Hi...this is all pretty new to me *I'm back - Update Post #15*

[SeaSpray]

Hi everyone

This is my first time over here on the Disabilities Board. A DIS friend recommended that I come over here for some information. Wow, you've got a lot of great information here.

I've read a lot of FAQ threads but I'm hoping that if I explain my situation, some of you could make recommendations to me.

Here's my story:
I have rheumatoid arthritis and severe plantar fasciitis which I will end up needing surgery for. For the last 3 of my WDW trips, I've ended up in a wheel chair by the second day of the trip because of extreme pain and lack of mobility (my foot/ankle and knee and hip joints just freeze up). At home, I have to get up and move, and then I need to sit and rest. All rest or all moving is very bad for me. I work part time in a great office and my job consists of part moving around (filing, office work), and then doing computer work which allows me to sit. Also, I'm able to choose which order I do my work in; I get up and move when I feel my joints stiffening, and then I sit and do computer work when my foot or joints have had enough.

Anyway, I've always waited to rent the wheel chair (twice were regular wheel chairs and my poor DH had to push me around, but this past May I was on a Girls Only trip so I rented the ECV and it was very nice to have that independence and not have to make anyone push me), until I was in a LOT of pain. Honestly, I really don't want to wait until I'm in a LOT of pain to rent a wheel chair this time. Also, once I get to the point where I'm in a lot of pain, it's then very long-lasting and takes weeks and months to get back to "normal". Not to mention a few cortisone injections, lots of wasted time on heating pads, and a ton of ibuprophen.


Upside to renting at the parks:
I have no problem with the idea of renting an EVC at the parks. I figure this way, I can take the little boat over to the MK from our resort (the Polynesian). Also, if we go to a park where we need to use a bus, I can just get on the bus and then get the EVC at the park.
I probably wouldn't need the EVC much around the resort in regards to getting to the pool (we'll be in the Hawaii building which is right next to the pool) or the restaurants. However, I do realize that all in all, it'll still add up to a lot of walking.

The downside to renting at the parks is:
I still may end up in pain/lack of mobility due to all the walking I'll be doing around the resort and going to and from the parks.
Once I get to a park there's no guarantee that an EVC will be available for me.
My DH has Diabetes, he's on multiple medications as well as 3 injections a day. It's going to be HOT and HUMID while we're there and I really don't want him to have to push me around (his sugars can plummet when he gets over heated. Almost lost him in Bermuda one time!).

I guess I just would like input on whether I should just rent at the parks and hope they have the EVC available when I'm there, and hope that the walking around the resort and getting to and from the parks won't aggravate my conditions too much (wishful thinking, I think ), or should I bite the bullet and just rent one from an outside company so that I have it with me from the start? I just hate the idea of not being able to use the boat to get to and from the MK, and taking up all that time to get the EVC on the bus. Oh, this leads me to another question: If I just take the monorail to and from the MK and to and from Epcot, I can just wheel right on, right? Any special assistance I'd need to do this??

Also, my DIS friend told me there are special spots for the parades for people in wheelchairs. Where can I find this info? I didn't see it when I looked.

Thanks so much for reading this if you've gotten this far! And thanks for any comments or feedback.

P.S. I hate looking like one of those people who "doesn't look like she needs a wheelchair". I told my DH that I want to just wrap my foot in an ace bandage so that there's something VISIBLE to see. It's strange having "invisible" ailments! (Don't get me wrong, I'm not complaining, just feeling a little self-conscious I guess. )

P.P.S. I just was reading about the GACs. With my DHs diabetes and inability to tolerate heat and humidity, and my conditions, do you see any benefit to us asking for this? We already plan sit-down meals so we have built in breaks from the heat and all that walking. The only downside with DHs and my health issues is all the extra time these things take up; we end up doing and see very little in the parks, by the end of the day.

 

[madenon]

You've answered your own questions allready.

You think it's very likely that renting on site will mean; too much pain allready just getting around the resorts. Renting at that point would be a bit pointless as where you're considered. After all; you wanted to be prepared and act before you reach the point of too much pain. So yes; you should rent off side.

It's better to have a ECV at your service and not needing it (all the time) around the resort and going home and be back in shape in appropriate time, than to give yourself too much pain getting to and from the park, missing out on things and to spend a lot of time afterwards getting back into shape.

Now as for the "you don't look like you need a wc". Tell me; how does someone look that needs a wc? Are they blond? Blue eyes? Old? Male? Big or small? Drooling? There isn't a "look" for using a wc, there are medical needs for that. You fit the picture as you've stated, so yes; you do look like you need a wc.

Don't beat yourself up over what others might think or what you "should" or "shouldn't" be doing. Using a wc will reduce your pain and increase your time having fun. Only keep that in mind and to hell with whatever anyone is thinking. And hey; you'll probably never see those people you'll run into at WDW ever again in your life. So let them think whatever of you. Obviously they need it to think and judge about others. Poor them.

 

[Piper]

I just returned from WDW on the 15th. I have Lupus (among other things ) and can't tolerate heat or sun. I use an ecv (my own) in the parks. I got a GAC so that I could wait for attractions in the shade, but I never used it. Because of careful planning, I never had a wait--even in the middle of summer.

If something looked too crowded, I just went on to the next thing on my list and came back later. I always wore a hat, lots of sunscreen, my cooling vest and I did fine!

 

[MikeS.]

You probably already read the sticky on top of this discussion, it tells you who to call and the websites for them. I'm going to try Randy's first, they seem to have the best prices and have a lot of good reviews here.

I posted my own thread this morning about needing an ECV for my wife this trip.

 

[Cheshire Figment]

Hi and to disABILITIES!

As Madenon said, you've basically answered your own questions.

You are much better off renting the ECV from off-site. That way the pain will not have time to start.

If staying at the Poly, to get to the monorail take one of the two elevators in the Great Ceremonial House to the second floor and go to the monorail platform. You will be directed to a specific location, and a host will put down a metal plate which will allow you to just drive into the car. Note that when you get off in MK you will also drive forward. Going back to the Poly, when you get to the station you will have to back out, but that should not be a problem.

As far as DH, if he wants he can leave his medications at First Aid in any park; they will put it in a bag, attach a form you fill out to the bag, and keep it in a refrigerator. They can also provide a private area for doing injections, and will provide alcohol swabs and a Sharps container, but will not provide needles. Also, if there is need to rest they will provide a semi-private area where a person can lay down and relax for up to an hour.

 

[SeaSpray]

Thanks everyone!!

You're all correct; I pretty much answered my own question regarding the ECV, didn't I. LOL

I checked out the sticky thread and called one of the companies, Walker Mobility. You don't need to be present when they drop it off and pick it up. The woman I spoke to was very nice and answered my questions. I plan on calling them back and booking an EVC to be at my resort for when we check in this Friday, and then have them pick it up after we check out next Monday evening.

At least I'll have it with me all the time if I need it, and I won't have to worry about whether there'll be any available in the parks or not.

Thanks again for the feedback!!!

 

[dclfun]

For the parade areas you will see roped off areas with the w/c symbol on a small plastic "sign" hanging from the rope. Depending on how crowded it is, you may or may not be allowed to bring your entire party with you but rarely have I not been able to bring my family (depending on which kids come, we are sometimes a party of 5 ). They sometimes aren't comfortable as if the area is crowded they are squished behind all the chairs and always have to stand the entire time. Plan to get to them early as they do fill up sometimes. If you're already in a nice area, you can still put your ECV up to the curb and watch from anyplace you like- this way the other members of your party can also sit on the curb. As for a GAC, with an ECV you probably don't need one. The problem with waiting in the shade is it's still usually hot - it does help people for whom direct sun can aggravate their medical condition but for your husband it might not make much difference if it's the heat that affects his blood sugar. I know what you mean about that boat from the Poly. Before I was in a w/c I loved taking the boats back to the resorts- it was a nice way to unwind, but you'd probably be better off renting the ECV so you're not in pain- you can't really unwind at all if you're hurting.---Kathy

 

[SeaSpray]

Thanks, Kathy!

I decided to rent an ECV, I called last evening and booked it; Walker Mobility will have an EVC waiting for me at the Polynesian this Friday. Now that that's been decided, I feel a sense of relief about it. My DH thinks I made the right decision, too.

Thanks for the info about the parade viewing areas. We're not usually parade watchers, but on the last couple of trips I took the time to watch them and really enjoyed them, so we'll probably do the same thing on this trip.

 

[madenon]

Good for you, Seaspray! No worry about unneeded extra pain etc.

Have fun this weekend, and of course we want to hear all about it when you get back.

 

[Barbday62]

Hey Sea Spray!! Im so happy you went with off site rental. That out of the park walking can be brutal too!!

A suggestion if your having a good day leave the ECV in your hotel room a little bit in the morning then monorail back later to pick it up if you really want to do that boat ride!! As for looking disabled or not. My husband has Muscular Dystrphy. He does not look disabled and in fact at home rarely uses his Power wheelchair. Most cannot tell he needs it. All that extra walking is terrible for him. He has learned to stop worrying what others think. We use to say to people he would trade a half day in their shoes if they would take a half day in his. He has his own power chair and we use it when ever we do lots of walking like the mall and disney, but short things he does not.

Do not worry about putting on an ace unles you need it for compression or something. That to me sounds like a lot of torture just for appearance. You will be fine and dont worry what others think. You have a legitamate need to use the EVC and it will make your vacation so much better.

Have fun in WDW!!

 

[kmjmom]

Have a wonderful and comfortable trip!

 

[SeaSpray]

Hey Sea Spray!! Im so happy you went with off site rental. That out of the park walking can be brutal too!!

A suggestion if your having a good day leave the ECV in your hotel room a little bit in the morning then monorail back later to pick it up if you really want to do that boat ride!! As for looking disabled or not. My husband has Muscular Dystrphy. He does not look disabled and in fact at home rarely uses his Power wheelchair. Most cannot tell he needs it. All that extra walking is terrible for him. He has learned to stop worrying what others think. We use to say to people he would trade a half day in their shoes if they would take a half day in his. He has his own power chair and we use it when ever we do lots of walking like the mall and disney, but short things he does not.

Do not worry about putting on an ace unles you need it for compression or something. That to me sounds like a lot of torture just for appearance. You will be fine and dont worry what others think. You have a legitamate need to use the EVC and it will make your vacation so much better.

Have fun in WDW!!

Thanks My DH keeps telling me the same thing, regarding the fact that I need the EVC while at WDW, and with all of the support from the people who've posted on this thread, I am totally comfortable with the idea of it now, and I'm actually looking forward to being at WDW and not in pain, which hasn't happened in several years.

Good idea, I was thinking the same thing, to take the boat over if I know we're only going to be at the MK for a short while, then use the EVC for the rest of the day.

Have a wonderful and comfortable trip!

Thank you!


And thanks to everyone, for all of your information and encouragement

 

[Barbday62]

You can always ask your husband to drive for you when you need a stretch. lol. Sometimes my husband needs to get up and walk even for a short bit and he will ask me to navigate the power chair. Now thats a circus act. We learned only do that when we are in areas less crowded as im not licenced to drive that vehicle yet.

Im sure it will be a great trip.

(By the way you know me as princessconfused on VMK)

 

[SeaSpray]

You can always ask your husband to drive for you when you need a stretch. lol. Sometimes my husband needs to get up and walk even for a short bit and he will ask me to navigate the power chair. Now thats a circus act. We learned only do that when we are in areas less crowded as im not licenced to drive that vehicle yet.

Im sure it will be a great trip.

(By the way you know me as princessconfused on VMK)

Hi PrincessConfused!! I'm glad you told me your VMK name because I wouldn't have remembered/recognised who you were. lol

I told Cape dude that he might need to drive it for a few minutes here and there so I can walk a bit and he said he'd feel funny doing that because he doesn't need to use a wheelchair. I told him we could always park it in an area, walk around that area a bit, then get back and get the chair and move on. He does have health issues (diabetese, high cholesterol, etc) but nothing that he needs a wheelchair for, but I think he could drive it a little, just to help me out, by moving it for me when I need to get up and a little.

 

[SeaSpray]

arg I just typed out a fairly long reply, to let you all know that the scooter I rented from Walker Mobility worked out very well, and to thank you for all the advice.

I also had explained that I had a great trip, I felt GREAT during my trip, but now the last day and a half I'm almost bedridden because my RA is really acting up I have no energy today and I'm in a lot of pain

Anyway, here's a link to my resort report with pictures, if anyone would like to see them http://www.disboards.com/showthread.php?t=1534109

(I'm on the couch with the laptop and heating pad and these stinking small keys make me crazy and thats how I deleted my first post! lol)

 

[MomOf2DisneyKids]

I saw your trip report and gorgeous pics over on the other board....looks great! I'm glad you had a great trip!!

 

[dclfun]

Seaspray- glad you had a great trip! Sometimes I think our bodies hold up during the trip due to sheer adrenaline or whatever stress hormones float around in there....then when we get back home it's time to collapse for awhile. Hope you feel better soon, but it sounds like you need the rest right now to recover from all the fun!---Kathy

 

[madenon]

Welcome back Seapray! Hopefully you'll recover quickly.

Kathy, don't think it anymore, know it. It's been researched and turned out to be indeed the pure adrenaline that can keep people going and going and going and going untill the moment they themselves decide they're ok to "crash". Same thing as the body making it's own painkillers in emergency situations.

 

[SeaSpray]

Thanks for the "welcome back" everyone

I agree, it was probably the combination of pure adrenaline (this was one of our best trips ever!) plus the use of the scooter, that allowed me to feel so good during the trip.

Last night at bedtime I was in so much pain that I took a prescription painkiller and a muscle relaxer, and I slept pretty well, and I'm feeling much better today. I try hard to NOT take prescription medications like that, but last night I really needed it. Tonight, I'll be back to Advil.