38 replies to this topic

[Charlie-boi]

You know when you see a bad raod... filled with pot wholes..horribel to drive over yet no one ever fixes it even though you know the coincil easily could....
Then they do... but only little patches at a time which still leaves the road in a terrible state and it made ''to get by'' rather than calling in the big guns and totally resurficing everything so the problem doesnt come back...


This is how i feel SCI is treated. The sci units no nothing of treastments and cures to help sci.. They are purely there to patch you up and to ''get yoou by'' in life rather thank treat of fix you.

I feel like im in a 3rd world country with a condition that will never be helped. Charitys like SCI research dont give me any confidents. They simply dont have the finances to make anything happen.

The only hope is in money... ''a cure'' is a buisness. A treatment of medication to be sold or gain huge stock shares.

I realy think the sci units are from my experiance extremely poor and in need of a huge update... in patient treatment. education and rehabilitation.

I realy want to get things moveing....i feel like the sci population are totally ununited. people are too content to live with a much lower standard of life becase there is no battle for them to join. Maybe he characteristics of a union for a job should be copied.


I realy dont know whats needed... i am venting because i feel so helpless about the situation... an ideas folkes?

[Muskie]

Hi Charlie-Boi

I have only been here on this beat up road for 6 months. The researchers can't wait for a sugar daddy drug company, they must plug ahead with what they have. They depend upon you and I the SCI community to raise money at the grassroots level. While venting you do leave a sketch of plan. You mention drug companies but you also say big guns so I take it you mean big drug companies. Maybe the answer rest in the startup company like Bioaxon in Canada. So maybe investigate investing in them. You stated that the sci units you were in need a huge update perhaps you can become an advocate for healthcare reform. You have a vehicle of several thousand on this website alone unite us. You lead, I will follow and support your efforts the best I can. Chin up mate. As you can tell I am kinda of a rah-rah guy.

[tomsov]

I am just going to say this. Welcome to the world that just gets by. There is nothing built for long term usage. Everything is in a manufactured world. Homes now have shelf lifes and furniture will only last so long. The oximoron of it all is if we fix one single thing then there is going to be a shit load of people out of business. If things lasted forever there would be no reason to have to constantly be going out and getting new things. If by some miracle there is a cure to a severed spine. Doctors will have to go back to school with no money to find a new position, the need for occupational and physical therapists is gone. wheelchair companies are out of business, Home modification companies are out of business, and so on. Because we have built up a manufacturing world we don't have the luxury of an infinite amount of resources. We made jobs for the sake of making jobs. The reason for that is for the mundane products have gone from hand made quality to machine made shit. If there is any break through in modern medicine it is still going to be on the terms of patch work to save jobs and promote capitalism. Back to your road analogy basically if you fix the road right the first time there is a loss of jobs for the next 10 years. It sucks. Somewhere in the history of the human race common sense went out the window. Now that humans are smarter and information is readily available, we can do almost anything. Most likely there is somewhere there is a cure. it might not be the exact cure that makes things go back to normal, but it is a start. but they will hide it away till the company is on the verge of collapse before marketing for it. it is what it is. At this point if there was just something to give me control of my bladder i think id be happy.

[DannyR]

Look at what they have done with cancer. I would hate to think of the money that has been poured into cancer research with not a whole lot of progress. Think of the years of research that has gone on. They have come up with better treatment and can make your life longer but just can't quite find a cure. Why do you think that is? This is a disease that everyone is aware of and I would venture a guess that probably everyone has lost someone close to cancer. How many have loved ones with SCI? How many people are even aware of SCI? You can talk with anyone about the suffering that goes along with cancer but noone understands the suffering that goes with SCI. For that matter how much your entire body is affected. Who would think about the wear and tear a wheelchair has on your shoulders or the pressure sores or bladder infections.They don't understand how frustrating it is to have trouble doing things that everyone takes for granted...simple things. How do you make someone understand what it feels like to be in a hospital bed and want to adjust the thermometer but you can't. They don't know the feeling when a dr. tells you that may not be able to walk again or won't walk again. People look at those of us can walk and say well at least you can walk not knowing how much energy it takes to take a step. They don't see the bruises from the falls we take. The pain we feel everyday!!How do you make people understand what it is like to mourn the lose of your life? The anxiety attacks,the feelings of being helpless, losing your role in the family? The only way to get people interested is to find a way to make them understand all this and so much more.

[Zack]

30 years ago I was told a cure is less then 10 years away! That was long before Stem Cell reearch or even DNA existed. They were implanting electrodes into SCIs in the experimental stage then. The ( Mid Evil Stone age! ) I learned fast I better keep myself physical strong, and to know more about my personal SCI condition then my current doctors.
2 years ago this past October I was in an ambulance hoping to get to the Emergency Room fast. The para medic in the back with me was asking for my insurance info as the ambulance was just sitting still outside of my apt. I said I need to get to the ER before I'm in full blown Dysreflexia. The para medic asked what's that? I explained with ergencie in my voice, and he asks me to spell it. Finally in the ER with a doctors assistant and nurses around me, I'm explaining I need an internal Catheter put in me. My bladder has me looking pregnant from not being able to Void my urine since leaving the Bronx VA hospital 9 hours ago after a cystoscope for bladder stones, I'm going into Dysreflexia and their looking at me like I'm speaking a foreign language, when a Real Doc walked up, grabbed the clipboard from his assistant and said "Give the man a catheter, stick by him and learn something!" that Blew my mind and all confidence I had in hospitals. That's not my only hospital nightmare experence!

To answer your question. NO, I've seen only progression in treating kidney stones. In the 80s they cut your kidneys open to remove Stones. They Extended our life expectancy without improving it's quality. That's up to each of us to make the Best of.

Live, Love, lol or Roll over!

[A trophy guy]

Charlie-boi, on 07 February 2012 - 01:27 AM, said:

The only hope is in money... ''a cure'' is a buisness. A treatment of medication to be sold or gain huge stock shares.


people are too content to live with a much lower standard of life becase there is no battle for them to join.

First, you are absolutely correct; all of health care has it's foundation in profit. It will be the pursuit of the highest profit potential that ultimately leads to a feasible cure. With that being said, a cure isn't something that I focus on.

What I focus on is making this world better for SCIs. As you point out, people with SCIs are too content to live with a much lower standard of life. Why is this though? There is a battle to join, a battle for equality. I think most people accept this sub-standard way of life because they believe it just is the way it is. But change takes a spark, it takes risk and it takes action. I truly believe I can affect positive change in my lifetime for the quality of life for people living with spinal cord injuries and other severe disabilities. I just haven't quite figured my path out just yet.

[jules]

It is very difficult to compare cancer research to SCI research. Firstly Danny i would argue that many cancers are now curable especially when caught early enough. The reason comparison is difficult especially when it comes to the amount of money that goes into research is because each cancer is actually a different disease with a different disease process, therefore needing different treatment or cure.

That is not to say that I think that SCI research is massively underfunded, I find with my other disease that I am suffering from and is killing me is even more poorly funded. As much as it hurts me to say it, it is because it is not a "trendy" or popular disease or condition in the same way as SCI.

[FlyPelicanFly]

Charlie-Boi, you ask very important questions. Questions that have been asked before by many SCIers before you and questions that will be asked by many more in the future.

Money is only part of the problem. Attitude is only part of the problem. A lack of unity is only part of the problem. The difficulty in curing/treating SCI is also part of the problem. Admittedly the number of false dawns (there have been many) have completely skewed the hope-despair scale.

After quite a bit of digging, researching, learning, attending scientific meetings, talking to researchers, clinicians and SCI advocates it is very obvious that this Curing SCI lark is one hell of a challenge and no-one has worked out yet the best way to get there. However, what I can tell you is that there have been important milestones/trends in the last 12 months to try and take on this challenge.

This includes:

1) Consensus between researchers on the contusion injury model being a valid model for pre-clinical studies
2) Researchers beginning to separate plasticity (sprouting) and regeneration when talking about repair
3) Excellent research from Jerry Silver's lab on Chondroitinase and peripheral nerve grafts - which is a very real and applicable treatment for humans.
4) Medical Research councils / national funding bodies are now identifying and making plans for the lack of translational funding as an obstacle to moving therapies from the bench to the bedside.
5) Excellent research from Liz Bradbury (Kings College London) and Zhigang He (Reeve Irvine US) labs with regards to Chondroitinase and PTEN/mTOR to promote plasticity and regeneration. These are very very promising lines of science.
6) One SCI Organisation is preparing an incentive prize (see x-prize) for curing paralysis. A prize could provide the type of organic momentum we crave provided the pot is big enough.
7) Unite2FightParalysis is enhancing it's reputation as a powerful and respected global SCI patient voice.
8) There are a number of human clinical trials underway. Clearly not enough but it will only take one to show some efficacy to give the field a shot in the arm.
9) Governments are beginning to admit that funding lines of research could bring national health costs down. It's only the beginning but I guess we have to start somewhere.

What can you do? Keep talking. Patients. Researchers. Clinicians. Polticians. Keep learning and educating.

Fly Pelican Fly

[Muskie]

Well said FPF

[edlee]

These are, indeed valuable steps toward what we ALL hope for,, but still,, just steps. We must first, decide what exactly we want. Is it "THE CURE"?? What IS " a better life"? We are,, each of us,,, individuals,, with our own idea of the answers to the above questions. It is extremely difficult, to form a realistic consensis among all the different levels of injury,, not to mention the multitude of different personalities.

Cboi's post sounds like he is having a bit of the black dog, setting in. Realization that ,,,, this is it,,,, grabs us all at different times. While I would love to hear that a real procedure was available to help any or all of us,,, I don't believe that there will be in my lifetime,,, nor that of the majority, here. That isn't what he wants to hear,,, but it IS what he has started to see.

Aside from a "cure",, what is it that we are talking about? More sidewalk cuts,,, wider aisles,,, better equipment??? Or are we hoping that people will start caring about us,,,, even though our affect upon their lives is nil?? It is human nature,, and, in fact,, evolution forces upon us,,, the trait that makes us focus on the things important to us,, and ignore those that aren't.

I try to allow people to see that SCIs are a part of their lives,, by getting out there. If no one sees us,, no one thinks about us.

If there is something specific that anyone can suggest,, I might be happy to help. What did you have in mind, Guy?

Edited by edlee, 07 February 2012 - 08:58 PM.

[Dutch30]

To start of with answering the topic title. I'm a new sci so I don't know what the word on the street was in SCI research the last decades but there is more going on in SCI research then what I thought before I was injured.

I think awareness is a big factor in funding. I don't know the ins and outs of what's going on in SCI research at the moment but what I do read is that lots of tests lack funding. It's really messed up to read that some researches (not only in SCI) just stop because there is no funding of let's say 5 million dollars although there are promising results. At the same time I read in the paper that there is big shot guy from a major company that gets 3,5 million dollars just as a bonus on top of his salary. I know that's the way the world works, but it sometimes makes you bitter and angry.

To get back to the subject of awareness. In my experience most people in this world don't even think about SCI or are in anyway aware of how devastating something like SCI can be in a person or the (close) people / family surrounding someone with SCI. Although I knew people who are in a wheelchair I didn't know anything about SCI. I just thought SCI was something I would never get and only get when I got myself into a terrible accident and that I would be done for. Now here I am with an SCI not by trauma but due to stenosis at an early age and I am reading so much about it and can feel what this does to a person physically and emotionally. But even though my parents are more supportive then I could ever wish for they still don't understand. They are always talking about "a friend" or co-worker that has the most fun in his/her live even though he/she is in a chair. I do believe that someone can make the most of his/her life but it takes a shit load of work to even get to that point. I guess what I am trying to say is that to achieve major donations / funding from the big boys or lets say donations from the public then we definitely need someone or something to step up or change to make these things visible to the world.

Of course funding is only a small part. Next to that you will need some excellent scientists and lots of time next to that. But like I said, I don't know a lot about the things that are going on in SCI research let alone how much time it will take.

[DannyR]

Well said Dutch that is what I was trying to get at by comparing cancer research to SCI research. Awareness equals funding. Without the funding we can go nowhere. Professional sports does so much good for all different kinds of charities, links on facebook, Awareness programs,television ads, things like that gets the message out there. Like you said most don't even know what it is or how it comes about until they are there...I didn't. With awareness would come some of the things ed was talking about. People park in handicapped spots because they want to be close but most have no idea the impact that has someone who needs that spot.

[richo]

i belive there will be improvements,treatments may be even a cure to beable too walk again one day.but its time,some have more some have less.any reasurch i beleave into any thing is all good.i mean just think about how many tratments that have been discoverd are made by accedent,then uesd to treat something else compleatly different.i my self have hope.haveing said that im allso not just sitting around with my finnger in me bum ither.we all need to get on with our changed lifes.take care

[Iain]

A few comments from a UK medic with an SCI. I'm in my mid 50s, and I'm sorry to say that the chances of some form of "cure" within my life time are nil. Maybe new injuries will be treatable but those of us with older injuries are extremely unlikely, in my view, to see any major change in medical treatments. I hope I'm wrong but I doubt it.

Secondly, in terms of commissioning health services within the NHS, SCI is very much a Cinderella service. Few outside understand the needs, and the numbers are small. From a professional point of view it is a Cinderella service. While not, in any way, decrying those involved in the provision of SCI services (& to whom, I owe a debt of gratitude), I doubt many new graduates list spinal injuries as their primary career choice. Most start off as orthopaedic trainees, who for a variety of reasons end up in SCI.

To compare the situation to cancer is specious, the number of people affected, and the number of lost quality life years makes cancer a much higher priority for funding. SCI research will remain an under funded area, unless something dramatic happens, such as more high profile SCIs. None of this means that there isn't room for agitation and lobbying to improve the situation, but sadly we must be realistic that such action may help future injured people it won't do much for those of us with injuries now.

It follows therefore that for the present cohort of SCI patients, finding ways to improve quality of life, independence and reduction in complications is what we need to be looking for. It's so sad to see people who put their, albeit impaired, lives on hold, waiting, hoping, praying, for a cure that realistically isn't likely to come. I guess it's easy for me, a para who is able to work, earn a reasonable wage, and has the benefit of a supportive wife and family, and if things were different, I may well have been one of those whose only hope would be the "cure."

[FlyPelicanFly]

Iain, on 08 February 2012 - 09:03 PM, said:

A few comments from a UK medic with an SCI. I'm in my mid 50s, and I'm sorry to say that the chances of some form of "cure" within my life time are nil. Maybe new injuries will be treatable but those of us with older injuries are extremely unlikely, in my view, to see any major change in medical treatments. I hope I'm wrong but I doubt it.

Without offending you, a UK medic with an SCI does not make you anymore qualified than many of the conservative, often misinformed, consultants working in our esteemed UK spinal units.

Iain, on 08 February 2012 - 09:03 PM, said:

It's so sad to see people who put their, albeit impaired, lives on hold, waiting, hoping, praying, for a cure that realistically isn't likely to come. I guess it's easy for me, a para who is able to work, earn a reasonable wage, and has the benefit of a supportive wife and family, and if things were different, I may well have been one of those whose only hope would be the "cure."

This is very condescending to those that are working very hard to advocate for a "Cure" whilst holding down fulltime jobs, looking after families and living very well-balanced happy lives. Believe it or not, Cure advocates are not all deluded SCIers unable to accept their injury. It is also very condescending to those researchers and clinicians who are working endless hours for very little money to try their best to get repair strategies for "chronic" SCI from bench to bedside for our community!

This is a good read:

http://wheelchairjun...mon-sense-cure/

Enjoy.

[A trophy guy]

FlyPelicanFly, on 09 February 2012 - 12:25 AM, said:

Iain, on 08 February 2012 - 09:03 PM, said:

Iain, on 08 February 2012 - 09:03 PM, said:

It's so sad to see people who put their, albeit impaired, lives on hold, waiting, hoping, praying, for a cure that realistically isn't likely to come. I guess it's easy for me, a para who is able to work, earn a reasonable wage, and has the benefit of a supportive wife and family, and if things were different, I may well have been one of those whose only hope would be the "cure."

This is very condescending to those that are working very hard to advocate for a "Cure" whilst holding down fulltime jobs, looking after families and living very well-balanced happy lives. Believe it or not, Cure advocates are not all deluded SCIers unable to accept their injury. It is also very condescending to those researchers and clinicians who are working endless hours for very little money to try their best to get repair strategies for "chronic" SCI from bench to bedside for our community!

While I can't speak for Iain, I just want to say I don't believe he was referring to each and every person who advocates or hopes for a cure. I believe he was speaking about those who don't move forward with their lives as para-or-tetraplegics as they are stuck in a stasis of sorts, always searching for the next "fix".

Those who manage to assimilate successfully to the disabled world while simultaneously being fierce advocates for the latest research and innovations in the medical community deserve nothing but the highest admiration and accolades; at least as far as I'm concerned. But I also do agree with the sentiment expressed by Iain when it concerns those who never seem to make the very best of the only life they will ever have.

[DannyR]

It was a nice read FPF. I think he was spot on. Sometimes accepting a situation means just that, no way will it ever get better. I was a very active person..loved the outdoors camping, fishing, hunting, trailriding. With the exception of trailrididng I still do most of the other things but in a much different way. While that is not how I want to do things it is how I have to do things. I wasn't able to return to work. I feel to just accept things the way they are or to think that my situation isn't as important as others is crazy. It isn't as serious as others but it is the biggest challenge that I have had to face and trust me there have been many...stroke, heartattack, diabetis and nothing has affected my life as much as SCI has.With the other stuff there was never anyone telling me well there's no hope for you so just accept it and move on.I could be treated for the other stuff and that was because of research and testing and more rearch and more testing. Over the years there have been so many diseases that have got attention and although there might not be a cure it is controlled and therefore give people a better quality of life.The problem is we are so far away from a cure and each day that passes we are even further away.2 more days will be 3 years since my surgery and already I'm tired of hearing I can't do that or don't try that or don't go out there alone like I need a babysitter. If and God forbid one of my kids had this happen to them I would like to think that somewhere along the line somebody had the courage to get the ball rolling for a cure. I would hate to have to look one of them in the eye and say "hey this is it just accept it and make the best of it" Accepting a situation doesn't have to mean one can't hope for a cure or it isn't serious enough to get the attention it needs.

[Iain]

FlyPelicanFly, on 09 February 2012 - 12:25 AM, said:

Without offending you, a UK medic with an SCI does not make you anymore qualified than many of the conservative, often misinformed, consultants working in our esteemed UK spinal units.

I don't think I claimed any expertise I merely put my opinions into context as a follower of the biomedical model etc. Interested that you feel the Consultants are conservative. In what way should they be radical and on whom?

"This is very condescending to those that are working very hard to advocate for a "Cure" whilst holding down fulltime jobs, looking after families and living very well-balanced happy lives. Believe it or not, Cure advocates are not all deluded SCIers unable to accept their injury. It is also very condescending to those researchers and clinicians who are working endless hours for very little money to try their best to get repair strategies for "chronic" SCI from bench to bedside for our community!"

Those inferences are entirely yours, I did not attempt to denigrate people's efforts. I merely expressed my opinion that those efforts would take very much longer to come to fruition than any of us would like. My concern was not for those individuals, it is for those who we do see on here, that pin all their hopes for their future on a "cure."

I read the article, and I dont think there's anything in there that contradicts the crux of what I said, that any cure is not likely to appear in the short term. Indeed, I will go so far as to say I doubt if there is such a thing as "a cure," as there's not a single mechanism of injury. What is more likely is that there will be a range of treatment strategies which will be combined in different ways dependent on the clinical situation which may improve or eradicate the neurological deficit.

I wonder why you feel the need to appear angry about the issue, but that is nothing more than a rhetorical question

Enjoy

[goose]

I was injured at age 24 and very optimistic a cure of some degree would be found during my life time. When Chris Reeves was injured , I just knew he was the spark we needed to ignite awareness for SCI. Twenty five years later , I'm still hopeful but more realistic that it won't be happening very soon or at least in my life time. Unfortunately, we live in a society that is influenced by dollars and cents and not so much sense or compassion. Too many jobs would be lost if a cure was to be found. Yes, I still believe we will see improvements but they will only trickle down.

My advice to the newly injured is to stay as healthy and strong as possible. Be your own voice. Educate yourself and your doctors. Take control of your own body and make smart decisions. You can make a difference even if it's only with yourself. Strive to improve each day. Set goals and try to achieve them.

Edited by goose, 10 February 2012 - 12:05 PM.

[love&hate]

After reading this thread I was shocked by how misinformed some of the people are. Please, I urge everybody to do some research before posting. First of all, if some of the medical trials will yield success there's no way they will hold it back because of possible collapse of companies that benefit from our misfortune. Those companies can be restructured and SCI is not the only reason this type of equipment is used. You have to realize that once the breakthrough is achieved people involved will end up in medical history books which will be followed by Nobel price. The company that invested in successful trial will rush to patent their product and move it to market as soon as possible to get return on their investment. In this case the capitalism is on our side not other way around.

That is of course once the breakthrough is achieved. In my opinion it is possible that some successful therapies might be developed within my life time(I am 26) but as far as near future I am afraid theres no hope for that. The immediate focus is on acute spinal cord injury and we need to realize that.
Its sad to see how many times older generation was disappointed by the magic number of 10 years. Sadly, that is what I have been told by my neurosurgeon shortly after my 2ed operation. At that time I did not know enough to argue with his promise but now I know its nothing more but a convenient number to make us feel better. Ironically, it had a bad impact on my life as I was obsessed with the prospect of "cure". Now..... well, now... I know better. I know that theres simply not enough people living with SCI to make an impact on public eye. Theres many,many other pressing issues that our "condition" needs to compete with when it come to funding and awareness. Like it or not we are not on top of the list , we never were and never will be.

[bongorum]

I agree with goose; and not to sound like a conspiracy theorist, but what of all those larger-than-the-idea-of-god-himself interests that are all opposed to a cure for sci? I speak of course of the wheelchair makers, the manufacturers of the specialized drugs that rid us of our spasms, even those that have built empires on selling us the products we need for our bowel programs. Isn't it quite possible that these folks are working - no less hard than the well-meaning ones who are working towards a cure - to ensure that the cure remains undiscoverd for as long as possible? How do we fight them? How do we negate their influence so as to guarantee that no one stands between us and the day we shall once again be as ambulatory as we once were?

loveandhate, my friend, when it comes to their money, men will often cast their scruples to the wind. They have started wars and murdered their brothers for less of it than you would imagine.

If even a huge, internationally-renowned corporation like Microsoft can condescend to employ dishonest anti-competitive practices in order to crush its competitors, who then can we safely say is immune to similar temptation?

Edited by bongorum, 10 February 2012 - 07:20 PM.

[love&hate]

bongorum, on 10 February 2012 - 07:03 PM, said:

I agree with goose; and not to sound like a conspiracy theorist, but what of all those larger-than-the-idea-of-god-himself interests that are all opposed to a cure for sci? I speak of course of the wheelchair makers, the manufacturers of the specialized drugs that rid us of our spasms, even those that have built empires on selling us the products we need for our bowel programs. Isn't it quite possible that these folks are working no less hard than the well-meaning ones who are working towards a cure to ensure that the cure remains undiscoverd for as long as possible. How do we fight them? How do we negate their influence so as to guarantee that no one stands between us and the day we shall once again be as ambulatory as we once were?

You really think those companies can have an impact on people that devote their life to work towards SCI therapies? If the therapy will be achieved through stem cells there NO WAY this breakthrough will be kept in the lab. Its too big. Besides, the same companies that sell us drugs would be interested in selling us the regenerative therapies. I am sorry but I find this idea to be absurd. The medical community is interconnected these days. One paper ..just one published medical journal can have a profound impact on the whole community.. much like in the past.

[bongorum]

love&hate, on 10 February 2012 - 07:24 PM, said:

bongorum, on 10 February 2012 - 07:03 PM, said:

I agree with goose; and not to sound like a conspiracy theorist, but what of all those larger-than-the-idea-of-god-himself interests that are all opposed to a cure for sci? I speak of course of the wheelchair makers, the manufacturers of the specialized drugs that rid us of our spasms, even those that have built empires on selling us the products we need for our bowel programs. Isn't it quite possible that these folks are working no less hard than the well-meaning ones who are working towards a cure to ensure that the cure remains undiscoverd for as long as possible. How do we fight them? How do we negate their influence so as to guarantee that no one stands between us and the day we shall once again be as ambulatory as we once were?

You really think those companies can have an impact on people that devote their life to work towards SCI therapies? If the therapy will be achieved through stem cells there NO WAY this breakthrough will be kept in the lab. Its too big. Besides, the same companies that sell us drugs would be interested in selling us the regenerative therapies. I am sorry but I find this idea to be absurd. The medical community is interconnected these days. One paper ..just one published medical journal can have a profound impact on the whole community.. much like in the past.

You evidently did not read the remainder of my contribution. I ask you again: if Microsoft can do it, and almost get away with it, who is immune to such temptation? If you don't believe me, reference 'Microsoft and anti-trust,' and you'll see that when it comes to human greed anything is possible.

Nothing in this world, not love, not freedom, not beauty, is 'bigger,' although I'd rather say more valuable, than money to the majority of men on this earth. We simply do not live in the utopia you imagine.

Edited by bongorum, 10 February 2012 - 07:38 PM.

[edlee]

I am often disheartened, by the need of some to have a "satan" to blame. These"great empirists" ,, who make "so much money" off the backs of the poor disabled community.

Sorry,,, but in my opinion,,, that's a load. There is a far larger market for baby strollers than for wheelchairs,, for cough syrup than baclyfin. There simply isn't enough market share to conjure up a conglomerate who would fight to keep us as we are. One hears conspiratists,, with their myriad of theories,,, all accusing someone of seeking control over someone else. I'm afraid that it doesn't fly, in this case.

The "breakthrough" will come about when someone finds a way to get our own bodies to shed scar tissue. It already regrows nerve tissue ( an unheard of thought when I went to school 50 years ago,,,,, god,, am I that old???) ,, albeit, slowly. It simply doesn't do so across the scar tissue left after out injuries. It sounds so simple,,, and so complex,, all at once,,, but short of finding a way to transplant a part of the spinal cord, itself,, I don't see alternatives.

BUT,, some researchers do,,, so the studies go on. I appreciate them,, and I aplaud them,,, but I don't expect them t hurry on my account.
ed

[love&hate]

bongorum, on 10 February 2012 - 07:32 PM, said:

love&hate, on 10 February 2012 - 07:24 PM, said:

bongorum, on 10 February 2012 - 07:03 PM, said:

I agree with goose; and not to sound like a conspiracy theorist, but what of all those larger-than-the-idea-of-god-himself interests that are all opposed to a cure for sci? I speak of course of the wheelchair makers, the manufacturers of the specialized drugs that rid us of our spasms, even those that have built empires on selling us the products we need for our bowel programs. Isn't it quite possible that these folks are working no less hard than the well-meaning ones who are working towards a cure to ensure that the cure remains undiscoverd for as long as possible. How do we fight them? How do we negate their influence so as to guarantee that no one stands between us and the day we shall once again be as ambulatory as we once were?

You really think those companies can have an impact on people that devote their life to work towards SCI therapies? If the therapy will be achieved through stem cells there NO WAY this breakthrough will be kept in the lab. Its too big. Besides, the same companies that sell us drugs would be interested in selling us the regenerative therapies. I am sorry but I find this idea to be absurd. The medical community is interconnected these days. One paper ..just one published medical journal can have a profound impact on the whole community.. much like in the past.

You evidently did not read the remainder of my contribution. I ask you again: if Microsoft can do it, and almost get away with it, who is immune to such temptation? If you don't believe me, reference 'Microsoft and anti-trust,' and you'll see that when it comes to human greed anything is possible.

Nothing in this world, not love, not freedom, not beauty, is 'bigger,' although I'd rather say more valuable, than money to the majority of men on this earth. We simply do not live in the utopia you imagine.

It could be the idealist in me, again, prevailing but I think that its improbable that money can have an impact in this situation. Its peoples lives we are talking about. We all know, we all experienced what it really is. The quality which we all lost. I think that people involved in development of therapies for our condition realize the kind of importance of their work. If they succeed I would even assume they would be passionate about it. It is their life , just as its ours. So we have passion, devotion, time, history, fame against greed. I choose to believe theres only one choice.

Another point would be that there is also money behind cure. So, in reality its greed fighting greed. We are talking billions of dollars. The company that invested or own it could have as much power as those that oppose it. Lets think about the potential stem cells have. Its incredible prospects, who wouldn't want to invest in that? Only a fool I would say. Looking in the future what do you see being extremely successful on the market wheelchair? or stem cell therapies? Again, I choose to believe theres only one choice.

Edited by love&hate, 11 February 2012 - 06:16 AM.

[bongorum]

My point wasn't that there would be no cure, ed, but that between it and us lie a few obstacles. How then do we remove them? By agitating in the streets, by lobbying in the halls of government, how?

To believe that no one, no interest, no single corporation, no conglomerate, opposes the search for a cure, seems to me a bit naive. Especially with so many of them depending on the continuation of our conditions for their healthy profit margins. And as long as someone does, they present themselves as a hurdle in our path, do they not?

Do you think the big oil companies are supporters of Obama's drive to discover altenate fuel sources? Of course not! Wake up and smell the coffee, man. They'd do anything in their power, legal or illegal, to thwart all efforts to find an oil-substitute.

Whether you believe it or not, we are a multi-billion dollar market to some who would rather cut off their right hands than see us walk again.

And, loveandhate, this world does not belong to idealists, it belongs to capitalists, my friend. I'm sure you remember what happened when that balloon of capitalist greed burst recently and the entire world economy plummeted. My tiny shithole of a country hasn't fully recovered from that yet, nor have most countries. The lesson here: put nothing beyond the greed of men.

Edited by bongorum, 10 February 2012 - 08:59 PM.

[love&hate]

bongorum, on 10 February 2012 - 08:07 PM, said:

My point wasn't that there would be no cure, ed, but that between it and us lie a few obstacles. How then do we remove them? By agitating in the streets, by lobbying in the halls of government, how?

To believe that no one, no interest, no single corporation, no conglomerate, opposes the search for a cure, seems to me a bit naive. Especially with so many of them depending on the continuation of our conditions for their healthy profit margins. And as long as someone does, they present themselves as a hurdle in our path, do they not?

Do you think the big oil companies are supporters of Obama's drive to discover altenate fuel sources? Of course not! Wake up and smell the coffee, man. They'd do anything in their power, legal or illegal, to thwart all efforts to find an oil-substitute.

Whether you believe it or not, we are a multi-billion dollar market to some who would rather cut off their right hands than see us walk again.

And, loveandhate, this world does not belong to idealists, it belongs to capitalists, my friend. I'm sure you remember what happened when that balloon of capitalist greed burst recently and the entire world economy plummeted. My tiny shithole of a country hasn't fully recovered from that yet, nor have most countries. The lesson here: put nothing beyond the greed of men.

Sadly, nothing is ideal in this world. Maybe if we would let idealists lead us the world would be much different, better. I have to disagree with you sir, on that matter. I realize corruption is a serious problem, driven by the nature of capitalism. Its evident that greed is a plague of the western world and like a real plague its spreading to other parts of the world. That being said I honestly cannot believe that corruption can keep news like a breakthrough in SCI therapies under the radar. Its too important, life changing. What about the researchers .. they would have to be intelligent people if they were to invent a successful therapy. Do you think they would be satisfied with a bag of money? We cannot simply put a price tag on everything. You can call me naive but I refuse to believe the idea that you put nothing beyond the greed. Its exaggerated, it has to be. I remember financial crisis but this case is different. The numbers,concepts, the industry are different.

Even if companies that benefit from our misfortune will try to ruin it for us we can use their desire to beat them in their own game. I mean how much money would a Joe with sci be willing to pay for successful therapy. We can already see an industry developing in some countries. They are making millions selling snake oil to people. Now imagine full blown stem cell industry in the heart of capitalism.
How much money would an industry like that be worth. I imagine lines, much like those we see when they release new iphone. How can a relatively small wheelchair company deal with that kind of capital. It is unlikely that they will have an impact. They will sure try but they are destined to fail. If they are smart they will use their resources to restructure their companies. They will have to adapt to the change or their companies will bankrupt ... much like every other company that faces change on the market.

Edited by love&hate, 11 February 2012 - 07:09 AM.

[Charlie-boi]

It seems like clever ideas like combineing nerve damage from stroke attacks....''which effect a greater number could also be the same type of therapys for sci... more clever advitisement may be needed for money to be flooded in...

[FlyPelicanFly]

Charlie-boi, on 11 February 2012 - 03:52 PM, said:

It seems like clever ideas like combineing nerve damage from stroke attacks....''which effect a greater number could also be the same type of therapys for sci... more clever advitisement may be needed for money to be flooded in...

There are definitely some 'untapped synergies' between research and translation being undertaken in other neurological conditions. One suggestion made by some advocacy groups is for the likes of Michael J Fox Foundation (Parkinsons), Myelin Repair Foundation (MS) and our very own esteemed SCI organisations to work together.

There are also some really interesting, dynamic groups out here to look up if you're feeling like getting involved in advocacy of some sort:

• Unite2FightParalysis
  
• ARM (Alliance of Regenerative Medicine)
  
• FasterCures
  
• PatientsLikeMe

[Charlie-boi]

FlyPelicanFly, on 11 February 2012 - 10:49 PM, said:

Charlie-boi, on 11 February 2012 - 03:52 PM, said:

It seems like clever ideas like combineing nerve damage from stroke attacks....''which effect a greater number could also be the same type of therapys for sci... more clever advitisement may be needed for money to be flooded in...

There are definitely some 'untapped synergies' between research and translation being undertaken in other neurological conditions. One suggestion made by some advocacy groups is for the likes of Michael J Fox Foundation (Parkinsons), Myelin Repair Foundation (MS) and our very own esteemed SCI organisations to work together.

There are also some really interesting, dynamic groups out here to look up if you're feeling like getting involved in advocacy of some sort:

• Unite2FightParalysis
  
• ARM (Alliance of Regenerative Medicine)
  
• FasterCures
  
• PatientsLikeMe

Thanks for the actual specific informations you have been givving us pelecon. Its whats needed rather than opinions and debates of each others opinions.

It may be likely the bigest step may come in the form of a study or organisation not specific to sci. I might just start a heart disease or cancer organisation with in small print 99% funds going to sci research