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Thread: So what now??

  1. #51
    I'm not reading all of this right now. I have wasted enough time today online, but I will read it soon. I have to go finish up some school work...
    In the meantime I'd like to share this video.

    http://www.youtube.com/watch?v=lIEs_Y9aDHo
    If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


    Sometimes it is easier to widen doors than it is to open minds.

  2. #52
    Quote Originally Posted by Jim View Post
    LaMem, this community needs more of group effort if we want to see things happen quicker. I am not making a judgement on what individuals do or not do to make this happen. That's not how I roll.
    If what you mean by more of a group effort in this community is we agree on a timeline and do not question being told repeatedly for years how close we are, I disagree. I don't believe in the giving or receiving of blown smoke.

    Will there be treatments to improve us? Yes! I disagree with the optimists as to how close we are to having that realized. Forgive my reluctance to believe we are incredibly close when many of us have heard we are for years and years.

    Are clinical trials beginning? Yes! Hooray! It's a start and a good one, but it's a tiny, small move to where we need to be.

    Also, individuals here (and elsewhere) give (in a number of ways) to a various researchers and neuro research efforts, including Wise. His is not the only research game in town and views vary greatly as to who will do what first and which neuro disses will benefit through improvement gained by the science.

    Maybe we are saying the same things other than agreement upon a timeline and how optimistic we should be that treatments are near?

  3. #53
    I believe if more people get involved the cure will be here sooner. As far as a timeline, no one can predict. Because of dedicated researchers like Wise, we get closer every day.

  4. #54
    Senior Member
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    LaMemChose - I think you are constructing something here that doesn’t exist. You say there is this chorus of researchers who continually make promises about how close we are, then you go on with five more years, ten more years and then you attach this so-called (imaginary) chorus of researchers of yours by saying they don’t deliver. Well I must say you must have extraordinary good hearing because I don’t hear what you and some others are trying to construct. What I hear scientist, researchers and clinicians say is; to be able to cure SCI will be a very difficult task, it is probably doable but it might take many years, many does not even believe in it. I don’t hear this chorus of researchers you claim exist and I would like to ask you how many of these there are in this chorus you claim exist; one, two, ten, fifty or hundred? Can you document this chorus of yours or is it just something you are thinking exist? What I hear and see is scientists, researchers and clinicians that are willing to help people with spinal cord injuries. And I must say they are very patient and has great stamina if they are hearing some of the nonsense even spinal cord injured peoples are writing here. If I was one of them I might just have said screw you and then moved to another field.

  5. #55
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    I am not sure where to start here. Forgive me for my ramble. I have only been injured 4 years. Freak accident but whatever. There have been so many good points made. I have done the "get on with your life" thing. I have to. It is not easy at all. I am not happy but I do recognize the progress I have made. I don't have access to any government help (I guess at-home moms don't really work).

    Addiesue, I appreciate the video you posted. It shows how many people are trying hard to raise funds for research. I wish that they could put those PSA's out there. I hope that someday they will be funnelling those hard earned funds towards progress. It is there. Will I benefit, I don't know. One can only hope. I was 41 when I was injured. I try to stay in shape but I really hate formal excersise.

    So what now? is a great place to start this discussion. I hope we can come to an agreement as to where we go. No finger pointing, no "my injury is worse than yours", etc. We are all in the same boat. SCI sucks big time!!

    Kathy

  6. #56
    Leif, go back to history at CC and elsewhere and look at what was said and written. If the researchers are no longer giving timelines, hooray! It has been done in the past.

    I'm doing my best to stop posting in this thread. I'll leave this thread and my opnions here this way.

    Will there be treatments for us?

    Yes.

    Timeline?

    Indefinite.

    Have a good evening.

  7. #57
    Senior Member
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    I don't see the chorus you claim exist.
    Quote Originally Posted by LaMemChose View Post
    Leif, go back to history at CC and elsewhere and look at what was said and written. If the researchers are no longer giving timelines, hooray! It has been done in the past.

    I'm doing my best to stop posting in this thread. I'll leave this thread and my opnions here this way.

    Will there be treatments for us?

    Yes.

    Timeline?

    Indefinite.

    Have a good evening.
    How do you know there will be treatments for SCI?

  8. #58
    Quote Originally Posted by Jim View Post
    The SCI Community can bring about the discovery of curative therapies much sooner if we organize, spread awareness and raise money. I said this years ago and it still rings true, together we stand, divided we sit.
    jim, look at the american diabetes association, which i have supported since 1974 or something when i had money. the various cancer societies, etc. etc. don't blame the sci community. curing these things are hard and they take yrs. after a while, it becomes more important to just live as best one can.

    and, when you donate, chk the stats on admin support vs real support. but, i'm sure you know that.

    someday, it will happen. i know that.

  9. #59
    The key is clinical trials. If you do a search today for "spinal cord injury" on http://clinicaltrials.gov, you will find 316 trials. But, many of the trials are observational (i.e. not interventional) and many are no long open. So, if you search for those that are interventional and open, there are 106 trials. Things are happening but you can see that relatively few are addressing restoration of function and regeneration of chronic spinal cord injury.

    Acute/Subacute Spinal Cord Injury
    1. Minocycline and Perfusion Pressure Augmentation in Acute Spinal Cord Injury: minocycline, SCPP augmentation.
    2. Acute Safety, Tolerability, Feasibility and Pharmacokinetics of Intrath. Administered ATI355 in Patients With Acute SCI
    3. Transplantation of Autologous Olfactory Ensheathing Cells in Complete Human Spinal Cord Injury
    4. Safety Study of GRNOPC1 in Spinal Cord Injury
    5. Cerebrospinal Fluid (CSF) Drainage and Cytokine Profiling in the Treatment of Acute Spinal Cord Injury (SCI)
    6. Evaluation of Tolerability and Efficacy of Erythropoietin (EPO) Treatment in Spinal Shock: Comparative Study Versus Methylprednisolone (MP)
    7. Evaluation of the Safety of C-Spine Clearance by Paramedics
    8. Treatment of Type II Odontoid Fractures Among the Elderly


    Acute/Subacute Spinal Cord Injury - Rehabilitation
    1. Effectiveness of Automated Locomotor Training in Patients With Acute Incomplete Spinal Cord Injury: A Multicenter Trial: Locomotor Training with a robotic device
    2. SCIPA (Spinal Cord Injury and Physical Activity) Hands-On: Early Intensive Hand Rehabilitation After Spinal Cord Injury
    3. Treadmill Training With Body Weight Support in Patients With Spinal Cord Injury
    4. Rehabilitation of the Upper Extremity With Enhanced Proprioceptive Feedback Following Incomplete Spinal Cord Injury
    5. Patterned Functional Electrical Stimulation (FES) Ergometry of Arm and Shoulder in Individuals With Spinal Cord Injury
    6. Effect of Prolonged Electrical Stimulation on Neural Plasticity in Spinal Cord Injury
    7. Enhancing Walking in People With Incomplete Spinal Cord Injury: a Pilot Study
    8. Effect of Vibration Therapy on Bone in Persons With Sub-acute Spinal Cord Injury
    9. Enhancing Indoor, Community, and Advanced Wheelchair Skills in Spinal Cord Injury (SCI)
    10. FES Therapy:Restoring Voluntary Grasping Function in Chronic SCI
    11. Evaluation of an Advanced Lower Extremity Neuroprostheses
    12. Novel Intervention to Influence Muscle Plasticity in Veterans


    Chronic Spinal Cord Injury - Regenerative
    1. Transfer of Bone Marrow Derived Stem Cells for the Treatment of Spinal Cord Injury
    2. Safety and Feasibility of Umbilical Cord Blood Cell Transplant Into Injured Spinal Cord


    Chronic Spinal Cord Injury - Rehabilitation/Training/Exercise
    1. Cardiovascular Fitness for Robotically Assisted Treadmill Training in Persons With Chronic Incomplete Spinal Cord Injury
    2. Lokomat Versus Strength Training in Chronic Incomplete Spinal Cord Injury
    3. The Effect of an Exercise Program on Physical Function After a Spinal Cord Injury
    4. Spinal Cord Injury: Endurance, Strength and Cardiac Function Induced by Efficient Training Protocols
    5. Improving Hand and Arm Function After Spinal Cord Injury (SCI)
    6. Exercise to Reduce Obesity in Spinal Cord Injury
    7. Hand Function for Tetraplegia (FIRSTHAND System)
    8. The Effects of Two Functional Electrical Stimulation Cycling Paradigms
    9. Effects of Exercise in People With Tetraplegia
    10. Orthostatic Tolerance During FES (Functional Electrical Stimulation)-Walking in Paraplegia
    11. Effects of Exercise in People With Paraplegia


    Chronic Spinal Cord Injury - Complications
    1. The Effects of L-carnitine on Fatigue in Spinal Cord Injury: L-Carnitine.
    2. Use of an Oral Beta-2 Agonist in Persons With Spinal Cord Injury: extended release beta-2 adrenergic agonist.
    3. Study on Functional Electrical Stimulation (FES) Cycling Following Spinal Cord Injury.
    4. Respiratory Resistance Training on Sleep Quality in Persons With Spinal Cord Injury
    5. Physical Activity for Depression in People Aging With Multiple Sclerosis (MS) and Spinal Cord Injury
    6. Implanted Myoelectric Control for Restoration of Hand Function in Spinal Cord Injury
    7. Spinal Cord Injury Energy Management Program
    8. Preventing Pneumonia and Other Respiratory Problems in Persons With Spinal Cord Injury
    9. Project to Improve Symptoms and Mood in People With Spinal Cord Injury
    10. A Colonic Tube to Improve Bowel Function in Spinal Cord Injury
    11. Self-Management to Prevent Ulcers in Veterans With SCI (Spinal Cord Injury)
    12. A Comparison of High vs. Low Tidal Volumes in Ventilator Weaning for Individuals With Cervical Spinal Cord Injuries
    13. A Study to Evaluate the Efficacy and Safety of Vardenafil in Men With Erectile Dysfunction Caused by Spinal Cord Injury
    14. The Effect of Vibration Therapy on the Bone Density of the Tiba in Patients With Spinal Cord Injury
    15. Pilot Study of Fosamax in Spinal Cord Injury
    16. Safety and Efficacy of L-NAME and Midodrine to Increase MAP
    17. Efficacy and Safety of Zoledronic Acid in Acute Spinal Cord Injury: Prevention of Bone Loss
    18. Effects of Salsalate on Prandial-Induced Vascular Inflammation After Spinal Cord Injury (SCI)
    19. Energy Costs of Spasticity in Spinal Cord Injury: A Pilot Investigation
    20. Prazosin Vibrostimulation Autonomic Dysreflexia and Spinal Cord Injury Study
    21. Spinal Cord Stimulation to Restore Cough
    22. Evaluation of Wire Electrodes to Activate the Expiratory Muscles to Restore Cough
    23. Pressure Ulcer Prevention for SCI Using a Tele Home Program
    24. Effect of Cannabinoids on Spasticity in Spinal Cord Injured Persons
    25. Functional Melatonin Replacement for Sleep Disruptions in Individuals With Tetraplegia
    26. Efficacy and Safety of Standard Oral Colonoscopic Preparations With or Without Neostigmine Compared to Pulse-Irrigation Colonic Lavage
    27. Interdisciplinary Pressure Management & Mobility Program as an Alternative to Usual Care: A Pilot Study (Pressure Ulcer)
    28. Implanted Gluteal Stimulation System for Pressure Sore Prevention
    29. ontinuous Intrathecal Baclofen Infusion for Chronic Spasticity


    Chronic Spinal Cord Injury - Pain
    1. Effectiveness of Controlled-Release Morphine for Chronic Neuropathic Pain After Spinal Cord Injury
    2. Application of Transcranial Direct Current Stimulation (tDCS) in Patients With Chronic Pain After Spinal Cord Injury
    3. Study of Pregabalin in the Prevention of Central Neuropathic Pain in Acute Spinal Cord Injury
    4. A 17-Week Trial To Assess Pregabalin For The Treatment Of Nerve Pain Due To Spinal Cord Injury
    5. Acupuncture Treatment to Reduce Burning Pain in Spinal Cord Injury
    6. An Open-Label Long-Term Study Of Pregabalin For The Treatment Of Central Neuropathic Pain
    7. Neurofeedback Treatment of Pain in Persons With Spinal Cord Injury (SCI)
    8. Telephone Intervention for Pain Study (TIPS)
    9. Effects of Vaporized Marijuana on Neuropathic Pain


    Chronic Spinal Cord Injury - Bladder/Bowel
    1. Treatment of Neurogenic Detrusor Overactivity: Early Versus Late Pudendal Nerve Stimulation in Spinal Cord Injury (SCI) Patients
    2. Somato-sensory Reflex Arch in Spinal Cord Injury - Effect on Clinical Outcome, somatosensory reflex arch (Xiao Procedure).
    3. Multifaceted Treatment of Catheter-related Urinary Tract Infection
    4. Prevention of Urinary Tract Infection (UTI) in Persons With Spinal Cord Injury (SCI)
    5. Effect of Cranberry Capsules on Urinary Infection Rates in Spinal Cord Injured Patients During Post Acute Rehabilitation
    6. Comparative Study of the Efficacy and Safety of Muscarinic M3 Receptors Antagonists in the Treatment of Neurogenic Detrusor Overactivity
    7. Clinical Study of Solifenacin Succinate in Patients With Bladder Symptoms Due to Spinal Cord Injury or Multiple Sclerosis
    8. Botulinum Toxin Type A Versus Oral Oxybutynin ER in Spinal Cord Injured Patients With Neurogenic Detrusor Overactivity
    9. Study to Evaluate NVC-422 for Urinary Catheter Blockage and Encrustation
    10. Intranasal Administration of Neostigmine and Glycopyrrolate for Bowel Evacuation
    11. Efficacy Study of Pudendal Neuromodulation for the Treatment of Neurogenic Overactive Bladder
    12. 2 Week Open-label Pharmacodynamic and Pharmacokinetic Study of Multiple Doses of a Darifenacin Liquid Oral Suspension in Children (6 - 15 Yrs) With Neurogenic Detrusor Overactivity
    13. A Long-term Follow-up Study of Botulinum Toxin Type A in Patients With Overactive Bladder as a Result of Spinal Injury or Multiple Sclerosis
    14. Safety and Efficacy Study of Botulinum Toxin Type A for the Treatment of Neurogenic Overactive Bladder
    15. Effects of Spinal Cord Injury on Female Sexual Response


    Chronic Spinal Cord Injury - Equipment
    1. Development of an Ergonomic Wheelchair Pushrim
    2. Evaluation of a Tongue Operated Assistive Technology for Individuals With Severe Paralysis
    3. BrainGate2: Feasibility Study of an Intracortical Neural Interface System for Persons With Tetraplegia

  10. #60
    Quote Originally Posted by LaMemChose View Post
    Ruin someone's work? Not even on my worst day.

    I expressed my opinion. It's allowed, even in this forum.


    And Ox, I understand science far more than you think I do. It's part of the reason I no longer become ecstatic when a researcher, any researcher, says we're almost there. Five more years. Ten more years.

    My gripe, if there is one, is the chorus of researchers who continually make promises about how close we are. So far those timelines given by scientists are woefully inadequate and lacking.

    Had scientists not said it so often and for so many years, I might actually believe it.
    LaMem, I am so glad you wrote this. I think this forum would greatly benefit from a more balanced, realistic and intelligent approach, so that people can actually have meaningful discussions about potential treatments here.

    Hope you feel better soon.

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