TINBASHER put a Youtube video on this site dealing with the Walkaide - this set me thinking that it would aid my son. From time to time I check the internet to see if there are other devices that could make life that little bit easier. I have found the SAFO, which he now uses as opposed to the rigid plastic splint, a better type of catheter which had greatly reduced UTI's. I know he also does his own searching.

What seems apparent to me, especially given the Walkaide is that the medical profession never initiate with him, "We have something that would help you!" It always seems to be the patient that does the prompting, making the medical profession reactive rather than proactive in dealing with spinal cord injury effects on a longer term.

So it seems sensible for SCI folk to continue to do their own research and then prompt the medical profession with "I have read about ......... can we see if that is suitable for me?" My own son's GP, a good young doctor readily admitted to him that he (my son) knows far more about his condition and was happy to learn more alongside him. I doubt that all GP's are as open and helpful - maybe given their workload and wide variety this is understandable - but it doesn't really excuse why specialist Spinal Injury Units are not proactive with follow ups for patients on their lists.

On a positive note - this site is fantastic in helping to spread news of improvements - one of its great strengths - Thanks!

I get what your talking about.

One thing they don't tell you in hospital is the non-existence of support outside of hospital. OT's might as well be on another planet and if you want them to help get you something then you'd better be more patient than a 100 year old monk on a vow of silence. In my opinion we should sack the whole damn lot of them- OT's, administrators, the whole bunch-and hand their salaries over to us, who are after all, the people they are supposed to help. With all that cash out of their feckless hands there is nothing we couldn't do for ourselves- lets face it- we are our own experts and we know what we need and what we want- so, to quote paraphrase a wild old fella, 'give us the tools and we'll do the job'.

This is the attitude I came away from hospital carrying. It's provided me the motivation to become an OT, and to try to provide the help that the worthless OT's (like the one I had) simply can't/don't.

Volunteering at a local rehab has given me lots of opportunities to get input from people with lots of different levels/types of injury/issues. A friend of mine is a film production major, so maybe with the combination of our abilities, we can start to produce some better educational video material for SCI rehab units, and even some resource lists to pass around to different rehab centers to help in finding helpful stuff. My end goal is a nonprofit rehab counseling group consisting of several of us with SCIs who can go to different places to visit people with SCI and help them find the things they need. I don't want it to just be some Reeve Foundation website with a bunch of phone numbers that go to voicemail systems nobody ever checks. I want to have real people answering the phones and getting stuff set up ASAP. Big dreams, I know, but if I don't do it, who will?

The thing I have trouble with is who helps with what? When do you call your GP or do you call your neuro? If they don't get you to therapy, who does? Do you get it going yourself? Who helps you order a good wheelchair - the doctors or some wheelchair store or catalog? There is so much overlap and confusion I think, when you are already so clueless to this "new" life anyway.

The way it is supposed to work in the US is like this--The attending doc in rehab writes the order for the OT dept to have the patient fitted. The OT then meets with the patient and a wheelchair fitter from the chair supplier. The 3 work together to find a suitable chair and setup. The thing is, WAY too many OTs don't have a clue when it comes to chairs. (That's part of what I hope to solve through the work that I (along with a few friends) have begun to do.) Also, in many places (at least here in the US), there's no such thing as loaner chairs or demo models for patients to look at directly. There's only brochures or internet pictures in lots of places.

Unfortunately for me, it worked like this--The day before I was scheduled to be discharged, I had no chair, no fitting, no fitting scheduled, and kept getting the run-around from the OT dept and the doctor. I looked in the yellow pages, called a med supplier, paid for a hospital style chair via credit card, and they delivered. I went back to them a month later,I got my first chair. It was ok, but not compact enough (front frame angle was off). My second chair (Quickie GPV) was one that I measured myself for and spec'd myself. I ordered it from an internet site. After using it about a year, I realized I need a chair with suspension due to length of fusion hardware (from T10-pelvis). I also decided that I wanted my chair lower than what that GPV would sit. I decided on a Quickie GTi (I believe it's Argon in the UK. Could be wrong.) and spec'd it the way I wanted it. I called the state rehab agency, had an appoint made for fitting (although I was pretty sure how I wanted the chair), met the OT and supplier, gave the specs to the supplier, and ordered the chair. The only thing I got different than what I originally decided on was the J3 back, and I'm removing it soon in favor of the original choice.

When I volunteered at the rehab I'm going to start working at this coming week, I was the first person called by the OTs when they had a chair fitter coming for a para. For quads, they call a volunteer that is a quad (he and I had similar problems with our "rehabs."). That way, there is always somebody with a bit of experience with wheelchair issues. All of the medical supplier employees I've met so far (several different suppliers in Austin, Temple, Waco, Dallas, and Houston) have been AB. Of the 40 or so OTs I've met (from Scott&White to TIRR to HealthSouth to St. David's), there are only about 5 that I have met that are wheelchair users. That's ridiculous. I would have thought that an OT who actually uses a chair would have a "leg up" on the ABs for SCI rehab work. I was wrong.

Anti-discrimination laws be damned, most places hire those that can perform therapy on patients with the widest range of issues, no matter how mediocre the therapy may be. There isn't much in the way of specialization in the occupational therapy field. It's more about pushing out a greater quantity of patients than about giving quality therapy. Just watch Murderball, and you can see a bit of what I'm talking about. Even the therapists at Kessler are AB and trying to teach an incomplete quad how to do day-to-day stuff. And people wonder why it takes from 4months to a year for rehab for many quads. I learned more from watching the guys in Murderball (the movie is 86 minutes long) than I learned in 3 and a half weeks of rehab. My AB OT had no clue what the heck she was doing. My PT taught me floor-chair transfer, vehicle transfer, and what little balance I gained (She has a good friend who is a para who taught her. They don't teach this stuff in school.). My OT taught me how to get dressed in bed (which involves lots of twisting that my ortho spinal surgeon said I should not have been doing) and... No, wait...I was already dressed when she came in to teach me that. I guess she taught me nothing except that the US (and probably a lot of other places) seriously needs OTs who have a clue about SCI.

Here's an easy way to tell who to call. During rehab stay, the attending physician should see to it that the OT dept has your chair fitted prior to your discharge. (Unless, of course, you were in a "rehab" center that sucked.) So,if it involves getting a new chair fitted, then (in the US) speak to your GP to get a referral to an OT, call a medical supplier directly and ask them for suggestions, or contact your state rehabilitation department for help. For getting wheelchairs fitted or getting parts, etc, in the UK, I'd suggest asking some of the forum members who live in the UK. They are sure to be more knowledgeable about the procedures there than I. If you find, after you've gone home, that you need to get in to see a specialist (gastroenterologist, urologist, etc.), see your GP first. The GP can usually write referrals to specialists. If it involves nerve issues like pain (tingling, stinging, etc.) or spasms, see your neuro.