easy to manage! But it gave me more confidence. The 3 wheel rental one I had seemed easier to manage than the 4 wheel WDW ones, another incentive to rent off-site.

I thought the boats were a piece of cake in the EVC and also had no trouble with the monorails (was worried bc I had read it was hard to get lined up to back up onto the ramp to get off, it was fine for me, just go slow). The only time I had trouble with a bus was when there was someone with a cane and his legs out in the aisle who was seated in the flip up seat in front of where I wanted to go. He didn't get up, and bc he had a cane, I didn't ask him to. Note that the drivers are not allowed to ask people to move. This was my first time, once I did it a few times it would have been fine, but it (backing in, person's legs out) got me flustered.

In my opinion, the trick for the buses is (1) steer counterclockwise as sharply as you can immediately as you back up from the ramp onto the bus; and (2) back up in turtle speed (more control). Once I did it a few times I was a pro. Honestly, other than my bad first bus experience, I did great. As others here will attest, I was really paranoid about the whole transportation issue.

All indoor rides/attractions have good AC. Pirates of the Caribbean is especially chilly, in my opinion (we used to visit WDW in the summer when I was little, it was my mom's favorite for this reason!!). The only shady parade spot I ever found was in front of the hat at MGM.

Sending lots of pixie dust for a great trip!! If there are any questions about ECVs from the perspective of a total wimp, I'm your person, ask away!!!

Cupcake

 

[UponAStar]

cupcake - Wow! Thanks for the detailed ECV instructions. Did you hit anyone? Seriously, was it hard to avoid people and did they cut in front of you? How about the view at that level?

We're staying at the Dolphin too! Did you store your ECV in your room?

Oooh. Oooh. I'm getting really excited now.

 

[faeflora]

cupcake- great information on the ECV to bus steering. I just picked up a scooter this morning for my mom to use on the upcoming trip. So I will pass that information on to her. I use a manual chair so am not familar with the best way to manuever the ECV on the bus.
Thanks again
faeflora

 

[cupcake]

Oops, I don't know why I said Dolphin, we were at the Swan. They offered to let us keep the EVC in a room (unlocked) next to the concierge that said cast only on the door, this worked out great.

Yes, I did hit someone!!! Actually, two people. Both were when I was flustered. The lesson I took from it (after which I never hit anyone or anything again) was to adopt a new attitude. I don't mean this to come out wrong, but kind of a "if it takes me longer and you have to stand in back of me and get annoyed, so be it." I don't think most people do get annoyed, but I was constantly worrying about it (weird bc I am an experienced wc user, but the ECV is the first time I was independent). Once I stopped worrying, I didn't have problems. The scooter really is super easy to steer, it was all mental. Who did I hit, you ask! (1) ran over my husband's foot in the Smucker's shop at the MK. I clipped the corner of a display (tight area) and instead of pausing/thinking/moving, I immediately backed up and... whoops. (2) in Epcot, in Germany, in a crowded shop, I meant to back up and grabbed the wrong side of the lever and... whoops (first day, was flustered).

Avoiding people & dealing with crowds: I found the best thing to do was to KEEP MOVING and think ahead (both tips courtesy of this board). In crowds, if you stop, people will flow around you and you'll get stuck. If you roll, they will move. Whenever you park, think about how you'll exit. For example, I backed in when parking at the Festival of the Lion King and sat on the benches. I then easily scooted out while others struggled to back out in the crowd. Same for rides/shows. When you show up, you will have room/time to maneuver, when you leave, you won't.

Here is another great tip, courtesy of a lovely woman and fellow ECV user I met on the boat to MGM. There is a release knob on the scooter. Look at your instructions! (mine were in the back pocket of my Walker scooter). It allows the scooter to "free wheel" so you can roll it manually. If you get into a tight spot and can hop off the scooter (maybe you could also stay on?), you can pull the release and someone can push it. Awesome for the novice ECVer who gets flustered on a crowded bus and is trying to parallel park! (who, me?). I never did this as I found out about it after the one time I would have done it, but it is definitely good to know.

She also reminded me to take my time and go in turtle when I needed more control. Very true!

Bring a towel, it is comfortable (my scooter had a vinyl seat) and makes your scooter easy to identify.

View from the scooter: a bit better than the wc bc you are not quite as low. Also better bc the person steering is you! (as opposed to your pusher who may steer differently bc their view is different). I would not be concerned about this at all.

Overall impressions: 100% worth the $$$. We will rent again even if my dh is available to push (he was at a conference much of this trip). It's easier and more fun to tour bc your pusher is not trapped in back of you. It is totally awesome to be so independent. It is FAR more comfortable than a folding wc. Off-site scooters are the way to go, the people with the WDW scooters were not as happy (slower, 4 wheel style, larger, hard to back up, less maneuverable, larger turn radius). Because I was mostly by myself, my fellow scooter users chatted with me while waiting and we compared notes (the usual conversation starter was "where did you get that scooter!?!?" after I deftly and quickly zipped into the perfect position at an attraction).

I am looking forward to great trip reports from everyone!!! I am happy to try to answer any other questions, although I think I lost whatever credibility I had when I 'fessed up to my two unfortunate casualties.

Cupcake

 

[Nanajo1]

I think you did great! I will grudgingly admit to running over my DH once. He said turn right but I think he meant left,LOL. I still sometimes find myself stating to back up when all I really want to do is switch hands for a while. But I love the independence the ECV gives me. Often I'll tell the group to stay put because I can get to check out something quicker than the walkers. Glad to hear you had a good time.