Help me get to WDW, let's brainwave on some technical wc stuff

[madenon]

There are a lot of you out there with enough experience, so maybe you guys can help me have a great idea. I've got a powerchair, which I'll need to be able to do WDW at all. Just one "small" problem; it isn't fit for me to use at the moment and if I wait on the official way to get things fixed, I'm lucky if it's done in about 4 months. I made up my mind; I want to go to WDW, I need to go, period. No annoying official is going to stop me.

We've been able to change some things, which now "only" means giving up about 25% of funtime, apart from the normall cut downs due to normall pain. (which was at least 75%, so that's a great profit!) I'm not happy about the 25%, but it's better than no WDW at all by far! The thing I still absolutely have to fix before being able to make the trip is fixing the problems with the footrests. At the moment, they can't go any lower than about 3 inches above the floor. That would mean a bit of a problem getting in and out of the chair, because I can't fold and unfold them on my own strenght.

So I've been thinking; the day before going, I'll ask my dad to loosen up the screws holding the footrests. They can't come down more than in an angle of 90 degrees, so that's no problem. If they're loose enough, they'll simply drop down out of themselves or with the least amount of tipping them at worst. This will solve the problem of pushing the footrests down. It also more or less resolves the problem of pushing them up. OK, it'll cost me more pain, but at least I'll be able to get them up.

Leaves me with only 1 detail; how to make sure the footrests stay up when I need them to stay up (while making transfers)? The footrests on my manual is pretty loose and I know how irritating it can be to have them keep falling down when you don't want it, not even mentioning the fact that on the powerchair they are situated in such a way I won't be able to put them up like 8 times for each transfer. So I need a great for securing the footrests in place when needed, that'll be very easy, not needing any strength to "switch off" when wanting the footrests down.

I've been thinking about using magnets, putting one on each side of the footrest and one on each side of the legsupport which touches one and other if the footrests are up. Great for keeping it in place, but it takes to much strength for me to unlock it multiple times per day.

A strap or string isn't an option either, as bending over is a move I shouldn't be making. So it should be a trick thingie I'll be able to ajust/use with my feet or leg. Any of you got any great ideas?

 

[Cheshire Figment]

I've been thinking about using magnets, putting one on each side of the footrest and one on each side of the legsupport which touches one and other if the footrests are up. Great for keeping it in place, but it takes to much strength for me to unlock it multiple times per day.

I was thinking also for a magnet until I saw this part.

However, you were thinking a magnet both on the footrest and the frame. Since there would be two magnets the attraction will be very strong.

How about a magnet on the footrest or the frame, and if the other part is not steel just attach some steel (using superglue) to that part?

 

[madenon]

Now, this is why I love the DIS! What a simple yet great idea, Cheshire! We're definately going to try that one. We were also thinking about using a very small strap (because the smaller, the less power you'll need to get it loose) of velcro, but this sounds even better. If the one magnet thing works, we could do it in such a way it can be hidden when not using, which the velcro can't be.

 

[pugdog]

Velcro

 

[SueM in MN]

I would check with the manufacturer before using magnets on a power wheelchair. You do have a computer that controls the joystick and electronics in the joystick itself. I would be concerned about using magnets on anything too close to either of them.

 

[madenon]

Hmm, good point Sue! Contacting the manufacturer (or better said; dealer. Manufacturer resides in Sweden, and my swedish is worse than the Swedish Chef's english ) is of no help, unless I am in the mood for listening to "we don't know, can't help, don't know, who knows, it'll take months".

We've deserted the magnet-idea for now anyway. Also the velcro is kept as a last resort. It's an option, but would also mean risk of damaging my skin. We're trying a solution as simple as a few screws and strings! We keep thinking simpler and better. Attach a string to the backside of the footrest by using a small screw. Attach the other part of the string to a screw on the armrest. Pull the footrest up by simply pulling the string (now easy because of loosening the bold -spelling?-). The string will have an extra loop in it, at exactly the right point. By simply putting the loop over the screw on the armrest, the string and screw should keep the footrest up.

Sure, I've got a few strings extra and for those folks running into me from the frontside it'll mean they won't be happy. But than again; rather they might injure themselves, than injure me.

We keep getting smarter and smarter on this. Turns out the chair also has bolds and screws that are too small, and therefor all kinds of parts keep crashing down. Special bolds and screws are ordered by now, but getting them and getting them put on will take months. In our system, you're not allowed to change the chair in any way, because it's not owned by the user but by the council. A bit like lease, but without paying for it. So we have to keep looking for some quick fixes that are allowed and don't "damage" the chair. You don't want to know how much glue, strings and screws are being used here. Got a whole list ready again for monday, to ask permission to d-i-y the chair.

 

[dclfun]

I was also thinking of using long straps, which could be attached to the footrest then the side of the chair within a metal ring or clip of some sort to keep them from dangling and getting caught. The straps could be attached to the footrests in such a way that they can be pulled up. Since everything could be attached with the heavy-duty velcro, then it wouldn't damage the chair and could be easily removed. The other thing to mention is the door at your resort. If you are travelling independently it may be impossible to open the door and get inside the room or to get out of the room because the door will be difficult to open. You can ask for the closure bar at the top of the door to be removed, thus allowing it to open freely. Once this is done though, the door will not close automatically so you'll need to be careful to shut it. I use a strap on the doorknob which my SD then closes....but if you are able you could use a strap to close your door, making it a length that will be reachable. You may want to measure a strap and practice on a door at home to see what would be a good fit. ---Kathy

 

[madenon]

Hi Kathy, thnx for the tips. At home I've got electrical doors with remote control (love them!) and sliding doors, so I looked into this early on. I knew I could get the closure bar removed, and will definately ask it to. Good tips for trying out some stuff at home to close the door. It's not like a absolutely can't close them myself from my powerchair, if I absolutely have to, I will. It'll just mean dislocating some stuff, so I try to avoid that. Straps have the same effect (my joints give in easier than a door will ), but will come with the benefit of being able to get some extra support by keeping my arms closer to my body and chair. Combine this all with my specialty of mastering doors with my legrests and I'll be confident I'm not spending a whole day fighting the door. And if so; I'll just have to yell out the window.

Never though about trying out some stuff at home, silly of me. I'll be trying now, though!

(and hopefully on my next trip to wdw I'll be bringing along straps for doors etc. for a sd. I've got the go-ahead from the occupational therapist and from the sd-organisation, so now it's waiting to see if my healthcare will ok it -it's a 3-stap-programm overhere to get a sd and get it covered-, and than the big wait is on!)

 

[SueM in MN]

If you have any way of posting some pictures or even telling us what chair you have (even if the website is in Swedish, they might have some pictures), it would be helpful.
My mind is very distracted right now to try to see what you are saying, but I am good at coming up with solutions usually. A picture would help me.
Thanks

 

[madenon]

Be carefull what you ask for, Sue!
I've got a permobil c500s with the KB-system. If you need more info, you can check www.permobil.com. There is an american part of the site, as they are also available on the us market. The KB isn't out in amerika (yet?), the only difference with the standard c500 is the back (got joints in it and justable straps instead of a fixed shell) and the biomechanical system.

Pics coming up! The problems that definately need fixing for me to go to WDW is the footrest-thingie which I'm quite confident will be solved with the straps.

As you can see, they were smart enough to put the legsupports on crooked. You would think that 2 professionals together would be able to put them on correctly, but I guess I have high standards. Made picture for my legal battle over the chair, than had dad put it right.
As you can see, the footrests don't come anywhere near the floor. This is the lowest position allready. Upside; enough space beneath there to ajust a small screw (using glue) or velcro to attach the strap.

See the small (well small?) box on the right arm-rest? (for us, the left) That's the controlbox for my boincing. Nice thing, but one small problem; you just try using that round silver coloured button multiple times a day when it's in that place and you need a lot of strength to use it. Won't be fixed before WDW, aren't allowed to let anything done myself. I'm hoping for less bumps in the road at WDW than the pebbles we're used to overhere (which I am positive of with all the concrete), but it'll still mean some more pain. Will just have to spend more time relaxing by the pool or something.

See the bolds in the red cirkels? They're T-shaped, and should fit this hole and the one on the inside. These are the bolds that are to small, and therefor the armrest keep crashing down at least once a day. Want to get permission tomorrow to use glue and some small pieces of wood to make a "guiding rail" so the bold doesn't slip out of place constantly. This has to be fixed before going to WDW.

Again; enough space to attach straps and an extra bold to hold it.

The back should be fixed, it's killing me. The cushion needed isn't available for months to come.

I still lack support in my lower back. Tried all kinds of pillows, but the keep having the wrong shape or thickness. I'm thinking about going back to using towels as we did to get the right sizes for The Best Backsupport ever (which they took away for some unknown reason ). It isn't workable to keep putting towels up there, but if I get the right size and shape first, I can think about a fixing system later on.

The back is still a bit too low. It was way too low, so the somehow pulled it up, but that doesn't do good things for the lower part of the backrest. (as in; support lacks more and more) I'm still pondering on this one. Do I let them pull it up more, get the proper height, but less support in the lower part? Do I let them do it temporarely and fight for a whole new backrest, which'll take at least 6 months, or do I leave it like this?

My joystick is killing me. It's to low, too far to the right, to far from the arm-rest etc. Can't be changed before WDW because of the bouncing-box needing to be moved (takes too long) and the needing to order another support to put the joystick in.

The armrests are in a wrong place, which means I'll have to put my arms out too much. Again; shortning the armrests takes to long (how long do they need to saw something in middle? ), and they can't be fixed any more towards the back.

I'm missing proper support between the seating and back. All nice and well if they pick different parts from different brands and manufacturers, because individualy they might offer a fit, but no-one ever looked into the "can we combine these together". This is the cause of most of a lot of the problems.

The biomechanical system in the back isn't functioning perfectly, directly caused by the different system it uses and the KB-back. I hate it, looks like the officials want to keep it this way by saying "oh well, it's like this, take it or leave it" I didn't even want the KB-back, so why I got it?

There should be a gyro-correction (don't know if they call it this in english? It's a system which allows the chair to self correct the path you're driving in if going in a straight line, so you don't sway to the left or right) on it, but in practice I find it lacking. Worse than the chair I had before, which was the same in mechanics, just a lower version without the KB-system. (had a permobil c500s lowrider)

And for desert, the council ordered and payed for different parts and ajustments, that simply were never on the chair eventhough the papers say they are on there. For over $1500,- worth of parts went up into thin air. For instance; I need (and on paper got it ) an extra removable holder for the joystick on the left. Using that, I can simply change the joystick from left to right when needed. One day I'll be fine doing it with the right, the next I might not be able to and need it on the left.

And my last big dislike; just look at it. It looks pittyfull. Like a worn down rag with absolutely no taste at all. Ofcourse that's all not important when fighting to get the chair to operate so I can use it proparly, but I am going to be looking into any option to getting the go ahead on getting it spray-painted myself. Fat chance of that happening, but if you don't try, you'l never know for sure.


(before someone tips me -knowing the DIS, someone will!-;
yep, we'll be putting brigth tape on the 4 transportation strap-down-holes. Just have to go out and buy a nice colour. Yeah, finally some nice colours )

 

[dclfun]

I also have a Permobil C500 but it does look a bit different. Instead of the two swing away footrests I have one solid footplate. It's hard to adjust though and might not work for you- I have it since I can't transfer independently and it keeps my feet in the right place when I'm in the chair. I hope everything goes well for you and I also wish you luck in getting a SD who will make a big difference in your life. As for the looks of your chair- mine is the cranberry red and I don't like the color at all- I've thought of taking it to a shop that paints cars to see if the shell can be painted but don't really have the money to spend on cosmetics. The only other color choices here in the US were gray, a bright blue, or a very bright green-none very pleasing to me. I have an automatic door opener at home as well- too bad they aren't portable but then Skye would not have one of her jobs, which she loves. Can't wait to hear about your trip though- it's very inspiring to know you're coming all this way on your own and have done so much planning to be able to travel independently.---Kathy

 

[madenon]

Hi Kathy,

we've got the same colour choices overhere, allthough the green isn't bright but dark (and they don't have the products needed to make that one anymore ). The permobil-rep just kept saying "yeah, well, we're a universal brand used by male and female, young and old, and we have to offer colours that appeal to most of our clients", but you can't make me believe that a lot of us users out there don't want another colour than what is offered.

I know the red, overhere we call it "rollator-red". "Rollator" is the dutch word for those walking-aids with wheels a lot of elderly use nowadays. Overhere you'll have a hard time finding anyone older than let's say 70 not using a "rollator", and about 90% of them is red. That was reason enough for me not to want that colour. Even my dad said the choices offered, well ehm,.... let's say he agreed they weren't to good. And he has no taste at all, s if even he agrees it most be bad.

I'm in luck that I know some people that can paint the chair for me for a very reasonable price, I just need the go-ahead. Also we've got the benefit of our taxrefunds. We can deduct these costs, and with my income that'll come done to getting back about 25/50% of the initial costs. Not bad! Or getting stuff like this for my birthday, I've got everybody drilled in such a way they know I like pimping up my aids to my own taste.

Your footplate, you mean it's solid as in one part, instead of the two I've got, or is it fixed into one height? Two works out great for me, as I have the tendency to cross my legs and tangle them in somewhere and don't notice it untill I've done too much damage allready. I would love it if they could vary in heigth independantly, but alas.

The trip is a big thing indeed. I've made it my policy to not dream but life as many dreams I've got as possible. Travelling is a bit part of that. I've travelled alone before and that made it that much easier to take the next step to travelling alone with a manual and now with a powerchair. This trip and the pre-fun is mytime, my life. After that, for the coming year the docs and operations will make up my agenda, but who cares? Living dreams gives enough memories and strength to go through the boring times. (and planning the next dream is even better ). Hack, just even being able to finally get out again on my own after all this time is so exciting.

And honestly speaking; this trip will also be a big support on the whole acceptance-part. I don't mind having a disability, I don't mind all the medical stuff, I don't mind my manual chair, but the powerchair? Well it was a touchy subject for a long time and still needs some work. For the first time there was a lot of "now I can't do that anymore" and "I don't want this". I downright hated the chair and all it stood for. Last year I was thinking "no more alone vacations and no more 'out of the ordinary destinations' also". This year I'm going to proof myself wrong and just doing that (even if I will be in a door-fight for 5 days ) will give a lot of power and trust back.

Turns out Disney will only strengthen that effect. The 'simple' fact of the pools being proparly accessible and the slides in waterparks being accessible is a Very Big thing if you're used to our standard of public accesibility. I've given up swimming alone (as in; no help from anyone getting in or out of the water etc.) since 2000, let alone even think about using a waterslide. I don't know if I will even go down a slide (will be swimming!) but just the fact that it's possible is like such a wow.

It's weird in a way. I'm more disabled than I've ever been, I'm going half way round the globe, without a lot of my daily aids and knowing that I'll be in a lot more pain and doing permanent damage but Im very confident that I'll feel like I've got so more options and freedom during my stay at WDW than daily public life offers me overhere. And since my trip to Australia, I've gotten a high standards.

That all being said; your trips have given me that extra boost in trust. If you can do this alone with your disability or even alone with the responsability of a child with you, than my trip should be a breeze! It's your fault that I'm now kinda looking into the cruises for a next time. Haven't even been on this trip, haven't got the money nor time to book a next trip, but I'm infected allready.

 

[dclfun]

I have the same outlook and attitudes on life- why not do the most you can for as long as possible and enjoy each moment ? I feel by having my disability, I've been given the gift of "gratitude attitude" for what I DO have vs. what I don't. My values are such that material things aren't important but time and how I spend it is my most valuable commodity. When my life is over at least I know I won't have regrets. Meanwhile for you I hope you don't have challenges at all at WDW, esp. with that door! As to the footplates, yes they are one piece, solid but alas, not really height adjustable once they've been set. I had trouble with my prior chair ( the Chairman 2K ) with the two footrests becoming loose and sliding down, thus effectively stopping me until someone came by to raise them back up. The solid plate seems to be more sturdy plus if you need to have your feet strapped in it looks a bit better and feels much safer. I think there's a photo on the Permobil site for the solid footplate which they consider an "upgrade option". Let me know what color you choose to pimp your chair, lol!---Kathy

 

[madenon]

If I succeed and get it painted, it'll probably turn out to be something like aqau-blue, lime, purple, that kind of rather noticable colours.

I think I know what you're saying about the problems with the footrests. Since delivery, I've noticed on both chairs (new footrests on both) from day one that when using the lowest position, the footrests don't seem to go down/up in a straight way, but they are jurking a bit. I've been hearing about problems with the footrests about multible brands (puma yes has problems overhere with them even breaking off!), looks like it's a more difficult part to get right somehow.

I know the outlook, it's like I'm reading myself. I've been saying "accept the things I can not change, and change the things I can not accept" since day one. Sure, nobody likes to have a disability or would ask for one, but it's not all bad either. It's given me a lot of good things that I wouldn't have gotten if I were "healthy". The trips, the grattitude, even something close to a cariere (sp?) in a field I'm very good at but would have never thought of or persued if being healthy.

And if struggling with a door is the worst challenge on this trip, I'll have a great trip for sure!

 

[madenon]

Wow, looks like I'm getting my pixiedust.

Overhere, cityhall has to judge claims for certain aids, pay them etc. We have a system with a mayor, 2 "vice-mayors" and the choosen representatives of the different political parties that got a seat for the next 4 years during last elections. The reps make the local laws and rules and the other 3 look over their shoulders to regulate, controle and advise. Also these 3 have all got departments they're responsible for.

Today I had a long talk with the "vice-mayor" in charge of what we call "wmo". (the law which should allow me to get a functional wheelchair fitted to my needs within reasonable time) Unfortunately the person we needed to talk to about this was out when he tried to call her. The phone was on speakerphone, so I could hear everything when he talked to the secretary. "Yeah, we're working on it, she talked to the client just yesterday, she is working on the case". Well let's just say this was enough for the "vice-mayor" to raise his voice that they've been working on it for a year now. He used rather harsh words, telling them she'd better be in tomorrow or someone else who can make this right, because he'll be calling again and aint no happy camper by far.

I'm hearing more about this yesterday, but he totally agreed with me that by now they should stop all the cr*p about policy and just do. They've had time enough to fix this so I can go to WDW and he's demanding them to put it right and correct everything that is wrong before I'm going to WDW. As he put it; "I can promiss you tomorrow there'll be a lot more harsh words said and if needed, I'll have a full blown argument about it. We're paying, they'd better listen. You need to have the chair fixed before the trip and nothing else is acceptable".

By now I was allready ok with a more or less workable solution for the here and now incl. trip and a good definative solution for the end of september. I'm supposed to have a rather big operation by then but with the chair in this state that won't happen. (definately need the chair to be able to recover and not have all kinds of complications) He didn't think that was enough, he is adament that I'm in title to a normall as possible holiday and also need the weeks before the surgery to test out the chair and get used to it in the new state. Which is correct.

Also the mayor herself is filled in about the case now and getting involved. I knew it would pay of one day to do certain volunteerwork and know enough people. She noticed me sitting there and wanted to know what is going on. Definately this complaint isn't left unheared!

I've seen too much promisses never coming to life to do the already. I have to see it, to believe it. But uptill now it sounds very good and much better than anything so far. This gives hope. They have the power to put each and everyone that isn't doing their job in their place and if needed make decissions with big consequences for those involved and he seems to have the spirit to want to not just end it, but end it right and more than asap. A real piece of mind this!