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Quadriplegic & Paraplegic Spinal Cord Injuries > Disabled Living & Spinal Cord Injuries > Spinal Cord Injury Research, Cure & Treatment News
Rudy
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 !
jenn2782
Aww Rudy..Don't feel that way. I know thats easy for me to say but Hold on to your hope. You never know what tomorrow may bring. There could be a major break through tomorrow. Look at how far China has progressed with Stem Cell. They have treatments that restore function and it won't be too long before the US will too.

Stay Positve and keep hope alive.
nomis
With apologies to Jenn2782, I’d disagree with hanging on to hope.

Rudy, it sounds like you’ve weighed up the situation for yourself after many years SCI and come to a decision. I respect that decision, not because I know any better, but because you made it for yourself.

My own understanding on this is that no significant “cure” is going to be available to me in my lifetime but there may be for younger, newer SCI’s. To me, it’s a big relief not to be searching and waiting for a medical breakthrough. It means I can accept what is and get on with my life.

Hang on to hope where it is realistic. Get on with your own life when that seems more real.
wheeliebear75
"Letting it go" is not the same thing as "giving in". And I'm with nommis in that since YOU were the one who decided that it would be a mute point to "hold out for" it was probably a good one. My level of injury is nowhere near as high as yours, and so when I say this please DON'T think I'm saying they are; it may not be apples to oranges but at least oranges to tangerines. LOL But once I gave up on the idea of "normalcy" and accepted the fact that I was what I am. I found a sort of "peace" with that. I stopped feeling like all I was doing was getting through the next day.....because it might be different......I might be different. Don't look at the loss of the idea of a "cure" but instead the weight off your shoulders (in time) from no longer worrying about it.
Alin Steglinski
QUOTE (Rudy @ Aug 28 2007, 12:22 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 !

all depends on your theory, my theory is "walking sucks anyways" and if your on a ventilator "breathing sucks anyways. let the machines do it!" and for those of you who use AAC (alternative augmentative communications) "speaking sucks, i let my computer do it for me"
dorkette
Hi! I'm with the rest, I believe that hope and faith and such is a solely independent decision so I'm not here to be convince you of something either way.

However... haha... I've been SCI for 19 years, whole life (which seems sort of cheap compared to your 30) but I've never really thought that one day I'd be magically "cured." I never thought if I went to someone's church and they pressed their hand to my forehead and screamed halleluiah really dramatic I'd automatically jump up and do a little jig screaming "I'M SAVED!" (haha, sorry stuff like that just cracks me up) Not to saying that I'm objected to falling asleep tonight and God doing a little divine intervention miracle and me wake up tomorrow doing cartwheels, ;) If that happens I'll be sure to give a shout to you guys on the national news, hahaha.

On the flip side, I've always hoped/wished/prayed for some really, crazy smart people out there to find a way to fix a spinal cord (personally I believe that God has a little helping hand in science and medicine though). Even now I live with the idea that they will do it someday whether I'm still around to see it or not. I don't think I've given up on the idea that they won't find a cure in my lifetime but rather I live with the thought process of if they don't that’s okay, if they do even better. However at the same time I've wondered that what if they come out with some really promising but still experimental procedure... would I do it? And I've always thought that it all depends on what stage of my life I was that. If I had a family, husband, kids.

side note: Watching HGTV Design Star and one of them is doing a bedroom for a girl in a wheelchair (usually when I happen to see stuff like that I find at least half a handful or problems with the room, hee.)

Also You probably didn't mean it like this, but you say 45 like it's ancient. Now I'm off to roam the SCI research thread.....
Alin Steglinski
QUOTE (dorkette @ Sep 3 2007, 12:35 AM) *
Hi! I'm with the rest, I believe that hope and faith and such is a solely independent decision so I'm not here to be convince you of something either way.

However... haha... I've been SCI for 19 years, whole life (which seems sort of cheap compared to your 30) but I've never really thought that one day I'd be magically "cured." I never thought if I went to someone's church and they pressed their hand to my forehead and screamed halleluiah really dramatic I'd automatically jump up and do a little jig screaming "I'M SAVED!" (haha, sorry stuff like that just cracks me up) Not to saying that I'm objected to falling asleep tonight and God doing a little divine intervention miracle and me wake up tomorrow doing cartwheels, ;) If that happens I'll be sure to give a shout to you guys on the national news, hahaha.

On the flip side, I've always hoped/wished/prayed for some really, crazy smart people out there to find a way to fix a spinal cord (personally I believe that God has a little helping hand in science and medicine though). Even now I live with the idea that they will do it someday whether I'm still around to see it or not. I don't think I've given up on the idea that they won't find a cure in my lifetime but rather I live with the thought process of if they don't that’s okay, if they do even better. However at the same time I've wondered that what if they come out with some really promising but still experimental procedure... would I do it? And I've always thought that it all depends on what stage of my life I was that. If I had a family, husband, kids.

side note: Watching HGTV Design Star and one of them is doing a bedroom for a girl in a wheelchair (usually when I happen to see stuff like that I find at least half a handful or problems with the room, hee.)

Also You probably didn't mean it like this, but you say 45 like it's ancient. Now I'm off to roam the SCI research thread.....


well i have an idea on how to "fix" spinal cords..

what about creating a fiberoptic spinal cord, cleaning out the remaining spinal cord, implanting a small encoder at the brainstem which would translate the neurochemical signals back into totally electrical signals as they were in the brain. the old spinal cord would be removed and the new fiberoptic spinal cord would be inserted and connected to all the nerves and everything, i estimate that the operation would be very lengthly and delicate therefore i estimate that one fiberoptic spinal cord could take 2-3 days or longer in the operating room (thats with neurosurgeon(s) working 24 hours on it.
Somebody
I never thought I'd walk again on this earth with my human body.
If they found a cure, Medicare probably wouldn't pay for me to get it.
They'd pay a million to care for me like this,
than a half million for a cure, with their weird logic.

I look forward to walking in Heaven with my new heavenly body.


Here on earth my biggest wish is for someone to come get me up.
Health Care stinks. smile.gif
hockeydahc
QUOTE (Alin Steglinski @ Sep 3 2007, 03:16 AM) *
QUOTE (dorkette @ Sep 3 2007, 12:35 AM) *

Hi! I'm with the rest, I believe that hope and faith and such is a solely independent decision so I'm not here to be convince you of something either way.

However... haha... I've been SCI for 19 years, whole life (which seems sort of cheap compared to your 30) but I've never really thought that one day I'd be magically "cured." I never thought if I went to someone's church and they pressed their hand to my forehead and screamed halleluiah really dramatic I'd automatically jump up and do a little jig screaming "I'M SAVED!" (haha, sorry stuff like that just cracks me up) Not to saying that I'm objected to falling asleep tonight and God doing a little divine intervention miracle and me wake up tomorrow doing cartwheels, ;) If that happens I'll be sure to give a shout to you guys on the national news, hahaha.

On the flip side, I've always hoped/wished/prayed for some really, crazy smart people out there to find a way to fix a spinal cord (personally I believe that God has a little helping hand in science and medicine though). Even now I live with the idea that they will do it someday whether I'm still around to see it or not. I don't think I've given up on the idea that they won't find a cure in my lifetime but rather I live with the thought process of if they don't that’s okay, if they do even better. However at the same time I've wondered that what if they come out with some really promising but still experimental procedure... would I do it? And I've always thought that it all depends on what stage of my life I was that. If I had a family, husband, kids.

side note: Watching HGTV Design Star and one of them is doing a bedroom for a girl in a wheelchair (usually when I happen to see stuff like that I find at least half a handful or problems with the room, hee.)

Also You probably didn't mean it like this, but you say 45 like it's ancient. Now I'm off to roam the SCI research thread.....


well i have an idea on how to "fix" spinal cords..

what about creating a fiberoptic spinal cord, cleaning out the remaining spinal cord, implanting a small encoder at the brainstem which would translate the neurochemical signals back into totally electrical signals as they were in the brain. the old spinal cord would be removed and the new fiberoptic spinal cord would be inserted and connected to all the nerves and everything, i estimate that the operation would be very lengthly and delicate therefore i estimate that one fiberoptic spinal cord could take 2-3 days or longer in the operating room (thats with neurosurgeon(s) working 24 hours on it.


that sounds good. or the whole doctor octopus thing. and you get extra arms that way. and all sorts of abilities.
dorkette
QUOTE
well i have an idea on how to "fix" spinal cords..

what about creating a fiberoptic spinal cord, cleaning out the remaining spinal cord, implanting a small encoder at the brainstem which would translate the neurochemical signals back into totally electrical signals as they were in the brain. the old spinal cord would be removed and the new fiberoptic spinal cord would be inserted and connected to all the nerves and everything, i estimate that the operation would be very lengthly and delicate therefore i estimate that one fiberoptic spinal cord could take 2-3 days or longer in the operating room (thats with neurosurgeon(s) working 24 hours on it.


When I was like 6 I asked my dad why couldn't they just "fix" a spinal cord and he said it was like taking a ribbion and cutting it and half then trying to reconnect it. And at first I was sort of excited because that didn't seem like it'd be too difficult because you know, doctors are supposed to be smart and stuff. But then he was now instead of one ribbion, it'd be like 2,000 and they'd all look the same and not only would you have to reconnect all of them you have to figure which half correctly go with which. So I was thinking well, that complicates things but still sounds do-able until he told me it'd take way to long that a person would bleed out and die on the table.

Even then I knew and know now that he has no medical experence whatsoever and that he was probably only making up stuff as he went along to placate me. But for somereason your 2-3 days made me think of it. Although a fiberoptic spinal cord would be cool as hell. Has anyone seen Bisentenial Man with Robin Williams? It makes me think of that too.
wheels5894
I think you dad was right, Dorkette! The spinal cord is immensely complicated and joining cell to cell would not only be very time consuming but would need high power magnification and a yet uninvented method of joining. Surgery is not going to solve the problem.

Of course, very few cords are severed so looking through and finding which nerves are damaged and which not. Risks would be damaging working nerves in the process. not that practical I think.

I think stem cell treatments might be made to work but the joining up of upper and lower might well men the wrong bits join together to afterwards, telling you right leg to lift might have an entirely other action.

Whilst I think being 'normal' again would be great, it is not going to happen in my lifetime I think, but who knows.
Somebody
On 20/20 at least 10 yrs ago,,,,

they showed a Chinese man with a rat.
He severed the spinal cord completely mid waist.
The mouse was running around dragging his back legs.

Then it showed the rat 6 months later running around normal.
Completely healed with stem cells.

So we can be healed if they'd let us.
Captain Pike
Right somebody, all rats look alike to me, I don't know, call me prejudiced.

I have had a complete C5 injury for only 2+ years, and I remember just a little bit ago I passed through another membrane of denial. Now my attitude towards PT is a lot better. I really (secretly) expected that after a few months, I would begin to start twitching my toe, or moving my legs around a little. What I DO have new happening is some very strange and interesting pain!

If you imagine the spinal cord being a big cable with many hundreds of millions of very small, similar looking wires, and the SCI a cut through, or terribly mashed assult to that wire, then you begin to see the very terrible, simple impossibility of a repair. That fiber optic idea, while ingenious, would probably result in a cable 6 inches in diameter. Not to mention what the connector would look like.

What they ARE doing in America is transplanting nerves, to allow us to move a finger, for example, using a nerve that previously controlled wrist flexion. I miss being able to give people "the finger". yahoo.gif

I think some level of acceptance is the key, whether we'll ever get better or not. I get terribly bummed sometimes, and then, there are the other times. Check out these photos, of me bringing kids to the beach... it never was better than this back when I was able bodied.



Trail-Boss
[I think some level of acceptance is the key, whether we'll ever get better or not. I get terribly bummed sometimes, and then, there are the other times. Check out these photos, of me bringing kids to the beach... it never was better than this back when I was able bodied.]

Hey Cap'n Pike,
What a great idea. Trail-Boss will be 2yrs. post, come Jan.
He used to do so much with the grandkids, horses, tractors, 4wheelers, the list goes on and on. Memories are the best things you can leave your children. I am going to go out and rig something up right now...I wonder if the pony would lead behind him, well, we'll find out...YEE-HAAA!!!
Great pix!!!

Stick-Tight
Alin Steglinski
QUOTE (Captain Pike @ Sep 4 2007, 02:39 PM) *
Right somebody, all rats look alike to me, I don't know, call me prejudiced.

I have had a complete C5 injury for only 2+ years, and I remember just a little bit ago I passed through another membrane of denial. Now my attitude towards PT is a lot better. I really (secretly) expected that after a few months, I would begin to start twitching my toe, or moving my legs around a little. What I DO have new happening is some very strange and interesting pain!

If you imagine the spinal cord being a big cable with many hundreds of millions of very small, similar looking wires, and the SCI a cut through, or terribly mashed assult to that wire, then you begin to see the very terrible, simple impossibility of a repair. That fiber optic idea, while ingenious, would probably result in a cable 6 inches in diameter. Not to mention what the connector would look like.

What they ARE doing in America is transplanting nerves, to allow us to move a finger, for example, using a nerve that previously controlled wrist flexion. I miss being able to give people "the finger". yahoo.gif

I think some level of acceptance is the key, whether we'll ever get better or not. I get terribly bummed sometimes, and then, there are the other times. Check out these photos, of me bringing kids to the beach... it never was better than this back when I was able bodied.






he he now that is what i call talking advantage of the powerchair biggrin.gif

oh and nice ride you got TDX5 TR+ELRs not extremely sure on the ELR's but its obvious its a TR rig i can tell biggrin.gif

you can see a description of the powerchair i will most likely be getting at http://alins.zapto.org/Alin_Steglinski/The_Powerchair.html

you can check out the rest of my website there too

and about the spinal cord cable/connector it would not need to be that huge in diameter due to the new technology of nano-fiberoptics which would probably be able to be 0.5-1.5 inches diameter, the brain stem would be rewired to a probably coaxial "screw/lock" connector since they exhibit easy replacability and impeccable resiliance to shock and movement
wheeliebear75
Hey CaptPike those are cool pix, looks like you and your little girl are both having a blast.
Alin Steglinski
QUOTE (wheeliebear75 @ Sep 4 2007, 07:11 PM) *
Hey CaptPike those are cool pix, looks like you and your little girl are both having a blast.

IDEA ill get my powerchair on credit and then to pay it off ill hook up a wagon to the back and call it "red cab" since my powerchairs gonna be red, people can hop me for a ride in the high school lol tongue.gif 5 bucks a ride to your class yahoo.gif

QUOTE (wheeliebear75 @ Sep 4 2007, 07:11 PM) *
Hey CaptPike those are cool pix, looks like you and your little girl are both having a blast.
______
*Enjoy every sunset, but be grateful for every dawn.*
Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".

i stole your siggy, but changed it a bit...
tell me if u wont want me to do this...
nomis
Good stuff Capt Pike. That's what it's about, doing your thing your own way. Kids are fantastic ( wish I could be one again, I try icecream.gif ).
ecool_390020
QUOTE (Rudy @ Aug 28 2007, 10:52 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 !

hey rudy... as far as i know the stem cell operations are done in india... try finding out bout that and its nt that we are 20 30 yrs far frm the cure.... inventions may happen even in a night or it may never happpen... u can t judge nething... jas be positive and have faith in nature...

QUOTE (Captain Pike @ Sep 5 2007, 01:09 AM) *
Right somebody, all rats look alike to me, I don't know, call me prejudiced.

I have had a complete C5 injury for only 2+ years, and I remember just a little bit ago I passed through another membrane of denial. Now my attitude towards PT is a lot better. I really (secretly) expected that after a few months, I would begin to start twitching my toe, or moving my legs around a little. What I DO have new happening is some very strange and interesting pain!

If you imagine the spinal cord being a big cable with many hundreds of millions of very small, similar looking wires, and the SCI a cut through, or terribly mashed assult to that wire, then you begin to see the very terrible, simple impossibility of a repair. That fiber optic idea, while ingenious, would probably result in a cable 6 inches in diameter. Not to mention what the connector would look like.

What they ARE doing in America is transplanting nerves, to allow us to move a finger, for example, using a nerve that previously controlled wrist flexion. I miss being able to give people "the finger". yahoo.gif

I think some level of acceptance is the key, whether we'll ever get better or not. I get terribly bummed sometimes, and then, there are the other times. Check out these photos, of me bringing kids to the beach... it never was better than this back when I was able bodied.

captain pike... looking at those pics i m really motivated... life is really worth living thats wht i have learnt from u... and i luk upto u and i have a lot of respect for u sir... hats of to u sir and give my luv to u sweet little gals... u are a lovely and best father to them...
Ben
I've been at it almost 18 years and I was mad as hell at first. Then I sort of got on with it. Then I wanted too feel sex again and that pretty much sums up the next 171/2 years. I have really bad days and then i have days where I want too shoot myself but, the next day I get on with whatever I have too do. Hope for a cure doesn't come up too often. I think in north america we live in a money hungry way. Way more than some and a cure isn't important too anyone in a drug company or a big care home. When this happened too me I was told 5 years and I'd be back up again. Well that came and went and it doesn't enter my brain at all anymore. I just get on with life and that pretty much takes over and other than having too monitor when I goto the washroom, I'm too busy with things too think about it. and the drugs have helped too but thats another story altogether!
milosNS
HOPE DIES LATS!!!
wuzzbie
Firstly i do not thinking giving up hope at 45 makes sense, sure u dont have to spend all your time praying or anything but saying goodbye to hope is pointless. And i also dont know where you are getting the 20 to 30 years from it seem like from the research this year that they are much closer then that tho some of them may not be suitable for a break at your level such as the bypass type. But i think there will certainly be readily available clinical trials that could greatly improve your condition and possibly even more then that within the next decade.
qbounce
I read the same thing recently , Wuzzbie.

In the most recent New Mobility Magazine it stated a cure could be attained within the next 7 years in the US, and the Chinese and Indian cures were falsely propagated, because they weren't using the right type of cells, nor could they prove that stem cells were even being used.

I feel as if I've been offered to try a different lifestyle for awhile. . . that all this is some sort of temporary trial. It's like a living video game, take away certain functions and let's see if I can make it to the next level.

I hit a wall when I was AB and everything was so mundane and the same, but not anymore. Now days are filled with everything I used to easily do. It's getting easier, and very soon now I'll be ready to go back to being AB. I kinda miss the mundane and sameness of every day life.
nomis
I'm sure, gbounce, if you tried harder your life now could be more boring. If you don't exercise your lethagy you'll lose it. It's all about commitment and discipline - they get in the way.
qbounce
Haha, Nomis. On the contrary. . . my life couldn't be boring if I DID try. Just got pressure sores on my feet recently from sitting up in the chair longer (they're gone now), and then this week, a UTI.

Seems there's always something needing my attention!

But your right,,why I force myself to get up every morning and kiss the day hello is beyond me?!! biggrin.gif (except for the coffee. . . and the paper. . . and the. . . who the hell am I kidding,,lifes good!!)
edlee
Could always be better,,,, or worse,,, I try not to dwell on either.

I've enough on my plate to keep me busy chewing for quite a while.
ed
Deej
I have been having so much pain in my upper limbs in recent months (I'm almost 14 years post injury) it gets me down. I'm not convinced that even if a cure was available I would go for it - I mean at least at the moment I have no feeling in the lower 3/4 of my body. I'm pretty sure that if my spinal cord was able to be 'fixed' it would involve continuous lifelong pain. I'd rather get on with what I have now - a life I have become accustomed with - than spend the rest of it in pain.
E-DOG
Hope in one hand, crap in the other.
You tell me? Which one fills up faster? Which has more depth and weight?
Are we any closer to a cure for cancer than we were 25 years ago?
Still we use chemo and radiation HOPING to kill the cancer before we kill the body. f*@king barbaric. With the technology we have today, a cure for cancer or paraplegia is a long ways off.
I've only been seated for 10, 11 months but I knew from the get go not to sit around hoping for a cure. Better to face facts, I'm paralyzed from the tits down and it's really doubtful I ever walk again.
If I do? Great! Meantime I got shit to do.
My plight is tantamount to being stuck alone on a deserted island.
I can sit under a coconut tree, hungry all day, hoping a plane will fly over. Or I can climb the tree and get something to eat.
Personaly I like to eat. Every day. And if I'm busy climbing trees all day I don't have time to hope for a frigging miracle. Course if I hear a plane coming, I do have sense enough to get my fat ass out of the damn tree!
E-dog
Trinity
QUOTE (E-DOG @ Apr 11 2008, 05:29 AM) *
Hope in one hand, crap in the other.
You tell me? Which one fills up faster? Which has more depth and weight?
Are we any closer to a cure for cancer than we were 25 years ago?
Still we use chemo and radiation HOPING to kill the cancer before we kill the body. f*@king barbaric. With the technology we have today, a cure for cancer or paraplegia is a long ways off.
I've only been seated for 10, 11 months but I knew from the get go not to sit around hoping for a cure. Better to face facts, I'm paralyzed from the tits down and it's really doubtful I ever walk again.
If I do? Great! Meantime I got shit to do.
My plight is tantamount to being stuck alone on a deserted island.
I can sit under a coconut tree, hungry all day, hoping a plane will fly over. Or I can climb the tree and get something to eat.
Personaly I like to eat. Every day. And if I'm busy climbing trees all day I don't have time to hope for a frigging miracle. Course if I hear a plane coming, I do have sense enough to get my fat ass out of the damn tree!
E-dog


clap.gif clap.gif clap.gif clap.gif clap.gif
I couldn't have put it better myself!
I always love your responses E-Dog, they never fail to make me smile! biggrin.gif

Trinity X
Yong
QUOTE (E-DOG @ Apr 11 2008, 12:29 AM) *
Hope in one hand, crap in the other.
You tell me? Which one fills up faster? Which has more depth and weight?
Are we any closer to a cure for cancer than we were 25 years ago?
Still we use chemo and radiation HOPING to kill the cancer before we kill the body. f*@king barbaric. With the technology we have today, a cure for cancer or paraplegia is a long ways off.
I've only been seated for 10, 11 months but I knew from the get go not to sit around hoping for a cure. Better to face facts, I'm paralyzed from the tits down and it's really doubtful I ever walk again.
If I do? Great! Meantime I got shit to do.
My plight is tantamount to being stuck alone on a deserted island.
I can sit under a coconut tree, hungry all day, hoping a plane will fly over. Or I can climb the tree and get something to eat.
Personaly I like to eat. Every day. And if I'm busy climbing trees all day I don't have time to hope for a frigging miracle. Course if I hear a plane coming, I do have sense enough to get my fat ass out of the damn tree!
E-dog


I'm afraid I only agree with this 75%.

E-dog does a great job of telling the truth as it is...a cure is not likely to happen immediately. However, it seems to me that a lot of people are taking the idea of holding on to hope and moving on as mutually exclusive. One or the other.

Using E-dog's analogy of the coconut tree.. I am 100% in favor of going and getting the coconut myself instead waiting for rescue. But what if it's not as simple as that? What if there is option number three where you can go get your coconut AND stay on the lookout for the plane? Isn't that what most people will do?

What if while getting the coconut, you don't spot the rescue plane?

I am willing to bet that almost everyone here who say stuff like.."oh...i've given up hope for a cure... there IS no cure..." will be among the first ones to jump on board if there indeed IS a cure. So nobody has really given up on walking again.

It's just that everyone has put it on the back of their minds in order to focus on the now...focus on their lives at the present.

I'm trying to say that as an ambitious 22 year old former US Marine Corps PLC candidate, I'm not just laying around waiting for some scientist to raise me up. I'm living my life again. Already 11 months post injury, I've changed my major from accounting to pharmacy and was accepted to pharmacy school. I plan to go on and get my Ph.D in pharmacy to do research on SCI.

I am also in the process of raising funds and awareness for SCI and the Shepherd Spinal Center in Atlanta, Georgia by petitioning many local businesses to donate money. Perhaps if all of us try and raise awareness for SCI, the cure that is currently 50-100 years away can be discovered 10-20 years or sooner from now.

It is crucial to do what's important now...that is, live for the moment. But it's equally important not to purposely miss a future that could enrich the lives of so many SCI patients.

I, for one, am not going to be the guy up on the laxative tree that totally forgets about the flare gun I have...just because I am hungry right now.
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 (Rudy @ 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]
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
QUOTE (wuzzbie @ Apr 17 2008, 04:43 PM) *
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 tongue.gif) 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
QUOTE (wuzzbie @ Apr 18 2008, 10:25 AM) *
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
QUOTE (Quad65 @ Apr 30 2008, 11:58 AM) *
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. biggrin.gif
E-dog
topperf
Couldn't have said it better myself.
Well, that's not true, but you ARE right-on the money. biggrin.gif
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 biggrin.gif
maloel
QUOTE (Rudy @ Aug 28 2007, 05:22 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 !


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
QUOTE (Quad65 @ Apr 30 2008, 11:58 AM) *
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! cheers.gif
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
QUOTE (maloel @ May 15 2009, 05:45 AM) *
QUOTE (Rudy @ Aug 28 2007, 05:22 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 !


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.
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
QUOTE (Hikkakaru @ May 18 2009, 10:09 AM) *
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.
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