Lost All Hope For Cure To late for me
#1
Posted 28 August 2007 - 05:22 PM
After all the years of thinking I may walk again, its been a hard realisation. GOODBYE HOPE !
#2
Posted 28 August 2007 - 06:00 PM
Stay Positve and keep hope alive.
#3
Posted 28 August 2007 - 10:39 PM
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.
Although I cannot move and I have to speak through a computer, in my mind I am free.
#4
Posted 28 August 2007 - 11:03 PM
*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#5
Posted 29 August 2007 - 09:32 PM
Rudy, on Aug 28 2007, 12:22 PM, said:
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"
#6
Posted 03 September 2007 - 05:35 AM
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.....
This post has been edited by dorkette: 03 September 2007 - 05:37 AM
#7
Posted 03 September 2007 - 08:16 AM
dorkette, on Sep 3 2007, 12:35 AM, said:
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.
This post has been edited by Alin Steglinski: 03 September 2007 - 08:20 AM
#8
Posted 03 September 2007 - 05:13 PM
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.
This post has been edited by Somebody: 03 September 2007 - 05:14 PM
#9
Posted 04 September 2007 - 03:57 AM
Alin Steglinski, on Sep 3 2007, 03:16 AM, said:
dorkette, on Sep 3 2007, 12:35 AM, said:
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.
#10
Posted 04 September 2007 - 04:38 PM
Quote
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.
#11
Posted 04 September 2007 - 05:02 PM
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.
#12
Posted 04 September 2007 - 06:33 PM
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.
#13
Posted 04 September 2007 - 07:39 PM
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".
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.

#14
Posted 04 September 2007 - 09:10 PM
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
#15
Posted 04 September 2007 - 09:42 PM
Captain Pike, on Sep 4 2007, 02:39 PM, said:
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".
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
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
you can see a description of the powerchair i will most likely be getting at http://alins.zapto.o...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
This post has been edited by Alin Steglinski: 05 September 2007 - 02:37 PM
#16
Posted 05 September 2007 - 12:11 AM
*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#17
Posted 05 September 2007 - 12:16 AM
wheeliebear75, on Sep 4 2007, 07:11 PM, said:
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
wheeliebear75, on Sep 4 2007, 07:11 PM, said:
______
*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...
This post has been edited by Alin Steglinski: 05 September 2007 - 02:38 PM
#18
Posted 05 September 2007 - 01:44 AM
Although I cannot move and I have to speak through a computer, in my mind I am free.
#19
Posted 24 October 2007 - 12:04 AM
Rudy, on Aug 28 2007, 10:52 PM, said:
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...
Captain Pike, on Sep 5 2007, 01:09 AM, said:
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".
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...
#20
Posted 28 March 2008 - 06:22 AM
#22
Posted 04 April 2008 - 01:55 PM
#23
Posted 04 April 2008 - 11:01 PM
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.
#24
Posted 04 April 2008 - 11:17 PM
Although I cannot move and I have to speak through a computer, in my mind I am free.
#25
Posted 05 April 2008 - 12:02 AM
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?!!
#26
Posted 06 April 2008 - 12:19 AM
I've enough on my plate to keep me busy chewing for quite a while.
ed
#27
Posted 06 April 2008 - 10:14 PM
"non legitimus carborundum"
#28
Posted 11 April 2008 - 04:29 AM
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 will nevah, EVAH take a pinch from a greasy muddahf*@kah like you!
How 'bout if I spell it out for ya. D-I-L-L-I-G-A-F
#29
Posted 11 April 2008 - 07:32 AM
E-DOG, on Apr 11 2008, 05:29 AM, said:
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 couldn't have put it better myself!
I always love your responses E-Dog, they never fail to make me smile!
Trinity X
Memento Mori
#30
Posted 11 April 2008 - 01:27 PM
E-DOG, on Apr 11 2008, 12:29 AM, said:
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.

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