Why Don't We Have a Cure for Spinal Cord Injury? 2016

[JamesMcM]

I don't think anyone is there yet ... close, but not yet. You're a young man though and I'm certain you'll see improvement in your lifetime.

Regardless paralysis rot does not discriminate based on age, injured at 20 I Imagine my bones will be as brittle As they will get - due to paralysis related osteoporosis - in 10 years after injury or less, whether I live to 80 as a quadriplegic or not! Same applies with drop foot, bladder shrinkage and hardening ( these two with absolute certainty) etc. etc. I’m not a paraplegic so I’m not going to destroy my shoulders over the years which would be very much age conducive, Although somehow I did develop tendonosis In my shoulders. Again infection ( i’ve got UTIs with basic E. coli that is resistant to every antibiotic but two IV antibiotics) , bladder stones, kidney stones, autonomic dysreflexia ( however the damage from my frequent AD may show it’s self later in years, and as anyone I will be more susceptible to a stroke with age) dealt with it all since day one, bedsores, septicaemia, pneumonia I may be more susceptible to it with age in combination with paralysis rot but I’ve had all of it from the age of 20 and continue to have Whatever one of them every now and then… A good diet has helped and always will help. I’m rambling, I digress, basically I’m not worried about my age, my youth is void ( you yourself know this, i’m sure you have had many experiences that a teenager, 20-year-old etc. should not normally deal with) there are 50-year-old C8 quadriplegics that don’t have high pressure bladders, a syrinx, have very little susceptibility to AD etc That are in far better condition than me, and have not experienced much of what I just stated above. Paralysis from a spinal cord injury is a very serious thing, very nuanced , Very complicated. Spinal atrophy goes it goes, axons atrophy and they are gone etc. youth makes no difference it’s been five years they are gone no different than they would have been if I was injured at 40.

[Pauly1]

Oh but they are the results that have been achieved with the autologous Neural stem cells are already impressive in humans, people laying on their back able to lift their own legs Which was shown at one of the earlier W2W And there was many other recoveries some of which I was briefly privy to and others not so much, and there are so many things they are still trying to work out: dosage, method to get the injection every three months for two years directly to the injury site, best methodology for functional daily training to stimulate regeneration ( they are not the only labs and/or researchers ..
..
The trial in Russia extracts from our bone marrow and reprograms them into neural cells directly from our own body. Dr. Ahlfor’s Is a specialist in regeneration, and in terms of his past credentials in education and just overall upbringing he is basically a prodigy... The problem is the technology he is working with is incredibly expensive and is state-of-the-art!

JamesMcM, can you link me to more details about this Russian trial where bone marrow cells are reprogrammed to neural cells?

[Fly_Pelican_Fly]

The epidural stimulators, especially NRTs transcutaneous has shown very impressive results on its own in case studies again on humans ( to that pelican guy, I?m not going to debate with you go back to our previous conversation years ago?

This pleases me immensely.

[Fly_Pelican_Fly]

JamesMcM, can you link me to more details about this Russian trial where bone marrow cells are reprogrammed to neural cells?

The clinical trial in Russia was halted to focus on moving the IP into Fortuna Fix and securing the investment needed to run a trial in the West. The next steps were in the news last week and posted on another thread.

[Fly_Pelican_Fly]

If we bitched as much as the perfectly healthy black community, LGBT Community, Muslim community etc. maybe something will come of it.

Not sure they would describe it as "bitching"......

[lunasicc42]

Pelican... Statements and questions that you have posed have been answered... Now the question that I and another member asked of you.... What type of research would you like to see focused on or what type of clinical investigations would you like to see carried out

[Fly_Pelican_Fly]

Pelican... Statements and questions that you have posed have been answered... Now the question that I and another member asked of you.... What type of research would you like to see focused on or what type of clinical investigations would you like to see carried out

Sorry Anthony did you answer the questions I posed?


1) Who is accountable for delivering Cures?
2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

FPF

[lunasicc42]

I think many different people share portions of the total need to cure sci: the basic sci researchers, the clinicians and doctors who chose to go into that profession (highly admirable when you think about the far easier stuff that they could be doing). Patients and sci fundraising organizations to properly disperse monies to adequate researchers or whatever and I am undoubtedly leaving someone out maybe. In a perfect world we as the patients shouldnt have to ask for so much to be done for us, almost to the point of begging but we need advocation on our part and people are doing it in small doses... Nationwide TV commercials, currently all our fundraising and awareness advertising is hard to find or somewhere on the internet and the only people that know how bad sci really is are pretty much intimately connected to sc, get it known about on a large scale... I am rambling off the cuff but in a short answer it would begin with more awareness: some Nationwide TV commercials, get sci and it's complications in the publics eye and state that it's just not a lost cause/moneypit but that small inroads are being made... More rambling... Your turn

[lurch]

I think there is an interest from the public that needs to be tapped into. "hopeful spinal injury breakthrough" type stories (which I know are usually woefully inaccurate and patronising) still get press. The public interest is there we just need to get the true story of SCI out there.

[lunasicc42]

I think there is an interest from the public that needs to be tapped into. "hopeful spinal injury breakthrough" type stories (which I know are usually woefully inaccurate and patronising) still get press. The public interest is there we just need to get the true story of SCI out there.

Yes... This.

[StemCells&AtomBombs]

Actually, I answered the question. I'd also like to hear your answers unless your questions are rhetorical.

Sorry Anthony did you answer the questions I posed?


1) Who is accountable for delivering Cures?
2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

FPF

[lynnifer]

I've said for a long time that we should get away from the label of, "disabled," as it denotes forever.

Spinal cord injured only. Words DO matter.

[Fly_Pelican_Fly]

Actually, I answered the question. I'd also like to hear your answers unless your questions are rhetorical.

Dennis, I have no interest in engaging with you. You shouldn’t be surprised by this either.

[lunasicc42]

no FPF, thats not the way discussion and the exchange of ideas works... You asked questions of me then didn't attempt to answer mine

[Fly_Pelican_Fly]

Anthony, I wasnt talking to you I was talking to Dennis. I have no interest in engaging with him!

Re discussions and exchange of ideas. Let's see. Looking at your answer you believe that raising awareness through TV commercials will help attract money to accelerate and bring us cures. Is that right? Ok so say we have lots of compelling TV commercials and the world is now aware of how awful SCI is, what happens next?

Btw this was 17+ years ago. https://www.youtube.com/watch?v=c1zE5f_A5sY