First post: my quest to cure cervical dystonia

Welcome to my blog about spasmodic torticollis! I have decided to start writing this blog for several reasons.

  • I have been diagnosed with cervical dystonia (CD), i.e., spasmodic torticollis (ST).
  • Little is known about this disorder, and I feel the need to gather information about it in one place.
  • Also, I want to understand what the disorder means, from different points of view, on different levels.
  • I think that any disorder, even so-called chronic ones, can be cured. And it should definitely be possible to cure cervical dystonia, since spontaneous remissions occur all the time!
  • I want to document my quest to cure myself (without botox and/or surgery), and I want to share it and interact with others around the globe who are somehow connected with this quest.

First things first. I’ll tell you a little about my history. Today it’s exactly one year ago that my ST symptoms really broke out. I was on a rather stressful business trip to Poland, when I noticed that I couldn’t hold my head straight. I had had neck pain and some involuntary twitching in my neck for several months, but I didn’t think much of it. A year earlier I had made a wrong move on the diving board in the swimming pool, causing my head to snap backwards. So up until then I just thought that incident had been responsible for the nagging pain. But in Poland it had become serious: when I walked, my head really completely turned to the left, with jerking movements.

When I came home from the stressful trip, the symptoms faded away somewhat, but soon came back and started to gradually become stronger. I consulted with my generalist and manual therapist, but they didn’t know what to think of it. I was feeling increasingly miserable. And after a long beach walk, where I actually had to hold my head with my hands to keep looking in front of me instead of way to the left, I was really worried and started a good Google search. 15 minutes later I had a Post-It note in front of me with two things written on it: “cervical dystonia” and “spasmodic torticollis”. I understood that both designations represented the same thing, and also that this was definitely what I had. A week later I saw a neurologist, who confirmed my fears. Subsequently, I had my blood checked and an MRI scan of my brain made. Nothing abnormal came out, so the official diagnosis was: primary spasmodic torticollis.

I was shocked. I saw my life falling apart. I could not go to the office anymore and had to work (limited hours) from home. Also, going to my beloved dojo for karate training was completely out of reach. I saw myself as a handicapped person. Fortunately, that phase didn’t last long. Looking at it from the bright side, I realized that my body was giving me a signal that something had gone wrong. So I became determined to understand the signal. I will get back at that later on.

The neurologist proposed a botox treatment. But I declined. I do not believe in fighting symptoms as a structural solution, especially not in case the active substance is poisonous as hell. To me, that is literally like shooting a messenger who has come to bring some (probably bad) news. Within my initial 15-minute Google search, I had also come across a website of a fellow ST patient, who had been able to master his symptoms without botox or surgery, living by the guidelines of a small American clinic. This inspired me a great deal.

Within weeks, I had booked a trip to the Spasmodic Torticollis Recovery Clinic in Santa Fe (see www.stclinic.com), led by Abigail Brown. I had been in touch with yet another fellow ST patient who had visited the clinic in 2006, and who had reached his state of “ongoing recovery” two years after that. His results and online testimonial video were very convincing and so I went to Santa Fe. At the clinic, I learned about specific stretching exercises, fitness exercises, massage techniques, diet restrictions, correct posture, correct sleeping position, and more. My quest could begin!

After getting back home in August, 2011, I started to seriously follow all the clinic’s guidelines; I did the daily exercising, found a great PT (whose wife also has ST!) nearby who was willing to help me with the massage, stopped drinking wine (that hurt), eating sugar, white bread and pasta, etc. And guess what? My symptoms got worse. At least in the beginning. It took months without seeing any noticeable improvement. I didn’t only have ST; ST had me. I had to hold my head with my hands all the time when I was up, I couldn’t eat with both hands, I could only work on my laptop when lying down on my back on the sofa. And still no wine. Moments of despair were frequent. It was no joke.

But, by December, 2011, things did start to change. Jerks and spasms became sparse, the position of my head became straighter, I was able to sit in a chair and work on my laptop, and I could do some simple tasks without having to hold my head. This was good!

Now, in April, 2012, I am doing much better. I can type this blog post without any spasms, with a straight head. I can sit in a meeting for hours. I can walk a few minutes without people looking at me, wondering about the strange head position and movements. People that do not know me and do not pay close attention, cannot tell that there is something going on with my neck. So I gained a lot with the approach from stclinic.com, and I owe Abigail for that! Also, I am sure that with time, my symptoms will further diminish until I reach the desired state of “ongoing recovery”.

However, the approach has its downsides. Exercising needs to be continued for the rest of one’s life. Same story with the diet. (O, my dear wine cellar!) And all shocks, either physical or psychological, need to be avoided, since they can trigger a strong and immediate return of the symptoms. (O, my dear karate dojo!)

Being an enthusiastic internaut, I have searched the net very thoroughly since the onset of my symptoms. And I found many interesting pieces of information on ST, which I will share on this blog. One of the most intriguing finds is the treatment approach based on TMJ alignment. Even before finding this information, I had already noticed that when I opened my mouth to the maximum, my ST vanished. To me it’s obvious: there definitely is a link between ST and the jaw. Most ST patients have a jaw imbalance (TMD) to some degree. I am no exception: both joints click loudly when I eat; they often produce a grinding noise, etc.

So I started an email conversation with Dr. Young-Jun Lee, who has a clinic in South-Korea, treating several chronic disorders – including ST – using his proprietary method, which he calls FCST. A core ingredient of the method is jaw alignment. But he also deploys traditional Korean healing methods. On YouTube, there are a couple of very convincing patient videos, showing his achievements with Korean ST patients. Dr. Lee has told me that his treatment yields definite, permanent results. So after successful treatment, there is no need for daily maintenance, except for normal, healthy living. Moreover, he confirmed to me that, once he says I am good to go, I will be able to safely enter wine cellars and karate dojos again!

Furthermore, he explains that he creates the boundary conditions for the body to heal, by re-establishing blocked pathways, but that the actual healing has to be done by the patients themselves. I strongly believe in this point of view.

So I am intrigued. I have never been in Korea. I do not speak Korean. But I like a challenge. And I like to give myself a chance to heal further. So I have decided to go there. I will have to stay there for weeks, or even months, depending on the actual speed of my recovery. I am now arranging the trip. My departure is scheduled for the 5th of May, 2012.

On this blog, I will post regular updates about this quest I have started…

 

PS:  for anyone who is interested, inquiries can be sent in English to Dr. Lee’s below email address

Young-Jun Lee, K.M.D. PhD, DMSc
Lee Young-Jun Korean Medicine Clinic
Founder of Lee’s Functional CerebroSpinal Therapy (FCST)
Professor at the Graduate School of Integrative Medicine,
College of Medicine, CHA University
Director of the Institute of TMJ Balancing Medicine
Director of the Refractory Disease Research Center
1616 Dujeong-dong, YongYam B/D 5F, Cheonan City, Chung-Nam, 330-210 South Korea
Phone: +82-41-552-0056/0057 Fax: +82-41-553-7708
Email: yjleejun@yahoo.co.kr
Website: http://www.fcst.co.kr
Information in English: http://kmhglobal.com/h/find_my_clinic/

81 thoughts on “First post: my quest to cure cervical dystonia

  1. Very good that you started this blog and that you are able again to write it! How horrible to hear that you, my friend from secondary school was diagnosed with this unknown disorder. I hope your efforts to go to South Korea will be rewarded with a cure. But I must say I find it very dearing of you (and it will cost some money too I assume). I just finished a documentary film on somebody with ALS, also known as the Lou Gheric disease. This is a neurologic phenomenon as well for which they didn’t find a cure yet and they don’t know well why people get it. Also people with ALS went to Asia for treatments that claimed to have the solution. I just want to say, trying is always possible but don’t expect miracles. Of course you want to do everything in order to make it go away, that I do understand, but it’s also good to realise that there are people who are abusing their position to earn money.

    • Thanks a lot for your comments! And also for your warning. But rest assured: Dr. Lee and I have had lengthy discussions and enormous threads of email correspondence. I was amazed at the amount of time he was willing to invest in providing me with answers and information. Alongside this, his background and credentials are excellent. Moreover, he has shown me that he is a compassionate man who, first and foremost, has the vocation to help others. Finally, CD/ST is a completely different type of disorder than ALS (which is lethal, as I understand it). So please send me all the positive vibes and faith that you can spare!!!

  2. Succes met de zoektocht naar een hopelijk definitieve oplossing. Ik bewonder je vasthoudendheid en doorzettingsvermogen en kijk er naar uit je weer als vanouds te zien trainen in de dojo. Daar drink ik graag een glas wijn met je op tegen die tijd.

  3. Es muy buena idea lo del blog.Yo tengo una distonia desde hace aproximadamente 7 años y ya he probado todas las medicinas Sólo me queda la cirugia y actualmente estoy probando con la medicina alternativa.Espero mantener el contacto y mucha suerte en tu viaje a Corea del Sur. Un abrazo

    • ¡Muchas gracias por tus comentarios! Estoy convencido de que tienes otras opciones. Hay que comprender cuál es el mensaje que el síntoma te da. A continuación podrás curarte… Durante las próximas semanas escribiré mas sobre esto. Seguramente mantendremos el contacto. Un abrazo de mi parte.

  4. Hey, I am the creator of the social anxiety/CD thread you posted on today. Is it true that there is a connection between the two disorders? No offense, but it seemed like you posted there just to advertise your blog.

    Funny thing though…I am a Korean, and I am going to Korea this June to get a botox injection. I would’ve tried botox a long time ago here in the U.S., but neurologists here either said I don’t have CD or charged too much for the treatment. I’m really hoping it works at least to some degree, because it utterly destroyed every aspect of my life.

    I’m not sure if I want to try Dr. Lee’s therapy. Unlike you, due to other health issues, I don’t have the energy or motivation to overcome CD through lifelong dedication to strict diet and exercise plans. Albeit risky, botox is what I will try first because it’s a traditional and more convenient approach.

    • Thanks for your comments! Yes, there definitely is a – even strong – link between social anxiety and CD. This has been researched and documented by several scientific groups. Their papers can be found online, but soon I will write about it on this blog. They do not explain why people with CD have social anxiety, they just find and report it. I think I know why this link exists and want to share it with the readers of this blog.
      And yes, I do want to advertise my blog and share and interact as much as I can, this way. I hope that’s alright with you ;-)
      I am very sorry to hear that your life is in pieces at this moment. To be honest, mine is too, to some extend. But I think that by deeply looking into ourselves, gaining a deep understanding of our symptoms, it will be possible to overcome them. So even though it is a struggle, I am sure that this symptom will bring me something good as well. I sincerly hope that you will follow this blog and will pick something up from it that brings you at least one step ahead. And please don’t underestimate yourself: you take initiative by participating in forums and weird blogs, by traveling to Korea, and you know what else. That is more than many CD patients will ever undertake.
      I wish you lots of luck with your personal quest!

    • I tried Botox years ago when it first came off the “experimental list”. It was excruciatingly painful, very expensive, uninsured and did not work, so I relied on a ciocktail of drugs and tried the ST clinic in Santa Fe along with faithful adherence to the exercises, etc. I learned there for a very long time, but eventually found myself unable to function well enough to work and went on disability. However,more recently, I have been getting my shots faithfully every 3 months for the last 5 or so years now that it is insured, more highly refined, and doctors are not using 9 inch nails to inject it. Once I had some mild difficulty swallowing that lasted a few weeks, but I would not hesitate to recommend Botox, along with supplemental medication if you are in really bad shape, as I was. Just make sure you have the right doc (s), and on’t be afraid to ask lots of questions and get 2nd and 3rd opinion!!!!

      • Hello Sue,

        Good to hear that you are happy with the results you are now able to achieve with Botox. Other people have told me the same thing: the technique is getting more refined and thus more effective.

        As you may have read on this blog, I am not interested in killing symptoms, but only in healing. I am near symptom free now, without any medication or Botox, in less than 3 years time. Other people who have visited this blog, who have accepted the root cause of their CD and who have dealt with it, have healed themselves as well.

        Good luck!

        CCD

        • I hope people find their “cures”. I belieev that may be possible for certain kinds of ST, but it depends a lot on wht caused it to begin with. Drug induced dystonia mostly disappears when the offending drug(s) are stopped. However, the cause of most kinds of ST re not known. I had several concussions in my tomboyish childhood. Could that have been it? I did I inherit it from my immigrant granfather, who died to young to manifest symtoms, and of whose family in Eastern Europe after WWI we know virtually nothing? I regard ST as a symptom of unknown medical causes, in most cases. That inckudes diseased /abnomal physical problems within the brain. That is not curable. I have been the whole nine yards, from Abby Brown’s Clinic, exercises, a holistic docto, chiropracty, meditation, self-hynosis, acupuncture, various types of massage therap and physical therapy, even surgery shotly after I was diagnosed to replace a destroyed disk in my neck with cadaver bone. I was assured that my dystonia was due to the disk. After a very short time, the surgeon became concerned that my twisting would pull the metal plate that was holding the cadaver bone in place and destroy his curgery. Obviously the offending disk was not the cause of my dystonia. I wish I could offord to have my genes tested. That might give me the answer.Good luvk with your “cure”, but I do not believe mine is curable, only mangeable, which my docs in Colorado for decades have helped me do quite well (just do not move to Kentucky if you have serious ST!!!!).

          • Hello Sue,

            Thanks for your quick reply. Alright, I will stay away from Kentucky, but for me that’s easy, living in Europe :-)

            The cause of all CD is (childhood) trauma. Please read the pages Phenomena and Perspectives of this blog. When asked, ALL visitors to this blog (eventually) confirm the whole picture and the root cause being childhood trauma.

            Most neurologists will tell you that the cause of CD is unknown. That is because they regard the human body as a machine, which they can engineer. When we look further than that, the whole thing becomes evident. Again, please read this blog.

            CD arises after a lifetime of suppressing pain and misery (caused by the trauma). Drug-induced CD is essentially the same thing: suppression of pain and misery, but pnly through meds instead of sheer willpower.

            Sure, your CD may have been caused by childhood trauma such as concussions. Do you remember how you got those concussions and how you have dealt with the situation right after the incident(s)? Yes, it can very well have been a physical injury leading to trauma. For other people it is predominantly psychological trauma, or sexual abuse.

            Yes, genes may play a role. But if you have the gene, it only says that you are susceptible. It doesn’t mean that you will get CD. When you have frail bones, you are more likely to break them, but breaking is not something that cannot be avoided. Again: the cause is trauma, not the genes.

            Trauma is stuck survival energy in the body. As the entire body is reflected in the brain, the physical consequences of the trauma can be found in the body as well as in the brain. So any abnormality in the brain is just a consequence of the trauma.

            Anything is curable. Neurologists know nothing about CD. Also, conventional medicine knows very little about disease causes and even less about healing. So when they claim that CD is incurable, that simply makes me laugh.

            I do admire you for everything you have tried to heal yourself. But allow me to be direct: you have only tried to ‘fix’ yourself with therapy and docs. That won’t help. True healing comes from within. I am convinced that the following will help: acknowledge the root cause of the problem, understand how you have lived your life in order to cope with the problem (rigid control, living in your head), decide that you will heal, work on the root cause (physical trauma therapy), change your way of living (from rigid control to free flow), love yourself. Then you will heal. Meanwhile, I have seen enough people with CD who have done this. And it works for me.

            Let me know if you want to discuss more.

            CCD

          • CCD–I appreciate your cincern and will read what you suggest. I Guess I forgot to mention that when I said I went the whole nine yards, I really did. I have been to several excellent psychotherapists, dealing with depression and agoraphobia before my ST diagnosis (Hormone treatment induced for treatment of endometriosis) which disappeared within days after stopping the hormones, and later in an effort to fix a failinf marriage which turned into far reaching long term psycholgical therapy which reached deap into my childhood (which was an unusually happy one, devoid of sexual or other psychic trauma) , hypnosis by the therapist, etc. Long story. That was before ST. Since ST, I have seen two other excellent therapists at two diffferent periods in my life (they are partners and bot recommended by my fabulous GP. who was open to alternative medicines and holistic approaches, not just the diagnose and prescribe the pills aproach, who first diagnosed me) for other reasons. I will read what you recommend, but in my case, I would bet the far on genetics. My concussions were caused by a pitched baseball in one case, and falling flat on the back of my head on hard ice in another. There were other such incidents that occurred in play—I really was a TOMBOY! One time I was with a group of kids playing “Tarzan”, swinging across a small gully on a natural vine “rope” that broke in mid-swing. The real trauma in that case was not so much a suspecteed minor concussion, for which I was sent to bed for several days (as I was with the other two) but the stitches taken in my bitten tongue as my Dad tightly held my hands to comfort me.(He had a hard time watching and nearly cried—at age 94 he remembers that well.
            I have always been very much into self examination as well as examining the world in which I live and its people, and how we interact, and I have been both self-examined and examined with the help of very competent and open minded others to an extent few people have. (At age 67 my personal/spiritual journey are far from over, but I daresay, I know myself far better than most people can claim). I am open to any other possibilitie, but I still don’t have the answer to my questions: if this man inKorea is so good, why is he not better known in the ST community, including among doctors and other carerakers, who often experience great frustraion at their inabiluty to help their patients more than they do, by any safe and available means? My former GP in Colorado would have wanted to know more about the man in Korea–she was that open—and encouraged me (often referred me) to try rather unorthodox methods of treament, which I did faithfully, sometimes with positive results, sometiime with no results. As she said, after 20+ years as my primary care physician. “Torticollis has changed your life, hasn’t it?”. She indertood how deeply, as well as how, something like this affects an individual, and sought to present me with any options possivle.

          • Hello Sue,

            Thanks for all your comments!

            Right, the depression and phobia are consistent with childhood trauma, experienced by most people prior to onset of CD.

            Good that you did a lot of psychotherapy. I did that as well. It helps to understand some things, mentally. But I have learned that it is really ineffective to resolve anything, especially trauma. This is being recognized more and more nowadays: body-oriented trauma therapy is the way to go, since the trauma is stored in the body. Body-oriented therapies like Somatic Experiencing, Brain Spotting, TRE, Shaking Medicine, and Presence Process are effective therapies to resolve trauma.

            Wow, the concussions you suffered sound serious. This can definitely have caused trauma. Trauma occurs when we are unable to fight or flee: the body then freezes. If the generated survival energy isn’t released afterwards, we have a trauma. (Also see the page Perspectives.) In our world, most physical injuries aren’t dealt with in the right way: often we are not being comforted (although your dad did this at least once!), and we are not allowed or are ashamed to shake and cry (i.e., to release survival energy).

            Good to know that you are open to new ways and possibilities. I will challenge you a bit more in my following replies to you.

            As for Dr. Lee in Korea, he is ignored in the West, because western medicine doesn’t believe that CD can be cured. So he must be a fraud. It’s as simple as that. But I have been there, and I have seen enough people – with my own eyes – who got completely healed, from CD and Parkinson’s. Did your former GP contact him?

            I understand that you have tried several unorthodox treatments. But between the lines I think I can read that you were expecting these treatments to fix you. It is a typical pitfall for people with CD to look for a fix. That is because most of us are INTJ, so we are used to rationally plan every step of our lives, trying to control everything. This is a way of living that we learned, and that fits our character, in order to cope with the consequences of trauma. I call this rigid control.

            Again: there is no external treatment or doc who can fix CD. Healing has to come from within. From the Treatments page of this blog, you can see that people have healed themselves, applying various methods and therapies. The specific treatments they chose is not so relevant – as long as it feels good to them – but the commonality is their attitude towards healing. That is crucial. They took their symptoms seriously, accepted them, tried to learn from them, and decided they would heal themselves.

            CCD

          • For me:
            1. Understand the root cause of CD: childhood trauma.
            2. Work on slowly releasing the trauma (somatic experiencing, presence process, etc.).
            3. Reduce rigid control. Enhance self love.
            4. Help the body “externally”, adding balance through exercise, stretching, and healthy food.

          • Thank you for your reply… I agree with the trauma theory completely. However, I also suffer from bad TMJ in my left jaw since I was a teenager (over 30 years now) and it’s also clear to me there is a connection between my TMJ and what’s going on in my left neck muscles (TS). Case in point, I got a temporary orthotic from a dentist (a type of splint that separates the teeth to relieve pressure on the jaw), and just wearing it for a few hours caused my left neck muscles to pull. I don’t know if that’s a bad or good thing in the long-run, but it’s clear that my jaw is connected to the TS. Oh yeah, the dentist also said that TMJ problems go hand-in-hand with breathing problems. He is a big proponent of the Buteyko breathing method, which is supposed to help quite a bit with anxiety. Seems it’s all connected somehow. But I am not clear if I should pursue getting a proper orthotic (which can cost thousands of dollars) at this point. However, it seems that orthotics can relieve some cases of TS, as well as other movement disorders by allowing the jaw to reset itself over time and relieve pressure on the trigeminal nerve.

          • Hi Kate,

            Yes, CD is often accompanied by TMJ issues and other spinal problems. These are all symptoms of inbalance due to trauma. Insufficient breathing is just another symptom of trauma. Being disconnected from our bodies, which are so full of blocked survival energy, breathing gets hard by default. It is just another way of our bodies to show us that we are stuck, out of flow.

            An orthotic can be helpful, as it adds balance to the body. But it’s not much more than that. If you do stretching and exercise, pelvic balancing, TMJ exercises, etc., eat healthy food, drink a lot of water, that will help just as well or even better, but without the high cost. But beware of one thing here: adding balance to the body generally does NOT provoke release of trauma. So it’s no cure. In order to cure yourself, you need to release the accumulated trauma from your body.

            Take care.

            CCD

        • Hi CCD, thanks for your reply. Just FYI for anyone reading, there is an alternative to expensive dental orthotics called the Aqualizer.

          http://www.aqualizer.com/html/dental-instructions.html#aqualizer-size-selection

          But I do agree that trauma is probably the root cause in my case. I had a lot of trauma growing up, and later in life. What do you think of “clarity breathwork”? It’s connected breathing, like in the Presence Process, but you do it in groups.

          • Good find!

            Breathwork is always good! It helps to reconnect to the body and to release the trauma. And doing it in groups might give it added value. It’s up to you.

  5. Very best of luck, as a long term sufferer of ST I will follow your blog with great interest and may be following you to Korea!

    • Thank you very much! And please do share your further thoughts and comments as the content of this blog grows!

    • I want to know more about this doctor in Korea. EXACTLY what does his treatment consist of? I woould like to hear from anyone who undergone his “cure”, successfully or not. I always question such things. If he is so successful, why are his methods not more widely known and used? If he indeed has a cure, he should be getting the highedt recognition within the ST community with lots of very positive stories about both cures and oither caretaker adopting his methods. Why is it necessary to go all the way to Korea? Why is are ther not trained practioners in at least every mar medical center in the world? Why no such thing at the Cleveland or Mayo Clinics? Forgive my skepticism, but I tend to be very wary of people who claim to have the answer to anything and yet pretty much keep it to themselves. If it works for someone, great, but it strikes me as almost “faith healing”, perhaps a placebo effect, perhaps cures only types of ST cause by certain things. Again, I want to hear from anyone with experience with this healer, positive and negative.

        • I have re-read Phenomena and Perspectives, and while interesting, I find it them to not be very enlightening. In the one case, one could be reading one’s horoscope:: it is too general in that some items apply, some do not. In the ohter article involving childhood trauma, later trauma, little things such as what causes a patient to turn one way or another for example, suppresion of anger, desire to please, rigidity of mind and mindset, therefore of body, etc. to be entirely implausable. These are theories from people, who, as far as I can tell, do NOT have ST and are not very familiar with the medical aspects of it, and furthermore, have known few if any ST patients, at least certainly not on the level they purport to analyze the psyches of such. If this helps you, more power to you, but in my investigations of ST and oither dystonias, decades ago patients were NOT recognized as having a legitimate physical disease, but acrually were sent to psychiatrists. It was in fact an enormous breakthrough when doctors began to realize that there was an actual medical reason for ST. I was diagnosed just as this was happening. It was the reason that no treatments of consequence were available nor were they insured in the rare case that a doctor tried a medical treatment. Self-healing is a marvelous concept, and certainly a positive, open attitude is very helpful with treatment of any disease, but ST and other dystonias would be far more common, I would logically think, if “childhood trauma”, repression of anger, etc. were the “bottom line” in these conditions. In short, I do not buy it. Good luck in Korea. Please keep us up to date. But again, how many of us can possibly afford to visit this Korean guru who has not, apparently, shared his wisdom with my very wise, open-minded, compassionate GP of more than 25 years in Boulder, Colorado? Or the pretty good guy in Nicholasville, Kentucky?

          • Hello Sue,

            Well, I have been to Korea in 2012. You can read all the posts I wrote about that episode on this blog. As you will see, I didn’t come back cured. My symptoms had become worse. And that made me understand that I had tried to heal myself with rigid control, the way of life which had made me ill in the first place. In hindsight, thinking about the people I saw there who were cured, they had one thing in common: they didn’t put any pressure on themselves, they avoided rigid control, facing life as it comes, in flow, they were very loving and caring toward themselves. And of course: they believed that they could heal and they had decided that they would heal themselves.

            Dr. Lee emphasized one thing, which I find deeply true: he would support the healing process, he would support continuous alignment of the spinal structure, but the patient would have to heal him/herself. Because he understood this, he was able to support people to actually heal themselves. The specific alignment techniques he used could just as well have been replaced by other treatments. The important thing is that he challenged people to believe in their own healing and to take it in their own hands.

            As for the pages Phenomena and Perspectives, these are not theories from other people. I wrote those pages. On the Phenomena page, I summarized all common characteristics of people with CD. I did quite a lot of research for that. The corresponding papers can be found in the Documents section.

            Then I continued to make sense of the phenomena, by looking at them from different perspectives, which I wrote on the page bearing the same name. If you read both pages carefully, you will see many corresponding pieces of information. The phenomena that were found, are very consistent with childhood trauma. Another striking thing is the fact that CD occurs in women twice as often as in men (which isn’t understood by western medicine). I could link this to trauma, because women are traumatized twice as often as men, for obvious reasons. Etc.

            You are right that the information on those pages is general, and cannot always apply 100% to each person with CD. But the core of the message is very clear. If you read all the comments on this blog, you will find that so many people are stunned when taking that information in, because they recognize this to be deeply true for them. So if you don’t want to ‘buy it’, that’s fine. I am not selling. Only trying to help and to make people more aware. And if anyone doesn’t want to listen to what I say and underpin, that is entirely up to them ;-)

            From the way you write, I suspect that you think of disease in a rather materialist and deterministic way. You still believe that there is a ‘medical/genetic’ reason for your CD. I can understand that you considered that perspective as a breakthrough at the time, but I am convinced that this view is incorrect. To understand a bit more about that statement, I can also recommend you to read my post Remission Revisited on this blog.

            In general, I recommend you to read more of this blog. You are a rational person (probably INTJ), but you tend to jump to conclusions. On the page Perspectives, I explain that people with childhood trauma AND a certain, rare, personality type (MBTI: INTJ) are likely to develop CD. That also explains why CD isn’t more common than it is.

            Take care!

            CCD

        • Yes, if you search the comments on this blog, you will find that several people found medical marihuana helpful. Also, there is a section on marihuana on the Treatments page of this blog.

          • I favor the legalization of medical marijuana, and indeed voted for its legalization when I lived in Colorado. And I am glad that it is available to those whom it helps. However, since it has not been available for doctors, Physical and psycho therapists and other caretakers to prescribe, few know how to prescribe it most effectively at the moment—a crying shame. People who use it goo to a doctor who gives a cursory “exam” and writes the RX. This will not be your long time family doctor in most cases, the one who really knows you and your condition. Self medication has long been common for obvious reason. But, hey, it’s progress!!!

          • My depression and phobia (and I would add, serious, nearly crippling lower back pain) came from 9 month of taking a powerful female hormone meant to fool my body into thinking it was pregant. During that time I experienced no menstrual periods. The aim was to allow my body to absorb the abnormally located endometrial tissue that clogged my Fallopian tubes and made pregancy difficult. The symptoms took a few months to fully manifest, but shortly after quitting the hormone treatment, I found myself in my psycho therapist’s office wondering why I was there. Childhood trauma had nothing to do with my symptoms, and the hotmones, everything to do with it. The depression and phobia had totally vanished, as had the lower back pain, within a week!!!! The treatment, however, was only partially successful, and the endometriosis was very real, as evidenced by later surgery to remove it.
            I cannot write to you by email since you use an address that is “no reply”.

      • On Youtube you can find many videos posted by Dr. Lee, showing CD patients before and after treatment/healing. You can read all the details of his treatment in the posts on this blog. But as I already wrote to you: the specific physical treatment is not the reason for his success. So you are right: there is no need to go to Korea to heal yourself – provided you accept a few things about your CD, about yourself and about healing. And yes, faith healing and placebo are closely related to the actual healing process (of any disease). See my post Remission Revisited.

        The fact that there is no similar clinic in our part of the world, is due to skepticism. Too bad.

        There are no different types of CD. It’s all the same thing: repression of pain and misery caused by (childhood) trauma.

        • Abigail Brown’s clinic exists, but I have often wondered why there are not more like hers if it is so effective. As I mentioned, I went to Santa Fe with high hopes and an open mind. This was early on after my diagnosis. (incidentally, my former long tome GP is great believer of the power of one to heal oneself in many instances, as am I. That is the reason she referred me to several types of healers, niot closing off any one approach. But she diagnosed me in a rather serendipitous way, having just read an article about ST in a MEDICAL journal the night before I went to see her about my increasingly twisted and painful neck). I can make my diease worse by my attitude toward it, but I make it better by owning it. Still, that will not cure it. I do not need to go to Korea to learn about rigidity, let alone anger or childhood trauma. Those can lead to many “diseases” and afflictions that are not clinically physical in origin, but can cause physical afflictions. I do “own” my ST. Whenever I go to a new hairdresser, I explain it to her, just in case my head begins to turn one way when she asks me to turn the other. I am able to speak in public without self-consciousness, because I undertand that the ST comes with the total package that is me. My psychotherapists have all been made aware of my ST by me. Two (the two partners) approached their art in a very spiritual way, my own predilection, BTW, in my search for the truth of life–quite the endless journey– though I refuse to be defined by any one classification, since I believe, actually know from long experience in not only self-examination, but in my working life that has been by definition, people oriented, that it is strictly impossible impossible. Childhood trauma? A conveniennt catch all…….Again, if that were the case, ST would be far more common. My life’s work included working with many suffering from true childhood trauma, which I could see in real time .

        • I simply cannot accept boiling down the cause of all ST to one cause—childhood trauma—which is not at all boiled down, but a rather broad spectrum of experiences itself.. None of us escapes a certain amount of trauma, childhood and otherwise. BTW,
          I took that Jungian personality test and I am an INFP (?), though I have serious doubts about such tests—he answers were essentially on-off, yes-no, 01. Part of my graduate training in counseling (my masters degree, after earning a bachelors degree in religious studies in a state—not church-run university, a major I chose since the study of religion included so much of the study of the human experience from anthropology to zoology, literally A to Z. My professors and instructors were both religiuonists and scientists, as if there were that much difference between them :-)) was in testing and statistics. The best of my education, however, came from “hands-on”, direct interaction, with people in various psycho/social groups, one on one interaction with individuals from very young children (truly abused and neglected) through the elderly, from very high functioning to the virtually helpless and dying. My volunteer work before I ever got a paying job working with people was invaluable.It very much entailed acceptance of people as real and not objects to be studied and examined, and in them oneself is mirrored to a greater or lesser degree, always. Childhood trauma was there, but not a thing I saw as a mirror of myself. I am still am still at a loss what you mean by such an broad classification. I saw plenty of trauma, great and small, but only one case of dystonia, generalized, in a homeless person, that was incredibly tragic and extremely painful to watch. There was at the time no way to aid her.

  6. Wat een akelig verhaal. Ik hoop dat je in Korea de oplossing vindt voor je probleem.
    In het verre Oosten staat de totaal benadering van mensen meer centraal en dat
    lijkt mij in de meeste gevallen veruit het beste.
    De dojo zou je er echt in moeten zien te houden,alles wat je volle interesse heeft
    werkt helend!
    Al mijn goede gedachten zijn met jou, veel succes, goede reis en beterschap.
    Cons

  7. I too have cd and gad. I am now receiving botox treatments , which are about 50 %helpful. At least with this treatment I can function and work. However, my social life has diminished due to embarrassment. I still have noticeable tremors. I am very interested in following others with this rare disorder. Thanks for the opportunity to do this.

    • I sympathize with you. The social-anxiety part of cd/st is a commonality. I think we have to learn to accept ourselves the way we are. Not only with the symptoms, but as a whole person. Or more specific: once we can see who we really are, including the symptoms and their meaning, we will be able to become a whole person again, and the symptoms will dissolve into us. That may sound vague, but I will elaborate in the coming weeks. Now I am working against the clock to get everything prepared for my trip… Take care and stay in touch!

      • Social anxiety is one of the areas a person can help him/herself a great deal once you have accepted that your problem is real and nothing to be ashamed of. It is not contagious (I joke about that to people, which puts them at ease) and I am dealing with it in all the ways I can try. ST can lead to depression, as can any chronic disease, so it is important to recognize how this condition may affect you and acceot it, than do what you can about it. I have been very lucky in having lived most of my life in a place where there is a great range of help—no one size fits all approaches, When I go to a new hairdresser or dentist, I immediately explain to them that my head might not turn the way they would prefer. It is more difficult now that I have left that place (hopefully temporarily) because people here are more closed and not as well broadly informed and educated about ST, even the medical community, and to a shocking degree, the semi- and non-medical caregiver community.. However, that does not stop me. It takes courage, some chuttzpah, but do not be embarrassed. Explain why your head turns or shakes. You are not suffering from the DT’s, but from a very real condition!!! It is rare. Make that known to people you deal with, but do not accept pity. Ask only for acceptance. It does not affect you mental capacity or even your social capacity when it comes right down to it There are ways to deal with it.. You can find ways to attend a movie comfortably, for example. I go at times when the theater is nearly empty, such as a matinee, take a pillow, lean way down into my seat to rest my head comfortably against the pillow scrunched up against the back of the seat, and take off my shoes and lift my legs over the empty seat in front of me. If I am with someone who does not know what I am doing or why, I explain it to them. Easy? No, of course not, at least not at first. Just remember that your ST is not your fault and you have nothing to apologize for, and it will get easier, I promise. The more open you are, the easier it will become, and less anxiety ridden.

    • Thank you very much!!! That’s the kind of comment I like! Feel free to do so more often ;-) And I hope you will somehow benefit from my quest as well.

  8. It is such a pain while reading this piece of log. I’m totally shocked! I don’t know what to say to my dear friend, how can this happened. My family are praying for you, it is bettle time again, and as always, you will win. You will find a way to come back and we are waiting for you and your family visit us again in near future.

    • Thank you so much for your friendship and support. I deeply appreciate it. Tomorrow I’ll be gone. But I’ll be back!

  9. Hallo CCD!
    Leider ist mein Englisch nicht so gut, das Lesen der Kommentare ist schwierig.
    Ich wünsche Dir alles Gute, und der Glaube versetzt ja angeblich Berge.
    Ich habe mir ein paar Videos über die Behandlung der Patienten angesehen,
    der Arzt hat eine geradezu beschwörende Stimme, als wollte er das Durcheinander im Gehirn damit austreiben.
    Ich bin sehr gespannt auf Deine weiteren Berichte!
    Liebe Grüße,
    Tyroxx

    • Du kannst die Kommentare auf Englisch einfach übersetzen bei translate.google.com (kopieren und einfügen)! Und ich hoffe, du hast gesehen daß mein Blog mit Übersetzungsmenü kommt (auch von Google Translate).
      Schön was du sagst über seine Stimme; die fand ich auch sofort sehr symphatisch und kraftvoll! Und der Glaube ist in der Tat sehr wichtig bei dieser Sache. Ich glaube sogar daß wir mit unserem Bewußtsein unsere Wirklichkeit komplett schaffen. Das heißt also, wir sollten auch fähig sein uns selbst wieder gesund zu schaffen… Ich werde noch darüber berichten. Liebe Grüße aus Moskau, wo ich auf dem Flug nach Seoul warte!

  10. It sounds like you’ve done lots of searching on the internet – just wondered if you’d gone to this address: http://www.erinelster.com/ConditionsDetail.aspx?ConditionID=27
    You mentioned your head had snapped back after a dive, so I wondered if the type of work Erin is doing with the cervical spine might be relevant. I was interested in her therapy as I was in a couple of rear end collisions in cars, and the timing did coincide with my onset of CD symptoms. But I estimated it would cost me around $10,000 to $15,000 for three months of her treatment including travel from Australia and accommodation. So I haven’t rushed into it yet! Actually I just went to her website and saw she is having a holiday until 2013 so there’s no rush to follow up her therapy anyway. I will look forward to following your journey and am very interested in the work on the jaw as I also have a very misaligned jaw. Thanks for sharing all your experiences.

    • Well, she must be making a good living then, with that kind of holidays! But yes, what she is doing, is very relevant, I think. Dr. Lee also emphasizes balancing the upper vertebrae, in order to re-establish proper brain-body communication. He uses different methods though. I will get back at that soon. And I will talk more about the link trauma – CD/ST.
      I have arrived in Korea today, I have met Dr. Lee, and we already have made a start. I am exhausted now due to lack of sleep on the plane, but a first Korean post will soon appear on this blog. Thanks for your feedback!

    • Dear “interested with cd”

      since you live in Australia I believe there are many upper cervical spine specialists there. No need to travel all the way to America to recieve treatment.
      here is a link to a website with a directory for these types of
      chiropractors across the world.
      http://www.upcspine.com/
      i believe the fellow who created the site is from Australia.
      I am seeing one of these chiropractors in Arizona he is called an “Atlas orthogonist” chiro. this procedure is done with a percussion instrument that uses soundwaves to adjust the atlas. there are many you tube videos on this.
      It is not curing me, I now think it is because my jaw is misaligned and this is the missing link. But it would be worth it for you to try.

  11. Via een link op fb heb ik net je blog gelezen. Goh, dat is niet niks wat je zo ineens overkomt… hoe confronterend moet het zijn wanneer je lichaam niet meer functioneert zoals je gewend bent, met alle consequenties die het met zich meebrengt…. Ik deel je visie dat lichaam en geest nauw verbonden zijn, en bewonder je zoektocht om deze relatie beter te doorgronden. Ik wens je moed en kracht toe. Misschien heb je gelegenheid om yoga/meditatie in je genezingsproces te integreren. En ja, ‘who knows, bitter pills may have blessed effects’…

    • Dank je voor je medeleven, goede wensen en advies. Ja, meditatie maakt zeker onderdeel uit van mijn genezingsproces en moet het misschien nog wel veel meer gaan doen in het kader van positief denken! Poeh, ik heb er mijn handen vol aan ;-)

  12. I am terrified at the cost of treatments since you need so many to get well.
    I will be communicating with Dr. Lee soon. But wondering if you could shed some light on this issue.
    in the you tube videos it looks like ordinary middle class Koreans are affording his treatments but they may have health insurance.

    Hoping that this clinic doesn’t have higher prices for Westerners, thinking that we are all rich which is hardly the case.
    I will probably have to do Abigails program to become well enough to work again and try to save to be able to go to Korea.
    I guess I was a little shocked when I saw the $300.00 just for a consultation.
    Most practitioners in the US do not charge for consultations but of course I don’t know what this all entails.
    If you would rather me just ask the clinic these questions I’ll understand.

    Nice to see your feeling a little better today, and you are able to enjoy walking/ hiking again!!

    • Well, the treatment is not cheap. The clinic is famous here and they seem to have no trouble getting enough patients. Not surprising, considering the results they achieve. But you will have to get in touch with Dr. Lee for the specifics. I know that the fees have just been amended. Based on your personal situation and needs, the clinic will offer specific package deals. Also, there are discounts if you allow the clinic to use your patient video to be put online (face blurred).

  13. Tomorrow I am invited at a little mother’s day celebration at play school from my daughter. She is so excited and I am so proude to have such a lovely and kind little mouse. It should be such a happy moment…. But these are the moments which are difficult for me to handle. But I’m a big girl, I am strong, intelligent and I will be very sexy oh yes!!!!!!! Ok I will try, life will go on (I’m scarred)
    good evening to all

    • I can totally relate to what you are saying. Such events are not my cup of tea either. But you can do it. Kick ass!!!

    • Yes I appreciate that. And I understand that you want to you use this blog to attract clients. Too bad you choose not to reply to any of my questions online. I did not create this blog for others to simply post their commercial information without discussing about the contents!

      • But I did post answers to your questions when you asked them. If they were not on the internet, it is because of governmental regulations when making health claims on the internet. That is why I ask those interested to visit my website and then call me with questions.

        • I was not asking you to make health claims! I was asking you the following.

          – What does your coaching consist of? Instructions on when to take the supplements, and how much? Or is there more? Could you elaborate on this?
          – Can you provide a report of your study? And which particular instructions weren’t followed by the participants? It all sounds mysterious…
          – Blepharospasm is not the same as CD. I may be wrong, but I think CD is more complex. What is your experience with CD patients? How many of them have you helped and to what extent?
          – And I ask again: could you get us in touch with CD patients you have helped?

          There should be no problem with the FDA whatsoever if you would answer those questions. Or are you unable to make true and fair statements? In that case I can understand your reluctance.
          (“A health claim is one that describes a relationship between the dietary supplement, or ingredient, and a health condition or a reduced risk of disease, according to the FDA. A manufacturer, when introducing the product, can only make claims that are supported by evidence and are not untrue or unfair.”)

          • Thank you, CCD, for questioning Steve about his priogram so closel. I went to a doctor who claimed to be holistic in his approach and baoughta small foretune’s worth of “natural” food supplement, his own line of products, of course. This was after he had had my hair and fingernail samples sent to a lab to search for nutritional imbalances, heavy metals, endocrinal, etc. Since I am a faithful and natural lover of the basic Mediterranean diet, and am very aware and careful of where my food comes from, I was shocked when he “prescribed” hundred of $$$ worth of his supplements. They certainly did me no harm (except in the pocketbook), but I was required to sign a one year contract with him, to begin with. He never physically exained me—only filled out endless questionnaires and had the analyses done. His “nurse”/receptionist yook the hair and fingnail samples. Be wary of such “hands off” treatments!

          • Hello Sue,

            Yes, I totally agree with you! Such people think they can reach a large group of patients with their business model. They are hoping to earn a lot with generic meds and offline analyses. That won’t work, because rather sooner than later people won’t buy it anymore.

            CCD

          • People such as the “holistic doctor” I encountered, I have realized since, make their names by word of mouth, very often, or by way of a local celebrity whom people trust, as in my case. Their motivations are monetary. Beware……

  14. Hi,
    I am happy to have found you. I developed CD this year, and it’s been very upsetting, so sharing your journey brings me some encouragement.

  15. Dear all
    I suffer from tmj, very severely. I also have developed muscledystony on my neck.
    It us terribly frightening and painful!
    I would go anywhere to get help, even to south korea.i hope dr lee can really help his patients.
    I will look at the utube videos
    Good luck to you all!
    Hopefully we will all one day feel healthy again!
    Hope

    • Hello Hope,

      Welcome to this blog! There is no need to go to Korea to improve yourself. Even if you start doing the long-distance program of STRC, simply at home, that will help you. If you believe it, you can and will feel healthy again! I am feeling so much better than I did 2 years ago at the outbreak of CD. So, Hope, it is good to hope. And even better than hope is belief!

      After going through this site, let us know what you think. Make sure that you also read the sections Phenomena and Perspectives!

      CCD

  16. hi, i always hear about good spasms which leads to recovery or bad spasms. Can anybody help me to understand what that means.

    • Hi,
      good spasms are from stretching the muscle which can increase a spasm but it leads to recovery, bad spasm is from eating sugar, drinking alcohol or bad posturing, all of which would make a spasm worse.
      does that make sense?

  17. Thank you so much for the fast reply :) I went to Santa Fe a few weeks ago, doing my stretching and exercises but the eating part ….. not good. I am not overweight and eat healthy but no day goes without a treat. I am German …. spelling might be wrong at times ;). So are you totally cured now???? I hope your doing

  18. hi from germany to germany, sybilles.

    wow, you went to santa fe. do you would like to share the experiences there with me in more detail?

    regarding eating, I never gave up eating and drinking all I want. I think I have the same nice results as ccd within a year. I think change eating only will work if you really believe in it. if it is a struggle for you it won´t work.

    I also think there are no good or bad spasms. spasms go up the more your deepest nervous system is activated and go down the more it is relaxed. that´s all.

    for me, the main key is to find inner peace! and this not only for a short time.. reducing stress as often it can be. changing the things in life what brought cd to start teaching you that something was wrong before. sure, doing exercises is also a key to re-educate as cd is also a kind of a stupid habituation for the brain-body communication.

  19. If it is possible, my trauma began before I was even born. One of my parents became enraged when I was conceived and vowed to hate me forever. As strange as it seems now, they ignored me and refused to speak to me even as they related to and played with my 4 siblings. I actually have no memory of any gesture of affection from them from the time I was born until I moved to Europe at 18. Do any of you think that extreme anger, hatred and neglect from a parent could contribute to me developing CD? At age 3, I took a fall of ten or more feet onto concrete and injured my head and neck so, I had very painful stiff necks throughout childhood. Of course I have no way to know if it had anything to do with the rage of a parent..who always appeared to be angry to me. I didn’t find out why they hated me until I was in my 20’s but even then they blamed me for their alcoholism and never apologized. Anyway by then, they hated me for many other things! I don’t really see an Eastern chakra connection to this but, I have an interest in the field of epigenetics, sort of about ‘inheriting the sins’ of the parent. By that I mean, our parents carry biologic markers within them from their experiences and convey those mutated genes of DNA and RNA to their children. This effect would be in addition to the insults and injuries we accumulate genetically. I also believe in the healing effects of forgiveness. And I have personally benefited from the relief that brings. It must have a positive effect on the health our bodies. There are also some studies in Germany that suggest that severe losses in our life do contribute to diseases like cancer. One researcher even claims to predict who will get breast cancer with a specificity of left or right breast, when a mother experiences the loss of a husband or child. nd, I do wonder what truths about things like this will be revealed in the years to come.

    • Hi Maureen,

      What a terrible history of hardship and trauma. Yes, it seems to me that you have been traumatized even before birth. I am sorry to hear all this. But again, it confirms that you should work on your trauma in order to heal yourself.

      I do not believe much in the influence of DNA physically passed on to a child. We are all able to change our own DNA. Did you read this page?
      http://curecervicaldystonia.com/remission-revisited-2/
      It might help to see your world from another perspective.

      And yes, fortunately, finally, there are some medical researchers that are trying to link disease to our mental state of being instead of to mechanical, external factors.

      Take care!

      CCD

      • I’ve read some blogs you have posted in regard to Dystonia. I was diagnosed 2 years ago after having twitching toes for 10 years now. It’s getting worse. I’m 31, single with 3 kids. U can only imagine the stress that it puts on me being in fear. I’ve realized fear and anxiety makes it worse. My feet take on twisting positions and hold there. It doesn’t help that I have worked in a nursing home for 10 years and have recently realized that a lady who is in pitiful shape actually has dystonia as well. She can’t speak, open her eyes, eat, etc. As u can hear in my tone…. I’m tired & stressed….also scared. Yet, I realize the affects are diseasing me worse. I have a strong feeling my dystonia could be related to a (gift) or (nightmare) I should say. I’ve had (out of body experiences) since I was 12 years old. Not provoked, I absolutely hate it, but I have an experience at least 2 times a week. The way u spoke in your blog makes me know for sure that u are very aware of one self. Now, I too am as well but implementing this mind frame in the physical is quite difficult. I would like to talk to u about the charging system of our body. When I have a out of body experience and I return to the body…. I feel every nerve in my body reconnect and I have electrical shocks from head to toe. I am a Christian and do believe in Jesus so do not think I’m some freak. These experiences are real…. and if someone can open their mind to hear what I say….maybe they can make sense of things that I don’t understand. I do believe that my experiences can be the cause of my dystonia. The constant shift from there to here is not good. I cannot stop it from happening but I can describe the parts of our human body that is charged by the soul itself. I can describe it, but I cannot understand it. Please message me if ur interested in talking. This is the 1st time I’ve ever reached out to anyone in this regard.

  20. Thanks. The change of perspective that helped me most was to comb through the earliest traumatic memories that effected me most as an adult (shame, fear, rejection, etc.) I then forgave each persons one by one who affected me through those experiences, whether they meant to our not. Forgiveness is something not often practiced and little discussed in our society. But, it is powerful and something that could even change global problems if practiced by all parties. Still, although this released an deep emotional healing for me and continues to help me whenever I have a resurgence of any of those feelings, I can’t say it restored my physical health in any specific, measurable ways. I believe accumulated suffering of all kinds, reduce our reserve of stress hormones, which leaves us more vulnerable to inherited genetic mutations and diseases. In my case, it resulted in lengthy bouts of chronic pain and their close cousin, Dystonia. In these case the most effective treatments I have found that reduce the symptoms came through reducing my toxic load though avoiding common food intolerances and supporting my nutrition, through juicing. Because of that, these days, I am experiencing a near-remission of Dystonia symptoms. I am thinking these nutritional changes speed-up my sluggish stress-response to everyday insults to my body. The hormonal stress response becomes exceedingly slow when the central nervous system is hyperactive. This has been found to happen to the vagal nerve fibers in chronic pain syndromes. And, anything we do to help resolve that hyperactivity should help resolve the spasms and chronic pain.

  21. Which is better going to South Korea or Santa Fe. I am from India. Suffering from focal segmetal dystonia. which includes cervical dystonia and unwanted movement of hands. Kindly reply. And which is cost effective with quicker results.

    • it is very difficult to answer. I have not been to South Korea. I think there are a lot of obstacles to that unless you live there and can pursue that treatment in a relaxed manner over many months. Sante Fe you can do at home and costs very little. I will tell you if you are working full time it will be difficult to get better using Abigail’s method unless you have someone who is helping you and will handle all of life’s other problems for you. You need to be able to devote your time , energy and relaxation toward getting better. I was making progress and working full time but then I had other health problems and problems with my home and yard and everything piled up on me and I could not get it all done. I am in the process of deciding if I can afford to go on disability for a couple years to try and get better.

  22. Hi,

    How are you doing?
    I liked reading your site. I had cervical dystonia from august 2012 till october 2014. It was a long struggle with lots of different kind of therapies even psychotherapy, and this last one helped me the most. When i began accepting my disease and understanding the signal my body was trying to send me, my neck became straight again and the pain went away. I would do it all over again knowing i gain so much out of it. I found myself thanks to this disorder. And thank God, there exists diseases and disorders. They are second opportunities of life to choose to live and think differently to have a happy and fulfilling life. What i did to heal is; accepting what is, letting go of the past, forgive and love myself and others unconditionally.

    Enjoy life to the fullest!

    Kind regards,

    Lina

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