Monday, June 1, 2009

Supracor: Advice Needed, Please

The cushion arrived. The cushion itself is perfect. But there are new problems because of it.

1. My heels don't touch the platform of the scooter because of the thickness of the cushion (3") unless I wear shoes with a good heel, like my Keens. I'd rather not look like June Cleaver or a hiking version thereof around the house--I can't really see going in shoes all the time; it's not practical. Not having my feet supported well gives me more back pain.
2. I can't use the armrests or the lucite desktop because they're too low. I need the armrests as much as I can use them (they're a little low for me even without this cushion) for support/relief of pain. I might be able to get some padding for the armrests. I don't know. It's possible I could get the post of the scooter shimmed off by our service tech by an inch or so--he said he could do that to give it a slight permanent tilt while in motion if I needed, but I'm not sure if he could shim the whole base.
3. The tiller feels too low.
4. I can't get full function from the tilt-in-space because this means the seatback supports less of my back--I'm sitting higher. And I can only tip back so far this way without straining my neck/back.

But the cushion itself is perfect for my rear and spine and relieves pain. And I can only sit a few hours at a time otherwise, and am in great pain later. Does this help anymore? I don't know. The slimline cushion might give me an inch but is still going to cause a lot of problems--the original padding for the seat is very, very thin. The reduced thickness also means not sitting up as much--I need the padding for my spine and SI joints to be able to sit up.

So here are my questions:
1. Do I live with these additional changes as is?
2. Or exchange the cushion for another thinner one, the Slimline, from Allegro, which will take another month? This cushion might not help as much with pain.
3. Do I make an additional attempt to get a wheelchair, which could be more customized, from my insurance company (info below)? Even if I could get insurance to pay for a wheelchair, would they consider my specific seating needs medical necessity? I can't pay any money out of pocket.
4. If so, should I seek referral from my rheumatologist (who knows my limits) to a seating expert, which I didn't even know about a few years ago, or should I go to a PM&R doctor who works with SCIs and amputees and see if they can make recommendations and give a referral? While I have a PM&R doctor, he specializes in injections and spine procedures, and I don't know that he's prescribed any wheelchairs in the few years he's been in practice.

Sometimes I've shorthanded by saying insurance won't pay for DME--in theory they might, in reality not. Sparing you the long details of insurance bureaucracy, which I'm glad to type out if anyone's interested, I am wondering if I would be more likely to get them to pay for a wheelchair, which can be more customized, if I went directly to a PM&R doctor. Before deciding just to outright shelve and deny my claim, they told me that only PM&Rs and certain physical therapists can prescribe (which I only recently found out is illegal--internists and rheumatologists can prescribe and document medical necessity). I doubt I could get the tilt-in-space function since a friend with very high level of disability can't, even though my seating tolerance is very low. Now that I'm primarily couchbound I may qualify under the Medicare rules my insurance company uses too.

What cruelty, the Medicare rules--how many people are housebound, virtually imprisoned, by such archaic laws that deem if you can make it a very short ways in your house that you don't need a wheelchair, that shopping and medical appointments and participation in the world are not necessary?

I could weep. I have wept. Writers are not supposed to say this. I see why seating is considered an art rather than a science--there are tradeoffs that can truly compromise quality of life. I'm sorry to be a downer. I was thrilled when I first sat down.

Why didn't I get an engineering degree? This really is not so difficult. I know what I need. It's just apparently an impossibility. There are so many wonderful products out there, products people can't get and that inventors can't succeed with. What is the economic and social cost of people being on disability and needing more care rather than being more active? The right cushion and the right ergonomics--basically my home office chair with power, almost--can make a lot of us functioning rather than having to choke down hydrocodone just to enjoy a day out, a day out that will cost days and days of functioning later.

10 comments:

yanub said...

I wish I had advice to give on your seating, but, alas, I have none. But I share your frustration over the poor design of equipment and the arcane rules that keep those of us who need such equipment from getting it.

Wheelchair Dancer said...

hey girl! which supracor did you get?

I use a piece of foam padding on my foot plate -- allows the cushion to do its thing, compensates for the xtra inadjustability of the footplate AND absorbs vibration ... oh so key.

WCD

The Goldfish said...

I have no idea how US medical insurance and social care arrangements work, but it doesn't sound like any of these four problems is something you could or should try to live with. Your needs are not extraordinary - sounds like you've just got a slightly smaller frame than the average your scooter was deigned for (if indeed, it can't be adjusted - I hope that perhaps it might). Another person could be too tall, or too wide, and it is a medical necessity that a scooter or wheelchair user's physical needs are met, simply to prevent further injury and strain.

I think I would be weeping too. Universal healthcare is as fundamental to a fair society as universal education. I do hope that your fellow countrymen figure that out soon - for their own sakes as well as yours.

Katja said...

I've got a 15 (wide) x 18 (deep) Supracore Stimulite XS I'm not using - do you want to try it out? I'll send it to you. Even if it's not the right size, it might give you an idea about whether the slimmer cushion will work for you.

Katja said...

Oh, and since you've had trouble with Allegro Medical, think about switching to Sportaid for your stuff. I've had excellent experiences with them.

Full Tilt said...

Frida,

Have you thought of being evaluated by an Adaptive Seating Specialist w/regard to a custom chair or appropriate cushioning?

I found mine through my regular PT, and she works with various vendors of chairs and related products.

One of your docs would need to write a script for the consultation, and the getting of a new chair is an ordeal, but this specialist may be able to provide pointers to adjusting what you have vis a vis other products...just a thought...

Good luck! Another blogger pointed me in the direction of some online forums for wheelies that may help. I'll send the link via email.

Desi said...

Maybe (when I get a sewing machine) I can make you a cushion.

FridaWrites said...

Oh my goodness, you guys move me to happy tears after a trying day!

First, the good news is the cushion gives me 100% pain relief--meaning words, I don't have any additional pain from sitting up with it, only the pain I'd have regardless, when lying down and can sit up a long time. :) This gives me some hope something can be done at some point.

Second, it was immediately clear that this won't work in the long term or in the short term, that the other ergonomics are too off. My heels don't hit the platform even in the Keens, and definitely didn't hit in Crocs--2" off (husband measured), so big difference.

Thank you yanub--after more calls to insurance and DME providers, I have more to share that affects many people and will do so soon.

WCD, I have the 3 1/2" contour cushion--but I think but am not sure even the 2 3/4" one would be too thick. I love it and don't want to send it back. I'd have to use the sport cushion or very slimmest and am hoping those would give enough pain relief--because what a surprising joy to sit without getting additional pain in my spine--I tried the old cushions (I alternate between two different ones) and felt pain in minutes again. I think that would be too much padding on the armrests or footrest, but that's a good idea that I hadn't thought of; maybe with one of the others cushions.

Thank you Goldfish--I'm actually tall and am not sure what would happen to a shorter person in it--it would be like a kid sitting on telephone books. The original cushion is really thin. The American system is slow and expensive, with denials of chairs like Permobils for people with very serious disabilities who unquestionably need them; the Medicare rules make it impossible to get wheelchairs unless you're 100% couchbound.

I will take you up on your offer, Katja and will email you--this is well worth finding out, if the slim cushion will work. Thank you, this is very generous and is so much better than guessing whether it will work. Yep, Sportaid, I hear you, definitely. Unfortunately I have to do any exchanges through them for this product but I am changing companies!

Full Tilt, yes, send advice and info. I called DME dealers, the two wheelchair seating clinics in our area, and the insurance co. today to find out more about the process. I know sometimes existing equipment can be adapted creatively sometimes--and that would be fine with me. I just don't want all the pain on my whatsit and my spine. The ergonomics I like otherwise. The cushion would probably be very comfortable for someone without intense low spine pain.

Desi, you are a dear (and one of my very "bestest" friends).

FridaWrites said...
This comment has been removed by the author.
FridaWrites said...

And we can talk--I can buy the honeycomb material in sheets, so that might be an option (if I can afford it), and far less expensive. I am thinking about buying it to recover the wheelchair back--that padding is paper thin and doesn't cover the ridge over the top, creating a dig-in hurty spot when I use the tilt-in-space. Will call shortly. I have a sewing machine but can't do much more than curtains.