Greetings all

[Toro]

Hi all,

Been looking around the site for a bit and decided it was time to introduce myself.

I'm from Perth Australia living with a spinal cord injury at the c4/c5 level making me a quadriplegic having my accident in 1996.

I've always been a very active person, playing sport and living life. After accident still kept the living life part as best I can though have had problems with
pressure sores that try slowing me down.

This place is a wealth of information and hopefully can ask some questions and get some answers and knowledge that helps.

Cheers

[Burgerman]

T4 paraplegic with a bunch of other problems from big crash in 97. Pressure sores. I hear you. Kept me on my bed for the best part of 4 years given a day or so here and there. So much to do/fix/catch up, not enough time.

[Toro]

Hey Burgerman

had my accident on sand dunes in 4x4. Collapsed lung too.

Pressure sores are the devil. The only thing that puts a stop to my life and they have a couple times.

First one in 2003 when trialing a new wheelchair. The SMART EXPERTS had the backrest on such and angle that my ass was out the back and my roho wasn't long enough so I didn't know I was sitting on the wood board underneath me. A damn big welt on my ass that broke down... 18 months in bed.

[Burgerman]

You have to be the brains. The experts prove over and over that they are far from it. I trust nobody. Just presume that you are surrounded by idiots, and you will be correct 99% of the time and wont go far wrong. I run on logic, reason, evidence.I leave nothing to chance. I dont suffer fools welland they soon find that out. I dont do "shoulds", feelings, or myths. I dont do "consensus". I dont do grup think. I ignore marketing, hype, and other bullshit. Nothing sways me from this. I am an extreme skeptic. No "experts", no brand names, qualifications, or supposed confidence in themselves. So far I have been proven correct at LEAST 99% of the time throughout my 60 years in every subject. Trust nobody till they PROVE they are correct. I trust physics. I trust chemistry. I trust the hard sciences. Only. Everything else is woolly confused, innacurate or in doubt. Like HUMAN caused climate change. Climate change is real enough.

Hell I dont even trust the macdonalds to get my order right. I INSIST they repeat it back. Know what? Its usually wrong!

[Toro]

I hear you. It's bloody annoying to hear how a so called specialist has 35 years experience and telling me how I'm being difficult because I'm not playing nice with their opinion on how I'm supposed to sit and what I'm supposed to sit on. Every problem I've had with pressure sores comes from their mistakes.

I refuse to listen to any of them anymore. I know what I need and how I need it. They always label me difficult passing me from one therapist to another.

Got a couple of questions I was wanting to get your opinion on that I'll post in the wheelchair section.

[Burgerman]

One of the things I noticed about our socialist NHS many years ago is that they hate anything and anyone that complain, correct them or object to anything. They especially hate it when you know more than them about anything, which isnt hard, and when you point out that they are wrong, or failed to get back to you or to do anything is a timely fashion its YOU thats the problem...

I am currently having an argument with them right now. About speed of response or any action at all. They think getting back to you after total silence, only because you call and get angry after 9 MONTHS is acceptable. And I got a lairy reply by email saying things that ARE happening, just not on my preferred timescale... I ponted out that they said they would get back to me by letter and phone 8 months ago and have done absolutely nothing. During that time my brothers lad has demolished a house, and built a completely new one. And sold it. On his own almost. And musk has built a rocket production line in boca chika. They think I am rude.

If that was a private company it would have gone bust. Its customers would have gone elsewhere long ago. NHS is useless and should be privatised.

[Toro]

You should see some of the people I've come across that try telling me what is best for me. I'm very direct now, it's the only way to work. The amount of times I've had to go back and forth over seating issues is crazy.

My pressure sores have come from their mistakes from people not doing their jobs right. I've sat on roho's, and foam mostly...tried out gel but not a lot. I get dysreflexic after couple hours now when sitting up, been looking at cushions of any kind that allows me time up, laying in bed sucks.

[steves1977uk]

I hear you. It's bloody annoying to hear how a so called specialist has 35 years experience and telling me how I'm being difficult because I'm not playing nice with their opinion on how I'm supposed to sit and what I'm supposed to sit on. Every problem I've had with pressure sores comes from their mistakes.

I refuse to listen to any of them anymore. I know what I need and how I need it. They always label me difficult passing me from one therapist to another.

Got a couple of questions I was wanting to get your opinion on that I'll post in the wheelchair section.

Same here, my PA is seriously pissed off at the "experts" in WCS since they consider disabled people dumb! They don't like the fact I refuse to take a crappy unprogrammable Invacare chair which they supply, and the fact I know more than they do.

The "expert" senior OT has a condescending attitude which didn't go down too well with my PA and she called her a w@nk3r.

Steve

[Burgerman]

Trust me that condescending thing is common. Its to cover up the fact that they dont understand much of what you are talking about. That 2 day course at a wheelchair manufacturer, hasnt actually tought them 1% of what I already know. And I have to educate them every time we discuss any single point.

Small things. Basic things that you would think are obvious. Like what affect the CG has on a rear drive chair. It governs absolutely everything! It determines what power module, what motors, what footplate, what stability and climbing angles, caster shake, programming, seating possibilities, range, steering and manoeverability indoors, length, and more. And I had to make them a bullet list explaining all of this last time. Now they tend to just nod and agree.

[Toro]

For all the therapists and experts they all get to wash their hands of it, go home relax and move on with their lives. Us in this position have to deal with all the problems that arise.

[martin007]

Hello Toro!

A greeting from Spain.

[Toro]

Hello Martin007

Thanks for the greetings

Same to you from Australia