dh says all or nothing.

[Deesknee]

Actually, Dh says stay in the chair.

I am blessed to not have to use my chair constantly. It helps if I push it when I am able to walk. But, I may need it without notice, at any given moment. Problem is dh gets embarassed when we are pushing an empty chair or if different people are getting in or out of the chair. Apparently, he thinks people will think we are faking to get some type of advantage. I tell him not to worry what other people think, that that is their issues. I just cann't convince him. He gets silent when I get out of the chair. It ruins the fun for many of us. How can I convince him, it's not a big deal. I love to walk, just not always an option.

 

[Tinker'n'Fun]

Maybe you could get him to compromise. Tell him that only you will use the chair and stick to it, no none else in the chair. Make a schedule so that you can get some walking also. Even if you say for at least an hour a day, I need to walk.

And this is my experience.. I tend to forget that DH has feelings too. I often push to do things and he feels uncomfortable. Whether or not the feelings are warranted, he is still feeling them. Many times I sit back and put myself in his shoes, and it really helps to make the big decisions.

 

[jmartinez1895]

Tell him taht your just going to explain to people that HE has issues and thinks that his invisible friend is with him. Seriously, I think the suggestion above is good. Also I know you said that you may need it at any moment, but could you park it and walk a few feet and back so you can streach your legs with out pushing the chair and if you needed to sit down and have him bring the chair to you? U hope more people can pipe in and give your there thoughts as well.

 

[AJKMOM]

We got a walker with a seat for my father at Sams Club. It was about $100. He could use it to walk, and then sit when needed.

 

[sue and co]

I understand how you feel - I use a chair some of the time but not all of the time and sometimes DH finds it awkward especially a couple of trips ago when DD1 hurt her foot and occasionally took a turn in the chair because she was in pain. Could you try to use the chair most of the time but just sometimes leave it parked (not allow anyone else to use it) and go for a short walk with the proviso that if you needed it someone could run and fetch it?

 

[cm8]

seems like his mind is made up........If the chair is an issue for him and it causes you a , then I would say that you should rent an ecv ( if possible).

It is not easy when someone you love hates what other people think about "YOUR" situation......... I would also say if a rollator is an option, you may want to consider getting one as well, they are really lightweight and come in handy for a moments notice!

 

[Deesknee]

Thank you everyone for your suggestions. I don't have pain. (I know I am blessed). When my condition is bad I stagger, sway, tip over. Much like someone who is intoxicated might. I can usually get out of my wheelchair with some help. I can usually get to a bench. I can usually transport on and off, with a hand, the ride. If an area isn't too confusing, (high sensory confusing), I can walk. For instance is mainstreet is slow, I could use my chair for a little balance & walk a good portion without needing to sit. Walking this strip is important to me. I'm sure many of you understand there is a big difference between looking at things standing vs. looking at things from a chairs view.

I will discuss with him in advance, how he would feel if only I use the chair. But still push it myself on occasion. DD will be 7 next time we go, she should be able to deal with not sitting while we tour the parks.

When we went last year (1st time with my disability), when people would ask how the trip was, part of my response was, how patient dh was with my situation. I guess, I just have to be more patient with his discomfort.

Although, I do like jmartinez idea of saying dh has an imaginary friend he is wheeling around! DH has a great sense of humor. I think I will mention this to him.

 

[clanmcculloch]

I think your husband is experiencing what many of us who have family members with invisible disabilities experience using our GACs and what people who need ECVs who happen to be heavy experience as well. We worry about the looks and comments from people who know nothing about our lives. It shouldn't bother us but it does. It really does take time to develop some thick skin when it comes to this sort of thing. What most of us finally come to the realization of is that we are never going to see these people again so we have that "aha" moment where it hits us that these people don't matter to us. Who cares if somebody else chooses to ruin their vacation by inspecting what other people are doing? If they say or do something that directly affects my child then they're in for trouble (mamabear coming out) but for the most part, they're just grumbling to themselves which I've learned to ignore (yes, that's hard to do and takes a concious effort).

With the kinds of issues you described, I would discourage the use of an ECV. It sounds as though you might have some moments where you lose your orientation and you really don't want to be in control of an ECV if this happens. In addition, you can't walk behind the ECV using it as a walker. What you're describing is wanting the ability to use the wheelchair as a walker at times when you're doing well and when you're just strolling and taking in the sights. A wheelchair really does fit this much better than an ECV.

I'm actually surprised that it isn't obvious that you're using the wheelchair as a walker if our walking is as you describe it. I would think that you're walking quite slowly and clearly leaning. You're not using an ECV which is what most uneducated about disabilities people gripe about. When you're getting up you need help so it's clear that you're not using the wheelchair just as an accessory. If your DH is REALLY concerned, you could have some fun t-shirts made up with cute logos saying fun things about your disability.

 

[Deesknee]

I think your husband is experiencing what many of us who have family members with invisible disabilities experience using our GACs and what people who need ECVs who happen to be heavy experience as well. We worry about the looks and comments from people who know nothing about our lives. It shouldn't bother us but it does. It really does take time to develop some thick skin when it comes to this sort of thing. What most of us finally come to the realization of is that we are never going to see these people again so we have that "aha" moment where it hits us that these people don't matter to us. Who cares if somebody else chooses to ruin their vacation by inspecting what other people are doing? If they say or do something that directly affects my child then they're in for trouble (mamabear coming out) but for the most part, they're just grumbling to themselves which I've learned to ignore (yes, that's hard to do and takes a concious effort).

With the kinds of issues you described, I would discourage the use of an ECV. It sounds as though you might have some moments where you lose your orientation and you really don't want to be in control of an ECV if this happens. In addition, you can't walk behind the ECV using it as a walker. What you're describing is wanting the ability to use the wheelchair as a walker at times when you're doing well and when you're just strolling and taking in the sights. A wheelchair really does fit this much better than an ECV.

I'm actually surprised that it isn't obvious that you're using the wheelchair as a walker if our walking is as you describe it. I would think that you're walking quite slowly and clearly leaning. You're not using an ECV which is what most uneducated about disabilities people gripe about. When you're getting up you need help so it's clear that you're not using the wheelchair just as an accessory. If your DH is REALLY concerned, you could have some fun t-shirts made up with cute logos saying fun things about your disability.

You hit the nail on the head. I never use ECV's. I don't know yet what GAC's are yet. I walk very slowly & determined. Even at a good moment it takes a concentrated effort not to tip, concentration on my end, but not always obvious to others. Especially if it is a windy or rainy day. I love making matching tshirts (although lately they tend to be crooked). This is going to be a silly tshirt trip. THANK YOU SO MUCH! tears of happiness. You helped to make at least 1 day more magical!

 

[kwitcherkicken99]

Actually, Dh says stay in the chair.

I am blessed to not have to use my chair constantly. It helps if I push it when I am able to walk. But, I may need it without notice, at any given moment. Problem is dh gets embarassed when we are pushing an empty chair or if different people are getting in or out of the chair. Apparently, he thinks people will think we are faking to get some type of advantage. I tell him not to worry what other people think, that that is their issues. I just cann't convince him. He gets silent when I get out of the chair. It ruins the fun for many of us. How can I convince him, it's not a big deal. I love to walk, just not always an option.

Even though I can see where your DH is coming from, I think you need to tell him he needs to realize that even you need a break from your chair!

I'm with you, who cares what other's think!

You need to do what is best for you, and I can imagine you need a good stretch every once in a while. He should relax and not worry about what other people think. You can't tell if a person is disabled by looking at them! You can never tell what is going on on the inside, and the people who cast stones should spend a day in a chair and see what it's like.

You'll have to transfer from your chair on some attractions anyway, so what's wrong with walking a few feet every once and a while. If someone is rude, tell them to walk in your shoes for a few hours. See how well they'd get around in a chair with minimal assistance. Betcha they won't make it 1 lap around MK's hub.

Try to relax and enjoy your vacation!

 

[OneLittleSpark]

Huge hugs ! It sounds to me like your DH is worrying because he doesn't want anyone to say or do anything which might upset you during the trip. I know that my partner tends to feel things 'on my behalf' a lot, and he gets most upset when he can see that I'm stressed or miserable. Maybe if you have a bit of a talk to him about it, and both try and be as open as possible with your feelings, that might help him relax a bit (I know it's not always easy getting guys to talk about their feelings, especially if they think that it might upset you, but it's worth a try.

You might want to put some kind of weight on the seat of your chair when you're pushing, to stop it tipping over. Your balance is likely to be more compromised than normal in the tiring and over-stimulating world of Disney, so you'll need to take extra care. Putting the family backpack on the seat will hopefully be enough to stop the chair tipping backwards if you suddenly put more weight on the handles (yup, voice of experience talking here ). If you need the bag to be heavier when on the seat, and lighter when it's being carried, you can put a few large water bottles in it, which you can fill and empty as needed (also means you have something to drink in line!).

As to fighting the looks, I find that people are a lot friendlier if your chair is decorated up. I guess it's that they spend so long looking at all the cool stuff on your chair, that they don't have time to play the 'judgment game' . Anything like ribbons, tinsel, beads or fabric can be wrapped around the frame or through the wheel spokes nice and easily; the Spokey-Dokes they sell for kids' bikes will also fit on standard spokes of a self-propelling chair; you can print up signs for the back of the chair with Disney characters or slogans on (if you go for paper, make sure to laminate it!); and you can even make your own seat and cushion covers, if you're good at sewing. For my last Disney trip, I managed to find a set of solar-powered outdoor fairy lights, which I wrapped all around the frame of the chair. I also had those flashing LED necklaces wrapped through the spokes of each large wheel, and we told people that I was an experimental mini light parade .

No matter how cool you make your chair look, or how much you're wobbling when you walk, or how much time you spend in the chair, there will be idiots who will be thinking stupid little thoughts in their heads. Thankfully, most of them keep them there, locked away in their heads, but there will be the odd jerk who wants to let you know how they feel. I've not yet had anyone actually say anything to me, but I have noticed some of the looks and tuts and other such unspoken comments. For these prats, you need to employ that wonderful sense of humour your hubby has. My fella and I have found that we have much more fun when we laugh at these idiots, rather than taking them seriously. One of my favourites was when I was wheeling fast down a hill (very few crowds, and all perfectly controlled, of course) and someone tutted at me. I then shouted to James that I just got tutted at for having too much fun, because obviously real wheelchair users all look miserable the whole time!

Another one we enjoy, is laughing at people who treat me like $£*& when I'm in the chair, by leaning over me, barging me, shoving me out the way, etc etc. We often joke that I should lick the next person who leans over me, but I'm worried that I might catch 'stupid'. Another fun one is to wave madly at them and go "Help, have I turned invisible again?!". Yup, I'm an evil wheelchair user .

We also have the 'Moron Scale' for rating the people who cut me up in my chair. It ranges from 1: "slightly dim move, but understandable with the Disney magic", to 5: "leaping in front of the chair then stopping dead, and glaring when you hit them". Just yell out the numbers when you find them, and they won't have a clue what you're talking about!

At the end of the day, only you and your family know what you need, and only the opinions of you and your family matter. I know that that's a heck of a lot easier to say than it is to accept, but it's an important thing to remember. I've heard a statistic that states that approximately 83% of long-term wheelchair users are partially mobile, so if that's true, you're certainly not in the minority. Also lot of people use mobility aids at Disney, who wouldn't need them normally, because there is just so much walking in Disney. Before I developed my disability, I spent quite a few Disney trips in a wheelchair, due to ankle injuries, though I didn't need one in my day-to-day life.

OK, this is all slightly garbled, but basically - go along and have fun! Most of the people there won't even give you a second look, as they'll be too busy having fun. Those who do decide to pass judgment on you are morons, and are not worthy of your time and attention.

Hope you have a great trip!

 

[toocherie]

We also have the 'Moron Scale' for rating the people who cut me up in my chair. It ranges from 1: "slightly dim move, but understandable with the Disney magic", to 5: "leaping in front of the chair then stopping dead, and glaring when you hit them". Just yell out the numbers when you find them, and they won't have a clue what you're talking about!

LOVE IT! Can I borrow the "Moron Scale"?

 

[OneLittleSpark]

LOVE IT! Can I borrow the "Moron Scale"?

Feel free! Use it and spread it through the disabled community! Soon TABs (Temporarily Able Bodied) everywhere will be having numbers shouted at them, when they act like idiots!