New to the board and have wheelchair ??'s

[jenpace]

First off, I'm so glad to have found this board! I've read a bunch of the posts and this is really a wonderful, supportive group here

My 8 y/o dd has Ehlers Danlos (EDS) which is a connective tissue disorder and mild scoliosis. Up until not too long ago we used our Mountain Buggy jogger type stroller. While she could still fit, she's embarrassed of the "baby stroller" and is asking for a wheelchair to use for upcoming trips to Disneyland.

She has issues with stamina as far as standing for long periods or any walking that goes beyond an average stroll, anything longer affects her with joint and body pain.

My question is about the actual wheelchair. We're happy to rent or even purchase one if need be but as I'm 5' 10" and my husband is 6' 6" I'm wondering if there are any that have an option to adjust the push handle height so the two of us aren't doubled over with backaches after a long day of pushing the chair at the parks.

Thanks

 

[WheeledTraveler]

Welcome!

There are a bunch of EDSers here (although I'm not sure any of us have been diagnosed as young as your daughter) so I hope between the lot of us we can get you some good useful advice.

I'd suggest before anything you ask her doctor to refer her for an evaluation. A lot of adults with EDS actually get told they should have a powerchair rather than a manual wheelchair because of the problems with self-propelling a manual chair. I don't know if this would hold true for a kid, but a wheelchair evaluation will also tell you what manual chair would best suit her. They'll also take measurements so you know what size to order should you then buy on your own. You haven't mentioned an upcoming trip, but the process of getting a wheelchair (especially for a kid) can take months so it's best to start now! The advantages to owning are really that you'll have it for things other than Disney where it might be needed and that you'll know you have something that fits her.

If you rent, you should look for a place that will rent pediatric wheelchairs. The wheelchairs that are rented at WDW and most of the generic "rent a wheelchair" wheelchair and often don't fit small adults well, much less an 8 year old!

As far as push handles, this is a topic that no one has quite figured out yet. I know that on pediatric wheelchairs you may be able to get higher extended handles than adult wheelchairs, but I'm not sure how high. That's another thing to bring up if you get a wheelchair evaluation done.

 

[goofieslonglostsis]

Hi Jennifer,

first up; are you aware of the fact that the scoliosis will be caused by the EDS? Just kaing this quick sidestep because -unbelievably imho- too many folks get misinformed on this subject and start to think 501 things are wrong, when in reality it's one diagnosis causing 501 problems.

There are many types and brands of wheelchairs out there that have height adjustable pushbars. Don't know how your DD is affected in daily life, but depending on that answer you might want to consider finding out if you can get a (partial) coverage for her own wheelchair. With EDS it is so much more important to get her a chair that FITS her. Any non fitting can result into problems. Too little support; chance of (sub)luxation because of the lack of support or her unconciously wanting to overstretch the joint -which at the moment of doing it can feel great, thus the unconcious wanting to do it-. Too much support can cause the chair to (sub)luxate joints. Armrests too high; can cause shoulder, back and elbow dislocations. Too low; same risk. Armrests out too far from her upperbody? She'll reach for them; again not the right way to move about. And the list goes on and on and on. If going down that path; help from an occupational therapist can be a great , provided they either are in tuned with EDS or willing to learn.

There are some great chairs out there that are for one able to provide these options and not the least bit important for a child; can grow along with her. Esp. if you find you'll have to invest in such a (much) more expensive chair, you don't want to have to buy a new one ever year or two just because she grows. I know one of those is the childs chair from Colours (use their chairs myself, so that's why it pops up in my mind) but there are many more out there.

Again, I'ld try to find out what she might or might not be entitled to through your insurance. I'm of NO help in that department, am not from the US. Based on that, her needs and what you can afford, I'ld personally advice to look into the more expensive but better suiting chairs. With EDS you don't want to follow a 'oh she'll grow into it eventually in a couple of years' approach as that can cause problems on the longer run. For a one time use it's not that bad, but a couple of days in a row at WDW could be a pain for her, depending on how precise her body reacts. That's something you might find will chance along the way, so also something to be on the look out for.

Cushions can also make a world of difference for her. Try out different types with her, it can be the difference between pain or not. And relatively easy and affordable to invest in. How did she do with bumps etc. while still using the stroller? A lot of bumping can cause pain and muscle fatigue for those of us with EDS. Simply put that shaking from going over bumps makes the body shake. Because of the EDS that body handle take shaking less than you'ld normally expect. Keeping the joints together at such moments can result in increased usage of the muscles, which in it's turn can cause fatigue, pain etc. In a lesser scenario bumps can even result in dislocations.

In the adult "chairworld" there are some amazing chairs to deal with the latter. There are a couple of brands that offer 1 or 2 point suspention. For me, those felt no different than a chair without. A fair amount of others with EDS do find it a positive difference. There is one brand (colours, US based brand) that offers 4 point individual suspention. World of difference! Amazing, basically. Unfortunately that's not available in the ped. chair world yet as far as I know.

How is her skin? If she's got any of the skin related problems that EDS can come with, the choice of fabric can also be of influence. Skai for instance can stick to the exposed skin in 'warmer' weather. Not what you'ld want if she's got a skin that easily tears. Cottons can be a lot friendlier on the skin, but downside is the time they take to dry after rain hit you. A second cushion cover and back cover can safe her comfort in those situations.


When testing out those height adjustable pushbars; also have her try them! There are some chairs that have them come so low, she could use them herself also if she can walk but needs something to hold onto to make it a bit easier. Sometimes can be a great way of still keeping moving but not overdoing it. If you do want to look into that option; also have her actually walk with the chair, preferably also outside. This way she can test it IRL so see if the chair operates in such a way she can also use it as a fancy walker.

One thing she'll find very important (and she's right ); the colour, fabric, basic look of the chair. Most ped chairs will come with the option of different colours. Depending on brand, type and manufacturer she could have 2 choices right upto "whatever you want is possible". Some options are more expensive then others, so keep that in mind before seeing something online, making a promiss and then finding out it might be too expensive.

Either way, I'ld rather look into doing some "IRL" buy, not an online one. IRL you can have her use it, see how it fits, if there are any things that don't suit her needs etc. Online it's always a gamble. You can take meassurements, but with a first time chair it is way too easy to slip up and end up with a chair that's not perfect for her. Whether you end up going for new or used, I'ld follow the "try before you buy" tactic to death. If you do want to look in new; know that some manufacturers will allow you to try out a chair at home for a couple of days upto weeks before making the purchase (or not). Mostly -unfortunately imho- the more expensive brands seem to do that. It wouldn't allow you to try out a custom built something for her if you'ld find she needs that, but it will give you a good idea whether or not the base concept could work for her.

Hopefully I didn't just make you go "help, what have I gotten myself into!?"

 

[goofieslonglostsis]

A lot of adults with EDS actually get told they should have a powerchair rather than a manual wheelchair because of the problems with self-propelling a manual chair.

IMHO a wrong advice given in many incidents. Until the total picture has been accessed, this can't be truely decided. When given the option, many with EDS do great with a manual chair with psuh-supported wheels like for instance E-motion wheels. Keeping mobile where possible is even more important for those of us with EDS and not using an option when available is doing more harm than desirable on that department. Not even taking into account that besides selfpropelling, there are those out there that do perfectly well moving the chair around by "walking" with their feet or using a combo of that and propelling.

Also it tends to be too black and white. Either a powerchair or a manual chair. In most situations there will be no either if you look at it closely enough. Both options can supplement eachother with both their benefits and negatives. Heck, I've seen too many folks go from "can not selpropell" to enjoying years of selfpropelling, after finally getting a chair that truely fits their needs.

Of course just MHO, but there is way too little known about what proper wheelchairs can do for an individual with EDS and thus what the wrong wheelchair for that individual can cause in terms of harm and damage.

They'll also take measurements so you know what size to order should you then buy on your own.

While this can hold very true for "simpler" problems and those that are not getting their first chair, I would never advice somebody with EDS doing this for their first chair. Measurements are nice and all, but in practice you can find it works different. And then you're stuck with a chair that's not totally right. It really needs trial and error with EDS and with a first chair. Combine the two and that's even more important. You'll want to try the chair out extensively before deciding to order anything.

Another option you'll want to have when buying a chair is being able to have adjustments done "after the fact". When finding a measurement doesn't work in practice, it's a lot easier if you can have that fixed than not. Apparently that happens pretty frequently with EDS folks according to my national dealer that sees a fairly large number of those with EDS. Trial and error until you almost get sick of it and than there it is; the perfect fit.

You haven't mentioned an upcoming trip, but the process of getting a wheelchair (especially for a kid) can take months so it's best to start now! The advantages to owning are really that you'll have it for things other than Disney where it might be needed and that you'll know you have something that fits her.

Totally agree, the benefits of having a fitting chair are enormous.

As far as push handles, this is a topic that no one has quite figured out yet. I know that on pediatric wheelchairs you may be able to get higher extended handles than adult wheelchairs, but I'm not sure how high. That's another thing to bring up if you get a wheelchair evaluation done.

With the right manufacturer/dealer/importer it really is a "customer is king"-world. Can't isn't an option, would be their motto. If not available in the basic assortment, those companies tend to have a way of coming up with an option that works for that individual and producing it for that specific chair. Can be more expensive, but doesn't have to be too shockingly too expensive. Esp. with something as simple as a pushbar, it should be an afforable option.

Just as an example; my chair has pushbars that will be comfortable to use for a child of around 9 years of age, right upto adult of around 1.90 meters. I love my brand of chairs am totally prejudiced towards that brand, but I know many other brands also will offer that option in both adult and ped. chairs. Thankfully!

 

[WheeledTraveler]

A lot of adults with EDS actually get told they should have a powerchair rather than a manual wheelchair because of the problems with self-propelling a manual chair.

IMHO a wrong advice given in many incidents. Until the total picture has been accessed, this can't be truely decided. When given the option, many with EDS do great with a manual chair with psuh-supported wheels like for instance E-motion wheels. Keeping mobile where possible is even more important for those of us with EDS and not using an option when available is doing more harm than desirable on that department. Not even taking into account that besides selfpropelling, there are those out there that do perfectly well moving the chair around by "walking" with their feet or using a combo of that and propelling.

I wasn't saying this was right advice, just that it can happen. I think it can especially happen in the US because of how wheelchair funding works (a lot of insurance companies will fund powerchairs, but not power assist wheels on a manual chair, for example).

They'll also take measurements so you know what size to order should you then buy on your own.

While this can hold very true for "simpler" problems and those that are not getting their first chair, I would never advice somebody with EDS doing this for their first chair. Measurements are nice and all, but in practice you can find it works different. And then you're stuck with a chair that's not totally right. It really needs trial and error with EDS and with a first chair. Combine the two and that's even more important. You'll want to try the chair out extensively before deciding to order anything.

Sorry, I wasn't clear here, but I didn't mean don't get a proper fitting and find the exact right wheelchair and buy from a DME supplier, rather than online. But in my experience, when it's discovered insurance won't pay for it (and I'm not positive that US insurance would in this case) you then have to take all your eval information from the original eval and find a place that will work with you to get the chair that's needed at a price that's within your budget. Scrimping because of money is bad for mobility, but sometimes there really isn't a choice on it.

Just as an example; my chair has pushbars that will be comfortable to use for a child of around 9 years of age, right upto adult of around 1.90 meters. I love my brand of chairs am totally prejudiced towards that brand, but I know many other brands also will offer that option in both adult and ped. chairs. Thankfully!

Out of curiosity who made your manual chair? I've never found a place where I could get push handles that were that adjustable (and I know it's a problem KPeveler has had as well). I'm wondering if it's just that brand or if the DMEs I've worked with have been idiots.

 

[goofieslonglostsis]

I wasn't saying this was right advice, just that it can happen. I think it can especially happen in the US because of how wheelchair funding works (a lot of insurance companies will fund powerchairs, but not power assist wheels on a manual chair, for example).

Oh, I know you didn't post it as an advocate. I was just reacting on it in the same way. Nothing personal, nothing 'this is how it has to be', but as an add on.

Sorry, I wasn't clear here, but I didn't mean don't get a proper fitting and find the exact right wheelchair and buy from a DME supplier, rather than online. But in my experience, when it's discovered insurance won't pay for it (and I'm not positive that US insurance would in this case) you then have to take all your eval information from the original eval and find a place that will work with you to get the chair that's needed at a price that's within your budget. Scrimping because of money is bad for mobility, but sometimes there really isn't a choice on it.

Also no US experience here. Overhere if you get a chair -whether it's covered or bought yourself- measurements will get taken over and over again. Nothing gets trusted without redoing all of the work. Standard protocol for all the 'better' companies. Can only speak for myself, but I've been in the situation of having to pick between 2 chairs and having different measurements for the same part for the different chairs at that same moment. Somehow the same measurement didn't do well for my body.

With regards to the $ for that; I'ld ask around, a lot. I've found many local dealers want $ for any time invested. The manufacturers and importers themselves tend to be more customer orientated. Never cost me one cent to have fittings done with any of them, if I ended up getting their product or not (and went private as I wanted to find my perfect chair before applying, so no coverage for that). Again; haven't got a clue how this is handled in the US, but I would def. ask around about it. As you also said; every cent safed is one you can spend where it's needed.

Out of curiosity who made your manual chair? I've never found a place where I could get push handles that were that adjustable (and I know it's a problem KPeveler has had as well). I'm wondering if it's just that brand or if the DMEs I've worked with have been idiots.

Probably will be DME. Or better put; if they're anything like the knuckleheads we've got working the covered field overhere and should be able to find the perfect chair for each person and are in; yep it's them! My experience is that they know lots about the brands and types they work with every day. Not bad, as long as those products work for your needs. As soon as you fall outside of that box; they know squat. I always do my own work because of that. I test out all kinds of options myself first, by directly contacting dealer, importer or manufacturer. The higher up, the better. (read; the more willing they tend to be and know about the product and it's options) I test, I discuss, I find all the benefits and negatives. I get quotes for each and all of them. With that info I build my own file with proove of why I need chair X. Our system gets you the "cheapest adequate chair" covered. So, I focus on getting the chair that suits me. Next I have proove why cheaper chairs are not adequate. This could be proving they cause graver pain, I can't operate it myself; you name it. I've found folks have much better results when doing all of this themselves and then advocating with the knowledge they've got rather than trusting those that should be able to do the groundwork. Unfortunately IF the DME is anything like what we've got here, you're in for homework.

I've got a Colours Shockblade at the moment. Basically the same as the Colours Boingg! but has some bars removed from the frame. Which means; no place to wrangle my feet into any longer. Had some adjustments done (allthough it's a custom built, Colours offers X extra options and our national importer offers me X + Y offers, ideal!), but it was about 95% perfect for me already which is exceptional in my experiences with finding right chairs. Before that I had the Colours Spazz when I didn't need the suspention yet really. Still use that chair as a back up, hold up perfect after 5+ years. As far as I know all of the Colours chairs come with adjustable height push bars. Since a couple of years they also offer them in quick release.

But others also offer the option. I know of those with EDS in my corner of the world that have a Kushall with the adjustable push bars. Even my bad-bad-bad-for-me first ever chair from Quickie had them. Hardly anything was adustable, but that was. I've seen multiple other brands, both in the cheaper and higher segment, offer them. Can't remember names at the moment, but they're out there. Even if they're not available in the standard, they are so easy to custom make, IMHO. It only takes a "receiver" on both sides at the back of the chair, a bolt (or quick release) and 2 long enough handle bars. Put them into the "receiver", find heigth the pusher likes, and screw the bolt in place so it hold the handlebars. Very sturdy, easy to use and I'ld think pretty easy to make.

It might be a great thing to check out if there is any convention or alike in your "area" about disabilities and aids. We've got a national one every 2 years. I make it a MUST to go. There I can see all the brands out there on every thinkable aid, basically. Test out things, get free samples , network some more and most importantly; I am in controle. Because of this convention, I know what's available on the market and nobody can any longer tell me "it's not available". I know better. It might not get covered, it might need another procedure or whatever, but I no longer believe something isn't available when it is.

 

[KPeveler]

WheeledTraveler - There are several manufacturers that have adjustable push handles in the UK and Europe, but are not sold in America. Quickie is one of them.

Quickie is now advertising adjustable push handles here in the US - DO NOT get them. They are dangerous, painful, and do not go higher than regular ones. My vendor says he will not order them for people b/c they are dangerous.

I am another EDSer, and to the OP, I also suggest making sure any chair you get her FITS her. You can rent pediatric chairs in the Orlando area from off-site vendors. Being too small in an adult chair is painful, so I really would suggest looking for a smaller one.

goofie - Most US insurers will NOT pay for power-assist wheels, so that is why we hear the power-chair suggestion over here more often.

 

[goofieslonglostsis]

goofie - Most US insurers will NOT pay for power-assist wheels, so that is why we hear the power-chair suggestion over here more often.

Aint standard for us either, you'll have to proove why it's needed and the costs are worth it. Unfortunately too many folks still don't know about the option and/or are blown away by the 'not standard'. There are some great reports available (incl. through some suppliers) as to why these wheels are better for the physical wellbeing of the user longterm. This can be an even bigger factor for certain individuals with EDS. Very well put together and all. With that in hand (and obviously individualized reports also) I've hardly seen anybody ever get a no. Even know of somebody that got them covered in Australia, also being told no first.

Same tactics can be used for many other aids and features that aren't 'standard'. Which in and of itself will become something most with EDS will run into at a certain point; not being able to use the 'standard'. I've been amazed by some of the stories abroad of what has been reached by some after digging into the subject.