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Thread: Scientist receives $1.8M defense grant from Kessler Foundation for spinal cord injury

  1. #11
    Quote Originally Posted by c473s View Post
    The conclusion has been known for years. Hell even the bone loading in elderly by exercise or weights has demonstrated effectiveness in slowing loss of bone density. Spending any more research dollars on this is less than useful.
    c473s, bone loss in the elderly and bone loss in SCI are two different animals. Bone loss in SCI happens rapidly after injury and is not solely related to lack of loading and/or loss of muscle mass. Bone loss in the elderly occurs slowly and in attributed to loss of muscle mass/force. The research that has been done previously has shown mixed results with standing, with the majority of studies showing no benefit to bone health with passive standing. FES has shown benefits to bone health, as well as some testosterone studies, so combining these two therapies with standing does make sense. It will advance our knowledge of how to assist with bone health in the present.

    Bone loss after SCI:

    http://www.ncbi.nlm.nih.gov/pubmed/23408218

    http://www.ncbi.nlm.nih.gov/pubmed/21607037

    http://www.ncbi.nlm.nih.gov/pubmed/19894005

    Standing studies:

    http://www.ncbi.nlm.nih.gov/pubmed/22643724

    http://www.ncbi.nlm.nih.gov/pubmed/24621040

    http://www.ncbi.nlm.nih.gov/pubmed/20147770

    http://www.ncbi.nlm.nih.gov/pubmed/19172152

    http://www.ncbi.nlm.nih.gov/pubmed/18581668

    FES + Standing:

    http://www.ncbi.nlm.nih.gov/pubmed/22507023

    http://www.ncbi.nlm.nih.gov/pubmed/22187008


    Eric Harness, CSCS
    Founder/President
    Neuro Ex, Inc
    Adaptive Performance and Neuro Recovery

  2. #12
    @ Snowman: yes I am well aware of the bone loss differences in elderly and SCI. I have seen treadmill evidence of building bone density from years ago when it was first trialed in the U.S./ the early e-stim work having trialed Dr. John McDonald's work getting the bikes approved and a variety of other data gathering and patient treatment protocols. I have been in the field for 39 years and am very comfortable that it works.
    Last edited by c473s; 04-25-2014 at 06:03 AM.

  3. #13
    So, if Standing+FES+Testosterone turns out to preserve or rebuild bone faster/better than other protocols would it still be a waste of time/money?

    There are still many patients who cannot get standing frames due to insurance refusal and/or doctors not prescribing, the more research there is to back it up, the better chance they have of getting it covered.

    I agree that money for cure research is important ( I assume we can agree that acute injuries will probably be the first in line), but money for testing novel treatments for those who are currently injured is also important. Without that we would not be where we are now with all of the activity based therapy programs, FES, Exoskeletons, etc etc.


    Eric Harness, CSCS
    Founder/President
    Neuro Ex, Inc
    Adaptive Performance and Neuro Recovery

  4. #14
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by paolocipolla View Post
    Can you be more clear on that?

    Paolo
    I don't see an equal study in women substituting, say, calcium and Vitamin D for the testosterone.

    And studies that can prove this does preserve bones help those in many countries get insurance to cover home standers so we maintain our bones until regeneration cures happen. This is not a rehab instead of cure thing but a rehab until cure thing.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #15
    Ok Sue, but you seem to assume there are enough money in the field to cover all areas of research.
    I don't think this is the case, so priorities need to be set.
    In my opinion this kind of study is not totally useless (just almost), but should have low priority.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  6. #16
    Quote Originally Posted by Snowman View Post
    So, if Standing+FES+Testosterone turns out to preserve or rebuild bone faster/better than other protocols would it still be a waste of time/money?
    Yes, if there is no recovery of function, it is a total waste of money. Promoting these "general wellness" studies is the worst kind of scam.

    Quote Originally Posted by Snowman View Post
    There are still many patients who cannot get standing frames due to insurance refusal and/or doctors not prescribing, the more research there is to back it up, the better chance they have of getting it covered.
    If you cannot stand without a frame, a frame is just another piece of furniture. Insurance shouldn't cover it.

    Quote Originally Posted by Snowman View Post
    I agree that money for cure research is important ( I assume we can agree that acute injuries will probably be the first in line), but money for testing novel treatments for those who are currently injured is also important. Without that we would not be where we are now with all of the activity based therapy programs, FES, Exoskeletons, etc etc.
    We would be much further along without the money we wasted on "novel treatments" like exoskeletons and Project Walk. And I don't accept your premise that acute injuries will be first in line (and the current clinical trial environment seems to back me up on this point). Your whole cheerleader bit for trials like this seem disingenuous considering your occupation as a huckster, selling a nonexistent hope of functional recovery through exercise alone to desperate and credulous people.

    BTW moderators, how is this guy allowed to advertise his business in every post? Isn't that against the site's policy?

  7. #17
    Many policies have such a low DME limit they won't buy them. If they do and the MD writes the order based on a licensed PT evaluation they are rarely refused. I am not opposed to research of any kind but I truly believe a well educated doctor can get a standing frame approved. I tend to worry when when a patient 10 years post injury gets a standing frame without a bone density evaluation.

    Getting an insurance policy changed on what it will approve is more employer driven in my experience. If the employer wants to keep their premiums from increasing they will not usually ask for higher DME limits simply because they are not well enough informed to realize what a wheelchair costs or even a tub bench. The system stinks but nobody thinks they will ever break their back or need a wheelchair. We target the large national employers with education efforts in their HR departments and many times get them to modify their benefits. They are more likely to be self insured and can usually any benefit they want the TPA to put in their policy standards.

    Quote Originally Posted by Snowman View Post
    So, if Standing+FES+Testosterone turns out to preserve or rebuild bone faster/better than other protocols would it still be a waste of time/money?

    There are still many patients who cannot get standing frames due to insurance refusal and/or doctors not prescribing, the more research there is to back it up, the better chance they have of getting it covered.

    I agree that money for cure research is important ( I assume we can agree that acute injuries will probably be the first in line), but money for testing novel treatments for those who are currently injured is also important. Without that we would not be where we are now with all of the activity based therapy programs, FES, Exoskeletons, etc etc.

  8. #18
    Quote Originally Posted by KofQ View Post
    Yes, if there is no recovery of function, it is a total waste of money. Promoting these "general wellness" studies is the worst kind of scam.


    If you cannot stand without a frame, a frame is just another piece of furniture. Insurance shouldn't cover it.


    ...
    That sounds amazingly narrow minded to me. Should we not study better ways to prevent pressure sores, or treat them faster? Should we not investigate better products or methods for vent-dependent people to manage their breathing? Studying ways to improve health and wellness of people is not a scam. Curative studies designed to return function are useless if people aren't alive to receive them.

  9. #19
    KofQ

    Wow, "huckster" huh. Interesting... been a while since I was called that (2002/2003 or so)... "nonexistent hope of functional recovery through exercise alone"... This is really the wrong thread to rehash that argument. I will point out however that "activity based therapy" has been researched at several facilities (Project Walk, Beyond Therapy, CSCIR, Kennedy Krieger) over the years and has been shown to increase function below the level of injury in many people with SCI. Is it a CURE? No, it isn't. Is it something that can help a lot of people in the interim? I, and many others, believe it is.

    If you want to pursue this discussion further I would suggest a post in the Exercise/Recovery forum, where I would be happy to debate.

    Studies to back up the above:

    http://www.ncbi.nlm.nih.gov/pubmed/18521094

    http://www.ncbi.nlm.nih.gov/pubmed/23433335

    http://www.ncbi.nlm.nih.gov/pubmed/19489091


    Eric Harness, CSCS
    Founder/President
    Neuro Ex, Inc
    Adaptive Performance and Neuro Recovery

  10. #20
    I am not so much critical of the modalities but rather on more research dollars. There are several modalities that are good for bone density/ circulation/ digestion. Gravity is our friend used properly. Sometimes we are guilty of tweaking research into a "new" study to no better theraputic end. I question regularly whether a trial or study actually moves the bar of outcomes. My personal bias is towards the best apparent use of the dollars. Since I believe any cellular intervention may be years away it does make sense to pursue health and wellness along with functional improvement.

    I have viewed the exoskeletons with some skepticism but can tell you the ten people using them here in trials fully embrace what they are doing for them.

    Quote Originally Posted by paolocipolla View Post
    Thank you for saying that!

    What is very discouraging IMO is that just you here on CC have been critical about this.
    I didn't want to be the first to question this spending considering how things went in a similar discussion last year..

    Where are the educated cure advocates/cure orgs? Afraid to talk about the elefant in the room? How can we expect a cure will happen if we stay silent about things that matter?
    What are you afraid of? That if we protest they won't cure us when/if a cure will happen?

    Some of my friends know I am talking about them

    Paolo

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