Need advice.....long, but desperate!

[phorsenuf]

Here's my dilemma. I have mobility issues due to fibromyalgia, back and nerve problems in my leg. We just got back a couple of weeks ago from a trip to Disney and I was in soo much pain while we were there! One day, after doing Epcot, I could barely walk and I was in tears the pain was so bad. On our last day there, I was going to rent a wheelchair but I just couldn't do it. I don't know why, I just couldn't. I felt like I was giving up or wimping out or something. I know its stupid since I am considered disabled, get social security and have a handicap parking tag. (I am 39). I guess getting a chair for me was just that last thing that I couldn't accept. Now that we are home, I am still laid up (doctors orders) and back in physical therepy. Although, that will only help for a bit.
Anyways, the point is, we are heading back down in July for 10 days. I know I cannot do it again without renting a wheelchair or ecv. I remember when we were ther one time my husband needed a chair during our trip and I couldn't stand the looks people gave us. back then, they would always let you right on the rides, bypassing everyone else. I don't even know if they do that anymore...I didn't notice in April, but then again, I didn't look because I didn't care. If you look at me, I look fine...just can't walk much ! I don't want those looks I guess.
So what should I do? I want this to be a special trip because it is our last family vacation together before my son leaves for the military. I want to have fun, not be miserable! I know what I need to do, how do I bring myself to do it???
Does anyone know what I mean or how I feel?
Any advice would be greatly appreciated! Are the ecv's expensive to rent? Do they rent out fast at the parks? Also, what is this GAC I've seen mentioned on these boards?
Help........

 

[Cheshire Figment]

Youare probably better off renting an ECV, as pushing a wheelchair can get very tiresome, especially if you are not used to it. Also it depends on the weight of the passenger and the condition of the pusher(s). Some information for off-site rentals are:

Here are the urls and phone numbers:

Walker Mobility:
1-888-726-6837
www.walkermobility.com

Care Medical:
http://www.caremedicalequipment.com/

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html

I have used Walker a few times. They will ask for a credit card and charge it the day before arrival. They will deliver the ECV to your hotel bell services before your arrival and pick it up there after your departure. Their rates, especially for longer than a week, are much better than Disney's. Also, their scooters are much better.

Walker's daily rate is less than $30.00, and if rented for more than a week the rate drops further. A real advantage for renting off-site is you have access no matter what park you are visiting, or also Downtown Disney or Universal.

You don't say if you are renting a car or what. If you are using a car for getting around, the ECVs break down into five pieces, the heaviest about 39 pounds. They take about a minute or so to take apart and about two minutes (once you are used to it) to put it together.

Since you already have a tag, bring it with you. If the parking lots are crowded, Orange County Police will sometimes patrol the medical parking area and pass out tickets for cars without HP tags or placards.

Don't worry about people giving you "the look". What they don't know or understand is their problem, not yours. If anyone does comment, sweetly offer to trade bodies with them; unless excessively dense they should get the point.

Almost all the attractions are now "mainstreamed", which means that the lines will accomodate ECVs and wheelchairs. If the lines do not, a CM will take you to an area where you will generally have to wait for a period of time as if you were in the line.

Normally if you are in an ECV or wheelchair, a GAC is not needed unless there is some other special restriction, such as having to avoid prolonged exposure to sunlight or something else.

In general, as long as you don't DEMAND special consideration, you should have no problem.

The key thing to remember, is you have as much right to enjoy you vacation as anyone else has to enjoy theirs. If it takes something special to assist you in enjoyung the vacation, you should take advantage of it as long as it does not hurt someone else.

 

[BillSears]

Phorsenuf,

It's very tough for some to go to a wheelchair/ECV. I'm a wheelchair user full time due to paraplegia and to me my wheelchair is the best thing I could ever have. Since I can't walk at all it I don't really have a choice so I look at my chair the same way most people would look at shoes. It's just another thing you put on in the morning.

Since you don't use a wheelchair full time you should probably get an ECV instead. If you got the wheelchair you might find it hard to push yourself all day long and since pride is an issue here(we all like to be independent) having someone push you all day long would be a blow to your ego. With the ECV you will go where you want to go and not be reliant on others. Also you can park it at the entrance to attractions and walk onto them. That way you avoid the long walks but also avoid the ECV in crowds problems.

You can rent ECVs at the park for $35 a day but there are only a limited number of them. I've never rented from Caremedical but I've heard good things about them. They rent ECVs for $30.00 per day or $200.00 for the first week and $25.00 each additional day after the first week. Their web site is: http://caremedicalequipment.com/ Deb Wils also has a nice FAQ about ECVs at http://www.wdwig.com/ecv_faq.htm

Have fun on your next trip down. Please remember to do what you need to do to enjoy your trip. If people have a problem with you using an ECV it's thier problem not yours. You're the one who will have to live with the pain and shorter times in the parks if you don't use the ECV. So it is not wimping out to use it any more then it is to wear comfortable shoes or a hat to keep off the sun.

 

[SueM in MN]

Welcome to disABILITIES and you are not the first to post asking for advice like this, so don't feel alone.
First....you have the right to have a vacation that is not going to wear you out to the point of needing extra therapy. You have a right to enjoy yourself on your vacation. As for what other people say or think or do, you know that a wheelchair or scooter is a tool that will help you to enjoy your vacation and not just endure it, they are strangers and have no idea what is really going on. Some will make comments or give you looks anyway - I have heard people walking by us say that our DD is "faking" because they saw her sitting on a bench with her legs crossed, with her wheelchair sitting next to her. They don't know and don't care that she is not able to walk and is not even able to get herself from the wheelchair to the bench, or even to cross her legs by herself. They just see something that they think they can interpret and make judgements based on a 30 second glimpse into someone else's life. They don't know anything and they have no right to judge anyone. Most don't let that stop them, so you just have to keep thinking to yourself how "disabled" they are by their ignorance and lack of empathy.

Second.... in most cases, you will not be bypassing lines. Many of the lines (and all of the fastpass lines) have been changed to make room for wheelchairs and scvs in the lines. This is called Mainstream Access. Here's a link to the DIS page about touring with mobility disabilities. It includes lists of rides that have Mainstream Access. The few lines where you do bypass the lines are that way because the lines are not accessible, not to give any special treatment.

ECV rental.... there are lots of poster who can give personal advice on that. The link above gives info about renting at the parks. If you want to make sure you have one, the best is to rent from one of the off-site companies.

GAC.... Stands for Guest Assistacne Card and they can be requested from Guest Services at any of the parks. The purpose of the GAC is to inform CMs of assistance you need to make your wait in line possible. Sometimes that might mean the ability to wait in a quieter spot than the line. Sometimes, it means being able to use a stroller in places where strollers are not usually allowed or to use the wheelchair entrance without having a wheelchair (to avoid steps or to board with a little more time/space for boarding). For most people with mobility needs, there is no need for a GAC. Just using a wheelchair or ecv gives you access to the wheelchair entrances. So, if that meets your needs, you don't need a GAC.

Addition after posting: Between the time I started writing this and finally got it posted, I see you got 2 other helpful responses. So, I hope that you feel better.

 

[nanatink]

I became a grandmother a few years back and about two years later. My daughter persuaded me to go to Disney World with the grandson. The only way that I could go was to use a wheel chair, I have (CMT) a neuromuscular progressive disease. I didn't want to but the need was too great. For years I stayed home and limited my trips to anywhere. I grew up with a family that frowns on people using wheel chairs and braces, that I have to wear. I finally gave in my daughters wishes.
We stayed at the ASM the first year. While I was waiting for my DH and DD to check us in. A man came over gave me a rose and said "a beautiful flower for a beautiful lady". Goose bumps just popped out on me and everdently(sp) tons of pixie dust. I didn't want to be there before and I felt so welcomed. I've lost count of the times we've have been since then. You could say I"m making up for lost time. In fact I will be leaving two weeks from today for 9 nights at POR.

 

[phorsenuf]

Thank you so much for all your replies. I will look into off-site rentals as we will have our own car, although we usually prefer to take the buses. My only hesitancy is that I would like to try to do the parks on my own at least some of it, and then get a chair or ECV when necessary. If I rent one for the whole trip, I will feel I need to always use it. BTW, is this something insurance might cover? Does anyone know?? My other concern too is the sun as that does tend to make my symptoms worse. (I am boderline Lupus, my Dr. just doesn't want to make that call yet! LOL) So that can be a problem too. I know I shouldn't be concerned what others think, but I do. LOL It's not that I am an egomaniac or anything, I would say more self-concious. I know transferring isn't going to be a problem or walking short distances. I guess that's where the looks and she's faking would come into play.
But then again, I do have the right to have an enjoyable vacation. Guess I need to just suck it up, huh??
I need to discuss this with DH too, I know his support will make a difference, although he did keep telling me on our last trip to get one.
decisions, decisions.......

 

[Andrew Bichard]

Originally posted by phorsenuf
Anyways, the point is, we are heading back down in July for 10 days. I know I cannot do it again without renting a wheelchair or ecv.
I want to have fun, not be miserable! I know what I need to do, how do I bring myself to do it???
Does anyone know what I mean or how I feel?Help........

Go for it!

I too have a slowly progressing condition that makes it difficult to walk. Although this condition has been with me since birth, I never perceived myself as a 'disabled person'

For years I refused to use a cane when it would have helped, then a wheelchair. I avoided leaving the house, and even cooking because I would have to stand up to do so. If I did go out, I drove the car and sent my wife in and out of shops to do errands. I gave up going to the cinema, restaurants and the theatre. At Disney I was constantly looking for places to sit down.

Of course, this wasn't fair on my wife. She was largely denied my company and my disability was affecting her too.

Eventually, I bought a wheelchair, then a couple of years later a power chair. The change in my life was tremendous. I now go out. I go down to the shops on my own. I smell the flowers and feel the rain (I live in England). I meet people on the streets & make friends. My wife & I go out together again

So get an ECV for your whole trip. You owe it not only to yourself, but also your family. I ceased to be 'disabled' the day I bought my chair.

Andrew

 

[LindaR]

I understand and have the same issues about using a wheelchair. I, too, have "invisible" impairments. (My spine is fused and due to nerve damage cannot walk or stand for long)

I am going to WDW in 9 days. I have a parking tag. I will use it. I will also request a GAC and use it if I need to. I haven't been at the end of May before, just September or early December trips, so I don't know how "bad" the lines will be.

I am not asking for anything. I don't have anything to feel guilty about. I also don't tolerate rudeness. If someone decides to say something to me, I will pray that they never have to deal with the same issues that alot of us deal with, and smile and continue on my way. I long ago gave up "worrying" about what other people think. I just worry about what God thinks!!!!

You will never see these people again.

Why would you cause yourself pain and permanent injury by overdoing it? Is some stranger gonna bear your pain for you? Nope.

Ride, honey, ride!

 

[SueM in MN]

My only hesitancy is that I would
like to try to do the parks on my own at least some of it, and
then get a chair or ECV when necessary.

If you are staying at one of the WDW resorts, you would be able to ride the bus in your ecv or wheelchair. Most of the buses are equipped with lifts or ramps and tie-downs so that the ecv/wheelchair is safely anchored into the bus for the trip. If you rent at the parks, you may find they are all out of ecvs when you get there (they are first come-first served). You would have a hard time propelling yourself in a manual wheelchair if that is all that is left to rent.

BTW, is this something insurance might cover?

Since, DD has her own wheelchair, we don't rent. I don't know the specific answer to that, but I do know that in order for insurance to cover anything, it has to be considered "medically necessary" and you need a prescription from your doctor for it. I'm sure some other posters can tell you more.

Here's another website with helpful information (you should find lupus information and information about convincing yourself to use some mobility assistance. Think of the wheelchair or ecv as a tool (similar to glasses) that help your body to do something that you have a hard time doing otherwise.

 

[tinksfriend]

Could I jump in with the 'point of view' of the 'Spouse' of someone with disabilities!
DH has MS and cannot walk far at all!
Before he 'gave in' and started to use ECV's I 'dreaded' going anywhere with him! Not because I was embarassed but because I would worry constantly that he may fall over or not be able to get back from where he'd walked to!!

Shopping trips, Disney trips, any trips are now worry free for both of us! I understand the need to not 'give in'. It's a BIG thing!! I am lucky that DH also understood my need to not worry constantly when we were out. He now says he wouldn't ever consider not using one for Disney etc.

People who 'pass comment' are just 'Entertainment' for me!!! Bring on the comments!! Who's going to look more stupid us or them??? NO CONTEST!!!!!

 

[dclfun]

I agree with Andrew's perspective. I have ALS ( Lou Gehrig's disease) and will be in a wheelchair on a ventilator for the rest of my life. I'm also on tube feeding and use a laptop to speak, so people stare at me just out of sheer curiosity at my gear....but I've never and will never consider myself "disabled". I just need these things in order to function and enjoy life like everyone else.
You'll be at Disney to enjoy your vacation, so do whatever you need to function and have the good time you're entitled to. Often people stare out of curiosity ( and as Sue said, sometimes they make ignorant comments) but they shouldn't be your concern or priority.
Staying at a WDW resort will make things easier on you due to transportation issues. I'd get a length-of-stay ECV rental and save your strength and energy. Get a GAC if necessary with instructions to allow you to wait in a shaded area.
I doubt insurance would cover an ECV rental. If you have a chronic disabling condition, most insurances would cover a purchase if that's something you've considered to help you in "daily life". Your physician would need to write a prescription.
Hope you have a good time, and please report back about your trip. Hopefully this time you won't need physical therapy to recover from your vacation. ---Kathy

 

[cupcake]

I have extra bones in both feet and thus can walk for about 90 minutes tops w/o significant pain. I rented a wc for years and then tried an ECV (from Walker) last year when my dh was at a conference and couldn't push me all the time. It felt weird for a tiny bit, but I *LOVED* the EVC. It (unlike the wc) made me independent. I could go anywhere and do anything! For the whole day! How amazing. Re thinking people are looking at you, I feel there is no reason to let other people's cluelessness ruin your vacation. Most of the time, I think we are more sensitive to what other people are thinking and impose our own thoughts on them (i.e. "oh, X is looking at me, she must be wondering if I really need the wc" when X is really thinking "gosh, should I go get a soda?"). If someone is rude enough to think/say something bad, their ignorance is just that, ignorance, and not a reason for you to not enjoy your day by using a wc, scooter, or whatever it takes for you to get around and do what you would like to do.

As I noted above, I rented from Walker. I understand that Randy's is a bit less expensive but you have to be there to have the scooter dropped off/picked up. The offsite EVCs are much easier to drive (3 wheels) than the WDW ones (4 wheels, larger, slower) and no worries about them running out, plus you have it to enjoy outside the parks. I tended to park outside shops to get up to stretch, didn't want to do it for mainstream lines bc line length can be deceiving and I wasn't going to waste my standing time waiting in line.

Re sun sensitivity, you may wish to search, this has been discussed before. I have medication related photosensitivity. Appy lots of block (I like Fallene, which is gloppy but has a physical blocker so works better than plain high SPF), use a hat, dress appropriately, and plan your day to avoid being in sunny areas during the middle of the day. If you still have problems, you can get a GAC for avoiding sun in lines. I never did bc I find that the lines aren't the issue, just travelling outside is. Also bring a towel to sit on-- more comfy, you can identify your scooter if you get up, and you can drape it over your legs for addl sun protection if necessary.

Please feel free to ask any other questions re the scooter (or wc use). It is the best $35/day I ever spent. My motto: no guts, no glory! Do what you need to do to have fun.

Cupcake

 

[tink2dw]

We went to WDW in 2001 I tryed to walk but I hurt so bad and was so cranky. In 2003 we went to DL and I rented an offsite ECV. What a DIFFERENCE!! I didn't hurt. I wasn't cranky. Even my 16 yr.old said,"Mom,you aren't cranky this time." That says it all. Everyone enjoyed the trip so much more!!