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Thread: Dystonia is the historical/current cause?

  1. #16
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    Quote Originally Posted by skevimc View Post
    The muscles are the only thing keeping any of us upright.
    What do you means for keeping upright?
    Once I asked to a surgeon the following question: imagine somebody sitting down in a straight position in a bench with her back touching the wall. If her neck would be tied (not so strong) to the wall, and he abruptly dies, her torso could not move to the front, neither to the sides. But it would not collapsed either, it’ll remains straight and not because the muscles of course. How could it be? He said me that without any doubt because the vertebrae bodies (vertebrae + disc), if they were not wedges. Unlike other surgeons I visited, he thought that much more important than muscles are the vertebrae bodies.
    ABR people says that internal organs, fascias, smooth muscles.. all of that they call the pneumatic skeleton are much more important than the spine and striated muscles.
    Really i don’t know what to think.
    Last edited by flerc; 05-08-2010 at 12:31 AM.

  2. #17
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    Quote Originally Posted by rohrer01 View Post
    My mother had four daughters and had us all walking around with stacks of books on our heads so that we would have good posture. I remember the sessions well. Needless to say, it did not prevent me from getting scoliosis, BUT my scoliosis is SO symmetrical that it went unnoticed.
    you walked upright, but your curve surely had more or less the same degrees when you did it. How much heavy could was that books?
    Itís a so difficult exercise and the Pysio said that my daughter donít do it rightly yet, but I see how her curve reduces degrees when she do it, but then increase again. She has a great flexibility so she can do it. Her muscles support her torso, but what could happens if also should to support about a 25% more of that weight, or a 30%?...40%..? If she does that exercise lifting more weight every day and stretching more her spine, what could happen?
    Ostheopats says that structure follow the functionÖ or something like that.
    If my work requires my body to be more strong and robust, surely that will be in same time. If all the day I do something that requires being taller, I cannot grow more, but if Iíd have scoliosis I could.
    Of course itís only an idea and I could not know if it could works..but in fact I could not be sure it could not.
    Anyway the Physio and my wife never allow me to prove it.

  3. #18
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    Quote Originally Posted by Dingo View Post
    A prevalence study of primary dystonia in eight European countries



    Like most genetic diseases that hit children and young people Primary (clinical) Dystonia is a rare condition. It appears to be caused by a mutated version of the gene called DYT1.

    Dystonias Caused by DYT1 Gene Mutation
    I have read that chd7 was identified as the first gene related with scoliosis, after they saw that Charge lead to scoliosis (and alteration of that gene was present in both). May be they have done some study like that with DYT1?

  4. #19
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    A similar alteration in cortical motor excitability to that
    found in patients with IS has been also described in patients
    with Parkinsonís disease [43, 44]. The incidence of scoliosis
    in Parkinson patients is higher than in the normal
    population varying from 33 to 90%
    ----------------------------------------------------------------------------------------------------
    I'm not surprised at all. I've always believed that scoli is a nervous system disorder. This material reminds me of all the info I read years ago when my father was dying from ALS.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #20
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    inflammation

    Really interesting thread.

    ... and to tie it all back together on another level.

    Parkinson's is a chronic inflammatory condition.
    Inflammation and Parkinson's disease

    According to Dr. Alain Moreau Scoliosis is also a chronic inflammatory condition. High levels of Osteopontin (a marker for inflammation) are found in children with AIS.
    METHOD OF DETERMINING RISK OF SCOLIOSIS
    Last edited by Dingo; 05-08-2010 at 10:24 AM.

  6. #21
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    Osteopontin and Parkinsons

    I just googled Osteopontin and Parkinson's and sure enough the two are connected. Here is one study out of many.

    Osteopontin is elevated in Parkinson's disease and its absence leads to reduced neurodegeneration in the MPTP model.

  7. #22
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    Quote Originally Posted by flerc View Post
    What do you means for keeping upright?
    Once I asked to a surgeon the following question: imagine somebody sitting down in a straight position in a bench with her back touching the wall. If her neck would be tied (not so strong) to the wall, and he abruptly dies, her torso could not move to the front, neither to the sides. But it would not collapsed either, itíll remains straight and not because the muscles of course. How could it be? He said me that without any doubt because the vertebrae bodies (vertebrae + disc), if they were not wedges. Unlike other surgeons I visited, he thought that much more important than muscles are the vertebrae bodies.
    ABR people says that internal organs, fascias, smooth muscles.. all of that they call the pneumatic skeleton are much more important than the spine and striated muscles.
    Really i donít know what to think.

    Interesting point. Indeed, all of the body works together. No doubt that the rib cage, internal organs, fascia and a few other things help in maintaining posture, although without muscles, I wouldn't say the posture is 'upright'. Ribs and organs, etc... act in a passive way. Meaning, they aren't actively maintaining posture except for being in the way, kind of like trying to touch your thumb to your arm. That's the kind of resistance ligaments, bones and cartilage offer. They won't do much if the force increases.

    I disagree with your doctor that the spine would be held straight. It wouldn't fall apart but it would most definitely bend and twist just like when you don't sit up straight in a chair. You slouch over and your spine bends. Keeping it tied to the wall would prevent some of that, but all that shows is how little effort it takes to maintain posture in a calm environment. Without muscles to keep the spine straight, the body would have to rely on being perfectly balanced, and even then it would still slouch quite a bit. If you move, then everything collapses. This is displayed in polio scoliosis and muscular dystrophies (among other musculoskeletal diseases). Those conditions cause horribly twisted and curved spines. If the vertebral bodies and discs were 'much more' important than muscles, this wouldn't happen.

    I know English is not your primary language so if something is not clear I can try to explain it differently. Are you using google translate? http://translate.google.com/#

  8. #23
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    one last google...

    In his patent Dr. Alain Moreau recommends a Selenium rich diet for children with AIS.

    [0024] In accordance with another aspect of the present invention, there is provided a method of preventing or reducing scoliosis comprising administering to a subject having scoliosis a therapeutically effective amount of an osteopontin inhibitor (OPN) or a selenium rich diet, whereby scoliosis is thereby prevented or treated.
    [00166] Selenium concentration was reported to be significantly decreased in plasma of AIS patients (42). Selenium and more specifically Se-methylselenocystein, an organoselenium naturally occurring in diet, are used to prevent metastasis in breast cancer as chemopreventive therapy by targeting OPN transcription (43-45).
    Interestingly enough scientists are doing research on Selenium and Parkinson's.
    Dose-dependent protective effect of selenium in rat model of Parkinson's disease: neurobehavioral and neurochemical evidences.
    Normal cellular metabolism produces oxidants that are neutralized within cells by antioxidant enzymes and other antioxidants. An imbalance between oxidant and antioxidant has been postulated to lead the degeneration of dopaminergic neurons in Parkinson's disease. In this study, we examined whether selenium, an antioxidant, can prevent or slowdown neuronal injury in a 6-hydroxydopamine (6-OHDA) model of Parkinsonism. Rats were pre-treated with sodium selenite (0.1, 0.2 and 0.3 mg/kg body weight) for 7 days. On day 8, 2 micro L 6-OHDA (12.5 micro g in 0.2% ascorbic acid in normal saline) was infused in the right striatum. Two weeks after 6-OHDA infusion, rats were tested for neurobehavioral activity, and were killed after 3 weeks of 6-OHDA infusion for the estimation of glutathione peroxidase, glutathione-S-transferase, glutathione reductase, glutathione content, lipid peroxidation, and dopamine and its metabolites. Selenium was found to be successful in upregulating the antioxidant status and lowering the dopamine loss, and functional recovery returned close to the baseline dose-dependently. This study revealed that selenium, which is an essential part of our diet, may be helpful in slowing down the progression of neurodegeneration in parkinsonism.

  9. #24
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    backwards

    A similar alteration in cortical motor excitability to that found in patients with IS has been also described in patients with Parkinson’s disease [43, 44]. The incidence of scoliosis in Parkinson patients is higher than in the normal population varying from 33 to 90%
    I'm not sure if this is necessarily true but looked at backwards could it be said that Parkinson's disease is higher among Scoliosis patients?

    Wasn't there a guy on here about a month ago who said he was just diagnosed with Parkinson's? I think he was a poster from scoliosis-support.
    Last edited by Dingo; 05-08-2010 at 01:19 PM.

  10. #25
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    The neuro direction

    "There is overwhelming evidence that the emergence of coordinated movements is intimately tied to both the growth of musculoskeletal system and to the development of brain. The neural development and learning cannot be considered outside of their biomechanical context. A key theoretical issue is how the changes in brain circuitry controlling muscles and joints become matched to simultaneously occurring developmental changes at the periphery."

    http://www.scoliosisjournal.com/content/4/1/24

    Overwhelming evidence is good enough for me.

    ---------------------------------------------------------------------------------------------------------------------------

    Its nice to know that SfN has grown through the years...and advancement will accelerate tremendously.

    Neuroscience research is pushing the envelope on one of science's last and most daunting frontiers ó the brain. This work holds great promise for understanding and treating stroke, schizophrenia, Alzheimer's disease and other illnesses.

    http://www.sfn.org/index.aspx?pagena...IsNeuroscience

    This is what I was leading into with my Lou Gehrigs thread, and scoliosis ties in.

    We need to have open minds, and go after all of it. We need an ARMY of scientists. I dont think we need to focus on Mars right now. LOL

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #26
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    Dingo

    It looks as if they are saying that 1/3rd to almost all Parkinson's patients have scoli.

    Seems like a broad number? You would think that they would know the exact number??????

    I donít remember anyone posting about having Parkinson's. But then again, its not easy to keep up with all these posts... Some posts take quite a bit of thought.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #27
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    Quote Originally Posted by flerc View Post
    you walked upright, but your curve surely had more or less the same degrees when you did it. How much heavy could was that books?
    Itís a so difficult exercise and the Pysio said that my daughter donít do it rightly yet, but I see how her curve reduces degrees when she do it, but then increase again. She has a great flexibility so she can do it. Her muscles support her torso, but what could happens if also should to support about a 25% more of that weight, or a 30%?...40%..? If she does that exercise lifting more weight every day and stretching more her spine, what could happen?
    Ostheopats says that structure follow the functionÖ or something like that.
    If my work requires my body to be more strong and robust, surely that will be in same time. If all the day I do something that requires being taller, I cannot grow more, but if Iíd have scoliosis I could.
    Of course itís only an idea and I could not know if it could works..but in fact I could not be sure it could not.
    Anyway the Physio and my wife never allow me to prove it.
    I was not diagnosed with AIS at the time of the exercises, so I don't know what effect, if any, it had on my curve. I also don't think the books were very heavy, as it was an exercise in balance, not strength.

    A thought posted by Scevimc about Schroth. I know you weren't promoting this, as you stated. But even though postural appearance is a complaint among many with scoliosis, my opinion is that postural training, such as I did as a child can be dangerous in scoliosis patients. The reason being is that a curve has developed, now you are telling the body to bend the other way creating a compensatory curve. Then if you start tilting the other way again, you "straighten" up. This may look cosmetically better, but in reality a person may be turning themselves into a living accordian. I do it out of habit and my curves have NOT gotten better. They have gotten worse. I still have some cosmetic issues. Other's don't see them and that's only because I am "balanced" and it is easier to hide with clothing. But I don't think the overall effect is very good. So for those of you out there reading this, please be careful. Looking balanced isn't everything.

    Here's another thing that I've been thinking about. When I learned that I had AIS, I was told that it was a musculoskeletal disorder. As I did more research, I tended to believe that it was more of a connective tissue disorder for the simple fact that both my daughter and I have floppy joints and there is a link between Marfan's and scoliosis. Now flerc brings up dystonia. When I first looked it up, my inclination was to say NO WAY. But now I am convinced that this has something to do with it. So here we are looking at a nervous system disorder, which isn't out of the question as I also have spina bifida occulta and so does my son. Who knows what topic is going to come up next that will also make perfect sense, and I'll be going yeah, yeah. So now, put them all together and the polygenic feature of the hereditary pattern of this disease is making more and more sense. It would explain everything from different hereditary patterns to different curve patterns, to severity and progression. This truly is a complex disorder. My ramblings for the moment... This is a very nice place to muse over these things. Perhaps something someone says here will have been of some value to a researcher who happened to take the time to read through these threads.

  13. #28
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    Quote Originally Posted by rohrer01 View Post
    Perhaps something someone says here will have been of some value to a researcher who happened to take the time to read through these threads.
    Perhaps. Our resident muscle doctor certainly seems to be fascinated by some off these posts.

    But I think we have to remember that researchers think about this stuff all the time. What is novel and clever to us is very likely reinventing the wheel or already disproven to them. Of course we can't say that 100% of the time but we can be confident it is happening virtually all the time.

    There is a reason why researchers are working on what they are working on and a reason why they aren't working on other things at this time. And that reason isn't likely to be that they simply haven't thought about it. This is what it means to have an expertise in something.

    ETA: It seems that for every thing that "our" muscle physiologist find fascinating, he has posted several more posts "edifying" folks on various topics. By that's just my impression and he can speak for himself.
    Last edited by Pooka1; 05-08-2010 at 04:07 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
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    Quote Originally Posted by Pooka1 View Post
    Perhaps. Our resident muscle doctor certainly seems to be fascinated by some off these posts.

    But I think we have to remember that researchers think about this stuff all the time. What is novel and clever to us is very likely reinventing the wheel or already disproven to them. Of course we can't say that 100% of the time but we can be confident it is happening virtually all the time.

    There is a reason why researchers are working on what they are working on and a reason why they aren't working on other things at this time. And that reason isn't likely to be that they simply haven't thought about it. This is what it means to have an expertise in something.
    I realize this is true most of the time. Sometimes we get stuck in a rut, whether we are researchers or housewives. Then someone may say or do something that gets us thinking "outside the box". I'm by no means a researcher, although I am completely fascinated by this stuff. From what I do know about research is that sometimes people can get so caught up in their own topic that it becomes consuming and the obvious may be sitting right there. Even the most educated person can be turned on to an idea. We can't all think of everything, no matter how much knowledge we may possess. I agree for us laymen, that putting all of these pieces together for us, probably is reinventing the wheel. But it all seems to be coming together, at least in my small mind. I have always been fascinated by how much responsibility and how much multitasking there is in research, thinking ahead 20 steps before making a decision, while you have a kazillion other things going on, including ones personal life. The minds of some of these people are just incredible. We've kind of been here before with the Odone's. I totally agree that the laymen out there aren't likely to contribute much, including me (I haven't thought of anything new, but flerc really impressed me this time). But, there are just some topics that have been brought up recently that are really good ones, unlike the go-nowhere arguments that have been so common lately. Besides, we don't know the education status of everyone on here... although it usually isn't that hard to figure out.

  15. #30
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    Quote Originally Posted by titaniumed View Post
    "We need to have open minds, and go after all of it. We need an ARMY of scientists. I dont think we need to focus on Mars right now. LOL

    Ed
    Exactly!!!

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