49 replies to this topic

[m r]

[size=4]Hi,
I have only just gathered the courage to get back on to this forum. The last time I posted something on this site I was categorised as someone who was a fraud trying to advertise stem cell cures!
my outrage had been and remains that autologous stem cell surgery was and is not getting media attention because drug companies back embryonic stem cell research or maybe because until they could get proper patents to earn good money they are not ready for people to get cured.
I have been a paraplegic for the past 13 years. Level T12/ L1, complete.
I have been self employed most of the time, but for the last 5-6 years have been out among the rest of the world. I opened a boutique for high end clothes, did some selling on the internet and finally landed up in call centre jobs.
Recently I became aware of stem cell surgery and being an Indian it was easier for me to opt for it since I did not need to cross any oceans to get to the Hospital.
After my surgery I have gained a faint sense of touch if I rub gently on my upper thigh. I can also contract some of my thigh muscles and I have only had surgery on the 28th of March!
The place I got this done is Lifeline Multispeciality Hospital In Chennai (Madras), India.
Take care
Bye

[nomis]

Interesting info m r. Also, it'll be interesting to see how these two different approaches of research progress and if indeed you have a strong point.

[jordanjames]

[quote name='Rudy' post='39161' date='Aug 28 2007, 06:22 PM']I am a 45 year old C3-4 quad. This March will be 30 years since my accident [my, the years do go by fast]. Up till recently I always held out hope that they would soon find a cure for SCI. But after reading how far the scientist's really are in research for the cure, I finaly have come to the conclusion that the cure is 20 to 30 years away. To late for me.
After all the years of thinking I may walk again, its been a hard realisation. GOODBYE HOPE ![/quote]
[quote]

[wuzzbie]

I still dont get where u guys are getting ur figures from; Yong the 50-100 years? i know u might be thinking that i am Naive as i have only been paraplegic for 10 months, but its not like i think they are gonna have a cure this year and not even a cure in the strictest sense of the word soon, but a serious improvement could easily be found this decade. Firstly as i have mentioned before there are some pretty promising studies going on atm and more and more people are entering the medical market constantly meaning that more and more people are trying to find the cure first, meaning that there could be completely new ideas starting, as to go from idea to marketed cure can take less then a decade, but obviously probably would take longer depending on who is doing the research. Again i am not saying that there will be a cure within the next 10 years im just saying it is very much within the realms of possiblilty, also its nothing like a cure but that thing about the brain thing that can sense changes in ur neurons so that u can control something just by thinking about it sounds F**cking awesome and if it is developed enough could enable us to just feel those things that we miss so much.

[Yong]

wuzzbie, on Apr 17 2008, 04:43 PM, said:

I still dont get where u guys are getting ur figures from; Yong the 50-100 years?

wuzzbie, I don't think you understood what I wrote.

What I said was that a cure that may be 50 to 100 years from now can be achieved sooner if we don't stay on our butts and just HOPE for a cure.

My point was not about the amount of time it will take for a cure to be finalized but rather if all of us bring more awareness into SCI, that cure (however long it may be) can come faster.

NOBODY knows how long it will take. For all we know a cure may just be imminent. Or it may take 100 years. A lot of are just saying not to give up hope but also not to forget about living in the present.

[wuzzbie]

Yeah ok, but i am all up for doing stuff to help i am doing 2 charity walks (not that i can exactly walk ) next year to raise money for it, but still even if we all did nothing the people already doing research will find the answer before then, but i get ur point.

Yes as i said in a previous message there is no point in giving up hope even if all the current research projects fail, but that doesnt mean that we have to sit around all day praying for an answer to come just have to multi task hope whilst living out the life. And u say NOBODY knows, its true no one knows exactly but i would imagine there are a few people that know how close they are currently, which is probably quite different to what we know.

[Ches]

wuzzbie, on Apr 18 2008, 10:25 AM, said:

i would imagine there are a few people that know how close they are currently, which is probably quite different to what we know.

Makes you wonder...

[Quad65]

I fractured my neck when I was 17 back in 1965. It will be 43 years as an SCI this August. My mother, well-intentioned as she was, used to urge me to follow up on every announced potential cure. I never did. Did I give up hope? No. I felt I was and still am realistic, though.

I can't afford to waste precious time and energy chasing smoke. I have too much to do and too little resources left to do it. I have limited money, mobility, strength, emotional resources. If I use it all looking for and hoping for the next Big Cure, I won't have any left for the life I live day-to-day.

Am I 'hopeless'? No. If a cure comes, it comes. Whenever. No amount of wish, worry, or fret on my part will bring it a second sooner. If it occupies all of my attention, I'll miss everything in the here-and-now. So, hope for a cure is tucked away in a safe place. I know where it is. I can always take it out and look at it when I feel like it. Like a baseball card collection from childhood. I'll keep an eye and an ear out, but I have other stuff to do. That's me.

Other people seem to obsess over finding or hoping for a cure. It always struck me as being in denial to a degree. Like it or not, this is now our life. Our real life. We must deal with it daily. We can't put it on hold, waiting for the elusive Cure. We can't have the mindset that once we find The Cure, we can resume our real life. Accept the fact you are living your real life.

Pick up your cards and play your hand.

[E-DOG]

Quad65, on Apr 30 2008, 11:58 AM, said:

I fractured my neck when I was 17 back in 1965. It will be 43 years as an SCI this August. My mother, well-intentioned as she was, used to urge me to follow up on every announced potential cure. I never did. Did I give up hope? No. I felt I was and still am realistic, though.

I can't afford to waste precious time and energy chasing smoke. I have too much to do and too little resources left to do it. I have limited money, mobility, strength, emotional resources. If I use it all looking for and hoping for the next Big Cure, I won't have any left for the life I live day-to-day.

Am I 'hopeless'? No. If a cure comes, it comes. Whenever. No amount of wish, worry, or fret on my part will bring it a second sooner. If it occupies all of my attention, I'll miss everything in the here-and-now. So, hope for a cure is tucked away in a safe place. I know where it is. I can always take it out and look at it when I feel like it. Like a baseball card collection from childhood. I'll keep an eye and an ear out, but I have other stuff to do. That's me.

Other people seem to obsess over finding or hoping for a cure. It always struck me as being in denial to a degree. Like it or not, this is now our life. Our real life. We must deal with it daily. We can't put it on hold, waiting for the elusive Cure. We can't have the mindset that once we find The Cure, we can resume our real life. Accept the fact you are living your real life.

Pick up your cards and play your hand.

Couldn't have said it better myself.
Well, that's not true, but you ARE right-on the money.
E-dog

[topperf]

Couldn't have said it better myself.
Well, that's not true, but you ARE right-on the money.
E-dog


A reply almost without b***, nice dawg, keep it up.

[hurbshankin]

Here is the latest research I've found. Take it for what it's worth, who knows?

Ray of hope for spinal cord patients
By Bill Scanlon, Rocky Mountain News (Contact)
Originally published 09:19 a.m., March 7, 2008
Updated 09:19 a.m., March 7, 2008

Photo by Courtesy: University of Colorado

Spinal cord injuries injected with astrocytes are beginning to reconnect, as indicated by the long, green fibers. In tests, 40 percent of nerve fibers crossed spinal cord injuries in just eight days.


Photo by Courtesy: University of Colorado

Nerve fibers that have either failed to cross a spinal cord injury in untreated spinal cords.



The researcher who found a way to get paralyzed rats back walking is now in Colorado and predicts huge breakthroughs in treatment of human spinal cord injuries in half a decade.
"We've reached a stage where I'm comfortable saying that within the next five years, we will have truly effective new therapies from people with spinal cord injuries," Dr. Stephen Davies said this week.

Talent scouts last year persuaded Dr. Stephen Davies to leave his neurology lab at the Baylor School of Medicine in Texas for the new Anschutz Medical Campus in Aurora, part of the University of Colorado's Health Sciences Center.

Davies brought with him his methods of regenerating damaged spinal cords by suppressing scar tissue and by injecting special cells into the injury.

The two-pronged attack is being used on rats right now, but he predicts there will be human trials within four or five years.

First, he uses a naturally occurring molecule, decorin, to suppress the scar tissue that forms when a spinal cord has been badly bruised or severed.

By blocking the formation of scar tissue, decorin helps the sensory nerve fibers cross the area of the spinal cord injury and reconnect to viable nerves, said Davies, an associate professor in CU's department of neurosurgery and head of the neuro-repair lab.

In rats, it took just four days, said Davies, whose innovation won the American Spinal Injury Association's Breakthrough Award in 2006.

His lab has the gene for the molecule and is working with a biotech company to develop a pharmaceutical-grade decorin that will be ready for the human trials.

Integra Life Sciences out of Piscataway, N.J., is developing the decorin.

The decorin molecule could prove to be helpful even for those people whose spinal cord injuries were five or more years ago by breaking down the scar tissues that has blocked the nerves from attempting to repair themselves.

Davies also has tapped into cells in the human nervous system to help repair spinal cord injuries.

Astrocytes are the cells that make up 70 percent of the nervous system, even though they are not as well known as neurons, he said.

Working with precursor cells, Davies and his colleagues came up with a way to nudge the precursor cells into astrocytes that have a particular knack for healing.

"They're able to promote robust regeneration of nerve fibers across the injury," Davies said. In the rats, "40 percent of the sensory nerve fibers crossed the spinal cord injuries in eight days when we put in the astrocytes."

Within 14 days, the rats were back to their walking pace before their injuries. "We're very excited about the potential of these cells," Davies said.

When the astrocytes are injected at the point of injury, not only do they form a bridge, but they protect the cells in the injured spinal cord from dying, Davies said. That allows the surviving circuits to make new extra connections on their own.

"The idea is to combine the two therapies," decorin and astrocytes, he said.

He is hoping the Department of Defense will continue to show interest in the two therapies.

"If decorin turns out to be as promising as we think it is, it may be included in a kit on the battlefield," Davies said. Medics could administer decorin to prevent scarring from the early moments of the spinal cord injury. "Early intervention is always the best."

Davies got his seed money from the Christopher Reeve Paralysis Foundation, now called the Christopher and Dana Reeve Foundation.

Davies expects to work with the world-renowned Craig Rehabilitation Hospital in Englewood because physical therapy is such an important complement to genetic and cell-based treatments for patients.

Dr. Wise Young, a neuroscientist and director of Rutgers University's W.M. Keck Center for Collaborative Neuroscience, recently commented on Davies' work, saying, "This is going to create a lot of excitement in the field," and will give a lot of impetus to the push for human trials of spinal injury repair.


Hurb

[maloel]

Rudy, on Aug 28 2007, 05:22 PM, said:

I am a 45 year old C3-4 quad. This March will be 30 years since my accident [my, the years do go by fast]. Up till recently I always held out hope that they would soon find a cure for SCI. But after reading how far the scientist's really are in research for the cure, I finaly have come to the conclusion that the cure is 20 to 30 years away. To late for me.
After all the years of thinking I may walk again, its been a hard realisation. GOODBYE HOPE !

hi Rudy
the situation is changed, there is now more hope in the horizon.......... maybe a few more years to go, but i'm sure the cure is comming.

[Yasko]

Quad65, on Apr 30 2008, 11:58 AM, said:

I fractured my neck when I was 17 back in 1965. It will be 43 years as an SCI this August. My mother, well-intentioned as she was, used to urge me to follow up on every announced potential cure. I never did. Did I give up hope? No. I felt I was and still am realistic, though.

I can't afford to waste precious time and energy chasing smoke. I have too much to do and too little resources left to do it. I have limited money, mobility, strength, emotional resources. If I use it all looking for and hoping for the next Big Cure, I won't have any left for the life I live day-to-day.

Am I 'hopeless'? No. If a cure comes, it comes. Whenever. No amount of wish, worry, or fret on my part will bring it a second sooner. If it occupies all of my attention, I'll miss everything in the here-and-now. So, hope for a cure is tucked away in a safe place. I know where it is. I can always take it out and look at it when I feel like it. Like a baseball card collection from childhood. I'll keep an eye and an ear out, but I have other stuff to do. That's me.

Other people seem to obsess over finding or hoping for a cure. It always struck me as being in denial to a degree. Like it or not, this is now our life. Our real life. We must deal with it daily. We can't put it on hold, waiting for the elusive Cure. We can't have the mindset that once we find The Cure, we can resume our real life. Accept the fact you are living your real life.

Pick up your cards and play your hand.

Indeed!

[edlee]

Quad65,,,,, well said!

"Don't give up hope",,, how many times have you been told that by well meaning friends and acquaintences? And we all know what HOPE they are talking about. THE CURE!!!

I've not been among you as long as Q65 has,, but I relate to his reasoning. As far as hope goes,, I never give it up,,, I am just hoping for different things than others might think I should.

The things higher on my list of hopes than the elusive cure, are,, that it won't rain on Saturday when I'm fishing. That my new grandson will smile at me,,, that I don't get outbid on ebay.

Of course I dream of walking,, in fact, I've never had a dream in which I didn't walk,, or run.

I love the line about having my hopes tucked away in a safe place,,,along with all the others, old and new. It's amazing , when you look back,, at the hopes you once had,, and whether they came true,,, or the ones you had come true, and wish they hadn't.

They say to be careful what you wish for,,, you just may get it.

ed

[E-DOG]

maloel, on May 15 2009, 05:45 AM, said:

Rudy, on Aug 28 2007, 05:22 PM, said:

I am a 45 year old C3-4 quad. This March will be 30 years since my accident [my, the years do go by fast]. Up till recently I always held out hope that they would soon find a cure for SCI. But after reading how far the scientist's really are in research for the cure, I finaly have come to the conclusion that the cure is 20 to 30 years away. To late for me.
After all the years of thinking I may walk again, its been a hard realisation. GOODBYE HOPE !

hi Rudy
the situation is changed, there is now more hope in the horizon.......... maybe a few more years to go, but i'm sure the cure is comming.

Great idea!
Now he'll go back to sitting there wasting his time hoping beyond all hope that a cure is just around the corner and if he just wishes and wishes with all his might maybe, just maybe, he'll get to walk again sometime in the near future. Some day.

That is...

After the FDA, AMA, and another two hundred and sixty three different government agencies finally get done screwing with it. At which point it probably won't work any way because of the wack-a-doo restrictions placed on the production, the chemicals needed, and the politically correct number of the right ethnic groups used for the manufacture of it. And then there's the taxes, surcharges, hidden fees and enigmatic handling charges that are all so necessary for the insanely huge pharmaceutical conglomerates to grow ever increasingly fat off of.

Yessireebob, just around the corner, take a look. No, not that corner, the next one. No, not that one, the next one. Squint real hard, don't ya see it? That tiny speck just over the horizon. If ya just get up outa yer wheelchair and jump up really high you can barely make it out. Keep jumping. Just a little higher. Come on, you can do it. Just hope a bit harder. That's it.

Getting tired yet?
Thought so. Why not sit back down and relax a bit. Maybe think about something else for a while. Smoke a joint, have a drink, maybe read a little. Here's an idea, ask yourself, "why is the world round?" Hum. Could be, originally it was cube shaped and some engineers got together and shaved off the corners for a more uniform look. Spruce it up a bit. Nothin' nicer than a nice round planet I always say. How 'bout you?

Have you ever noticed, no matter how hard and fast you roll trying to get to the horizon, it never gets any closer. It's nothing but exercise.
An exercise in futility.

E-dog

[nomis]

No, it's really coming. I first heard that in 1970. There's been a few disappointments since then but NOW it's really coming. Buy new shoes for the big moment. Remember to shave your legs after all those years of inactivity. Hallelujah, I feel the power....no, hold on, it's just the music turned up too loud.

Edited by nomis, 17 May 2009 - 10:08 AM.

[topperf]

Hope is a good thing as long as you're not living in the future. - sarcasm and studied indifference on the other hand are more like a two edged sword, good clean family entertainment but also great excuses for not putting ones neck out (pun intended) for research funding and work for a better future for those not injured yet.

[Hikkakaru]

We are closer now than ever to a cure, just like they said in the 70's that they were closer then than ever.

It's not wrong to say, it's completely true. Just don't bet on dates.

[Yong]

Hikkakaru, on May 18 2009, 10:09 AM, said:

We are closer now than ever to a cure, just like they said in the 70's that they were closer then than ever.

It's not wrong to say, it's completely true. Just don't bet on dates.

haha. makes total sense.

All of us are closer now than ever to our death beds. But don't let that deter you from living the present.

[Travelling Blackbird]

I appreciate these two quotes from this thread: "Pick up your cards and play." "Don't let being a day closer to dying stop you from living in the present."

I had my surgery, and I had my rehab, and I have my physiotherapy. I had one extra surgery that was an attempt to improve things, one attempt beyond the "normal" response to the type of head injury, but that was that. I keep abreast of what's going on in the world, but I never let myself become cure-fixated. I feel that it would be the wrong way for my energies to go. I support promising research when I hear about it, but I find it more useful to live the life I have, and live it as best I can.