Page 1 of 3 123 LastLast
Results 1 to 10 of 23

Thread: Wise how long to you think it will be for the cure?

  1. #1

    Wise how long to you think it will be for the cure?

    Wise I was injured in September of 99, and I remember them talking about the cure. I was 16 at the time. The timeline was 5-7 years. I even visited your facility between the period of September, October, or November of 99. I forget what month it was. But you were having a big fundraiser, and Travis Roy was one of your speakers.

    So I looked at it as ok, I have to live like this till I'm either 21 or 23 okay I can live with this I still have the rest of my life at me.

    I remembered those numbers and when I got home from rehab, all I did was work out. My parents bought the best equipment, even bought me the Ergys bike, to keep my legs and shape.

    Still to this day I have never accepted my injury. I never can and I never will. I just can't picture living the rest of my life, not walking. It's not who I am, it's not me.

    I'm going to be 20 years old by the end of this month. And the depressing thing is it doesn't even look like the research is within reach of that goal.

    How can the research that not only told me, but told everybody at that time period be so far off?

    If you could pick a timetable from this point on, how many years do you think it would be?

    And one more question. I have been paralyzed since September 5th 1999. Could I still be a candidate for project walk?

    And has project walk help anybody with a complete injury walk, or regain function?

    Thank you

  2. #2
    If you could pick a timetable from this point on, how many years do you think it would be?
    Hi Dann, please read the following article regarding the earliest timeframe for potential SCI therapies.

    http://carecure.rutgers.edu/spinewir...ntSchedule.htm

    And one more question. I have been paralyzed since September 5th 1999. Could I still be a candidate for project walk?

    And has project walk help anybody with a complete injury walk, or regain function?
    It's never too late to start an aggressive physical therapy program. Being 4 years post wouldn't exclude you from joining Project Walk or any of the other recovery based exercise programs. I'm not sure how many people with complete injuries have regained the ability to walk unassisted but I know that intensive therapy can lead to functional gains. A visit to the Exercise Forum here would probably answer many of your questions.

    [This message was edited by seneca on 05-09-03 at 04:00 AM.]

  3. #3
    Senior Member KIM's Avatar
    Join Date
    Jul 2001
    Location
    Piedralaves (Avila) SPAIN
    Posts
    1,017
    I think that frametime needs updating

  4. #4
    Kim, you are right. The time table needs to be updated. I had originally put the time table together with great trepidation and in response to many people who were making crazy predictions. Some people saying that there will be no treatment within their lifetime and others saying that it was going to happen within a year. The main points of the article remains true, I believe. First, treatments are being tested. Every therapy requires time to develop. The more therapies we have, the better the research, and the earlier we do good clinical trials, the greater the likelihood that we will have therapies for people. And, there is a strong element of luck. As much as I hate to depend on luck, I have to admit that it plays an important role when we don't have resources to investigate all the possibilities systematically.

    Dann21, hi. I am glad that you have not accepted your injury. The time table is just a set of goals. However, let us look at some of the near-term treatments that I had listed as possibilities for pivotal results in 2002-2005.

    2002. Treadmill training. This is here now. Many rehabilitation centers are doing treadmill training. Many people who were "incomplete" and not walking before are walking better today because of treadmill training. Some evidence suggests that people with "complete" spinal cord injury are getting improved locomotor and postural reflexes.

    2003. Fampridine. This is now undergoing pivotal clinical trials in 72 centers around the country. The results of these trials will be available by the end of this year. Likewise, I think that some evidence will become available to show that Lokomat and other devices can be used for locomotor training.

    2004. Lumbar L2 stimulation. I have not yet heard of much use of this method of stimulating locomotion outside of the two centers that had reported the findings in Arizona and Australia. Peripheral nerve bridging of the spinal cord has not gone very far. Dr. Carl Kao continues to transplant peripheral nerves in Ecuador, Dr. Henreich Cheng apparently has bridged some patients in Taiwan, but I have not heard anything that suggests improvements that would lead to this procedure being adopted in the United States.

    2005. AC electrical current. I have not heard of any results to date. Copaxone is being considered for subacute spinal cord injury but no clinical trial has yet started. Peripheral bridging of the bladder has continued (Zhang) and probably is helping some people but has not yet been adopted or accepted in the United States. Inosine does not look like it will be tested in clinical trial.

    So, what progress has occurred since I wrote the article in 2002?
    • OEG trials have gone ahead much faster than I could have hoped for. In Beijing, probably over 350 patients have now received OEG transplants. In Brisbane, they have developed a way of growing the OEG cells from nasal mucosa, therefore providing a potential path for OEG trials in the U.S. U.S. clinicians are discussing starting such a trial in the U.S.
    • Nogo receptor blockers have been shown to improve recovery in animals and hopefully may be ready to go to clinical trials by 2005.
    • Fetal human stem cells have been tried in probably 30-50 patients in China. In Japan, they have reported improve recovery in rats and are testing them in monkeys.
    • A theophylline clinical trial has been started in Detroit.

    What new therapies are there since I wrote that article in 2002 and have a chance of reaching clinical trials by 2005?
    • Non-embryonic Stem Cells. It continues to be difficult and probably unlikely that embryonic or fetal stem cells will be transplanted in the U.S. in the near future. The fight to open that door continues but I believe that we are beginning to find soe ways around the impasse. Two potentially acceptable source of stem cells to treat spinal cord injury have emerged in the past year. Bone marrow stem cells have been reported to remyelinate the spinal cord and is being transplanted into patients with chronic spinal cord injury in Brazil. Umbilical cord blood stem cells are being tested in animals. Enteric glial cells have been shown to improve regeneration of dorsal root axons into the spinal cord.

    Finally, in the U.S. there is a bill to ask Congress to fund the Christopher Reeve Paralysis Bill to initiate a clinical trial network. I think that this is an important step to facilitating clinical trials in the coming year.

    Wise.

  5. #5
    "2002. Treadmill training. This is here now. Many rehabilitation centers are doing treadmill training. Many people who were "incomplete" and not walking before are walking better today because of treadmill training. Some evidence suggests that people with "complete" spinal cord injury are getting improved locomotor and postural reflexes."

    Dr. Young.
    Would you know where I could find this evidence?
    Thank you.

  6. #6
    This is getting sick and twisted! The word "cure" is being flung around far too loosely.
    It's important to accept this fact, that even with potential therapuetic benefits in the pipeline, not false hope but real, valid hope, we will never be what we were before injury. Though improvements in level to level function and better quality of life, sex, bladder etc. is a real possibility.

  7. #7
    Originally posted by bent:

    This is getting sick and twisted! The word "cure" is being flung around far too loosely.
    It's important to accept this fact, that even with potential therapuetic benefits in the pipeline, not false hope but real, valid hope, we will never be what we were before injury. Though improvements in level to level function and better quality of life, sex, bladder etc. is a real possibility.
    The reality is that WE SIMPLY DON"T KNOW. Every injury is different, every person is different, to say that we "will be" or "won't be" one way or another is baseless at this point. Heck, look at two ball players with the same reconstructive surgery after a knee injury. One will return to play at an equal or higher level, the other will retire. The difference? Who knows. It could be differences in their willingness to push through rehab or it could be how their individual bodies respond to therapy. The same will be for us when meaningful therapies are developed to help us heal from our injuries.

    The "cure" is dependent on how each individual wants to define it. Much as we do in defining individual success. In my mind, a "cure" means that my body will be restored as close to the average person of my age as possible. That's my reality . . . as myopic as others might think it is.

  8. #8
    Senior Member Schmeky's Avatar
    Join Date
    Sep 2002
    Location
    West Monroe, LA, USA
    Posts
    3,416
    Dr. Young said:

    "Bone marrow stem cells have been reported to remyelinate the spinal cord and is being transplanted into patients with chronic spinal cord injury in Brazil."

    What's up with this? How do I find out the results to date? Is this where Vgrafen is?

  9. #9
    Member
    Join Date
    Jan 2003
    Location
    California, us
    Posts
    56
    Yo, Schmecky, I'm thinking Grafen's in Brazil, too. He dont come on the radio no more, don't answer emails, nothing. I heard like three months ago or whatever him and Rebechi and Bruno went down there. I wish they would say something here so we know what's up. He was talking out his ass last year, if anybody remembers, about all this progress in Brazil, but I'll bet he and them guys ran off to get their's first, you know? Does anybody know how to contact them direct and find out for sure?


    Hey Wise, you was saying a long time ago you and Dr. Barros are tight. Maybe you know something about this or what Barros is really up to. Man, I love a mystery!!!

    Live for today, look to tomorrow

  10. #10
    Senior Member Schmeky's Avatar
    Join Date
    Sep 2002
    Location
    West Monroe, LA, USA
    Posts
    3,416
    Morgan,

    Me and you may be on to something. Can anybody forward me the Dr.s name, city, etc. in Brazil? I'll call and investigate. If Vgrafen and his muskateers are down there (Brazil), I'm confident V will provide us crips with a detailed account of the adventure. Please keep me posted Morgan!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •