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Will There Ever Be A Cure???




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#1 babyg1rl521

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Posted 16 December 2005 - 01:44 AM

I read all this stuff about stem cells, what is this?? Will this ever be a cure? I'm willing to try anything at this point? I'm so confused about all this? Do I have any options or is this my fate? Every doctor says something different. This is so confusing. Can someone shed some light on this for me??

#2 hillarymcarter

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Posted 16 December 2005 - 02:19 AM

Stem cell may happen in the future...but it could be 10 years down the road. In the meantime, make sure to take good care of yourself in case a cure does come around. You can do this by making sure you stretch everyday and by standing in a standing frame.
Spinal cord injuries are so mysterious that no one can really say if this is your fate or not. My advice would be to treat it like it is....your fate at this point in time. Looking forward or backward for something that may never come won't help right now.
I read in a different post that it will be a year in February. My husband just got past his "anniversary". It is tough, but we just keep going. We treat it like it will always be this way...some say it is pesimistic, but I say it is realistic. It will get easier. I look back to where he was 2 months ago and he has come leaps and bounds. Try to just look back in intervals of months instead of days or weeks.....that way you can see how much easier things are becoming for you.
Good luck!!

#3 Joed

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Posted 16 December 2005 - 06:11 AM

Keeping a journal helped me to see how far I've come. Because the progress is so slow, it's difficult to remain motivated...but reading about how you felt, what you were thinking and what you were struggling with, say six months earlier, can really help to put it in perspective.

SCI research is going along at a rapid pace, relatively speaking. There are lots of promising studies being done besides stem cell research, and I suppose it's very possible that the ultimate 'cure' will include a combination of two or more different types of treatments.

I remain hopeful that a significant breakthrough will occur in my lifetime. Maybe not a total cure, but a huge push onto another level of SCI treatment. The newly injured will probably benefit the most from such a breakthrough...but it will be a beginning.
* * * * * * * * *

Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.

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Posted 17 December 2005 - 04:26 AM

There will be a cure for sci? Don't be put off by these pessimists, they reason why they adopt this attitude is because a cure has not yet been found which does not imply that a cure will never be found - it is just a matter of time. Other people reading this will just think that this is wishful thinking on my part. A cure is just a matter of time and it will come to those scientists who are optimistic.

#5 *toddler*

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Posted 04 January 2006 - 09:56 PM

It was almost nine years ago when I became a T6,T7 paraplegic with a moderate brain injury.I've had to deal with chronic pain for all of this time.
I am very thankful to have recovered so dramatically from the brain injury which was by far the worst.
Yes, it is very difficult at times to be positive during the recovery period, shortly after the accident, but not so long ago, most of us would be lucky to be alive.
There is nothing wrong with being hopeful for a cure, but you can't move forward through life by dwelling on something that has no set time period for being cured.Be strong and show people that you may have been slowed down a bit, but you're not going to sit around and mope.

#6 babyg1rl521

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Posted 11 January 2006 - 05:40 PM

Well I'm staying hopeful.... I have four beautiful children and a wonderful fiance that keeps me going. They keep me from feeling dead inside. That's how I felt at first. I hope for the best but as of now I'm starting to accept it. Thanks guys..... :angry:

#7 *injuered from kosovo*

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Posted 17 January 2006 - 12:05 PM

First sorry about mistages in my english .
Reading your posts here i find that even in other pard of world like you are far from me when you have everything what you need like , good medical treatment, weelchairs ,acces in all streets and everywhere , and you are stil looking for something alse .
i wanna just to say that i am with SCI t10 and here when i live not have acess nowere for people with SCI i live in 6 floor bouiding wich not have escalator i find hard to have catheter i find hard to have penilax (condom catheret for urin) i have 3 years a go elecrtical acident and now 3 years a go living in the pain in my legs i have try with meny pain killer and i didnt find halp no where i have one old weelchair in wich if i stay more then 1 or 2 hour i got a pain on my spine and you know what is my one and all good thing on all this my situation . IT IS COMPUTER CONNECT ON INTERNET .
Now i find this forum and i read a lot of people experiance and i am realy confused whe someone say sometime i am upsed you shouldnt be upset couse there for all normal people is normal to halp and to be a friend with someone who is SCI but here is not i haven ot friend wich visit me i am allone with my parents but i an hopefull doing my excersise i know i will be better one day so soon . ANY WAY I DONT KNOW WHY I HAVE TOLD YOU ALL THIS BUT I DONT WANNA YOU ALL TO BE UPSET WHEN YOU HAVE EVERYTHING IN LIFE .

#8 Joed

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Posted 17 January 2006 - 07:08 PM

Hi injured from kosovo.... :D

I'm so sorry to hear that your conditions are so limiting for those with SCI. It is easy to forget how blessed some countries are in this respect...we take things for granted...so I'm grateful that you've reminded me, and raised my awareness of how difficult it must be for others who struggle daily with the most fundamental things in life.

I'm not a world-wide traveler...so my scope and understanding is somewhat limited. My hope and prayer is that someday soon things will begin to change in your country, and those with disabilities will have increased access and improved support systems.

Thank You, and I'll be praying for blessings for you and your family.
* * * * * * * * *

Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.

#9 AHolland

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Posted 19 January 2006 - 10:52 PM

Injured in Kosovo,

Thank you for making your post.

Yes you are right that although we have sustained an incredible injury, it could be worse. I think we all need to dig down deep and remember to sometimes stop and smell the roses. What we have, is as bad as we want to make of it. Do we stop and cry, or do we lift our heads up and plow on.

It's no secret that SCI people have significantly higher suicide rates. I don't really know the rate. Much is because we compare what we had, with what we now have. Sometimes we forget to think of how much better we are off from many of the people in the world. Maybe we would think differently if we compared our SCI selves with those people in disease/famine/war zones.

It's not a matter of sucking it up. It's a matter of thinking about what is really important in our lives: Food, shelter, doctors, friends. Need I go on?

I'm a SCI, in plenty of pain. It could be worse.
T4/T5

#10 babyg1rl521

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Posted 24 January 2006 - 10:36 PM

i feel so selfish when i read these posts. i guess we don't stop to think about those things that we are blessed with. I'm so sorry for your situation. if there's a time you need to vent or to talk you can always e mail me or this forum. we're alwaysb here.

#11 sarah o

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Posted 03 February 2006 - 06:11 AM

" A cure is just a matter of time and it will come to those scientists who are optimistic."

the rate of technological improvement these days in every field can only lead us to believe that it is inevitable ~ especially since they really are focussing on finding a cure for sci ~ that we WILL have good news one day!

but in the meantime, it's good to keep gratitude (glass half full attitude) very close. the post from our friend in Kosovo really helped me in that department !!!

thanks to you, in Kosovo, and thank you Christopher Reeves, who both make me feel like i'm one of the luckiest girls in the world.

i guess once i stopped holding my breath for the day i walk and dance and run and mountainbike again, i realized that perhaps there was grace and beauty and spiritual reasons that i am, this moment ~ the only moment there is ~ sitting paralyzed in a wheelchair. what if i am learning to be happy regardless ? what if i am learning compassion ? aren't those things even more important in the whole scheme of things than my ability to run around ?

Thank you too, Simon, for running this awesome website. And thanks to you warriors in chairs who are here for me and for everyone else needing support !

:mfrlol: :drive: :yikes:
the only thing to worry about .. is worry

#12 sarah o

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Posted 04 February 2006 - 01:51 AM

... oops, i failed to mention that i happen to be a runner-up for 'queen of the pity party' :D
the only thing to worry about .. is worry

#13 sarah o

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Posted 06 February 2006 - 08:52 PM

Prasad,

Doesn't your named mean "blessed" in Hindu?

When i was in rehab, the doctors all had the same story: if you regain nothing that we can register in our tests by 6 months post-injury, you will never regain anything ~ no feeling or movement.

But i had just had a near-death experience and God told me very clearly that i'd walk again. So these guys in white coats, compared to God, were just silly to me. Then finally one medical worker admitted to me that the doctors realize they don't know a whole lot when it comes to the nervous system, but that in med school they are taught to say this. They literally are not allowed to give us "false" hope.

Luckily, other rehab patients, ones a little farther down the path, would roll up to me and let me know that i will heal, that they were healing. Thank God for them, because i really needed a little bit of light and support for my faith.

Then i studied alternative healing for a few years after my accident, and i learned that MANY miracles happen to people all the time !!! That it is written in our DNA to heal ~ even severed spinal cords have healed (there is a study done with mice where this was seen ~ sorry i cannot point you to the study, can't remember where i saw it).

So that, coupled with this progress in the medical field, seems to support what i have been holding onto all along ~ that the docs are dead-wrong if they tell me i will never walk again HA!

Thank you, Prasad, for your wonderful words of hope!
the only thing to worry about .. is worry

#14 kanga2433

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Posted 09 February 2006 - 09:02 PM

to return to the focus of the thread which is about whether the will be every killer, if you look at the new scientist magazine, their web site is www.newscientist.co.uk, you will see that there will shortly will be trials of a new treatment that seems to have working animals. No doubt the trials will take a long time and most of us will never actually see any result and does seem that something is really in the pipeline now.
Robert
T6 (Transverse Myelitis))

#15 ruth

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Posted 17 February 2006 - 09:16 PM

Hmmm - I hate to put a downer on this lovely chat about a cure. The docs etc in my hosptial said that there would be a cure in 10 years - I've now been in a chair 14 years (yes years, not months! :ranting: ) and still the cure is elusive...

I havent thought about a cure much - until I found this thread. Perhaps its the domain of the newly injured?

I just get on with my life like everyone else. My heart does go out to Kosovo though. I would go mad if I couldnt get out and live a normal life (husband, work, kids etc).

Edited by ruth, 17 February 2006 - 09:18 PM.


#16 *kyawTit*

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Posted 20 February 2006 - 03:19 AM

khunkyaw@mail.com

I would like to know about the Paralysis. Please explain to me.When a pereon who got paralysis, what should he do?And what should he eat i.e what types of food he eat and what types of tasty he should not eat? And how should he do exercise? Ho

#17 *Grounded Paraglider*

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Posted 24 February 2006 - 05:36 AM

In a few words, the CURE is there! But not here in the U.S.

The fact is that the spinal cord with all its complications can now be regenerated with an adult-stem cell combined surgical therapy.

If you look into the two most accredited research centers in the U.S. you can read there findings very clear...they have the cure!
However, with the excuse of protecting us the FDA has a requirement of clinical trial protocols that can take from five to ten years for "the cure" to be generally practiced on the 240.000 SCI patients waiting on the sidelines.

If you like to verify this, please read the findings from....the cure!
Notable Accomplishments of Miami Project at http://www.miamiproj...ami.edu/x66.xml
And all-so read
The Reeve-Irvine Research Center
"Olfactory Ensheathing Glia"
Olfactory neurons, which allow mammals to sense smells, are one of the very few central nervous system (CNS) nerves that regenerate normally. This regeneration is aided by cells called olfactory ensheathing glia or OEGs. Several studies have found that OEGs can help regeneration after spinal cord injury when used as a combination therapy. For example, Mary Bunge, Ph.D., of the Miami Project, has demonstrated that implanting Schwann cells (myelin makers outside the CNS) to act as a bridge through the injury site together with OEGs to help regenerating axons move through and beyond this bridge into healthy spinal cord above or below the injury results in improved locomotor abilities. The combination of two different implants holds great promise and may eventually become part of new clinical treatments for spinal cord injury.

The key words are "May eventually become part of new clinical treatments for spinal cord injury” meanwhile....

At this time 2006 around the world... in Korea, China, Portugal, Colombia, Brazil, London and other countries.... this is what is happening...

November 6, 2005 Amy Foels (American) has no regrets.

In January, the 21-year-old college student from Elkader USA flew to Lisbon, Portugal, to undergo an experimental surgical procedure that she hoped would eventually allow her to walk again. So far, so good.

"I would say I'm 200 percent happy," says Foels, whose legs were paralyzed in a November 2002 car accident. "With what I've seen so far and what I feel capable of doing, I am so completely satisfied with everything."

other stories in the web...

Jason and his family traveled to Portugal from the US in mid-February

for a stem cell operation that could give him the chance to walk again. So far, only 39 patients had elected to have the operation. Results have been good. The majority of patients have experienced sensation and regained some movement.

Three days after arriving in Lisbon, Jason underwent the procedure. Surgeons took his own stem cells from his nose, and implanted them at the site of his spinal cord injury.

Within 24 hours, Jason reported feeling spasms in his stomach and legs. Ten days later, he was home. He said he had feeling in his legs and waist. And now, the rehab begins again. It will take three months to two years before the full extent of his recovery is known.

What are the chances this promising procedure will be available in the U.S.? Doctors say it may be approved within 12 - 18 months. The U.S. Food and Drug Administration might even approve a clinical trial in Detroit. And because the stem cells in this procedure come from a patient's own body, there aren't the same ethical questions that have swirled around embryonic stem cell research.

Videos at http://www.wwmt.com/...kout_local.html

http://www.macombdai...spinal001.shtml

Thursday October 7, 2004
The Guardian
Yesterday Sir Malcolm hailed the arrival of Geoff Raisman and his team from the National Institute for Medical Research, who have joined UCL's spinal unit. They have already demonstrated that it is possible for severed spinal cord nerve fibres to grow back and restore lost bodily functions.

Professor Raisman found one part of the nervous system, in the nose, in which nerve fibres were in a state of continuous growth during adult life.

Cells transplanted from this region into the injured spinal cords of rats integrated into the damaged pathways and laid a "bridge" over the gap in the nerve fibres. The team believes the technique could be transferred to humans.

Prof Raisman said: "We have been able to persuade the medical profession that a cure was possible, and the fact that we have now joined UCL, and will be able to collaborate with the UK's major neurosurgical team to develop human trials, represents a major step forward. Our work to date has indicated that, contrary to what was previously thought, the spinal cord does have the potential to repair itself. That is why the UCL Institute of Neurology believes that human trials are a logical next step."

Over 40 surgeries in Portugal alone over 300 in China and Korea and over 20 in south America and 10 surgeries being started-up in London this year and the risk factor is very low cause the cells come from your own body and there is no chance of rejection or death.

The FDA has something that is called "fast track" witch they can use to speed up the protocols but...its huge amounts of billions for the first across the FDA line.

Who will it be? can it be?
The Miami project with the Miami University and their Physical Therapy centers along with the laboratory’s patents on cell manipulation and in the back ground the big pharma companies with the help of the The Reeve-Irvine Research Center undermining all other findings outside the USA and of course the FDA regulating the worlds medical therapies.

in the USA alone 90.000 patients die of medical and hospital errors A YEAR.

May be that there is no good science research going on other than in the USA?

what ever happened to sharing the findings (internationaly) for the patients sake?

Conclude with this. http://www.reeve.uci....php?shownews=3

The last paragraph sound like bioscience spying to me. :P

Does it to you?

I am a para- T11 complete from a paragliding accident. :dunno:

Chaooo.

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Posted 07 March 2006 - 03:54 PM

Doesn't your named mean "blessed" in Hindu?

When i was in rehab, the doctors all had the same story: if you regain nothing that we can register in our tests by 6 months post-injury, you will never regain anything ~ no feeling or movement.

But i had just had a near-death experience and God told me very clearly that i'd walk again. So these guys in white coats, compared to God, were just silly to me. Then finally one medical worker admitted to me that the doctors realize they don't know a whole lot when it comes to the nervous system, but that in med school they are taught to say this. They literally are not allowed to give us "false" hope.

Luckily, other rehab patients, ones a little farther down the path, would roll up to me and let me know that i will heal, that they were healing. Thank God for them, because i really needed a little bit of light and support for my faith.

Then i studied alternative healing for a few years after my accident, and i learned that MANY miracles happen to people all the time !!! That it is written in our DNA to heal ~ even severed spinal cords have healed (there is a study done with mice where this was seen ~ sorry i cannot point you to the study, can't remember where i saw it).

So that, coupled with this progress in the medical field, seems to support what i have been holding onto all along ~ that the docs are dead-wrong if they tell me i will never walk again HA!

Thank you, , for your wonderful words of hope!

Sarah, That's the spirit .. u can always write to me for any research news or information u want to share on devgan_vishal_v@yahoo.co.in

#19 erickk

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Posted 29 June 2006 - 09:59 PM



Doesn't your named mean "blessed" in Hindu?

When i was in rehab, the doctors all had the same story: if you regain nothing that we can register in our tests by 6 months post-injury, you will never regain anything ~ no feeling or movement.

But i had just had a near-death experience and God told me very clearly that i'd walk again. So these guys in white coats, compared to God, were just silly to me. Then finally one medical worker admitted to me that the doctors realize they don't know a whole lot when it comes to the nervous system, but that in med school they are taught to say this. They literally are not allowed to give us "false" hope.

Luckily, other rehab patients, ones a little farther down the path, would roll up to me and let me know that i will heal, that they were healing. Thank God for them, because i really needed a little bit of light and support for my faith.

Then i studied alternative healing for a few years after my accident, and i learned that MANY miracles happen to people all the time !!! That it is written in our DNA to heal ~ even severed spinal cords have healed (there is a study done with mice where this was seen ~ sorry i cannot point you to the study, can't remember where i saw it).

So that, coupled with this progress in the medical field, seems to support what i have been holding onto all along ~ that the docs are dead-wrong if they tell me i will never walk again HA!

Thank you, , for your wonderful words of hope!

Sarah, That's the spirit .. u can always write to me for any research news or information u want to share on devgan_vishal_v@yahoo.co.in



#20 erickk

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Posted 29 June 2006 - 10:07 PM

All this information abou/t breakthrougs in other contrys are good.I will be looking for new people who are going threw proccess now if there is anybody to follow pls let me know.

#21 angie

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Posted 27 September 2006 - 09:08 PM

I read all this stuff about stem cells, what is this?? Will this ever be a cure? I'm willing to try anything at this point? I'm so confused about all this? Do I have any options or is this my fate? Every doctor says something different. This is so confusing. Can someone shed some light on this for me??



:( hi my name is angela and i'm a point in my life i'm willing to try anything that would give me the ability to walk again because with my life the way it is now it sucks :wub: just wanting to live life a little better than i am now

#22 *onion*

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Posted 01 October 2006 - 03:50 AM

Hello baby,
You're looking swell baby. It's so nice this forum's going strong.
I mean, baby, stem cell research, baby?
You're living, and crowing, wheelchair bound.
But you feel your life's ebbing, while the band's playing
someone else's song. Take the deamons baby, stuff them away, baby,
Live for today baby.

Angela I agree sci sucks
onion

#23 LadyPilot

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Posted 01 October 2006 - 08:58 AM


I read all this stuff about stem cells, what is this?? Will this ever be a cure? I'm willing to try anything at this point? I'm so confused about all this? Do I have any options or is this my fate? Every doctor says something different. This is so confusing. Can someone shed some light on this for me??



:) hi my name is angela and i'm a point in my life i'm willing to try anything that would give me the ability to walk again because with my life the way it is now it sucks :doh: just wanting to live life a little better than i am now


Hi Angela. I am so sorry that your life sucks at the moment. I do not know how long you have been injured or your present circumstances but it is really important that you stay positive. Even though there is no cure at present, keeping healthy and your mind occupied are things that will help you now. In a way its like wishing you could win the lottery, when it doesn't happen you feel bitter and that will only end up destroying you.

Try to find something that you will enjoy doing. Are you creative? What about writing a novel, do you like painting. Find a new hobby but don't waste your life waiting for something which may be years down the line. No-one can your life better except you :yahoo:
If you don't want to die, your life still has meaning.

#24 Alin Steglinski

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Posted 06 October 2006 - 12:03 AM

most definately. i am only 15 and i have an extreme interest in neuroscience particularly focusing on the spinal cord. i find it to be such an interesting subject.

#25 BillS

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Posted 04 November 2006 - 11:30 PM

I had my accident when I was 17 and I'm 47 now. All of those years people have been talking about "a cure". I've seen all sort of things tried and non of them have worked. Even if they were able to fully repair my spinal cord I'm not going to be able to just get up and walk after 30 years. Also considering how long it takes for the FDA and insurance companies to approve new treatments I'd say a cure is still a long way off for the general public even if they discovered one tomorrow.

So live life as it is guys. Don't spend your time dreaming of a day that may never come but instead enjoy the things you can do. Live for today or you may find out you spent too many years wishing instead of doing.

Of course all of the above talk doesn't stop me from wishing that I could walk. :Birthday_Balloons:
Just a regular guy making his way through life.

#26 Izziwhizzi

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Posted 10 November 2006 - 04:08 PM

I had my accident when I was 17 and I'm 47 now. All of those years people have been talking about "a cure". I've seen all sort of things tried and non of them have worked. Even if they were able to fully repair my spinal cord I'm not going to be able to just get up and walk after 30 years. Also considering how long it takes for the FDA and insurance companies to approve new treatments I'd say a cure is still a long way off for the general public even if they discovered one tomorrow.

So live life as it is guys. Don't spend your time dreaming of a day that may never come but instead enjoy the things you can do. Live for today or you may find out you spent too many years wishing instead of doing.

Of course all of the above talk doesn't stop me from wishing that I could walk. :D



They said there would be a cure within 5 years when I was injured back in the early '80's!! However I must say that there has been a sort of cure happening in these last 25 years.

When I was injured virtually everyone was a complete break. Hardly anyone had any sensation / movement below injury. From my impression of injuries on this site and when I've visited spinal units there are so many incompletes & walkies about today.

I was taken in an ambulance to A&E without a neck support. All my clothes were taken and not cut off me & they knew I had injured my neck - so just simple things like good medical care at the point of injury has helped significantly change the paralysis levels.

I personally think any medical advances will be for all the new lesions and not anyone 12 months post injury.

#27 wheeels

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Posted 10 November 2006 - 06:31 PM

I believe that a "cure" is so far off I dont plan to wait for it, and as Izziwhizzi said it will most likely happen for new injuries and not old ones first.

#28 icarus_melt76

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Posted 10 November 2006 - 10:14 PM

My feelings are very much in line wth those of Izziwhizzi. In '76 they told me the Soviets were doing some great work on SCI's. One local guy went for it......came back with a better appetite! Can't blame him for trying though. As for our friend in Kosovo, yes he has points well taken but having been through his country, and the differences in what we have and they have, are all relative to that line of thought. If you don't have the latest hospitals, elevators and countless other differences. How could you miss them? Like apples 'n oranges....there is a similarity but they're not the same. What if you lived in the arctic or tropical rain forest? What would you compare things to?

Disagreement ends with my rant on geographical comparisons......You have your head screwed on pretty tightly pal.

This internet technololgy has opened the world to all, one of the greatest things to keep me busy and at least mentally active.

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Edited by icarus_melt76, 10 November 2006 - 10:14 PM.

Can lead a horse to water but hard as hell teachin' him the breast stroke!

#29 milosh

milosh

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Posted 11 November 2006 - 06:21 AM

if there is a cure the guys like frank williams and larry flynt would be walking.

some people from serbia and croatia went to china and portugal for a stem cells-based treatment. think it costed something like 50000 euros. for me it's ridiculous to give 50k EUR for a minor improvement made by the surgery while you can have a major one by investing that money in business, education, accessible vehicle, adapting your flat/house and so on what will improve your life much more!

i'm disabled the most of my life and honestly it will be strange for me to walk.

#30 keeptrukin

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Posted 11 November 2006 - 07:58 AM

I read all this stuff about stem cells, what is this?? Will this ever be a cure? I'm willing to try anything at this point? I'm so confused about all this? Do I have any options or is this my fate? Every doctor says something different. This is so confusing. Can someone shed some light on this for me??



Here's some interesting reading and research;
www.namiscc.org/newsletters/December01/SCI-stem-cell-research.htm
www.sci-info-pages.com/stem_cells.html

By far I like to look at the Christopher Reeves site to find out what's new. He has put alot of useful information on this site.
www.christopherreeve.org

I do alot of web searches cause I to feel that there has to be some form of help.

Keep your spirits high, I do think researchers are closer to helping use figure out how to help us then they have ever been.
KT


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