[0xSquidy]

Hello everyone! I'm a paraplegic T11-L1 complete injury, from a motorbike accident while heading to work.

I usually write and read at CareCure forum, because it was the first i knew when i was struggling in the hospital rehab. But now i've discovered this wonderful piece of humanity. And i want to share with you something.

I started a thread in the CareCure forum to try to shake people's head a little bit and start working together to speed up the cure that will one day get us off our wheelchairs and born again. The idea is to index all the fundraising associations (they are A LOT of them), know what they are doing, know and track their actions and more important what are the researchers that they are paying doing.
The idea is to create a worldwide group of active and motivated people to speed things up. We want to start putting pressure among the responsible people that is not doing all they can do.

Another way to push is get people's attention and awareness. By designing posters and sticking them everywhere, all the public spots you can thing of (colleges, work, street). Get into TV shows, radio, press, politician events and/or any other kind of event we can get people's attention.

It's not going to be easy. But you all know, what is easy living with a SCI already? We SCI survivors have dealt with the worst conditions ABs can ever imagine. We share the same problems and we have our brain, we have our voice, ... why don't use them?
Everyone wants to live their live the best they can...i want that too. But that is not incompatible at all. I once though of this... should i raise a SCI flag and make noise or live my life the best i can? I first chosed the second option, but now i realized i can do both. We can and achieve both of them. And since we have that opportunity, since we can, we HAVE TO.
For us, and for the people that sadly will join this community.
The hope and deception game that some veterans have been dealing for too many years...yes, that's something we have against this fight, but it's only another thing we have to deal with. And i don't blame that, i'm already tired of this game and i'm just beginning with this crap. Life is a bitch but i don't think we have to quit yelling what we want (now that we know it's possible) only because of that. It's a must.
We survived situations that other people haven't been that fortunated to survive. We deal with life in a way that makes people think that we are all fighters. We have / are facing a lot of stuff like that, lack of energy, stress, depression... i'm not asking for what we are not doing or know how to do already. We survived, we are here, we are ready for that.

All the advocacy groups that already exist need to band together, being united and start making REAL noise is what will take out of this chairs.

We are gathering people, volunteers, sci survivors like me and others in CareCure and we are already working on this. We are profiling some fundations and working on the base ideas of this movement.

Please, anyone who's interested in helping, contact me on CareCure (my name is the same, 0xSquidy) or by e-mail:


Looking forward to meet you guys and start working. Thank you!


We can't expect the rest of the world to care if the sci community doesn't care.

This post has been edited by 0xSquidy: 24 February 2010 - 10:50 PM

[0xSquidy]

More than two hundred visits and not a single reply. Spinal cord injury community is so impassive I start to wonder what do you guys think about when talking about the cure.

Do you really think a beneficial treatment will come along out of nowhere? That's delusional. I wish you open your eyes someday, otherwise we are screwed.

[dangerousdave]

The trouble is Oxy that all those so called charities are well known for ripping people off, raising hopes - then dashing them
When some group finaly decides to move in the right direction - I'll give it some thought
At the moment not one group is moving in the right direction - so I'm waiting

[Tetracyclone]

0xSquidy, on Mar 26 2010, 12:15 PM, said:

More than two hundred visits and not a single reply. Spinal cord injury community is so impassive I start to wonder what do you guys think about when talking about the cure.

Do you really think a beneficial treatment will come along out of nowhere? That's delusional. I wish you open your eyes someday, otherwise we are screwed.

Oxy,

I was one of those 200 visitors, but i left hoping someone else would give you a hand.

Consider the possibility that The Problem does not reside in an "impassive" SCI community, but rather in the tone and approach of your post. If you desire to help people get organized, the first step is to address folks in a way that makes them want to talk to you.

Now, if you are really sure the rest of us are the problem, then there is no need for self-examination, but if you get lonely or bored in that belief, you will find solutions inside yourself. Humility is very attractive, you know...

This post has been edited by Tetracyclone: 26 March 2010 - 07:33 PM

[qbounce]

Ox Squidly,

I can appreciate your passion and even applaud it. But if you want others to respond to you, or even get to know you at all , why not take a minute and fill out your profile page??

This post has been edited by qbounce: 28 March 2010 - 03:31 PM

[StillFingers]

0xSquidy, on Mar 26 2010, 09:15 AM, said:

More than two hundred visits and not a single reply. Spinal cord injury community is so impassive I start to wonder what do you guys think about when talking about the cure.

Do you really think a beneficial treatment will come along out of nowhere? That's delusional. I wish you open your eyes someday, otherwise we are screwed.

Two hundred visits, 2 posts, no info in your profile, have you been in chat...it doesn't look like you care much about participating on this site, yet you require our feedback and insult some with your "delusional" statement.

How about getting to know a few of us first. There are a lot of caring, loving folks here that share intimate details of their lives, are willing to help...good luck with your effort, never mistake caution for non-participation.

[allister]

In the Uk the late 70's/ early eighties, there was a TV series called "Citizen Smith", staring a very young Robert Lindsay. He took the lead as a young guy who thought he could take on the world, change ideas, beliefs, kind of in a marxist way, Desperatly trying to rally troops to back his him, shouting from street corners, and had his base in a grotty bedsit.

Now, I wonder what made me think of that ?

I think that you first have to look at yourself. Acceptance is a huge achievement, medals ought to be awarded for it.
Just because the vast majority have learned this, and have gained their 'medal' that have taken years to achieve, doesn't mean that we are not interested in what you have to say. My journey into a chair was a slow and painfull one, over the course of 8 years. Am I happy about it- - - - - - hell no, but least I have a better quality of life than some people in this world.

I for one can see what you are trying to portray, but by riding high and shouting load only irritates me. Are we really the most hard done to of people? Are there not people in this technologicaly advanced world of ours who are starving? Are there not children born into this world, who through no fault of their own are born with deadly deseases, alot of whom survive by scavaging on rubish heaps? Have no fresh water to drink or bathe with? Their enviroments have no sanitation.?

How dare you state " i'm already tired of this game and i'm just beginning with this crap. Life is a bitch."
You had a motorbike accident whilst riding to work, these people will never have a motorbike, never have a job.

There is a right and a wrong way to go about anything, I feel that you have chosen the wrong way to try and acheive you goal.

There is a saying " And there for the grace of god go I " Who's to say that I or YOU couldn't have been born into life on a rubbish heap? There is always someone else worse off than yourself, always.

If in 5 or 10 or 15 or 20 years time there are great advances in medical achievements, then thats when I time may hopefully come to be raised from our seats. Everything will run its course, shouting never acheived anything.

[mellowgator]

0xSquidy, on Mar 26 2010, 04:15 PM, said:

More than two hundred visits and not a single reply. Spinal cord injury community is so impassive I start to wonder what do you guys think about when talking about the cure.

Do you really think a beneficial treatment will come along out of nowhere? That's delusional. I wish you open your eyes someday, otherwise we are screwed.

have you not heard of the miami project? this organization was established 26 years ago after marc buonconti was injured playing football. he along with his father started this orginization when virtually no one else ever considered that sci could ever be cured. they are very close to a cure. it will happen and it's closer than you think.

my sister married marc's brother and she is in a unique position to havng a brother-n-law and a sister with sci. i myself have been involved with many fundraisers for the cause.

your idea is not all all unique and there are a hundred organizations with this goal. the christopher reeve family has another such organization.

so, no i don't feel bad in not joining your new organization. i am certainly not delusional. i like the others on this site don't appreciate your insults.

mellowgator

This post has been edited by mellowgator: 28 March 2010 - 04:26 AM

[0xSquidy]

First of all, some of you say that have felt offended because of the bad use of my words. I'm deeply sorry about that, it has never been my intention.

dangerousdave, on Mar 26 2010, 06:56 PM, said:

The trouble is Oxy that all those so called charities are well known for ripping people off, raising hopes - then dashing them
When some group finaly decides to move in the right direction - I'll give it some thought
At the moment not one group is moving in the right direction - so I'm waiting

Tetracyclone, on Mar 26 2010, 08:31 PM, said:

Oxy,

I was one of those 200 visitors, but i left hoping someone else would give you a hand.

Consider the possibility that The Problem does not reside in an "impassive" SCI community, but rather in the tone and approach of your post. If you desire to help people get organized, the first step is to address folks in a way that makes them want to talk to you.

Now, if you are really sure the rest of us are the problem, then there is no need for self-examination, but if you get lonely or bored in that belief, you will find solutions inside yourself. Humility is very attractive, you know...

I really don't understand this. You left hoping someone else would give me a hand... why not you? It's just what makes this research slow, everyone seems to be expecting "someone else" to cure us, and years just pass by. Please, be aware of the power of being united and working all of us to a single goal.
So my first big post was in an appropiate tone and you didn't reply a single word, nothing in a whole month (so you could see no one else gave me a hand neither), but you did reply my second one where I used an aggressive tone to critizice my words and say I'd have had been more successful if I had used a better tone? Like I'm doing a selfishness act to my own profit or something.
I can't find the sense in that reasoning but I'm willing to understand your thoughs on this.

qbounce, on Mar 27 2010, 04:36 PM, said:

Ox Squidly,

I can appreciate your passion and even applaud it. But if you want others to respond to you, or even get to know you at all , why not take a minute and fill out your profile page??

Sure, I explained everything about me that is trascendend for the sake of this thread but I've just updated my profile.

StillFingers, on Mar 28 2010, 02:07 AM, said:

Two hundred visits, 2 posts, no info in your profile, have you been in chat...it doesn't look like you care much about participating on this site, yet you require our feedback and insult some with your "delusional" statement.

How about getting to know a few of us first. There are a lot of caring, loving folks here that share intimate details of their lives, are willing to help...good luck with your effort, never mistake caution for non-participation.

Again you are not thinking on helping me out (to help we all in the end, because if i'm not wrong we all share the same condition here) because i don't look like I care much about participating on this website?
I said that I'm also SCIed and willing to push all my energies to find a solution for our problem. I don't know exactly what else is needed for you to participate in what, i repeat, is your very same medical condition.

allister, on Mar 28 2010, 03:27 AM, said:

In the Uk the late 70's/ early eighties, there was a TV series called "Citizen Smith", staring a very young Robert Lindsay. He took the lead as a young guy who thought he could take on the world, change ideas, beliefs, kind of in a marxist way, Desperatly trying to rally troops to back his him, shouting from street corners, and had his base in a grotty bedsit.

Now, I wonder what made me think of that ?

I think that you first have to look at yourself. Acceptance is a huge achievement, medals ought to be awarded for it.
Just because the vast majority have learned this, and have gained their 'medal' that have taken years to achieve, doesn't mean that we are not interested in what you have to say. My journey into a chair was a slow and painfull one, over the course of 8 years. Am I happy about it- - - - - - hell no, but least I have a better quality of life than some people in this world.

I for one can see what you are trying to portray, but by riding high and shouting load only irritates me. Are we really the most hard done to of people? Are there not people in this technologicaly advanced world of ours who are starving? Are there not children born into this world, who through no fault of their own are born with deadly deseases, alot of whom survive by scavaging on rubish heaps? Have no fresh water to drink or bathe with? Their enviroments have no sanitation.?

How dare you state " i'm already tired of this game and i'm just beginning with this crap. Life is a bitch."
You had a motorbike accident whilst riding to work, these people will never have a motorbike, never have a job.

There is a right and a wrong way to go about anything, I feel that you have chosen the wrong way to try and acheive you goal.

There is a saying " And there for the grace of god go I " Who's to say that I or YOU couldn't have been born into life on a rubbish heap? There is always someone else worse off than yourself, always.

If in 5 or 10 or 15 or 20 years time there are great advances in medical achievements, then thats when I time may hopefully come to be raised from our seats. Everything will run its course, shouting never acheived anything.

I can only say the same I said above: you don't have words when I ask for help but you do have plenty of energy to write about my second post.
By the way, you ignore my born conditions and how hard I've fought in my life to achieve my dreams. But i don't think i need to get into that.

mellowgator, on Mar 28 2010, 05:22 AM, said:

have you not heard of the miami project? this organization was established 26 years ago after marc buonconti was injured playing football. he along with his father started this orginization when virtually no one else ever considered that sci could ever be cured. they are very close to a cure. it will happen and it's closer than you think.

my sister married marc's brother and she is in a unique position to havng a brother-n-law and a sister with sci. i myself have been involved with many fundraisers for the cause.

your idea is not all all unique and there are a hundred organizations with this goal. the christopher reeve family has another such organization.

so, no i don't feel bad in not joining your new organization. i am certainly not delusional. i like the others on this site don't appreciate your insults.

mellowgator

I know Miami Project and the work that Marc and Nick have done is simply outstanding. But because of their work is in the good track with Schwann cells that doesn't mean we have to stay sit looking and expecting their outcomes. They are working in one place with one therapy. Spinal cord injuries could be fixed with some complex combinated therapy with Schwann cells as well as it could be with umbilical cord blood, hESC, olfactory ensheathing glia, fetal neural stem cell...and more discoveries are made everyday down the lab. Why don't work to get more of these going and not just one?
By the way, discoveries down the lab don't just jump into our backs in the snap of a finger (lots of people think that)
I am not referring to you, but I know a bit about SCI community and I'm sure you know what i meant.
And the CR fundation... let's just leave that as it is.

There's also something disturbing in the communitys. AIDS, cancer, MS and other communities are so united and so focused in their advocacy that makes SCI community look like we don't give a damn about it. And I'm not making this up.


Finally I started something here in Europe with the help of several SCIed around europe and working with researchers and other parties to speed things up. So for all, once more, I'm sorry if I choosed the wrong words to express my feelings about this, i'm working hard with and for the community and i happen to find too many times people not giving a damn about a cure or research. Well, most of them want a cure but very few works or even coolaborates in anything related to that. And i have talked A LOT, too many people expect miracles to happen rightaway with no efforts.
And this is our only hope, our future.
I'm definately up for more help, thoughs, ideas, criticism...anything.

This post has been edited by 0xSquidy: 31 March 2010 - 03:45 PM

[StillFingers]

Hey there 0xSquidy,

I'll be right up front with you, what got me about your first and second posts was some of your use of language, lack of any profile info and that you seemed to be dismissing all 10,000 plus members after only a brief bit of time on the forum and only 200 hits. So because we weren't fast enough responding to YOUR specific request, geez we might have been helping other members with their daily SCI issues, you then get all upset and tell us...

"We can't expect the rest of the world to care if the sci community doesn't care."

Well now we know; thanks for filling out your profile, that English isn't your first spoken/written language, you are passionate about raising SCI awareness throughout the world, and willing to put your energies into this NEW PERSONAL QUEST to benefit all.

We also know that you haven't understood most of anything we have said in reply or taken the time to read member profiles or read this site much. You mistake my request of you for more personal info, as my disinterest in your quest, and that is not the case, as I think that parts of your idea/quest have merit and might indeed benefit all...I just wanted/needed a bit more effort on your part, to demonstrate your understanding of SCI.

With that said, the gathering together of information from all organizations that support the SCI community and that are engaged in researching a possible cure, is a fantastic idea! Having info, profiles and links on a single site might help everyone understand just how much is or isn't being done and allow many to direct their efforts where they personally see the most benefit for doing so.

This is one big task you are attempting and while I don't want to hinder your excitement, might I suggest that you and you current band of supporters put up a more formal plan, perhaps a link to a web page(s) that summarize/outline your ideas, actions, events, etc. You might also consider outlining the skill sets/talents for people that might help you bring your idea to life. Grassroots efforts are often very successful, leverage the SCI community as best you can, many are top shelf professionals; designers, writers, speakers, organizers/managers, project planners, etc. You can check out my profile, if there is something you think I might help you with, send me a message/email, and we'll see where things lead.

Do yourself a favor tho, give people more time to respond, to learn more about your plans and don't think us disrespectful/uninterested just because we don't respond quick enough for your liking. All of us have lives, many attend school/college, many of us work and/or have families that require our attention. SCI may be our common condition. Life and all it's variety, struggle, complexity still flourishes and making the time for another worthy cause...is often quite challenging.

As I stated in my first reply, good luck with your effort!

Regards,

Jerry

This post has been edited by StillFingers: 01 April 2010 - 04:03 AM

[guido]

Do you know about The Institute of Spinal Cord Injury? One of the founders has been working tirelessly since the 1980s since her daughter was injured. You might like to check this out.

I think there are a LOT of people who are trying to do things to help, but I believe one of the problems is that they are all small groups trying to fight a corner (and in some case attach their name to their cause) rather than use joined up thinking and work together. Doesn't mean they restrict the scope of research, but just they could be a stronger and bigger voice.

Good luck with your efforts.

[allister]

Hey OxSquidy

Thanks too for taking the time to read and comment on my previous reply. . . . . . .

" I can only say the same I said above: you don't have words when I ask for help but you do have plenty of energy to write about my second post.
By the way, you ignore my born conditions and how hard I've fought in my life to achieve my dreams. But i don't think i need to get into that. "

Er.....What born condition is this?
Your profile simply states ""

Hello everyone!
I'm a paraplegic T11-L1 (T12 i'd say) complete injury, from a motorbike accident while heading to work. I have no motor or sensory function below my belly button.
I quited all pills although my pain level gets high sometimes, i prefer it without pills.

I am born and raised in Spain so my english may sound bad, excuse me for that. I'm up to corrections! "


It might be me, but I must be missing something hidden in your brief profile details, because the only birth condition you state is that you were born and raised in Spain, so your english may sound bad.

I wouldn't class being Spanish a defect. I love Spain very much, Nor would I say you english was bad. Its far better that my Spanish.

I to have no motor function below the belly button, and very reduced sparse sensory function , sp cath, poor bowel function and a manual chair. But life is easier with the help of med's, I prefer it that way. We struggle enough, so why decline what little help there is?

We all have axes to grind, but here, we never throw them at each other.

Like my first post said to close. . . . . . .Everything will run its course, shouting never acheived anything.

All the best for your future.

This post has been edited by allister: 03 April 2010 - 12:54 AM

[allister]

Hope we haven't scared you away oxy ?

[0xSquidy]

allister, on Apr 14 2010, 12:30 AM, said:

Hope we haven't scared you away oxy ?

Not at all my friend! But some of your posts are long and i don't like to give half responses back and with my lately lack of time i decided to put that on hold. I keep working here in my country and there's ton of things to do and a lot of battle to do with ignorance and negative/lazy people... different day same old story.

But the overall picture is always the same, some would agree and some other won't, i don't intent to solve the whole equation. It's just the way it is.

Greets.

[CrazyLucky]

Can I add some input? I have done work with the Miami Project and agree it is a wonderful cause. I think this post has lost its original intent through back and forth in which the end object is to only prove a point from one side or another, and not to actually move forward with the original intent of the message. My boss always says, whether you like it or not, perception is reality. If people perceive the original message (no matter the intent) as being a bit aggressive, then you will lose them. I agree, fill out the profile, check around with some of the locals, etc. I think your idea is awesome. A one-stop-shop of SCI research groups, their focus, and a summary of their activities would be wonderful and I applaud the notion. Just rework the approach a bit.

I speak from experience. When I decided to do my rides for the Miami Project, I sent out a few messages that were more alienating than inclusive, despite my best intents. I'd be happy to help out as I can to assist with messaging to try and achieve getting the information you are seeking. Please let me know and don't take the posts personally. Everyone here is good people as I'm sure you are, but there is a touch of initial and necessary respect in posting in this group, and I think rightfully so. The SCI community, I have learned, is one that is rarely if ever given a fare shake by the majority of the rest of the world (perhaps myself included from time to time pre-SCI). So, while everyone is generally EXTREMELY welcoming, an initial grace period of gaining trust is respectfully warranted. As someone who has it better than most, I expected to get booted from these parts pretty quickly, but everyone has been very welcoming, and I don't know how I would be where I am without them. Take 'er easy.

[FlyPelicanFly]

CrazyLucky - good points.

On a related note, what makes you feel that the Miami Project is the best bet? I dont begrudge the work that they have done but from my albeit limited perspective SCI research is now at the stage where unless it is looking to get to the clinic soon there is a massive risk that the research could end up nothing more than a big fat white elephant. It's now a race. The science is there. So now it is time to make sure the limited budget and resources is used efficiently to get the therapies to clinic. Wise Young has setup SCINetUSA and SCINetChina clinical trials networks on a fraction of the budget that the Miami Project has used in the last decade. He is taking one therapy to trial this year and is raising money with the justadollarplease campaign to take promising trials to the clinic. Wouldnt it now be more prudent to draw a line under research now and concentrate on getting clinical trials underway?