Newly in a wheelchair and a bit lost

[MackenzieFL]

Hello all. I have been eagerly awaiting my trip the end of this month, but new developments in my health have me requiring a wheelchair.

I was in the hospital for a while and was diagnosed with sarcoidosis (auto-immune disease, mine is in the lymph nodes all over my lungs). So my legs work and I can stand and walk slowly for a while-- so I don't need a room with a special shower or anything.

But even going a block or so and I can't breathe and get heart palpitations and my blood oxygen can get low and heart rate increases.

So the hospital released me with a wheelchair, and they gave me a wide one which was all they had I'm not that skinny but I could have fit in a regular one, I thought it would be more convenient, but they didn't have any so it was either take what I could get or go buy one myself.

So I'm worried now about my trip because this is all new to me and I'm overwhelmed and don't even know what to expect, I never thought about it.

We are using disney motorcoaches for our trip, staying at PORS.

I'm worried what if the chair is too wide to get in (it's 32 inches exactly, I keep reading 30" is max). Can I load myself and the chair separately? Or fold up the chair and sit in a regular seat? Can they not let me ride? I'm scared of that happening.

I can get in and out to get on rides but I'm not even sure where to go. Would I need a GAC card? I only have a vague idea of what they are and have no idea how to get one.

I like to get out when I can obviously to stretch my legs and back, especially to go sit in a regular chair at a restaurant instead of trying to maneuver through with a chair-- can I leave the chair where strollers are or something?

Do I have to worry about it being stolen?

Sorry if I'm asking things that have been covered to death here... please bear with me. I'm not even sure which threads to start reading here-- between trying to figure out the trip and learning about my illness I am a bit frazzled from information overload.

Thanks, any point in the direction I need to go for info is appreciated.

 

[dawnball]

I'm worried what if the chair is too wide to get in (it's 32 inches exactly, I keep reading 30" is max). Can I load myself and the chair separately? Or fold up the chair and sit in a regular seat? Can they not let me ride? I'm scared of that happening.

You'll be fine. You can load yourself and the chair separately or together. They'd probably rather that you fold the chair and sit in a regular seat. If you're traveling with friends/family, you can walk on and have them maneuver the chair on.

I can get in and out to get on rides but I'm not even sure where to go. Would I need a GAC card? I only have a vague idea of what they are and have no idea how to get one.

You shouldn't need a GAC. You can stop by guest relations in any park and get a map that will give you information about each attraction, and they'll be happy to answer any questions that you have. I found it was easier to just ask someone at the attraction where I should go.

The accessible lines are sometimes faster and sometimes slower than the regular line - it just depends on how many people using assist devices need to load ahead of you. For 95% of rides, you can take the wheelchair right up to loading, and then pick it up again when you get off the ride. Some of the lines can be surprisingly long (in terms of distance) and I found myself walking more short distances than I expected, so I usually took the wheelchair into the line. If I wanted to walk more, I could always push the chair a bit.

I like to get out when I can obviously to stretch my legs and back, especially to go sit in a regular chair at a restaurant instead of trying to maneuver through with a chair-- can I leave the chair where strollers are or something?

Yup. Sometimes there's separate wheelchair parking, and sometimes it's easiest to just park with the strollers.

Do I have to worry about it being stolen?

Stolen, not particularly. Moved is somewhat likely, but a CM is usually around to help you find it again. Mistaken is also possible - you could tie something bright to the wheelchair to help prevent that. My husband was my preferred chair-pusher, and he was of the opinion he'd rather have a wheelchair stolen than to have a balloon flapping around - but some people seem to like balloons.

 

[MackenzieFL]

Dawnball

Thank you so much, you've really helped put my mind at ease. I was getting a bit panicky but this looks like it's not going to be too hard at all.

Yes, I'd actually rather use it as little as possible-- not only because I don't want to take up limited spaces that someone else needs more than I do.

I can bring it on/off buses folded, I can park it to go in restaurants or shops or shows, I can even probably wait in short lines/fast pass lines without it... I just need it for those long stretches of walks between places, or long stand times like parade waits.

I can't thank you enough for the info and for setting my mind at ease. :

 

[peemagg]

I have another suggestion for you to think about. I am assuming that the chair that you have is a heavy, run of the mill chair. It would be hard for you to self propel for any length of time, and would be hard to push for the person with you.

I suggest that you rent an ECV (or aka scooter) from an off site company like Apple Scooters for use in the parks. It would allow you to have the same use as a wheelchair, but would be easier on you and the people with you. It can be used easily on the buses and most any other transportation you would use.

 

[dawnball]

I get anxious every time I have to use a wheelchair at Disney. I don't normally need one, and it freaks me out.

But, I have much better trips if I use one.

I'm not willing to use an ECV (for a whole bunch of reasons), but on my last Disneyland trip, I did find it useful to rent an offsite, lightweight chair. It rolled so much better than the rental ones, was more comfortable and is fairly inexpensive.

I hope you have a great visit.

 

[Sadie22]

Have you looked into whether your health insurance will cover the durable medical equipment you need? I know when DS had a broken leg, insurance paid to rent a wheelchair for as long as he needed one.

That being said, a family member needed a wheelchair recently, and someone bought a really nice one off Craigslist for under $100. I also saw one that appeared to be in great condition sitting at someone's curb next to their trash cans. I think (I hope) it had a FREE sign on it. It was gone when I checked again. There are agencies which accept donated equipment, and there are agencies which lend equipment.

I'm just saying there may be opportunities to get equipment in the correct size at minimal cost, so you need not feel you are stuck with the large chair.

 

[MackenzieFL]

I have another suggestion for you to think about. I am assuming that the chair that you have is a heavy, run of the mill chair. It would be hard for you to self propel for any length of time, and would be hard to push for the person with you.

I suggest that you rent an ECV (or aka scooter) from an off site company like Apple Scooters for use in the parks. It would allow you to have the same use as a wheelchair, but would be easier on you and the people with you. It can be used easily on the buses and most any other transportation you would use.

Thanks for the advice, but that's not an option for us. I lost a lot of work being sick, being in the hospital, recovering from surgery, etc. To add hundreds of unexpected $$$$ to my trip now at the last minute wouldn't be feasable. The only reason we're still going is that everything was already paid for before I got sick & we have the free dining and everything.

Between my husband (who's a really big guy), 23 yr old daughter & 2 teen boys (who are bigger than me now, they take after their dad), they can take turns helping me get around.

Thanks for the suggestion though. Something to consider maybe in future trips (though hopefully I won't need it by then).

 

[MackenzieFL]

I get anxious every time I have to use a wheelchair at Disney. I don't normally need one, and it freaks me out.

But, I have much better trips if I use one.

I'm not willing to use an ECV (for a whole bunch of reasons), but on my last Disneyland trip, I did find it useful to rent an offsite, lightweight chair. It rolled so much better than the rental ones, was more comfortable and is fairly inexpensive.

I hope you have a great visit.

Thanks again, Dawnball. Yeah, I'm not even kidding myself, as much as I wish I didn't need it I know I'm not getting up Main Street without it. The Dr wants me to try walking as much as I can every day, but not to the point of exertion, and I still have trouble getting up and down the block.

Thankfully our kids are big at this point-- my 15 yr old is almost 6 feet, my hubby is bigger, my daughter is an adult, even my 11 yr old is almost my height and I'm 5'8"-- and they're all strong & healthy.

So instead of having any 'little ones' to look after, I have 4 'big ones' to look after me. That's going to make it easier.

Thanks again!

 

[MackenzieFL]

Have you looked into whether your health insurance will cover the durable medical equipment you need? I know when DS had a broken leg, insurance paid to rent a wheelchair for as long as he needed one.

That being said, a family member needed a wheelchair recently, and someone bought a really nice one off Craigslist for under $100. I also saw one that appeared to be in great condition sitting at someone's curb next to their trash cans. I think (I hope) it had a FREE sign on it. It was gone when I checked again. There are agencies which accept donated equipment, and there are agencies which lend equipment.

I'm just saying there may be opportunities to get equipment in the correct size at minimal cost, so you need not feel you are stuck with the large chair.

Thanks Sadie; The dr wouldn't release me without a wheelchair, and they had what they had that day. Admittedly-- it's roomier than I need but they didn't see it as an unreasonable 'upgrade' for my height/weight.

Normally a wheelchair wouldn't even be covered for my condition, and I'm still not even sure if they're going to approve it. It's just in with all the other bills. When the doctor found out I don't have a car and I walk/take buses everywhere he was adamant. He didn't want me passing out while I tried to get to my appointments. But most people with my condition/situation who have a car would have just been told to take it easy and not walk around as much, and would have been fine for getting around to the store or home or short errands without a chair.

It's expected to be just temporary so I hate to go crazy at this point trying to convince them I need something better. I had to heal up from the surgery before I could start the new treatments, and my post-surgical visit is a couple days before we leave, and I should be starting treatments after I get back-- which means getting back to my old self hopefully in not too long.

So at this point I've just resigned myself to stick it out until we see what happens with treatments. We might have to pay for this chair as it is, I hate to go pay for another one, especially when there's a possibility I won't need it anymore in a few weeks.