84 replies to this topic

[Apparelyzed]

Dr Wise Young speaks about Spinal Injury & Umbilical Cord Blood

Eminent neuroscientist Dr Wise Young delivered hope to practitioners and patients alike during his visit to New Zealand recently to raise awareness regarding his clinical trials treating spinal cord injury.

Young is the founding director of the W M Keck Center for Collaborative Neuroscience and a professor at Rutgers, the State University of New Jersey. In the US, Dr Young is also well known as the doctor who worked with the late actor Christopher Reeve (Superman) who became quadriplegic in 1995.

Since 2007, Dr Young has been leading a 25 centre trial in China, Hong Kong, and Taiwan using umbilical cord blood and lithium to regenerate the spinal cord.

Young says his research will bring hope to sufferers of spinal cord injuries whom to date, medicine has not been able to treat in any meaningful way.

“It’s achievable not just within our lifetime, but within a few years,” said Young. “I believe we can fix a person enough so that someone who doesn’t know them wouldn’t know that that person has a spinal cord injury. To me that’s a cure!”
This fascinating work has the potential to give tens of thousands of people worldwide a full life, and is just one of the leaps forward science is making in the field of umbilical cord stem cell research.

Watch the video: http://www.cordbank....ury-cord-blood/

[nomis]

Since this is not likely (as Dr Young says) in my life time I'll go on doing my own style of naval gazing. It's not a cure but does pass the time...

[Izziwhizzi]

I'll come over and stare at your navel too Nomis if it would help :-) sounds like endless fun with your words of wisdom

“It’s achievable not just within our lifetime, but within a few years,” said Young

I read it the other way though, as if he thinks it will work within his lifetime, infact within a few years

Take care

I x

[mcferguson]

 Izziwhizzi, on 17 June 2011 - 12:45 PM, said:

“It’s achievable not just within our lifetime, but within a few years,” said Young

I read it the other way though, as if he thinks it will work within his lifetime, infact within a few years

Take care

I x

That is how I read it, too.

[edlee]

It seems that doctor Dr Young has a great deal of faith in the successful outcome of this study. I hope that his faith is rewarded, His hopes for all of us, are mine as well.
ed

[Edinburgh Colin]

I would like to believe that this really has the potential he suggests. Dr Young is well respected and so I do not believe he would risk his reputation just for 7 minutes on an internet clip or even on mainstream TV if he did not really believe in his results and projections.
Having said that trials in China are a long way from approved treatment in the First World with all of it's medical beauracracy! It could work but how many years to get it through all that red tape?
Still it's nice to se something to give hope to those that long for a cure, or even just a significant improvement in their situation.
EC

[Ratticis]

With my luck, all that I'd get back would be the pain. Like I stated before, the biggest thing for me isn't neccicarially "walking" as much as being able to control my bodily functions. I mean, what good is it to walk around if you st8ill gotta worry about shitting yourself or pissing all over every time you bend over?
Although I am very lucky, what he said about being able to do almost anything you could before doesn't really apply to me because come hell or high water I'm gunna figure out how to do anything I so desire, be it getting back on the racetrack or welding without burning the hell outta my legs or setting myself on fire again (that's not fun)

[barbara9999]

this is wonderful news and i do believe it is not far off.
We need to keep updated on when and where the latest clinical trials are scheduled, where, etc. I wish Christopher Reeves could have still be around.

[pinkcloud]

I am THE CURE itself, oh..me gosh....

Everyone who does not know me...dont know I have sci. Even in a chair, they think I just broke me legs. Ooohhh yeah and doctors didnt know for years either...drinks on me everyone, I'm going to be rich.

Sorry to break hearts here....so frecking what !!!

....rid of pain, rid of autonomic problems..rid of bladder/bowel problems, rid of not having a sex life..walking and arms that work like before sci ....is a cure. Everything else - bollox.

Stupid, stupid man neuro bloke. Get a neuro bloke with sci to work on a cure, oh I forgot most of the time they are too wacked out with pain to work. And I do not imagine them wanting to be trialed on neither.

[barbara9999]

you need to read more about the research instead of just coming from the "gut". This research and trials is very important and eventually might be standard clinical procedure in medical centers around the world. I hope so. There's nothing wrong with hope. Hope is good. Dreams are good. Nothing is ever accomplished without a vision or dream.

[pinkcloud]

 barbara9999, on 18 June 2011 - 08:29 PM, said:

you need to read more about the research instead of just coming from the "gut". This research and trials is very important and eventually might be standard clinical procedure in medical centers around the world. I hope so. There's nothing wrong with hope. Hope is good. Dreams are good. Nothing is ever accomplished without a vision or dream.

Lets hope Dr Wise includes 'how to keep the 'cure', a 'cure' by living the life beyond his hospital doors.Otherwise Simons websites going to be the size of the whole internet.

I agree, if it wasnt for visions that mental ilness could be cured other than cutting open a live persons skull, the 'cure' of psychiatrists and drugs wouldnt have been invented. Now ooo so many years later STILL they are no 'cure' and people suffer agony in their emotional minds. If thats a 'cure' for you - great. Dont do our doctors no good when people dont realise a very simple 'point'...doctors cant 'cure' people - they can 'help a body heal itself'.

If this kind of stuff is what gives you hope, great for you. And loads of others out there.Like all dreams, keep a big dose of 'reality' in there or your'll end up living a 'waking' nightmare of agony. Any operation done where a person does not die from that - even if its after 15 minutes is classed as a 'success' - if it was a 'complication' that they died from - lets hope he includes these statistics hey?


Whats 'a cure' for you is way below MY own standards.I dont 'need' to do anything thanks for your advice anyway. I may 'choose' to look further, if I 'wish' too. And I dont. Also it was not from my 'gut',as you assume it was. I dont think that I am an influence so huge I can shatter peoples dreams, your views are very safe, simply sharing me very rare operation was 'a cure and a miracle I walked' and it wasnt.It was he didnt have a clue and I was lucky.

Edited by pinkcloud, 19 June 2011 - 02:35 PM.

[davjed]

makes one wonder "how wise is Dr. Young and how young is Dr. Wise"?????????

[Tetracyclone]

Dr. Young is in his 50s and I greatly respect him as a person, and his work. He gives a huge amount of time to communicating with SCId individuals over the internet over on curecare.
I have a difference of opinion with him in this way- he offers constant hope-for-a-cure to us all, yet many of us suffer permanent secondary physical degradation, which make the notion of recovery just plain silly. What good would it do to repair someone's nerve function when their bones are so brittle they cannot transfer safely? As many say, getting back control of bladder and bowel would be grand- no lie.

Yet it is not healthy that some of us who could never stand again even with a "cure", literally "live for" the hope of one. It is creepy. Those folks do not frequent this forum.

I'm not saying that is Young's fault. It is not his mission to be a psychologist, but to be a scientist.

Edited by Tetracyclone, 22 June 2011 - 10:50 PM.

[davjed]

As usual, Tetra, you are right. I was just playing word games with his name, nothing personal. It's through people like him this will one day be figured out.......in the meantime, deterioration and secondary problems due to SCI make this more than just a "one stop fixes all condition....."and it will continue to be for the immediate future........

[Tetracyclone]

Davjed-

You are right. He has a name that invites comedy, and if I ever meet him it is going to be rough trying to keep my mouth shut.

[love&hate]

I understand where you guys are coming from with your pessimism but I dont think you are giving enough credit where credit is due. There are a lot of young people with SCI and this is something important for us. When I read some of the the posts above I feel sad and disappointed at the same time. I think it is something we should be happy and excited about. If not for us then for future generations of SCI. I feel like people are selfish and they just think about themselves.

Dr. Wise devoted his life to this study. He moved to China to make it happen. How many of you would do such a thing? I'm sure it took a lot of courage and dedication just to move there. I think hes a great person fully devoted to the cause and I fully understand his confidence. I read most of the studies that led to those trials and they really look promising.
Are they experimental? Yes!
Can we be sure they will work? No!
Theres a lot of data saying that they indeed should work but things are just too complicated to say for sure.

Dr.Wise unlike any other pro in this field is constantly communicating with community sharing his knowledge with us. Keeping us on track. If those trials will end with failure he will let us know. Its not like hes up there to take our life savings like many other "companies" around the world.

The true is that Dr.Wise trials are one of the most promising from all of them and one that we need to keep an eye on. Safety trials are already on the way with so far good results. Of course its all limited by funding. Thats why they were moved to China.

Anyway, lets try to stay positive . Those are good news. If not for us then maybe ..just maybe they will help future generations. I would be happy just to know people wont have to go through what we had to. I'm sure you all know how terrible the whole experience is.

Edited by love&hate, 23 June 2011 - 11:59 PM.

[Grinch83]

I've been lucky enough to be able to see Dr. Young lecture about his clinical trials in China and where "we" stand on the stem cell treatments. He is truly inspiring, and some of the advancements they've made over just the past few years are exciting and beyond promising.

Some of the key points of the lecture I heard (lecture was held at Kessler Institute in West Orange, NJ in April):

• 1. We only need 10% of our spinal cord to create a functional CNS again.
  
• 2. The discovery that lithium helps the stem cells do their job is important. Since lithium is an old and well known drug, it will not have to undergo the rigorous scrutiny by the FDA (here in the states) as other treatments, thus speeding up the "red tape" process. And with the Geron Corp. already beginning their own stem cell clinical trials sanctioned by the FDA, by the time Dr. Young brings his clinical studies over to the US and Europe, a lot of the safety issues will have been discovered and hopefully handled.
  
• 3. While he couldn't speak to the actual results they're getting in China due to confidentiality agreements and pre-publication issues, the lithium & embryonic stem cell treatments have fully healed rats to the point of them not only being able to move their legs, but to also be able to walk on a tight rope, signifying a return in sensation. (In other words, a full recovery.)

When Dr. Young says something like "we will cure this in our lifetime, within a few years," he means it. During the lecture, he told a story about another doctor who was working on restorative treatment for SCI a few years ago. This doctor claimed to have found a cure and then proceeded to tell a room full of quads & paras that he has a cure, and he will make all of them walk again. He also made the same claim in the media and throughout the neuroscience world. It turned out that doctor was straight up lying, and he had no cure. Dr. Young told us he could never forgive that man, and he would never think about giving lectures such as the one he was giving that day unless he truly believed that his research and the China trials will one day (soon) lead to a restorative treatment or "cure." He cares too much about us as patients and the difficulty of our daily lives to give us any sort of false hope.

One thing is for certain, if Dr. Young's stem cell treatments merely give us SCI folks our bowel and bladder control back, the man will get a noble prize and will go down as a pioneer in SCI research and treatment.

[Grinch83]

 pinkcloud, on 18 June 2011 - 07:44 PM, said:

I am THE CURE itself, oh..me gosh....

Everyone who does not know me...dont know I have sci. Even in a chair, they think I just broke me legs. Ooohhh yeah and doctors didnt know for years either...drinks on me everyone, I'm going to be rich.

Sorry to break hearts here....so frecking what !!!

....rid of pain, rid of autonomic problems..rid of bladder/bowel problems, rid of not having a sex life..walking and arms that work like before sci ....is a cure. Everything else - bollox.

Stupid, stupid man neuro bloke. Get a neuro bloke with sci to work on a cure, oh I forgot most of the time they are too wacked out with pain to work. And I do not imagine them wanting to be trialed on neither.

We've gotten into this before, PinkCloud, but your post above makes it seem like you're angry someone is working on restorative treatment for SCI. It's like you're mad at the guy for putting his life's work into finding a cure and then talking about the current status of that research.

Why all the hostility toward hope? I'm not saying you can't have the hostility...by all means, stew in it for all I care. I just wonder why you feel it necessary to bring it to the boards here, especially in the Cure and Treatment section of the forums?

[Trinity]

Whilst I am not holding out for a cure I think if anyone is going to find it it's going to be Dr Wise Young. The man is a giant walking brain and very compassionate along with it, he is 100% dedicated to helping people with SCI and is NOT just another quack trying to make money out of snake oil.

Although I don't expect to be running around like I was pre-injury any improvement would be a bonus, especially a reduction in pain, although I would welcome whatever was on offer!

[jscott92064]

 Grinch83, on 23 June 2011 - 07:43 PM, said:

I've been lucky enough to be able to see Dr. Young lecture about his clinical trials in China and where "we" stand on the stem cell treatments. He is truly inspiring, and some of the advancements they've made over just the past few years are exciting and beyond promising.

Some of the key points of the lecture I heard (lecture was held at Kessler Institute in West Orange, NJ in April):

• 1. We only need 10% of our spinal cord to create a functional CNS again.
• 2. The discovery that lithium helps the stem cells do their job is important. Since lithium is an old and well known drug, it will not have to undergo the rigorous scrutiny by the FDA (here in the states) as other treatments, thus speeding up the "red tape" process. And with the Geron Corp. already beginning their own stem cell clinical trials sanctioned by the FDA, by the time Dr. Young brings his clinical studies over to the US and Europe, a lot of the safety issues will have been discovered and hopefully handled.
• 3. While he couldn't speak to the actual results they're getting in China due to confidentiality agreements and pre-publication issues, the lithium & embryonic stem cell treatments have fully healed rats to the point of them not only being able to move their legs, but to also be able to walk on a tight rope, signifying a return in sensation. (In other words, a full recovery.)

When Dr. Young says something like "we will cure this in our lifetime, within a few years," he means it. During the lecture, he told a story about another doctor who was working on restorative treatment for SCI a few years ago. This doctor claimed to have found a cure and then proceeded to tell a room full of quads & paras that he has a cure, and he will make all of them walk again. He also made the same claim in the media and throughout the neuroscience world. It turned out that doctor was straight up lying, and he had no cure. Dr. Young told us he could never forgive that man, and he would never think about giving lectures such as the one he was giving that day unless he truly believed that his research and the China trials will one day (soon) lead to a restorative treatment or "cure." He cares too much about us as patients and the difficulty of our daily lives to give us any sort of false hope.

One thing is for certain, if Dr. Young's stem cell treatments merely give us SCI folks our bowel and bladder control back, the man will get a noble prize and will go down as a pioneer in SCI research and treatment.

I would LOVE for my husband to get his bowel and bladder function back. He would be estatic!!! We met a local scientist in our community and he was confident he could help my husband get those functions back. I don't recall the company he is part of. I am reaching out to him again to see when and if he has any good news about trials being done here. Sucks that the USA is so behind on this. Really sucks! All politics holding it back.

[brockit79]

These posts give me hope. Hope beats dspair in my book. I believe a cure will be found and feel fortunate for someone such as Dr. Young to be dedicating his work to SCI. Until the day that I can benefit from these treatments in the mean time I feel it is an added incentive to keeping fit and healthy. The development of functional electrical stimulation (FES) exercise machines are a way of preventing a loss of bone density as well as muscle atrophy.

[sci1998]

After reading what Wise Young said about how soon a cure is coming and that you wouldn't be able to tell the difference from an AB, I really think that is a helluva lot of wishful hype and marketing. I think it would rather be you couldn't tell the difference between the control group and the ones that receive the treatment.

[love&hate]

 sci1998, on 30 June 2011 - 08:28 PM, said:

After reading what Wise Young said about how soon a cure is coming and that you wouldn't be able to tell the difference from an AB, I really think that is a helluva lot of wishful hype and marketing. I think it would rather be you couldn't tell the difference between the control group and the ones that receive the treatment.

After years of research, multiple trials and millions of dollar you finally decided to publish your thesis. Thank you for sharing your wisdom with us. I guess Dr.Wise can close up USASCInet and ChinaSCInet. The fortune cookie has spoken.

[sci1998]

 love&hate, on 01 July 2011 - 04:14 AM, said:

 sci1998, on 30 June 2011 - 08:28 PM, said:

After reading what Wise Young said about how soon a cure is coming and that you wouldn't be able to tell the difference from an AB, I really think that is a helluva lot of wishful hype and marketing. I think it would rather be you couldn't tell the difference between the control group and the ones that receive the treatment.

After years of research, multiple trials and millions of dollar you finally decided to publish your thesis. Thank you for sharing your wisdom with us. I guess Dr.Wise can close up USASCInet and ChinaSCInet. The fortune cookie has spoken.

I'm sorry that my not feeling the way you do is upsetting to you. But, if you look at all the research Young has done in his long career his acclomplishments are:

1. Methylprednisolone: An acute treatment which is no longer the standard of care.

2. 4AP ampyra/fampayra developed in his lab at NYU and marketed by Acorda of which he was the founder. FDA reviewers claimed if the original placebo group and the treatment group were switched it would be likely that the new placebo group would do better than the treatment group. None the less, the results were so small and the medication is very costly.

3. Both of the above were pre known medications as cord blood and lithium in his current trials are.

You mention millions and it should be billions, as by 2014 they expect the sales of Ampyra to top that. Even if, lets say it does work and in a small subgroup it increases the walking speed by 1/2 second over the placebo group, I would rather have seen that billion go into something more meaningfull.

[pinkcloud]

 Grinch83, on 23 June 2011 - 07:57 PM, said:

 pinkcloud, on 18 June 2011 - 07:44 PM, said:

I am THE CURE itself, oh..me gosh....

Everyone who does not know me...dont know I have sci. Even in a chair, they think I just broke me legs. Ooohhh yeah and doctors didnt know for years either...drinks on me everyone, I'm going to be rich.

Sorry to break hearts here....so frecking what !!!

....rid of pain, rid of autonomic problems..rid of bladder/bowel problems, rid of not having a sex life..walking and arms that work like before sci ....is a cure. Everything else - bollox.

Stupid, stupid man neuro bloke. Get a neuro bloke with sci to work on a cure, oh I forgot most of the time they are too wacked out with pain to work. And I do not imagine them wanting to be trialed on neither.

We've gotten into this before, PinkCloud, but your post above makes it seem like you're angry someone is working on restorative treatment for SCI. It's like you're mad at the guy for putting his life's work into finding a cure and then talking about the current status of that research.

Why all the hostility toward hope? I'm not saying you can't have the hostility...by all means, stew in it for all I care. I just wonder why you feel it necessary to bring it to the boards here, especially in the Cure and Treatment section of the forums?

Thanks for informing me you feel all me posts are hostilie towards hope. 'stew in it for all i care' isnt a very caring message from you considering you are all for 'hope and ending of suffering'.

Its rather obvious to me you have not read all me posts, thats ok. I dont blame you, seeing as this is your belief of me.

Thats enough of personal thoughts on anothers personality i feel, lets deal with the important stuff here.

I have a clear message:
In my case, and it seems many others whom can 'walk' on here, its crap.
I would clearly like to get accross that all this mumbo jumbo 'to walk is a cure' is bollox. I'm living with this 'version of a cure'..
Ask me do i choose walking/sitting upright over worsening sci symptoms....i choose not to walk/sit up and why??? thats what i have resulted in having to do. Not by choice, because...its wrecked me body and pain isnt even the reason why, spasm, blood pooling makes it impossible. Since i lay down....its not near as bad until i..walk and sit up again.

.
I repeat this 'walking post sci is nothing like walking pre-sci for me and other cases i have met, i hae not yet met 1 sci 'walker' not riddelled with trouble...i dont blame research,doctors and other healthcare workers for this...i blame the LACK of help post surgery/injury care/interest that makes the MAJORITY of all this hard work Dr wise and others do..wasted.

Me quote is true, i do 'fit' the description of the posters words,'no one would guess i have an sci and i walk - i am thus the 'cure'. And I am telling you..I found the results of this 'cure' to be rubbish in my case..and others on here. And yes i do feel rather frsutrated that when them on here have never walked post sci. keep going on 'if only i could walk i be satisfied' You do no favours to cases like mine whom live 'your dream' and 'brush away as ungrateful' reaction to well actully, its crap. And since i have been bedbound i am only in sheer agony and dont get body temporary paralysis when i walk or sit upright after a short time'.



I'd say i done more than me fair share of contributing to 'hope research' meself by me operating surgeon whom said 'i am cured, i walk, discharged with 1 aimitriptylin tablet- not even telling me i had sci'... if i had been referred onto these wonderful consultants i am under now...instead of the operating surgeon and 'his cure' well I wouldnt mind as much i didnt get better, because they are honest,respectful and trustworthy and look after the real sci issues. Maybe because they dont throw around such '100 % cure' mentality words and take sci issues seriously...because they come accross time and time again incomplete walkers like meself.


Maybe with your interest and ability to communictate well ( i genuine here) you could spread the message that

research to get sci cured is great, getting consultants to be trained up in this great, educating health care/patients alike needs equal amount of funding...seeing as there are not really that many scis compared to say cancer...there is in reality only so much money to go into certain areas. I know first hand that surgeons work can be 100 per cent..without the proper equipment to do the surgery (see recent british press on blunt operating instruments', its unfair because these are the surgeons whom get sued, these are the ons responsible for the care of their patient. Not the researchers like dr wise. Ohh and not forgetting theres so many causess of sci, me prolapsed disc very different from one caused by an accident and sethered.And remember no one sci is the same as another.

now i was alerted to your post by a friend whom read you were insulting me charactor,thus to make me views/important point be somewhat, deemed neurotic fueled by emotions bore', in their words (an intellect like yourself by the way, but medical one) And how may i ask will these 'cure walking' issues ever be cured if us whom report negative results, as many do on here are ignored. Its part of research...after all to hear the success and failed stories.I think you may find the websits full of them..after all, if i was 'cured' i wouldnt have never bothered to even come on a forum. I'd be out living a full life instead. Not stuck on a bed.

I'm very intersted in simons/trinitys good news of hope posts, i also am interested in davjeds and others such interesting long lived with sci posts - to me these are equal experts and remember me saying...if we had sci people doing research, it would be so much better.

like website such as these..whom understand the need for important quality living with sci after hospital discharge and way after our bodies have reeped the benefits under the surgeons knives.

Edited by pinkcloud, 11 July 2011 - 09:10 AM.

[Grinch83]

 pinkcloud, on 11 July 2011 - 08:58 AM, said:

 Grinch83, on 23 June 2011 - 07:57 PM, said:

 pinkcloud, on 18 June 2011 - 07:44 PM, said:

I am THE CURE itself, oh..me gosh....

Everyone who does not know me...dont know I have sci. Even in a chair, they think I just broke me legs. Ooohhh yeah and doctors didnt know for years either...drinks on me everyone, I'm going to be rich.

Sorry to break hearts here....so frecking what !!!

....rid of pain, rid of autonomic problems..rid of bladder/bowel problems, rid of not having a sex life..walking and arms that work like before sci ....is a cure. Everything else - bollox.

Stupid, stupid man neuro bloke. Get a neuro bloke with sci to work on a cure, oh I forgot most of the time they are too wacked out with pain to work. And I do not imagine them wanting to be trialed on neither.

We've gotten into this before, PinkCloud, but your post above makes it seem like you're angry someone is working on restorative treatment for SCI. It's like you're mad at the guy for putting his life's work into finding a cure and then talking about the current status of that research.

Why all the hostility toward hope? I'm not saying you can't have the hostility...by all means, stew in it for all I care. I just wonder why you feel it necessary to bring it to the boards here, especially in the Cure and Treatment section of the forums?

Thanks for informing me you feel all me posts are hostilie towards hope. 'stew in it for all i care' isnt a very caring message from you considering you are all for 'hope and ending of suffering'.

Its rather obvious to me you have not read all me posts, thats ok. I dont blame you, seeing as this is your belief of me.

Thats enough of personal thoughts on anothers personality i feel, lets deal with the important stuff here.

I have a clear message:
In my case, and it seems many others whom can 'walk' on here, its crap.
I would clearly like to get accross that all this mumbo jumbo 'to walk is a cure' is bollox. I'm living with this 'version of a cure'..
Ask me do i choose walking/sitting upright over worsening sci symptoms....i choose not to walk/sit up and why??? thats what i have resulted in having to do. Not by choice, because...its wrecked me body and pain isnt even the reason why, spasm, blood pooling makes it impossible. Since i lay down....its not near as bad until i..walk and sit up again.

.
I repeat this 'walking post sci is nothing like walking pre-sci for me and other cases i have met, i hae not yet met 1 sci 'walker' not riddelled with trouble...i dont blame research,doctors and other healthcare workers for this...i blame the LACK of help post surgery/injury care/interest that makes the MAJORITY of all this hard work Dr wise and others do..wasted.

Me quote is true, i do 'fit' the description of the posters words,'no one would guess i have an sci and i walk - i am thus the 'cure'. And I am telling you..I found the results of this 'cure' to be rubbish in my case..and others on here. And yes i do feel rather frsutrated that when them on here have never walked post sci. keep going on 'if only i could walk i be satisfied' You do no favours to cases like mine whom live 'your dream' and 'brush away as ungrateful' reaction to well actully, its crap. And since i have been bedbound i am only in sheer agony and dont get body temporary paralysis when i walk or sit upright after a short time'.



I'd say i done more than me fair share of contributing to 'hope research' meself by me operating surgeon whom said 'i am cured, i walk, discharged with 1 aimitriptylin tablet- not even telling me i had sci'... if i had been referred onto these wonderful consultants i am under now...instead of the operating surgeon and 'his cure' well I wouldnt mind as much i didnt get better, because they are honest,respectful and trustworthy and look after the real sci issues. Maybe because they dont throw around such '100 % cure' mentality words and take sci issues seriously...because they come accross time and time again incomplete walkers like meself.


Maybe with your interest and ability to communictate well ( i genuine here) you could spread the message that

research to get sci cured is great, getting consultants to be trained up in this great, educating health care/patients alike needs equal amount of funding...seeing as there are not really that many scis compared to say cancer...there is in reality only so much money to go into certain areas. I know first hand that surgeons work can be 100 per cent..without the proper equipment to do the surgery (see recent british press on blunt operating instruments', its unfair because these are the surgeons whom get sued, these are the ons responsible for the care of their patient. Not the researchers like dr wise. Ohh and not forgetting theres so many causess of sci, me prolapsed disc very different from one caused by an accident and sethered.And remember no one sci is the same as another.

now i was alerted to your post by a friend whom read you were insulting me charactor,thus to make me views/important point be somewhat, deemed neurotic fueled by emotions bore', in their words (an intellect like yourself by the way, but medical one) And how may i ask will these 'cure walking' issues ever be cured if us whom report negative results, as many do on here are ignored. Its part of research...after all to hear the success and failed stories.I think you may find the websits full of them..after all, if i was 'cured' i wouldnt have never bothered to even come on a forum. I'd be out living a full life instead. Not stuck on a bed.

I'm very intersted in simons/trinitys good news of hope posts, i also am interested in davjeds and others such interesting long lived with sci posts - to me these are equal experts and remember me saying...if we had sci people doing research, it would be so much better.

like website such as these..whom understand the need for important quality living with sci after hospital discharge and way after our bodies have reeped the benefits under the surgeons knives.

First off, I'm certainly not insulting your character...just your point of view on restorative treatments and cures.

I should concede that I do not know the extent of your injury, nor your level of function beyond what you've said (you can walk, but it causes you pain and is therefore not worth it). I can sympathize with that and I am truly sorry that you are in such a severe amount of pain. Honestly, I'm sorry about that. But this has nothing to do with what I had said before. From what I understand, for you, Pink, there has been irreversible damage to other parts of your body that would make a cure impractical, and therefore you scoff at those who hope for a cure because from your point of view "walking is crap."

But I feel you're forgetting a few things:

There are various physical therapy regimens one receives post-injury, and depending on the quality of care and level of injury, one may be physically more prepared to walk post-injury than others. I was lucky enough to receive therapy at one of the top SCI hospitals in the USA, and therefore have undergone and continue a regular standing/walking regimen (using a standing frame or leg braces with a walker) to better prepare my body for the eventual cure. In other words, my therapy is helping slow the detrimental SCI symptoms so that maybe, one day, I can get myself up on my two legs and move around a bit without the pain and discomfort you describe. So far, when I am up and about, I do not feel any pain and am actually happy to be eye level with AB's.

Dr. Young is not claiming to be working on a 100% cure. The statement "one would not be able to tell the difference between a SCI and non-SCI" is meant to signify that enough of the SCI symptoms (complete paralysis, total dependence on wheelchairs, lack of bowel/bladder control, and other functions) will be curbed so that yes, someone would not automatically assume I had a SCI, but maybe some lesser, insignificant injury. When you boil it down, what Dr. Young is working on is restoring growth to the lesion in the spinal cord. If he can succeed in doing that, many of the bodily functions lost due to SCI will be improved (not necessarily cured) but IMPROVED. I do not feel you are fully understanding Dr. Young's goal, as evidenced by your claiming to be his version of "the cure" because no one could tell you had an SCI and you can walk -- no, you just healed differently; your spinal cord is still screwed and no new growth has occurred. Dr. Young's goal is to see regrowth in the lesion, and thus improved function.

Now, there is also the impact Dr. Young's research may have on the newly injured. So let's say his new lithium-injected stem cells are of little help to those of us who have been SCI for 2+ years (and I don't think this is the case, but let's just say it is for the sake of argument), but when applied within days to someone who is newly injured, significantly increases the chances of restoring the damaged part of the cord. Isn't that amazing? isn't that something we should all be hoping for, even if it doesn't help those of us in the current situation? Imagine us being the last generation having to deal with paralysis?

And that's where my issue with your comments comes up. As I said before, you seem to think it's all crap, that even if a cure were to come around it's not going to help us because for you, walking = pain. But, as you said above, each injury is different. For me, since I've been working hard on maintaing a body that would one day be ready to walk again, walking might not be painful at all. And for those who have yet to be injured, a new treatment to help the growth of a damaged cord is truly remarkable and not something to be dismissed as "crap." Furthermore, and I've said this to you and others before, walking is not really top on my "cure priority list." No, I want restored function to my bowel/bladder, which would undoubtedly be a result of Dr. Young's research. In fact, I will go on record right now to predict that within five years, Dr. Young's research will lead to bladder control for a good portion of SCI individuals and he WILL GET A NOBEL PRIZE for it.

So rather than dismiss this man's hard work and dedication, look at it with some hope. That's all I was trying to say before.

You and I differ dramatically in our view on restorative treatment, but the fact is that we are in this together and we are part of this forum because we like the support, friendship and information it affords us. It was never my intention to attack your character, but I strongly disagree with your negative comments on what was meant to be a thread based on hope for the future. I hope you understand where I'm coming from, and I really hope I'm not coming off as a jerk. (I'm generally a nice guy, I swear.)

[sci1998]

Quote

No, I want restored function to my bowel/bladder, which would undoubtedly be a result of Dr. Young's research. In fact, I will go on record right now to predict that within five years, Dr. Young's research will lead to bladder control for a good portion of SCI individuals and he WILL GET A NOBEL PRIZE for it.

Hey don't they do trials to see if it works? ( In my mind they do trials to get an endorsement from the FDA and that still doesn't mean a approved treatment works)That's my point, many would take the treatment Wise is working on now with blind faith, and the way the fda approve useless drugs Soon you can get Wise's treatment. Buyer beware! And it's not just that, it's people willing to try anything and have blind faith in a researcher that only puts a real cure further away. BTW, restoring bowel and bladder in many cases requires motor neurons and cord blood and lithium aren't capable.

[Grinch83]

 sci1998, on 11 July 2011 - 06:57 PM, said:

Quote

No, I want restored function to my bowel/bladder, which would undoubtedly be a result of Dr. Young's research. In fact, I will go on record right now to predict that within five years, Dr. Young's research will lead to bladder control for a good portion of SCI individuals and he WILL GET A NOBEL PRIZE for it.

Hey don't they do trials to see if it works? ( In my mind they do trials to get an endorsement from the FDA and that still doesn't mean a approved treatment works)That's my point, many would take the treatment Wise is working on now with blind faith, and the way the fda approve useless drugs Soon you can get Wise's treatment. Buyer beware! And it's not just that, it's people willing to try anything and have blind faith in a researcher that only puts a real cure further away. BTW, restoring bowel and bladder in many cases requires motor neurons and cord blood and lithium aren't capable.

Of course they do trials...that's what Dr. Young is doing in China right now, and what the comments leading this thread are based on. When he's ready, he will present his case to the FDA to do trials here in the states. After a series of trials and based on the results of those trials, the procedure will either become a treatment or it won't.

I don't think anyone should rush into joining the trials as they stand right now. The research is still being conducted and the procedure still needs plenty of tweaking and tuning. For some people, they're willing to take the chance. For me, I'd rather wait to see what this next round of trials prove and then go from there. My point, and my belief, is that Young's trials will eventually lead to the standard of care for SCI, both for those who are post SCI for many years and those who have yet to be injured. (Including bowel and bladder control, BTW)

Side note on research trials:

I'm involved in some research studies (mainly bone density loss, neuron recovery scale accuracy, and other benign tests) and one thing my research doctor has told me is that he would avoid any kind of breakthrough treatment -- stem cell or otherwise -- for the first two trials because once you sign yourself up and undergo treatment, you are no longer eligible (or at least much further down the long waiting list) to be in any other, more finely tuned trials further down the road. Just something to keep in mind. No "blind faith" here.

[sci1998]

 Grinch83, on 11 July 2011 - 07:25 PM, said:

 sci1998, on 11 July 2011 - 06:57 PM, said:

Quote

No, I want restored function to my bowel/bladder, which would undoubtedly be a result of Dr. Young's research. In fact, I will go on record right now to predict that within five years, Dr. Young's research will lead to bladder control for a good portion of SCI individuals and he WILL GET A NOBEL PRIZE for it.

Hey don't they do trials to see if it works? ( In my mind they do trials to get an endorsement from the FDA and that still doesn't mean a approved treatment works)That's my point, many would take the treatment Wise is working on now with blind faith, and the way the fda approve useless drugs Soon you can get Wise's treatment. Buyer beware! And it's not just that, it's people willing to try anything and have blind faith in a researcher that only puts a real cure further away. BTW, restoring bowel and bladder in many cases requires motor neurons and cord blood and lithium aren't capable.

Of course they do trials...that's what Dr. Young is doing in China right now, and what the comments leading this thread are based on. When he's ready, he will present his case to the FDA to do trials here in the states. After a series of trials and based on the results of those trials, the procedure will either become a treatment or it won't.

I don't think anyone should rush into joining the trials as they stand right now. The research is still being conducted and the procedure still needs plenty of tweaking and tuning. For some people, they're willing to take the chance. For me, I'd rather wait to see what this next round of trials prove and then go from there. My point, and my belief, is that Young's trials will eventually lead to the standard of care for SCI, both for those who are post SCI for many years and those who have yet to be injured. (Including bowel and bladder control, BTW)

Side note on research trials:

I'm involved in some research studies (mainly bone density loss, neuron recovery scale accuracy, and other benign tests) and one thing my research doctor has told me is that he would avoid any kind of breakthrough treatment -- stem cell or otherwise -- for the first two trials because once you sign yourself up and undergo treatment, you are no longer eligible (or at least much further down the long waiting list) to be in any other, more finely tuned trials further down the road. Just something to keep in mind. No "blind faith" here.

That's scary that you say Wise's trial will become the standard of care. Are you aware he did that with methylprednisolone and now it is no longer a standard of care(however some doctors still give it because they are afraid they would get a law suit if they didn't. History repeats itself.

RAISE the bar! Enough of this mickey mouse gimmicks. All a researcher does is try to get a marketable treatment. And it doesn't have to really help. Thats because academia no longer exists. Greed decides and money rules. And do you watch the commercials on tv how they try to scare you into taking drugs! I think rather than pour money into research we should use resorces to educate the public to be suspicious, when the "legit" drug cartel know we only buy good treatments maybe then they will give us a cure. Blind faith gets us costly useless treatments.

Edited by sci1998, 11 July 2011 - 07:44 PM.

[Grinch83]

The standard of care for anything in medicine often changes, as was the case for methylprednisolone. (For the record, it's not that methylP didn't work, it's that over time it was proven that the negative consequences outweighed the positive effects of the steroid) Doctors are constantly working on new and improved methods of treatment for all sorts of ailments and injuries. As technology advances, so do treatments. It's also quite common for a new treatment to start showing negative effects years down the road, resulting in the discontinuation of that treatment/medicine, an unfortunate result of rushing new products to market. None of this should reflect poorly on Dr. Young, someone who continues on with his research, despite setbacks. Do you think Dr. Young is sitting in a basement somewhere, diabolically scheming new fake treatment ideas just to mess with us? No, after hearing this man speak in person, it is apparent that his heart is in this and he is dedicated to improving the lives of those with SCI.

Is it scary I think Dr. Young's research will lead to a new and improved standard of care? My opinion can't be that far out of whack as it is the shared opinion among many SCI professionals. And it has been widely agreed upon in the medical world that cell regeneration will be the future of treatment for all sorts of medical issues, including SCI. Again, I don't see why all the negativity toward someone who is trying to improve the lives of those with SCI.