Interim score

I decided to go back home. My financial situation urgently needs to be taken care of and I need to see my family. My flight is this coming Friday. It’s a strange feeling. After having been here so long, it will also be hard to say goodbye to the people I have come to appreciate so much, who have looked after me with so much dedication.

As for healing, my battle is undecided at this stage. I may come back here soon to finish what I started. It depends on how I can resolve things back home, and on my evaluation of the result of the treatment so far. I currently have more symptoms, but these may stem from some unavoidable stress due to my financial situation. And from stress due to the fact that I now have to accept that I’m not healed within the two months that I had secretly thought and hoped to be enough. After I come home, I’ll need some time to assess where I stand.

Several things are already sure though. I have seen much healing around me. I have experienced profound changes within myself. I have gained new insights. I have felt very connected to many people, in the clinic, back home, and via this blog. I have sensed intense power, gratitude and love.

To be continued.

197 thoughts on “Interim score

  1. Dear ccd,
    I never had the courage to ask you which time limit you gave yourself. When I saw your rates go down again I was sure that you will soon reach your limit. That is completely normal that this causes stress feelings, and stress feelings are poison for CD. Everytime when somebody told me “no problem, everything will be good, we can help you”; and after several weeks there was no help, I always felt worse than before. Hope is good but too much hope when it fails is very very painful. That’s why I stopped during several years looking for help, I had to protect myself.

    But I think Dr Lee is completely different, you saw what he can do, and you saw what you can do. But the distance, and financial situation are giant stressfactors, undependant from you and from him. Dr Lee and you woke me up from my “Dornröschenschlaf” (long long sleep) I am sure you will heal. 8 weeks are just not time enough. Step by step. Your family and friends will be there for you and will give you power. Stay positive.

    Good wishes from Luxembourg

    • Dear Amelia,

      Thank you so much for your continued peptalk and positive vibes! Yes, prolonged stress is poisonous for anyone, and especially for us. 8 weeks just isn’t enough for me. Dr. Lee said to me today that he had hoped it would be enough, since I had so few symptoms when I arrived here. But now he sees that I react to the treatment in a similar way as the other patients. Alles mit der Ruhe also!

      I’ll be in touch! And we’ll get there, all of us!

        • Hello Steve, alright, I have accepted your comment, though it is clear that you have a commercial purpose. Actually, I had already put information about your claim on this blog many months ago. (See the section Treatments of this blog.)

          Since we are all sharing information on this blog, I would like to ask you to share some information as well.

          – Although – for obvious reasons – it is not indicated on your site, the natural substance that you claim has helped you master your dystonia is: blue-green algae from Lake Klamath. Also, it seems that you recommend some additional supporting supplements – probably to make your approach more exclusive and harder to copy. I read this in some testimonials that you have meanwhile taken off the internet.
          My question is: for cervical-dystonia patients, how long does it usually take to notice an effect? How big is this effect? And what is the required dosage of the algae for them?

          – On your website, you say “I had a study at Johns Hopkins Medical Center in Baltimore, MD. and it proved my claims of safety and efficacy.” Could you please elaborate? What kind of study was this? And what were the findings? Do you have a report of this study?

          – Finally, it would be highly appreciated if you could get us in touch with a couple of CD patients who have benefited from the algae. Could you please invite them to leave their story on this blog?

          Looking forward to your replies!

          • First I am thankful for my post being allowed even though I am selling a product. If a sufferer were to find something that provided relief, would anyone care if that sufferer decided to help everyone by, not only selling it, but also coaching and supporting those who wish the help? That is my motivation once receiving the relief 17 1/2 years ago. I made this discovery and wish to share it with all sufferers. As for posting more information on the internet, the government has specific regulations regarding the making of health claims and so I ask those interested to call me. As for the study I had at Johns Hopkins, which ended in 2004, the results did not turn out to be overwhelming because my instructions were not followed. I thought it would help none of the participants but I was pleasantly surprised to find out it helped 4 out of 24. Had my instructions been followed there would have been a more impressive outcome but I had no control over that. As for the time it takes to receive relief and the amount of what is needed, the answer is always the same. Since we are all different, it takes some longer than others if their bodies are to respond at all. As well, the amounts needed will also differ for the same reason. The main need is for the body to respond as in taking anything for relief. I am devoting my time and efforts to help stop the suffering and am heartened by the many who realize my sincere thoughts and passion to help. If I was not truthful about all that I say and do, I would deserve critisizm but since I am truly passionate to help provide relief, I welcome everyone to call me with their questions and hope to help many more than I already have. Thank you.
            Steve Zarren

          • Thanks for your reply! But you are not giving us a lot here. With the limited amount of information that you have provided, personally I do not feel tempted to contact you. Actually, I have bought the blue-green algae in Europe a few months ago and I am just taking them on my own initiative. I guess other people would do the same, unless you can tell something more interesting. For your information: elsewhere on this blog you can find comments from a man from Barcelona, named Jordi. He has developed his own method to cure CD. He has also started his own practice in Barcelona. Yet he is providing detailed explanations regarding his method on this blog. He gives people free advice and tailored recommendations! He also engages in discussions regarding the content. Now that adds to his credibility!

            So, let me ask you =>

            – 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?

          • Hi CCD,

            Could you tell us what results you have had with the blue-green algae? Sorry if you have already posted this elsewhere and I missed it.

            Leigh

          • Hi Leigh,
            I have not posted anything about it. And it’s hard to say what the impact is. I have improved since I started taking the algae, but was that due to the STRC program, Xi Gong, the Law of Attraction, or the algae, or…? Or a combination of those? Anyway, I think it is safe to say that you won’t get worse when taking the algae. So why not give it a try? (Or get in touch with Steve Zarren; see elsewhere on this blog. He refuses to answer my questions online, but promises to do so by phone.)
            Take care!

          • If you wish anwers to your questions, please go to my website and call me after reading the almost 40 sufferers I have helped on my testimonial link. 2nd link on the left side.

  2. dear ccd,

    i am not so happy that your improvement is getting down but this really could be an impact of financial situation and beeing so far from home. as mentioned, it is not so important where you are, healing is possible everywhere. i am so proud of you as you did the korea trip. you will take lots of experiences from korea back home. and a main thing is that you have seen with your own eyes that healing is possible. so please tell me you will not give up!

    if you like, i will share with you the programm that i did in germany. i have made so much progress within 4 weeks and it is not so money intensive..! so add me on skype for the details if you like: myfight_on_skype

    your blog gave me so much assurance and i would be appreciated giving a little bit back.

    in every case..all the best!

    cheers

    • Dear Myfight,

      Thank you so much for your kind words. Don’t worry about me. I’ll be alright. It’s just not my time, yet.

      And I do not give up!!!

      As you say, I have seen healing with my own eyes. I have also felt it! After feeling deep gratitude and love I had no symptoms. This is key.

      I very much appreciate your proposal. I will surely add you on Skype and try to get in touch with you next week when I’m home. Anyway, I would like to speak with you. And to see your face and hear your voice.

      Are you back home already?

      Take care!

      • ok, you are welcome ccd,
        see and hear us on skype..
        have a good time and get back home nice and safety

        cheers

    • Hallo myfight,
      ich wäre sehr daran interessiert, mehr über Deine Therapie zu lesen.
      Habe schon alles mögliche ausprobiert an Methoden für Torticollis spasmodicus zuzüglich zu den Botox-Spritzen, aber alles bringt nur wenig oder kurzfristig Besserung.
      Habe leider kein skype, vllt. kannst Du mir eine email schreiben? eft4life@arcor.de
      Herzlichen Dank im voraus.

      • hallo obsidian,

        habe versucht eine e-mail zu senden doch es konnte nicht zugestellt werden. ist die adresse denn richtig?

        • Hallo myfight,
          nett von Dir, dass Du mir antworten wolltest. Die email Adresse ist richtig, ich habe die Benachrichtigung über Deine Antwort ja auch an diese Adresse erhalten.
          Versuch es doch bitte nochmals. Danke.
          Sollte es wieder nicht klappen, melde Dich bitte, ich gebe Dir dann eine andere mail addy (die schreibe ich halt nicht so gerne öffentlich)
          LG, Obsidian

          • Hallo Obsidian,

            ich habe auch schon sehr viel versucht. Botox half bei mir nur sehr bedingt weil ich schnell Antikörper bilde. Ich habe jetzt mit der Methode von STRC angefangen und war sehr erstaunt wie schnell das bei mir wirkt (Ok ich bin nicht gerade aber die Schmerzen sind viel geringer und mein Physiotherapeut hat mir gestern gesagt dass meine Haltung besser ist und der Gesichtsausdruck entspannter (ist ja schon was nach 2 Wochen) ;)
            wünsche viel Mut und schönes Wochenende

  3. I am so sorry……. if you decide to go back to Korea at a later date, will you loose the progress that you have already made with the jaw alignment?
    Something I have wanted to bring up for a long time but I also have not had the courage…….Is I am wondering about the effectiveness of Dr. Lee’s upper cervical adjusting.
    I could be completely off base here, and I hope I am. I researched upper cervical adjusting a lot before I decided to get treated. And according to everything i read, it needs to be very precise, something that a hand adjustment cannot achieve. X-rays need to be taken and numbers need to be configured in order to adjust at the right point behind the ear. Any miscalculation can make the situation worse. If you search Atlas Orthoganol on you tube, you may find this interesting.
    As I have said I could be completely wrong, but if I am not, since your jaw is fixed, you may now heal by going to someone who does more precision work with the c1 and c2?
    Recently I have found many cases of dystonia healed by upper cervical treatments alone. I read a case history of someone who took a whole year before symptoms went away. i will be continuing upper cervical care later also.
    We have the STRC program in the mean time, we know it works, especially for people like us who are determined and will not give up. We can again live an almost normal life, yes there are activities that we can no longer do, but we can find replacement activities that will be just as satisfying.
    Also Myfight has a program that sounds very positive.
    You are still very fortunate that your structure has been healed and now you can continue to move forward.
    Will you be taking this blog down…..I hope not.
    We need to all stay positive, because we can heal, it just takes a lot of time.

    • Don’t be sorry. As I said before, I was silly to think that I could heal myself within the framework of a project. But I will heal! And so will you.

      I won’t loose the progress if I go home now, as long as I keep wearing the TBA regularly. The TBA stabilizes and furthers healing results.

      Don’t worry about his upper cervical adjusting. Dr. Lee can assess imnbalance in the TMJ when increasing the bite by only one thin piece of paper. He can also do cervical adjusting with high accuracy, even if it looks rough. He is a healer and he is accurate in what he does. There really is no need for sophisticated, external tools. Human beings have such very fine senses. If well developed they do a better job than such apparatus. The best proof for that is the long list of healings in Dr. Lee’s clinic.

      Dr. Lee maintains that my structure has improved very very much, and that I will soon reap the benefits of that, once I get home and relax. What I am experiencing now, he says, is due to stress, as well as healing crisis. I have had a lot of treatments in a short period of time, and my body has undergone a lot of change. This also causes some fightback, he says.

      And finally: I will definitely not take this blog down. My quest is still ongoing, and so is yours! I’ll keep in touch.

      • I am so happy to detect such a positive attitude in you today.
        I am also happy to hear that you won’t loose the progress you have already made, and you can continue to heal wearing the TBA.
        What you have said about Dr. lee and his c1 adjusting has reassured me. Yes, humans can develop very fine senses. When I was reading about the old school Osteopath that could detect with his bare hands a very minute misalignment in the cranial bones and then with a very gentle touch move it back into place.
        Yes, you are under too much stress and pressure there and it is a good idea to return home now, so you can achieve that profound internal relaxation required for a healing.
        A funny thought come to me last night. That floating in water will fix a bodies structure. The bones will naturally move into place, floating weightlessly. Today I am going to try to figure out a way to float with my jaw also immersed in the water. This will be challenging because my head cannot be arched back, and I will still need to breathe. I thought of a snorkel but then that would tighten the jaw and would not work.
        Anyway this might sound silly, but I am going to try!

        • Hello sunflowersprout

          Just a word to the oldschool osteopaths, when I was at University we often had horses (with a very high financial value) and their we had sometimes as a special guest such an osteopath. It was always very interesting to watch him working. He passed his hand at the back of his patients and always (nearly always) found the right place; big cracks and crocks and the problem was resolved. That is a special gift.

          Snorkling is a good idea, last summer I did it a lot in Italy (here we go again ;) ) It did not replace my bones but it really gave me a good relaxing sensation.

          Here in one wellness center are salt water floating containers, I often thought about trying it (but the problem is that you float on the back and I don’t know if it will relax my neck or if spasms will get worse.

          • My lower back was bothering me after I started the STRC stretching. Then after I started floating in a pool with a noodle (flotation device) my lower back stopped bothering me. I think if you relax in water it can move bones. Snorkeling is not really relaxing, it takes a lot of work.

            I have heard of those salt water floating containers, for us we cannot arch our head back, so it may not be good.

        • Interesting experiments you are doing! That is swell. This blog is becoming kind of a cutting-edge test ground. I love it.

          • I agree, let’s just share our findings as much as possible!

            Interesting video. Nice woman as well! New experiment for you? ;-)

  4. I respect your decision and I think it’s a good time to see your family and also see how your symptoms will be back home. Too much stresses and pressures are no good, but I think unless we put ourselves in some stressed situations in real life, it’s hard to determine if we certainly healed from CD. I think that it will be better for your body to give some break from FCST treatments for a several months and go back there later if needed again. Please allow me to reiterate but the body needs some time to adjust and heal for changes, especially for adults after 30 or 40. It seems your body have made big changes inside out for the short period of time, so give yourself time! Otherwise, it can cause another overuse of willpower that we have discussed. Some took for a year at FCST with nearly 200 treatments (if I’m not wrong) and others took two years with STSC until recovery, didn’t they? I think you mentioned that you’ve taken up to 5 or 6 treatments a day at the beginning at FCST- how many treatments have you taken recently each day and how many in total so far?
    I’m glad to know that you found a lot of benefits and meaningfulness from your journey of healing. As I see you through this blog, you have the right attitude towards life and people so you do deserve healing.
    It’s been great knowing you and other people in this blog in exchanging thoughts and information. Stay in touch and keep us posted!

    • Yes, you are right! Dr. Lee today suggested that I had many treatments and changes within a short period of time, and that I am experiencing fightback now. That could very well be the case. He expects that I will soon improve drastically. The more fightback I have now, the better it gets afterwards. Anway, we’ll know soon enough. And I will indeed give myself the time.

      Yes, 400 treatments FCST in 2 years, or 2 years with STRC may be required for recovery.
      The past few days I have had a couple of deviations again, but the week prior to that I had very few deviations. Several days without deviation was no exception. I think that in total, I’ve had about 125 treatments now. I’ll check with Dr. Lee.

      Thank you very much for your kind words. And this blog will continue. My quest is alive!

      Take care.

      • The more changes in body, the more fight-back or healing crisis; the more fight-back, the better in recovery in the future – these all make sense to me.
        Some thoughts just came up – one of the reasons of the more symptoms or fight-back may be because we get increased awareness and changed perception about the posture and movement, so we have higher expectations of normalcy to our body. Before working on recovery, we had misconception about our posture – the “feels right” or comfortable posture was in fact a corrupt posture (the neck jutting forward, pelvises twisted, etc.). So as we recognize what is right and work towards it, we may also feel more symptoms despite the improvements – does this make sense?

        If you have no symptoms when your mind is filled with love and gratitude, all what you need may be to relax since these positive thoughts make our body relaxed. I hope meeting with your family back home and financial security will help with it.
        Best wishes.

        • I agree with you Dolphin that our higher expectations make the symptoms feel stronger, even though there are little improvements that happen.

          Ginger has not called me yet…..this is cruel :(
          But a good sign, she forgets what it is like!!

        • hi dolphin,

          i agree, movements are a key to resolve cd as bad movements in the past are saved in the brain. for a full recover we have to overthink the all-day movements as well. the key will be finding the middle again and again to ovetwrite brain card. this also causes a muscle harmony of both body halfs which is needed. cheers

          • sunflowersprout – Thanks for the update – I think she will eventually call you. No worries about my questions if you and her have little time when talk. For her, we are like beginners at the STRC program so as time passes by we’ll have more ‘advanced’ questions. Above all, we are learning much more in here ;)

            myfight – Yes, we need to unlearn poor posture/movements and release muscular tension (important), and then relearn right movements from scratch like infants do (they have perfect balance) until the brain memorize the right patterns – I acknowledge that the process will take time after decades of our body use and we need to repeat again and again as you mentioned.
            Nice to have buddies in this blog who are working on the same goal that needs perseverance!

        • Thank you so much for thinking along with me! To be honest, I’m still slightly confused now and want to wait a while, let the whole treatment sink in to see what is has brought me. Perhaps you’re right about the increased awareness and changed perception. In any case, I do believe that chronic disease will be healed with a temporary increase of symptoms. (Healing crisis.) I just don’t know what is happening to me personally at this stage. Time will tell!
          I agree with the relaxation. Relaxation allows flow, creates room for emotions to be felt, something we have such a hard time with…
          I’ll be in touch!
          My best regards from Moscow!

          • CCD, good to know you are alive and well in Moscow, on your way home.

            I personally think what is happening to you is a mixture of a healing crisis and Stress all at the same time.
            It is exciting to know you can continue healing with the TBA on your own.

            It is only a matter of time and relaxation, maybe more SE.

          • Dear Sunflowersprout, possibly you’re right. I’ll ponder on it some more and get back to you and the blog sometime soon. I definitely need relaxation right now, so forgive me if I haven’t been that active here. Today I had another session of SE, which was good. I hope you are still going strong on the STRC program. Take care!

          • No worries, we all know what your going through. You need time for yourself.
            Yes still going strong, no given up for me.

            until later, take care!

    • hi, at todays mirro training two times i had a mysterious feeling. it was like a shower over my hole body..two times like a “dejavu” during those seconds my hole body was so straight and i really feeled the middle. it was that cd want to flow away. i had this old body feeling of straightness without concentrating of beeing straight before cd occured. it was crazy but only for seconds..;)

      did everyone else had such feeling too?

      cd will go out of my life, its just a matter of time. i can feel it.

      • Hi myfight (I like this funny nickname :)) – I haven’t had such a dramatic moment, at least yet, but I’m getting better little by little, too. No longer so many CD symptoms at home as far as I move slowly, and I’m pretty straight (thanks to exercises) when I’m just standing or sitting still without much effort, but commuting (by subway) and work (in a polluted big city), i.e., stress, are dragging me down from CD recovery. Yes, I totally agree that it’s a matter of time. Cheers!

  5. Dat is mooi balen. Ik hoop dat wanneer de stress weg is het lijf en geest weer ruimte krijgt voor verder herstel. Succes met de reis, geniet van het weerzien van de familie. Laat maar weten wanneer er tijd is voor een date. Groet

    • Ach, alles heeft een geldige reden, denk ik maar! Ik ben niet verslagen, verre van!
      Er komt heus een dag dat ik weer met je train in de dojo!
      Ik meld me!

  6. hi everyone,

    yesterday something embarrassing happened to me. I went to an outdoor exposition (horses, machines…..) with my husband and kids. Lots of people…. stress, felt spasms but it was OK, I managed it.

    And than something unexpected happened, there came a man and a woman, and the woman had TS, but in a very very important way. I think primary CD was TS, but her whole body was involved and she had great problems walking. I can not even imagine what a physical and mental force she needed to walk there.

    I have been looking out for so long to see to talk with somebody who has TS. at this blog there is no problem to do it, but there face to face I just couldn’t find my words, I just felt en enormous compassion and sadness and I felt helpless. I was sad for her but I think that deep inside of me I was scared, I was scared to see how huge TS can be, what if my problem once will get so important. I can carrie my actual situation but what would my famillie be if I would suffer as much as that…..Normally I have no problem with positive thinking, it’s my nature to be positive, but yesterday…..

    I hope that I will see her again, and than I will perhaps be able to take her hand and talk, to show her that there can be a way, that it can be better.

    • From what you’re saying, I think that that woman has torsion dystonia or generalized dystonia. You will never get that, since you developed CD at a later age, and then it will always remain a focal dystonia. Don’t worry!

    • CCD is right Amelia, don’t worry, it will stay the same for us.
      I also realize the need to exercise FAITH, I am truly beginning to understand what this word means, and it feels good to have faith in the higher power.

      When you think about it, we are lucky because there are ways out of our situation, we can be normal again, where as most illnesses, that is not possible. Not only can we be normal again we can also be very healthy, more healthy than other people because we have to be.
      Abigail from STRC is 73 years old. Most people her age are on many medications. She is on none, because she has a healthy lifestyle. Because of the stretching/exercise she is very strong, I have seen and felt her strength, she is also super flexible. She put me to shame when I was stretching with her, and I am 28 years younger. So in the end she has prevented other serious disease, by remaining diligent about her health.

      So I try to see the positive sides of our situation. I also try to see the blessings in it, this illness has transformed me spiritually, it has awakened me from a sound sleep, and this is very good!

      Amelia I wanted to tell you my experience with the Sheperds Crook. I bought one locally at a health food store for $25.00, USD. I like it a lot. It allows me to be more self sufficient, so now I can “bodo” my entire back with it, this is not necessarily a pleasant feeling, but I know in the long run it will help loosen the muscle. it also works great for the shoulder area, easier than the small bodo tool, it really digs in to that fleshy part of our shoulder area. I highly recommend it!

      • Hello,
        thank you a lot for your feedback from the shepherds Crook. I will look if I can find it here in Luxembourg or Germany. I use now my kneading finger massager (I bought one in a local discounter for 30 dollars several monthes ago, Ok it’s not the high tec version but it really do a good job, for his price)

        I also think that CD can help us to become better people. We have to analyse our life, to think about the signification of the signs. I try to find a positive feeling in everything I do or see, and I try to transmit this to my children.I think we have that in common with people who had a dangerous illness and got a second chance.

        I didn’t know that Abigail is 73, she is really an important personality.

        • hi amelia,

          please do not loose power on finding cd healing as only a mental or body issue. it´s both. read and checked something here and all around the world. it is my business (at work) shooting up difficult issues. best way is ogten to take a process of elimination. so let summarize the facts again. found out that cd patients has have a lot of mental stress before cd comes out. but other people (more then of us have this, too..). psyichiatrist has try to resolve cd without success thats a fact. so it should not be “only” a mental issue. on the other side this can´t be “only” a body issue as physiotherapists have also tried to resolve cd. there isn´t a 100% key to resolve this. for my opionion the body issue is the first as I recognized there are so much “bad movements” of people which are in a stress situation. you can watch this – people hang one´head, take finger on face if they are down or thinking. and they have a movement which is against the nature.

          so this all means it is both, mental and body (ccd also tells body and mind are a company..)

          it is the normal human beeing getting doubt if something is wrong, but i think there is more then one key and only one can not repair cd. i have seen healing people and all of them changed life profountly (overchecked the whole individual situation, straighted up body and mind) both is needful.

          this is no critic, just to remember, we have to find the middle of body and mind again and it should be individual!

          as you can take from this blog, everyone is different but all have the same, searching for something..it would be great everybody here will find his own solution..there is no panacea. for me, i will go on my own programm of straight up body and slow down mental weight of expactation.

          the day will come, i will come out to be resolved, it is only a matter of time. our wit is stronger as this devil inside us. and this shit devil is so strong, as it is a part of us and adapts inside..

          never giving up, feel and believe of the progress and doing on this hard programm to get resolved, this is yours myfight my fellow sufferers..

          cheers, cd changing destiny (both mental and body ;-)

          • just another quick questions:

            1. do you feel also can not relax in different -or one of it – movements (like e.g. in sitting, laying down or something else)
            2. do you feel you are someone special and feel inside that there is a reaseon that occors cd
            3. do you have pain in special movements, like getting movement to the direction which
            get´s “hard” as of cd.

            this is only to gather more about cd. only the details will find out the truth.

            learnend that most of cd patients are not open enuogh to share this, but this id OK. :-)
            (not here as it sems)

            cheers

          • Answers from my side.

            1. Especially walking is the most difficult for me. I cannot relax when I walk.
            2. Yes, I feel I am special. But I also feel that everyone else and anything else in our universe is special ;-) And 100% sure there is a reason for becoming ill. There is a reason for everything. I know that we live in a (western) world where life is seen as a random event, with a sauce of the law of the jungle, without any specific meaning or purpose, with chains of chemical reactions, with coincidence only, etc. I strongly disagree with this cold, mechanic view, as it contradicts everything I feel and see around me. (Also see my comment to Carrie last week, regarding some features of quantum physics.)
            3. Yes, I sometimes have pain in my neck, but it’s not always in the same spot and I cannot tell there is a clear relation with a certain movement.

            Please let us know why you are asking these specific things. You are making me curious.

          • Hi Myfight,

            I don’t mind sharing.

            The only time I can feel relaxed is if I am lying down.
            I do not feel relaxed when I am sitting, standing or walking, this is the problem, this is what makes it really hard to live with.
            I was at the STRC clinic in New Mexico. Abigail the woman who developed the exercise program. She has been recovered for 30 years now, through the stretch/exercise and she is relaxed like normal. She can sit, walk, stand completely relaxed. She had cd really bad so if she can do it, so can we.

            I don’t know if I feel special, I do tend to feel guilty. I feel like my stress caused it. So I am get mad at myself for it.

            I am lucky so, far I don’t have any pain.

          • myfight – here is my answers to your questions:
            1. I feel very relaxed when I’m lying down; somewhat relaxed while I’m sitting or standing still (little CD symptoms); tension on my neck starts when I’m walking, or even right before walking or moving (thinking makes the action), and also sometimes when I’m talking.
            2. Many people said I’m very hardworking (at work and school), so now I take it that I was excessively so and lost balance in my life, and CD gave me a message to slow down and rethink about my life.
            3. I don’t have physical pains, but sometimes mental pains when I feel embarrassed with the CD symptoms in public or at work (trying to not think much about it, though)
            Cheers.

          • Myflight, here are my responses to your questions.
            1. I am most relaxed when sitting with back/head support and when lying down. The worst for me is swallowing, talking, walking in that order.
            2. I do feel there is a reason CD happened to me and am on the journey to figure out what that is, although I have already identified many reasons to be grateful for it. It has brought me a lot of suffering, but also a lot of new perspectives on life.
            3. I have most pain when tilting neck to the side (ear to shoulder), when stretching neck to the side and back simultaneously. When just sitting/standing/walking/talking with a static neck, there is no pain, only tension.

  7. Hello CCD,
    I hope you have a safe journey home. You have got started in healing and you will certanly continue when you get home. I was so relieved when I understood that you mean to continue writing this blog. It has ment so much to me. Reading about you and all the others here gave me new energy to start working on and thinking of new ways to recover again and, touch wood, I am really doing well at the moment. I say at the moment because I don’t know what will happen when I start working again after the summerholidays. The things I have done lately are: reading the wabi sabi book – and trying to think in that way; put a 1 mm sole in my right shoe (I turn my head to the right),( thank you Amelia), and when I go swimming in the morning stand on rock for a while. Apparently some of this has been good for me. When standing on rock with bare feet I think of the energy in earth. It may sound strange but I have read a book called “Earthing”, which I can recommend. I wanted to share my experiences in case it could help someone else. When you speak of childhood trauma I thought of Marion Rosen therapy. I have tryed that earlier and when the therapist pressed muscles on my back, I saw things from my childhood. Very interesting and a bit scary. I also went to a Feldenkrais therapist and the sessions always ended with me lying down and her putting pillows all around my body. Under my right hip and shoulder she put some extra pillows to sort of build up. Well, I wish you all the best!

    • Great to know that you are doing so well! I will look up Earthing and Marion Rosen Therapy. Feldenkrais is known to be effective for CD (not for everyone though; some people find it too subtle).
      When I get back home, I will add a section on healing. It is known that people were healed from CD by doing Somatic Experiencing, a trauma therapy developed by Peter Levine.
      Thanks very much for your involvement and contributions so far!
      Enjoy they rest of your holidays and keep in touch!!!

  8. Hi,
    stupid little idea. My head turns to the left, my watch was always on the left arm. Now I changed it to the wright. So I will always have to look on the wright, and watching watch gets a reflex ;) . Watch recondition. Does anybody agree ;)
    Have a nice day all of you.
    So I will ran to work

  9. Hallo myfight

    1) after 6 months CD my symptoms were more important as they are now, especially when I was standing or walking, or sitting without contact on my back, when I was lying or sitting in a sofa with back contact I could relax and even turn my head to the left and the right. I felt no pain.

    2) now 12 years later ; I think that my symptoms has become less important. But I can never relax, not in lying, sitting, standing position. That’s very difficult and makes me tyred. I have to concentrate really very very intensiv and think at the muscle I want to relax then it can be possible during short moments especially while car driving. At the beginning I felt no pain, now I often feel pain, pain stops when I fix my head (as I have a lot of imagination I developped a lot of systems to fix my head (with scarfs, my own hairs….)

    If I feel different or special? No! The others are just not like me ;)

    Sonst alles im Grünen Bereich bei dir?

  10. Hallo CCD

    look my effort ;)
    wensen u een goede reis naar huis, veel plezier bij de aankomst

    veel dank voor alles

    (and please please kidnap Dr Lee, we need him here ;) )

  11. Hi CCD,
    just for the physicist in you, big news, they found the Higgs-Boson (Gottesteilchen) at Genève. Not really concerning dystonia but very interesting.

    • Thanks for letting me know! Yes, it means that the Standard Model is correct, i.e., works the way it has been formulated. (But I think we just collectively created the particle in accordance with the theory, by our consciousness ;-) )
      Your Dutch is impeccable! I’ll see what I can do to kidnap Dr. Lee. He is not that tall ;-)
      And thank you very much for the cats. Incredible animals!
      Take care and keep in touch.

  12. Hi

    I have been following your blog with much interest.
    I believe that things happen in life for a reason and guide you onto a path that you otherwise would not have taken. So maybe your search to cure Dystonia will lead you in many spiritual directions. The cure may or may not be forthcoming but the wisdom and knowledge you acquire on your journey will be invaluable.

    I have had CD for over twenty years and it is such a frustrating and complex condition. Although I think I have had Dystonia from when I was young, it became most apparent after my son had undergone open-heart surgery. So it was a very stressful time. I do remember when I was only around 8 that I used to shake and my nervous system would seem to go out of control at times. Also when I used to sneeze the muscle in the back of my neck would feel like it had ripped and would be really painful.
    I don’t believe that anyone can understand the implications of this condition, unless they have lived with it personally. I wouldn’t wish it on my worst enemy.
    I just can’t understand how realigning the jaw can cause any long-term benefit? I used to go to an osteopath for manipulation. I would come out feeling straight and within half an hour it would all be back as it was and there was nothing I could do to control it.

    I believe that Dystonia is a condition of the central nervous system. The only coping strategy I have found is to learn to ‘let go’. Don’t put yourself in situations that exacerbate the condition and keep away as much as possible from stress. But the only problem is when you try to move forward and do more it just comes back with a vengeance……………………..
    Its taken away so much from my life,especially socially. I can’t eat out as I can’t sit at a table, I can’t drink any fluids without thickening powder and I can’t stand or sit to speak to people I can’t keep still to eat or drink. My body never relaxes sitting, standing or laying down and I have to keep moving, its impossible to keep still. The pain at times is unbearable.

    But despite it all you have to keep strong and keep fighting and in time you learn to live with it, within your limits. There are days when it all gets too much and you look back at what could have been and its all seems such a waste. I find at those times its best to turn to people who also have this condition, because they are the only ones who truly understand what you are going through.

    We are all truly inspirational and I have nothing but the greatest of respect for everyone coping with this condition. I will continue to follow you and I wish you a safe journey.

    God Bless
    Love &Light
    Ros

    • Hello Ros,

      I can feel your pain and share it. Yes social life is very difficult for us. Eating and drinking, sitting or just fall asleep, are so basic needs, but for us they are difficult and sometimes take such a lot of power.

      Do you have TS or a more general CD?

      I have TS started in 1999, and same as you I have learned to arrange me with this condition. It is the closest thing I have, it is there when I fall asleep and it is there in the morning. I remember at the beginning the happiest moments in my days was early in the morning, when I was lying in my bed, half sleeping half awoken. Then I was making plans, I thought about all the things I wanted to do, for me and with my new born baby, and I felt happy…. Then I got out of bed and…. I understood that all the simple things I was thinking of wouldn’t be possible, not for me, not for that day. And that is what is so difficult in our condition, “normal” life is so possible, sometimes you think you just have to reach your hand out and catch it, you think you just have to concentrate enough and it will be OK.

      I was lucky, the first year was terrible, but after that it went again better for me. I have the possibility to work (15hours a week only but it gives me so much because I have a great job) and I have three children.

      Before I just accepted my condition, but now when I found all those things at the web and in this blog I began again hoping, dreaming fighting. I started the program from Abigail’s STRC and it helps me. Often when I have a lot of pain I do her stretching exercises and they help me. I don’t know if it is physically possible to do them for you… but perhaps it could help you too.

      Have you met other people with CD, in which part of our little world are you living?

      I wish you only the very best

    • You are so right. CD has made me take a path which I wouldn’t have taken otherwise. Running around, working harder, earning more, paying attention to anything but my own needs: all this was becoming a dead-end. CD did me a favour to stop it for the time being.

      Thank you very much for sharing your story. It seems you have suffered a lot due to CD. And also that you have acquired a lot of wisdom on your path. I hope this blog has given you inspiration for the future. Several of the most commenting visitors of this blog are now starting with the STRC program. Please try it. You will see that it will help you enormously. Please keep in touch and let us know about your next step!

      My best to you from Moscow!

      • Oups. Wanted to say CD or a more general dystonia. Moscow…. you are coming closer and closer. Soon you will again be in the same “Zeitzone”, in this big big BENELUX ;) Hope you bring the sun with and let the rain there. (Big brother ;)

        • Wow, you’re quick, as always! I just got out of Korea in time to escape the rainy season. So I definitely left it there and will radiate sunshine into the Benelux (and perhaps Germany as well ;-) ) as of tomorrow, even though the weather forecast says differently – but they didn’t take me into account. Have a great weekend!

          • Just back from my “bring cows home walk”. New experiences;As yet mentioned I feel more relax when I walk with closed eyes; nearly the same sensation when I walk backward; and the best of all walking backward with closed eyes, I was straight and the only which could see were cows grrrrr. Perhaps I just have to walk back the 13 years till I arrive exactly at the point where CD began. If this is the healing way then start immediatly, don’t wait 13 years like me ;)
            And now I have a lot of spasms, so it’s a sign that somerhing has been working. (kneading fingers massager I arrive!!!)
            My weekend will be fine, but I think yours will be the greatest of all! Greatings to your family.

          • Thanks a lot! I am back home and now starting to get used to my life here. Went to my PT today for a good massage.
            Nice experiments you keep doing! In order to go back 13 years in a flash, I can recommend you to travel at a speed exceeding the speed of light. That will do the trick just fine ;-)
            I’m still working on our weather! Bye now!

  13. Hello CCD, I am happy to hear that you are going home, no doubt that this will benefit your mental state and in turn your body. Financial problems are very stressful. I have wished so many times to be in a financial situation that would allow me to leave my current stressful job because I think it would help my CD, but it is not to be for now. Although, it is funny that having CD has really helped my finances because I am so much less concerned about material things and no longer really care to shop, eat out, etc. I just want to live a simple life of peace. So another reason to be happy for CD! Reading your post, I was a bit concerned that you were getting discouraged, but from reading your replies, I can see that you are not. It took many years for CD to develop (maybe since childhood) so it will certainly take time for it to heal. I am confident you are getting there and have received a huge boost from your time in Korea. Dr. Lee sounds like a very kind soul and much more than just a traditional doctor.
    We arrived back from our trip to the big and very very hot city of Chicago yesterday and I am happy to report that we had a great time. Spending quality time with my kids brings me a lot of joy, it is so interesting to see the world through the eyes of children. They make me forget about CD sometimes and I am eternally grateful to them for that. I did a lot of people watching which is so interesting now. I don’t know about the rest of you, but another gift CD has given me is to greatly increase my intuition regarding the feelings of other human beings. I also watch people so much more closely now trying to figure out why I have CD and so many others who live life much more recklessly do not. It is a great mystery!
    Take care, happy travels to you! Over here in wisconsin we are now at about a week of 100 F + temperatures, it is almost like winter spending all this time in doors!

    PS, to your last reply, I am not a physicist, but I have some knowledge of what you explained. I will read up some more on this.

    • I got back home safely. All is well, thanks. Good to read your positive message! Funny that CD appears to be good for your finances. I think the same applies to me – except perhaps for one hobby I can’t abandon ;-) And thanks so much for your confidence in me. I’ll get there, eventually, like you and the others. Understanding the message of your condition is part of the healing process. It’s really not that mysterious that we have this condition and other (reckless) people don’t. It’s a combination of our character and problems in our past (i.e., freeze); this combination made us the (beautiful but) rigid control freaks that abuse their bodies and that are prone to conditions like CD.
      I think CD forces us to pursue the things that are really important in life; for most of us this includes bonding with other people. I think the same is happening to me. I spend more time and energy to connect with other people now. So that’s already a good thing to be grateful for!
      You too, take care, and don’t melt down over there!

  14. Hallo CCD,
    ich weiß nicht, ob Du die rege Diskussion zu Deiner Südkorea-Reise im Dystonieforum verfolgst. Ich freue mich, dass Du Deinen Mut nicht verloren hast.
    Im Forum sind die Leute oft so abgeklärt und unterkühlt, als wüßten sie, wer zuerst da war, das Huhn oder das Ei. Aber das ist wohl auch eine Folge der jahrelangen Erkrankung. Ich bin da eher ein sehr emotionaler Mensch und fühle mich oft unverstanden.
    Alles Gute für Dich!
    Tyroxx

    • Hallo Tyroxx,
      vielen Dank für deine Nachricht. Nein, die Diskussion habe ich nicht vervolgt, denn ich habe seit Mitte Mai keine E-Mail-Benachrichtigungen vom Forum mehr erhalten. Also habe ich angenommen, daß es keine Diskussion mehr gab! Ich werde mal schauen und darauf reagieren!
      Übrigens sind emotionale Menschen hier herzlich willkommen! Könntest du bitte deine Geschichte mit uns teilen? Und hast du den Blog ganz gelesen? Was denkst du über meine Erkenntnisse (Phänomene, Perspektiven)?
      Liebe Grüße!

  15. Hi Amelia and CCD

    I hope you arrive safely back from your inspirational journey!

    Amelia I am in UK. I used to live on the mainland and had a high powered job in London. I have always been a very strong and outgoing person and was even training for the London Marathon. However since CD, I had to stop working and some years later we decided to sell up and move over to the Isle of Wight. Its so beautiful and peaceful and I can cope a lot better here. But at the moment it is very wet and soggy! My Sister tells me that it is hot and sunny in Norfolk at the moment.

    Yes I know lots of people with CD and I always try to support and help them.

    I wish love and light to you both and hope we can keep in contact.

    XX

    • Hello Ros, thanks for sharing. Yes, it seems CD is telling us to slow down. You did a good job, moving to the Isle of Wight! And don’t believe your sister: the weather there is bad as well ;-)
      Please let me urge you again to take a very close look at the STRC program. It really works! See the section Treatments of this website!

      • Hi CCD,
        You mention STRC couple times and I have been doing the program for 6 weeks and have not feel any improvement. I have hard time to keep the military brace when I move. Standing is easy, but the moment I move my head start turning really hard. It is frustrating, but I hope I will see the improvement as it goes. Were you in the what it is called “on going recovery” state before you went to Korea?.

        • hi tanya,

          6 weeks isn´t so much resolving cd. there was a past ( i think longer as 6 weeks) until and a special moment cd occured.
          don´t loose hope resolving cd as it is in yourself and you have to break limits to resolve this, all the resolved people tell this. if you do not or give up, you will not recover. this is also a question of beeing strong especially beeing stronger as yourself. take the following with you as i mentioned: make muscles both side of body the same. (there are issue cd went from one body half to the other when only concentrating on the better side). the only way is the middle, again, again and again…you also have to reduce stress symptoms best way it goes. try just to do nothing, really nothing (try, it´s hard) sometimes a day. and at the end make training beside a mirror re-programming brain card, that´s the key.

          do not give up and do not set yourself a time limit. cd cannot be-resolved with power, only the inside flow ca do this.

          it is so individual an hard, but it goes, i am sure, feel so much improvement and have seen it with my own eyes. recovery iss possible! go fot it.

          cheers

        • Hi Tanya – I also started the STRC program 6 weeks ago, so I’m with you (so are some other people in this blog). I prepared myself that it could take at least several more months (or over a year) to reach the state of “on going recovery.” I agree with myfight. (Thanks, mifight!) Stay positive and persistent!

        • Hi Tanya, after starting the STRC program my CD became worse during at least 3 months. It was hard to carry on, but I did. And after 4-5 months I started to see improvement. When I went to Korea I wasn’t in the ongoing-recovery state yet, although I had no symptoms anymore when sitting, standing, eating, talking, typing, etc. I only felt strong tension when walking or driving my car.
          So you need much more patience! Even if your CD deteriorates in the beginning.
          Good luck and keep in touch!

          • Thanks for the encouragement. I really like this blog, all of you are very positive, smart, and thoughtful. I do need tons of patience, persistence, and prayer.

  16. Apparently I have started out too strong with the STRC. I have been having too much fight back!
    I thought if we are physically able to do all of the stretches, we should do them. But I guess not, after getting an email back from the clinic yesterday, I should only be doing a handful of them and only 2 reps each.
    How do the rest of you understand this? are we suppose to incorporate them all down the road? And after recovery do we continue to do all of them 10 reps each?
    Just curious about all of your impressions about the instructions, it’s not really clear, I guess it’s very individual.
    Still trying to figure out if recovery means also “free walking”. I’m a hiker and hope to be able to do that again. I can’t seem to get a straight answer about this.
    I was hoping to ask Ginger these kinds of questions, but it doesn’t seem like she is going to ever call.
    It’s also not very clear what kinds of activities to absolutely avoid and what is okay, once in recovery.

    • Good to hear from you. But don’t worry, you’ll have to learn how to do the exercises in a way that your body accepts them. Indeed, you should gradually improve the number of reps, starting with just a few ones. To be honest, I have always done a number of reps in accordance with feeling/mood, not really counting them. The better I started to feel, the more reps I did. I just let my body decide each time how many reps I need. (And I have eliminated a couple of the exercises, since they made my left eye black out, my right hand and arm twitch, and almost made me pass out.)
      After recovery you’ll just continue with the exercises, as much as feels comfortable. It seems that there are periods that you don’t need much exercise at all. (You were the one who told me that some people on the STRC program don’t need any anymore ;-) )
      Hiking should be possible, definitely.
      Don’t worry too much. You need several months to get used to the exercises. Your CD may get worse initially (mine did!). Just continue and don’t give up. And take a lot of rest, meditate, love your body, etc. etc.
      You can do it!!!

      • Hi CCD,
        thanks for reply and pep talk. This morning I only did the “starred” stretches, plus a couple more that I love. So we’ll see how this goes…..
        Yes, I was definitely told that some people are so well they no longer need the program. I am shooting for this also, but if not, I don’t mind stretching daily, I like it. I should have started long ago, maybe this wouldn’t have happened.
        My new theory about why this is possible is that the relaxed facial/neck muscles allow the jaw and the atlas to move back in place enough to allow more nerve communication?
        possibly? So in a way your cured, until something may happen that shifts the jaw in the wrong direction again….hopefully that won’t happen. You are right I worry too much, the fight back has created some anxiety, even though I have no doubt in recovery.

        So far I have not had any reaction with a couple of the stetches like you did, good you eliminated them. It seems to me anyways, a lot of the stretch/exercises are
        duplicated, just in a different position, or with different equipment.

        • Buongiorno Sunflouwersprout

          You will see life without CD will be marvelous (more then ever before, because you will appreciate it at his just value), but even with cd it can be beautiful, stay positive. And try to see the beauty in every day, so do I even if sometimes it seems very difficult. Don’t let cd get the center of your life. Send you lots of energy (will try to write you a mail tomorrow)
          viva italia ;)

        • That’s the spirit. Yes, regular exercise is necessary in any case. And why not do some specific exercises that help you stay straight!
          I agree that the exercises will help to align the body (cranial bones, jaw, vertebrae, pelvis, etc.) and calm down the muscles. Also, I think that when that happens (i.e., when you arrive at the ongoing-recovery stage), you get the chance to recover completely. Possibly SE will do the trick. Let’s keep on searching.

          • I fully agree with this, I think a total cure will be easier and possible once in recovery mode when we can find that deep inner relaxation and continue work on the trauma.

          • hi sunflowersprout,

            one thing is also to forget about cd. the brain do not know the word “no”. so you can not tell yourself “no cd”. it´s sometimes a little bit stupid. the way is re-programming with straight, straight and straight..it only goes about the middle. in the past i have been recovered from other issues, mental and body issues. today, i can not imagine fall back to those issues and having no more trouble with it since years. one day the same will happen as i will not imagine fall back to cd. recover goes on. there is no option to it ;-)

            cheers

          • I totally agree Myfight. This is a lesson from neurolinguistic programming that I learned in the past. Always work with positive affirmations, shaping your reality with the associated images!

          • Good to see your still around Myfight.

            You are right, there is no option, we MUST recover, and then we must also forget it!

          • I would like to collect recover information from recovered people. Do you have heard everything about cases which the recovery was
            1. “fast” – I mean something like spontan remission (e.g. waking up in the morning and all symtomps were away)
            2. “slow progress” – symtomps are getting better and better until they are completely away..
            3. or something else

            It would be nice to hear about how it was and when was exactly the point the recovered people said “ok I am recovered”. Every input is welcome..

            cheers

          • Myfight,
            I have only talked to 2 recovered people.

            It is a very gradual process that takes anywhere from 6 months to 2 years, with the STRC program.

            once you are past the fight back stage, you may get moments where you can suddenly hold your head straight and have no pain for a few minutes.
            but then the spasms return. As time goes on these “good” moments happen more frequently and for longer periods of time. Until eventually you are recovered, and have no more symptoms.

            As far as how much time it takes, I think it depends on stress levels, commitment to the daily exercises and daily massage.

  17. Ginger called me yesterday! :) She is a very nice and helpful person.
    She says I will be able to walk and hike freely!
    She has complete freedom of movement!!

    The things she avoids is jumping, biking (because of the head and chin jutting out) and she avoids looking up for extended periods.
    And as far as swimming it’s great but you cannot do froggy style or dog paddling because then the head and chin jut out.
    Dancing is very good for us , actually any kind of movement is really good (except for jumping)

    She is not doing the full stretch program anymore, but she still has to do a few stretches in morning and evening to keep stiffness away.
    It doesn’t sound like she gets much massage work either.

    She says she never thinks about the ST anymore in daily life.
    There are certain habits she just automatically does: She has to maintain good posture otherwise she will start feeling bad effects in her body.
    She will do mini stretches at work, like pulling her head/chin into her chest.
    Not lifting and carrying really heavy things. Not looking up for long.

    She has never tried Reishi mushrooms or any antivirals.
    She did use magnets but doesn’t know if it helped.
    Not sure about the Shaklee.

    She also says you can accelerate recovery by movement, lot’s of walking, doing some swimming with the noodle.
    Also once she was able to avoid anxiety/panic feelings her recovery accelerated.

    She does not live in fear of the torticollis returning because she knows the stretches will always take it away, she is very confident in the program.

    She says the ST is not dormant. She knows it is still there, by the stiffness, yet she needs to do very little to control it.
    Hope this helps us all stay positive!

    • sunflowersprout – That’s fabulous, you finally spoke with Ginger! Thanks for posting this. What said in here are very encouraging and reinforced my faith in the program! They all make sense and sound feasible. Thank you for asking my questions as well! I also gave up sleep on my back after tried two months because I couldn’t sleep deep. I also stopped using u-pillow after two weeks – I can sleep much more comfortable now :)

      • Hi CCD,

        She is a real talker, I spoke with her for 2 hours, or she spoke :). I had a list of questions and it was very difficult to get through them, because she would go off in other directions.
        She is a very wonderful person, and will be taking over for Abigail someday.

        As far as changing her lifestyle, just before onset of ST, she was very much into road cycling. She can no longer do this, because of the position of the head.
        (I plan on rigging a mountain bike with high handles)

        One other thing is she only works 5 hour days instead of 8, because she says she tires faster than other people.
        She likes to do walking, because we should not jog or run.
        I never got to the childhood trauma part, to me it didn’t sound like she had an awareness about this.
        12 years ago when she first developed ST, I don’t imagine there was a lot of information on the internet like there is now. So people that have been recovered for a long time and are doing fine, they don’t really seem to be seeking a “cure” like we are. I found this to be true with Abigail also. They carry the medical establishments view that there is NO CURE, and have accepted this, so they look no further.

        I hope this works, I don’t want to type it all over again!
        And then it shows up twice.

        • Thanks very much for your (single) reply. I see what you mean. I think you are right about their point of view: they look no further. Perhaps they have looked in the past, but stopped doing so at some point, probably also due to lack of information and general insight. But for now, we won’t give up!

  18. Help!

    My postings sometimes don’t work and sometimes they show up twice, am I the only one having trouble with this?

    • Don’t worry it also happened to me.

      I’m so happy you finally could talk to Ginger. All this sounds really positive. In some years we will be those who can give good advises and pep talk to other persons suffering physically and mentally and it will be a great honor for us.
      I agree that froggy style swimming is a very bad idea while TS. I did it in the beautiful sea from Korfu (greece) because I thought it would be a great thing and bing….. scratch…. I really regretted it during more then a year, now I always do snorchling because my head is then in another position.
      This morning I started again my dancing work out (because I really missed it), dancing during 30 minutes and then after that I did stretching movements from STRC and they were much easier (certainly because muscles were yet warm). We have to be dancing queens (and kings ;) ).
      You are welcome in Luxembourg, we will always find a little place for a sunflower ;)

      • You get to snorkel in Greece and Italy……yes life is beautiful for you! :)
        And once we are free you can come hike in the beautiful sunny red rocks of Sedona !

        • Yes life is beautiful, that is what I always tell you. You know I did all this with CD and without any external help, and with 3 children. It is possible, if I can do it, you can do, even if you don’t think so for the moment. But it will even be better for you, because you will do all that without CD.
          Yes will like to see the sunny red rocks of Sedona, are this those on your pictures? They look so great as our hole country ;)

          • Yes, I think I have some pictures of the red rocks in facebook. it is amazingly beautiful here. The desert is magic!
            We get lot’s of European tourists. And lot’s of German’s live here. I worked at a beautiful spa and most of my co workers were from Germany.

            You are an amazingly strong woman. I don’t think I could do it with 3 children. No there will be no children for me in this lifetime, maybe next time :)

    • Yes, only you! In the future, just try to keep your finger away from the “Submit” button when you have a spasm. ;-)

  19. I forgot to mention, she was never able to sleep on her back,
    so she sleeps on her long side never her short side.

  20. I have been doing ST clinic for almost 15 months. It definitely helped with pain. I also do yoga and I am told I look much straighter. I get 400 units of Xeomin. But I still pull :( i love to walk but it is aggravating with the pull. I like zumba but am not entirely sure I should do that. Started massage therapy a few weeks ago and just got Anat Baniel (form of Feldenkrais) for the neck and shoulders.

    I am a mom of four..one with Down Syndrome and a heart condition and the others have a multitude of medical issues..one is having spinal fusion in the fall. It just doesn’t stop but I try to rely on faith, deep breathing and yoga to manage stress. It’s so hard. But I plugging away and won’t give up.

    • Welcome Wyawya! Wow, you are facing a lot of challenges! Do you still feel that you are gradually improving with the STRC program? And do you still increase weights and the number of reps?
      I don’t know zumba, but if it includes jumping and shocks to the body, you’d better be careful with it, at least until you have reached the state of ongoing recovery. Feldenkrais should be good. And massage therapy is vital. Possibly you will experience much more improvement as you continue with the massage therapy.
      Also, I can recommend Somatic Experiencing. Have you read the sections Phenomena and Perspectives of this blog?

    • Hi Wyawya – As for zumba, since it includes a lot of jumping and fast movements, I agree with CCD that you need to be careful until you get full control on your neck movement. I was also once very much into zumba, but the certain repetitive movements aggravated my CD symptoms by reinforcing the pulling of my neck, so I’m on break for it now. I agree that yoga is very good for you, as far as avoiding some poses that drifting away your neck. I imagine that your situation with your children has immense challenges but I hope you keep the faith as everything happens for reasons. All the best :)

    • Hello Wyawya,
      I read your post days ago, and I have been thinking about you during hours. And I just didn’t find the words I should.

      Living with cd is hard, living with cd and children is a big challenge. I always think that for the moment I can manage it all, but I always think that if one of my kids (I just have 3) would be gravely ill I really wouldn’t know how to find the energy. Just thinking about it takes me the breath away. And then I read the words you wrote, and you are so strong.

      When I was a student I have been holiday teamer for kids and also worked with children and adults with Down Syndrom, and I know how lovely they are, how positif, but I know also that a lot of situation which for other children are completely harmless can ask such a huge of patience and calm from your side. I just can admire you .
      I’m happy that STRC takes you the pain away it did the same for me, and that is yet a big part of the problem.

      I do Zumba, because it gives me a lot of energy and makes me forget for a little while. I do it at home so I can adapte it at my situation, and I always try to do it in a military brace position (head down, looks stupid but helps me ;) ) That works for me, but I think it’s very individual, and things which help one of us do not work for other.

      I send greetings to you and your family, stay strong even if sometimes it must be very very hard.

      • Some days are very tough. Yesterday was one of them. The impact on my family is huge as it was always me doing the running. Now my husband has to do it and of course that is a financial impact.

        I am not sure the neuro is injecting me in the exact places. She is very experienced but won’t use an EMG. My massage therapist says there is a lot of activity coming from right SCM and scales. I am going to tell her she needs to focus on that area more.

        I am going to step back from zumba for right now as it does make things worse for me, even though I try to modify. So for right now it’s ST clinic, yoga and Anat Banield. I am quite sure the household stresses impact my recovery progress :(

        One thing about ST Clinic, I really wish they would have started a FB or Yahoo Group so that we can have a place to chat.

    • Yes, good stuff. The message of letting go, accepting and loving yourself is vital for healing. I have looked into EFT one year ago, but haven’t really tried yet. (Just can’t do too many things at a time.) Have you?

      • I’ve only tried it a few times, I must admit I can feel it lift a load off.
        I’m having a hard time focusing on this aspect, just dealing with the fight back now. Need to start the SE soon.

        • How are you now Sunflowersprout? Still a lot of fight-back? Take your time with the SE. We tend to be too ambitious, too demanding: we have to do everyting in one go, and do it perfect as well! Remember? I need to remind myself: take it easy, be gentle with yourself. I had a conversation with Myfight last week, and he told me that he is still enjoying his occasional glass of wine. That’s very good. Take a more relaxed attitude and don’t be too severe. One step at a time. Everyting is fine as long as it feels comfortable.

          • Hi CCD,
            Thank you, you always give good advice!
            I do have more of a relaxed attitude these days, but it seems constant reminders are
            a necessity. I am slowly making a shift from a type A personality to the other kind (type B?) I will keep the good stuff from type A and discard the rest. :)
            The fight back had died down and I was feeling better and realized, WOW, this program is working and so then of course I added more weight to the gym exercises, and right away, yesterday the fight back returned. Feeling a little better today though.
            I guess this is the roller coaster they speak of.
            I absolutely agree an occasional, even weekly glass of wine is fine, your body will let you know.

          • Sorry for the long silence – due to my holiday. I will work my way through the latest comments and get back in touch with all of you. Good to read that you are getting better!

    • Yes, indeed good stuff. We can replace the word “pain” with “CD” in the videos. I recently saw Dr. Ramachandran’s interview about the similar subject (psychosomatic effect of pain) and he also mentioned about the phantom limb pain. His books about brain seem very interesting.
      I’ve also worked halfway through on the SE from the book and CD a while ago but I’m taking a break for now (for other priorities). To me the SE even takes more time and effort to see the real effectiveness than doing physical exercise. But I understand the concept and try to apply them in daily life – like grounding and centering. It may sound strange but when I first realized that my neck is indeed part of my body, I was in tears.

      • Yes, I would imagine the SE takes even more time than the exercises. I replaced the word pain with neck muscle spasms and I did it a few times. It totally relaxed me, it felt really good!

  21. Hi everyone
    I have read a lot of interesting articles on this site. I too have CD and had noticed very mild symptoms in my early 20’s and just thought it was stress when my head deviated to the left every so often in certain situations. However 20 odd years down the track it became increasing worse and I have now been getting botox for about 3 years now. My goal is to not have to rely on it and I also have been doing the STRC program for around 2 years now and I have visited Abbie’s clinic last year. I come from Australia.
    I must admit I haven’t been 100% committed and even drifted away from the program lately and I am sad to say that my ST is much worse.
    Initially when my ST was so bad I had to leave my full time job for around 4 months and then slowly started back on reduced hours. I now work 27 hours a week but am so pleased to get home at the end of my shift!!
    I have just been to visit a Neuromuscular dentist who has made no promises that he can help me. I do have some alignment problems with my jaw etc but he isn’t sure whether it will help me. Anyway I’ve decided to go ahead with it. I’m pretty desperate!!! It is also very costly!
    Has anyone visited some U tube sites and seen the results of NMD with cervical dystonia? I would appreciate any comments or any knowledge anyone has with this treatment.
    Take care
    Jenny

    • Hello Jennifer,

      Sorry I have no useful information for you. Just wanted to say you a little hello and that I completely understand that you feel desperate. It really takes always such a lot of energy, everytime when you find a new indication and when you think Ok, that will be it, that will help me, that will be the ultimate solution for me… and then feel that it doesn’t work, I know that feeling too. Like you I’m not able to do a full time job.. and that’s a mess because I really really like my job.
      I can not tell you that there is really a way out, but I hope, I hope a lot, and that gives me the energy to try again and again, as you do too.

      Greetings from the other side of the world, and a lot of energy

    • HI Jenny, thanks a lot for checking in with your story. The fact that you feel much worse since drifting away from the STRC program is a message. I think you should start it again and be persistent.
      As for the jaw alignment, there are various videos on Youtube of American doctors applying NMD. See the section Treatments of this blog! It is not clear to me though wether the results are sustainable. (I even heard they are not.) But it seems pretty clear that CD can be (positively) influenced by aligning the jaw joints.
      More importantly, you need to be dedicated to healing, to give yourself time for it, to be gentle and loving toward yourself. The actual physical method you choose might not be that important. Listen to your body. If any treatment gets physically unpleasant, beware.
      I hope this helps a bit!

  22. Hi CCD and all you inspiring and helpfull persons out there, hope you are doing well safely back home again CCD. I’m thinking of trying the STRC-program. Is it easy to follow even though you don’t have English as your native tounge? I really agree with what some of you have said – that CD has made me a better person, more sensitive when it comes to recognizing how other people feel. I often nowadays think of CD as changing destiny, as you said Myfight. Thank you to all of you for sharing your stories.

    • hi ann,

      if you like i can you tell you my programm (seems to be near to strc). let us skype or phone about that if you like. this is just an friendly offer.

      cheers

      • Hi Myfight, Yes, I’m very interested of hearing about the program you are doing. I just signed up for skype, guess that is easier than phone. Thanks!

    • Hi Ann – No worries, the STRC program is easy to follow even though you are not a native English speaker (neither am I). The long-distance course comes with DVDs, so you can watch almost all exercises and other tips. All you need are some commitment and faith. All the best.

  23. I asked Ginger a few more questions so I have more good news:

    She NEVER has involuntary neck movements.
    She says her neck muscles for the most part are loose and relaxed, unless she has a lot of stress in which case she needs to do some stretching.

    Very rarely she may experience neck stiffness, when her neck does not fluidly turn left.
    She does not feel twisted at all and feels very straight!!

    She says no matter how bad a person’s ST is, they can recover if they are committed to the daily program. She knows because her ST became severe.

    Dolphin I’m wondering how you are coping with the fight back? a while ago you said you were considering botox, to help you get through the next few months. I’m having some extreme fightback, I didn’t think it would get this bad. And I’m stubborn, I haven’t listened to Abbie to cut back on the exercises much.

    • Hi sunflowersprout,
      Great news about Ginger! Really good to know that she has the free neck since it’s the key for every movement of our body (according to the Alexander Technique).

      Another good news is, no, I’ve never had Botox – it would make my neck numb and I wouldn’t know how my neck reacts with the exercise. My fight back gradually reduced after a few weeks of the exercise, so the best medicine for fight back is rest, time, and slowing down the exercise – you know that! I have fight back after the massage, so I use ice pack and a shepherd’s crook-like tool and they work well (Thanks CCD). I also used to do the AT after the STRC exercise but I don’t do it now (no time).

      I think it’s better to reduce spasms (even good ones) as much as possible because spasms are not only discouraging, but also reinforcing muscles to the pulling side, making CD symptoms worse (that what I feel). To avoid this, I still need to support my face with fingers when my neck pulls when I walk in public areas.

      I do exercise, massage, and trigger points a total of about one hour daily. I do slowly while watching news and a favorite TV show (Rick Steve’s Europe ;)) only a few reps for each exercise. The STRC said that quality is more important than quantity of exercise (but I simply have no time).

      I also occasionally work on a mirror and explorer – like where I have chronic tensions; what stance or movements cause spasms; where are my trigger points; which part needs to be stretched in order to reduce symptoms, etc. – and focus on these troubled areas little by little. Another good news – I started to manage sleep on my back :)

        • I asked Abigail if I could contact her and she gave me her email address.
          She seems very busy so don’t expect a quick response. Email seems to be the best way to communicate with her.
          You will reach recovery eventually there are some obvious reasons to me why it’s taking a little longer for you. Your stress levels must be high considering your children’s health issues. Massage is just as important as the exercises, and needed to be started at the beginning. And Abigail would probably say you cannot recover if you do Zumba.

          Ginger will tell you anyone can recover no matter how bad the ST is. It seems to me the STRC is more of an exercise in patience and faith than it is in exercising our bodies. :)

          • I have emailed Abbie before but her responses are a little bit canned.

            You are definitely right about the stress levels. I remember I had just gotten the ST Clinic materials when my son started having seizures and we found out he had to get a pacemaker. I will never forget standing room only in his ER when we got there and the incredible pain I was in. There is no way to get around stress without moving out (joke) but I am faithful to get rest and do yoga often. I am laying off the zumba.

            I bought a massage device and body buddy right away but did not start getting weekly professional massage until a few weeks ago. The MT is telling me he is feeling all the spasms and activity in the right SCM and scales. I turn to the right and the doctor primarily injects the left SCM so I don’t get that, but I am going to talk to her, maybe alternating right and left SCM on injection day. She doesn’t use an EMG which bothers me but I do not have a lot of choice on my plan. I went through my provider list with a Botox rep and she told me doctor was the most experienced of the lot.

            I try not to mop the floors but sometimes I am the only one around to do it. I wonder if I should stop that completely.

            I am just trying to hang in there. A number of situations I am completely powerless over. I read my Bible and Streams in the Desert daily, do my yoga and am keeping the faith that this is going to turn around. I am most definitely straighter than I was at the beginning and the pain is greatly reduced.

          • Marya, (you changed names).

            The fact that you are straighter now and in less pain means it’s working, and you will recover.
            Some people take two years and I’m sure there are some who take even longer than that.
            Glad you are not doing Zumba, I’m not sure if I would do yoga right now either, but I would ask one of the experts (abigail or ginger) about that.
            when you mop the floor just make sure you chin is a little tucked and not jutted out.

            Abigail has not trouble shooted for you?

            So if you want to talk to Ginger either email Abigail she will get you in contact with her,or give me your email here and I will give it to Ginger.

            Stress is a huge factor. As Ginger said, her recovery accelerated once she was able to control the anxiety.

        • hi sunflower :-)

          i would be intertested getting in contact with ginger and abigail to share experiences. would you ask them sending me an email? thanks in advance.

          cheers

          • Hi Myfight,

            Because these two people are so busy,
            I think they only contact people who have taken the STRC program. Even for those of us who are clients, it is difficult to communicate with them.
            You can find contact info at the STRC recovery clinic website, if you want to ask them questions.

          • thanks and no worries sunflower. i have my own programm and i am sure this works. it would maybe only be interesting to share something but its totally ok with me.

            as ccd mentioned we have had a video call. for all here – he is such an serious, nice + intelligent men and really real ;-)

            thanks for this blog my buddy

      • Thanks Dolphin, it is great to hear about your experience and daily routine.
        I think I will ease up on the gas peddle a little. I agree with you, it’s not good to have more pulling, even if it’s from a good spasm.
        I may have the opportunity to try some cannabis oil soon and will post the results.

    • Good news about the STRC program!
      As for your fight-back, be gentle, step off the gas a little. (I know, it’s hard.) On the other hand, it’s not the end of the world. It took me more than 4 months to start seeing improvement…

  24. sorry about the name switch…I was on a different computer and not paying attention. If you could forward Ginger this email addy:

    suncoastmomma@gmail.com

    Thank you so much. I am better, if I could just get the pulling under control I’d be in business.

    I was reading on the ST site last night. I think I have the anterocollis/rotational combination. From what I read, the suggested protocol is to switch injecting left/right SCM. I hope my doctor listens! It is definitely the right SCM that is going whacko.

  25. hi wyawya,

    just to let you know that i think you can not recover while injecting botox as you can not work and your brain can not control the muscles completely.

    cheers

    • Hello Mifight and Wyawya,
      As for Botox, it is absoultely possible to recover while getting Botox injections. I know of several cases who have done the STRC program, with Botox in the beginning. At some point they could just stop with the Botox. I have actually met someone who did this. He took Botox during one year. And now he is completely recovered. (You can see his testimonial video under “STRC” at the Treatments section of this blog.) Also, there are comments in Spanish from a visitor of this blog (Rafa), who has seen his CD disappear completely after getting Botox injections. In his case the CD had been absent for many years (now he has symptoms again, unfortunately).
      I think the Botox can help to relax, so that the body gets an additional stimulus to heal itself.
      But of course this may vary from person to person. Like most people on this blog, I want to avoid Botox as long as I can, to recover the natural way.
      Take care!

  26. Hello CCD and everyone,
    I hope everybody is busy for working on recovery! My conditions are very slowly improving. I just wanted to let people with the STRC program know that it has a chat group, which I just knew from Abbie this week. It sounds she is not planning for a blog for the moment, but she will put you in the email-based chat group if you request her. There are some (or possibly many) people with on-going recovery in the group, so it may be a good place to ask questions if you are intereseted. Cheers.

    • Hello Dolphin,

      Thank you for your information. Yes very busy for the moment. Somedays are great and others more difficult, the same as for most of us I suppose. But the whole thing goes slowly in a good direction, less pain, more positive mind set, and some moments where I can relax. (which wasn’t possible before). I hope you will be fine. Stay in contact I think it’s good for all of us.
      send you a lot of positive waves
      take care

      • Thank you Dolphin,
        Funny how we’ve never heard of this chat group before.
        So great to hear you both slowly improving. It really helps with the positive attitude, and less anxiety, which then helps with a faster recovery.
        I had some intense fight back as you know, but it seems to be over for now. I also feel much improvement! Walking is so much easier now, what a relief!
        a few weeks ago I went to see my upper cervical chiropractor. I felt so good afterwards, like I was completely healed internally. I was at peace. But because of the fight back the c1 and c2 did not stay in place for long. Yet, I strongly feel this is part of the healing. I encourage everyone to try it.

        • Amelia and sunflowersprout – Nice to hear you both are also improving, too! Hope you all enjoy the rest of summer time! (Heat waves finally reached even in California.)

  27. I’m very happy to have found this blog, it’s the most thoughtful and personal discussion of cervical dystonia that I’ve found so far. It seems to really fill a need!

    I’ve read through most of the comments above and really appreciate all the sharing of ideas. I was diagnosed early this year and have been doing the STRC long distance program along with botox and physiotherapy that focuses on biofeedback using computers. I’ve seen very hopeful results from all, but still have a ways to go. Like others I am looking forward to getting off the botox eventually, but right now I think it’s acting as a bridge to help me get to the point where I can fine tune my recovery.

    Thanks to CCD for this project and all the great information you’ve shared here. I especially appreciate the perspectives section – it taps into many of the ideas I’ve started to form about why this condition has presented itself and what I need to learn in order to heal, in my body and all other areas. The whole idea of CD as a spiritual catalyst is fascinating to me, tough though it is. CCD, I look forward to hearing more about your journey.

    • Thank you very much for your kind comments! And sorry for the very late reply – due to my vacation.

      And thanks for sharing your story. Yes, the Botox will serve as a bridge and bring you to the point where you can take over the recovery ‘on your own’. I was in Spain this month, and met another (Spanish) visitor of this blog. When CD first appeared in his life about 10 years ago, he received a series of Botox injections. The last one was at a higher dosage than before, and the doctor was curious to see what would happen. And: his CD disappeared! Until it came back one year ago. Perhaps the Botox was a catalyst for recovery. (Or it coincided with a spontaneous recovery that would also have occurred without the Botox.) Anyway, it can be helpful to take Botox. Yet, so far I am doing without, and glad about it.

      Elsewhere on this blog, especially in the comments, I have mentioned Somatic Experiencing several times as a potential cure. I will soon add more information about it.

      Stay tuned and let us know how you are doing!

      • The somatic experiencing looks interesting, and the whole freeze/trauma response makes sense. I’m going to have a look at Peter Levine’s book, Waking the Tiger.

        Today I had a myofascial release treatment for the first time, will let people know if it helps.

  28. Is there a way we can get a discussion group going under a different format? It is so helpful to be able to talk to others doing St clinic.

  29. Hi CCD,

    Thanks for coming out with such an informative blog on Cervical Dystonia. My Farther aged 60 has also been diagnosed with cervical dystonia (torticollis) last year after he had an accident. Till now we have been trying different treatments for him in India like medication, botox, Ayurveda and currently he is on alternative treatment of Homeopathy & Chiropractic adjustment. It’s been almost 3 months with alternative treatment and outcome doesn’t look promising. I am thinking of getting long distance ST clinic course for him. Can anybody let me know whether it’s beneficial to go for it.

    CCD it would be of great help if you can also let us know the monetary aspect of getting the treatment from Dr. Lee in Korea.

    Regards,
    Rajveer

    • Yes, the STRC program is good! I am doing it right now. It works.

      It seems that most people need a physical exercise program to recover from CD. Without that (like your father is doing), recovery will be very hard.

      As for the treatment in Dr. Lee’s clinic, it is costly. But you will have to contact him directly for details. See his email address elsewhere on this blog (My Quest).

      Let me know if you have further questions!

    • I second CCD’s response, I’ve found the STRC long distance program has helped me to get ‘unstuck’ to a certain degree, and I’m continuing to see improvements as I do it every day. However, I would also caution that you have to tailor it to your own situation, as Abbie isn’t a medical professional and doesn’t know what other medical issues or restrictions you may have. Definitely use it, but carefully and slowly at first.

      • Agree. Everyone is different, and tailoring is good, according to your own needs. Listen to your body and apply the tools and methods it needs.
        How long have you been on the STRC program now?

        • I started around March of this year. For the first couple of months I was only doing the stretches, gradually building them, then in April I started doing the gym work too. Have also done the nutritional side of things (cutting out sugar and wheat) which I think helped as well.

          By the way, I’m also looking into dental realignment for treating cervical dystonia, which is supposed to relieve nerve compression that could be a cause. You might have seen this video of a U.S. doctor who has used this treatment:
          http://www.youtube.com/watch?v=pfDYLYyoUyw

          Does anyone have any experience of this kind of approach? I have approached a local orthodontist to see if this could be done where I am, but no luck so far.

          • Thanks for your feedback. So you have started recently! And you already made a lot of progress?

            Yes, I have seen that video (I think I included it in the section Treatments of this blog). I know (via STRC) of someone who has tried this, with some effect, but not long term. He subsequently went to STRC… As far as I have understood, permanent changes to the teeth and/or jaw are required to achieve permanent results – with these doctors in the US.
            If you research this further, please let us know your findings!

          • Yes, I’ve seen noticeable progress in the last few months, though botox and physio are also a big part of it. Still having regular symptoms though so lots to improve on. I’ll be sure to let you know if anything happens with the dental treatment. At the least I may have a better smile!

  30. Thanks for the valuable inputs. I have enrolled my dad for the STRC long distance course. CCD its been 3 days I have been trying to contact Dr. Lee through email but not getting any response from his side. Any comments on how to contact Dr. Lee.

    • Well, not really. Just be persistent and send a reminder. Or make a phone call to remind them of your message. There is always someone at the reception who speaks English. But I think STRC would be a good (and economical) start!

  31. Hi everyone – if you have CD and working full-time (especially for office work in a city) with commuting (not telecommuting), I would appreciate if you share how you are coping (or struggling) with CD at your workplace and commuting without Botox. It’s good to know how others with similar circumstances are doing since I think environmental factors also matter on CD to some extent. Thanks!

    • Hi Dolphin, I do also work full time and have about a 40 minute commute each way. I also have three kids ages 8-14. How do I cope? I take it day by day, that is all we can do. The commute is not too bad for me as I do not have too much trouble with CD while driving (only when checking my blind spot!), and actually lately I have taken advandtage of the time with either practicing proper breathing and posture or reading signs out loud. At work, I have good days and bad days. The majority of my job is spent in a cubicle in front of a computer, but I typically have at least 1 or 2 meetings per day. The worst days for me are when I have many meetings, but I try to focus on the task at hand as much as possible (which helps to quiet the CD to some extent). While at my desk, I try to take a 5 min break every hour or two and do some stretches and movements. I also try to focus on maintaining good posture as this has been a big problem with me in the past and probably contributed a lot to my CD getting worse. I do also take a lunch break most days and actually leave the office for 20-30 minutes each day to have some time to myself. Then I get home and make dinner and help the kids with homework, clean up, and have an hour or two before bed then to relax. I have no time for CD in my life, but unfortunately it has time for me. I feel better about where I am at now though, even just a few months ago, I was thinking how will I be able to maintain this schedule? But I have also read about many people with CD who have decided to stop working (or reduce) and it does not seem to have helped their CD at all and in some cases, it even got worse. So I am determined to not let it take over my life and just try to remember to slow down as much as I can in my current situation. I would also like to hear from you about how you are coping and where you struggle the most. Take Care!

      • Hi Carrie,

        Thank you for sharing your work story. It’s great to hear that. Wow, you have three young kids, work full time and do house work daily, with having CD without Botox! Amazing!
        I found a lot in common how you cope with your work life – I also try to remind myself to breathe, maintain the proper posture, focus on the task at hand (present moment), try to slow down (the hardest thing), and go out for lunch. What do you mean by “reading signs out loud”?

        Walking have been the most trouble for my CD. Once I stop walking (just sitting, talking, etc.), it is almost manageable. I need to walk a lot, about 90 minutes each work day – during commuting by subway, going out for lunch, and in the office. I prefer driving (like you, driving is almost no problem), but for my current work location, driving takes longer and stressful because of traffic and parking issues (my city has perhaps the worst traffic and reckless drivers in the country). I drive for other things like going grocery, etc.

        What I’ve been suffering is constant exposure to people’s eyes (social embarrassment) when I have to walk outside with CD symptoms (jerks and spasms), and this give me even more stress. People are everywhere since it’s a densely populated city (and many are smoking, which I don’t like). My office building always has many security guards in the lobby and the courtyard, and inside my office has low partitions that makes relatively open space. I get little chance for big stretching – even the ladies’ room is a busy place. I have to confess that it’s been the hardest work life in my life since I got CD nearly a year ago (when spasms started). Even just walking to a meeting room or someone’s desk or the lady’s room is uncomfortable. I avoid walking with someone side by side because my neck pulls too much when the person is the pulling side (the other side is OK).

        I think there are some disadvantages of working outside with CD compared to those who can stay home. It is very hard to maintain proper movements and subtle adjustments I practiced at home, because I need to move much faster when I’m outside (it’s limited to slow down); otherwise, I could increase pace of movement gradually and slowly, which is more efficient. So work life can worsen the CD symptoms and/or make recovery process very slow.
        But CD usually can’t recover within a few months and can even take for years, so it’s unrealistic to me to take a very long break. One of the main reason I keep my work is to make ends meet and saving for the future retirement.

        I also think there are probably more advantages with keeping work outside other than stable income, even if the job is not an ideal one as I have now. It’s important to stay in a profession; otherwise, it’s getting harder to go back to work after a long period of break. I’m forced to interact with others; otherwise, I would’ve avoided to see new people (I’m still reluctant to see new people outside of work since having CD). I’m forced to walk (even uncomfortable); otherwise, I could stay home most of the time other than going grocery. During the work day, lunch time is like an oasis to me – I make 20-40 minutes round trip to buy a lunch at one of farmer’s markets or favorite ethnic restaurants, and eat it in the courtyard with a fountain and flowers in my work building. Water stream is relaxing and I enjoy eating, going back to work fully refreshed.

        I went to a job interview last week (to take a better opportunity whenever I get a chance, or if not, just for practice for the future) in a different area of my city, closer to the ocean. During the interview, I can almost hide CD symptoms since talking to people is almost OK, and I usually don’t need to walk a lot front of interviewers. Though it takes more commuting time with traffic, I felt it will be much less stress if I work the place like that because of driving, plenty of on-site parking (means less walking), no security guards around, high partitions inside the office that keep private space. So environment does matter to reduce stress, thereby reduce CD symptoms.

        After all, yes, we have no time for CD in our life. And I feel that the more we preoccupied with CD, the more CD symptoms occupy us!

        • Dear Dolphin, allow me to make a few remarks. It seems that you spend a lot of energy concealing your CD and having fears of what other people will think of you. What would happen if you stop trying to hide it, worst case? I think now and then someone might ask you what is going on with your neck. Then you could say that you have uncomfortable muscle cramps sometimes and leave it at that.
          My advice is: be yourself, love yourself, accept yourself the way you are. Nothing bad will happen to you when you stop trying to hide, on the contrary…
          Also, I think it would be better for you to stop walking that much at this stage. Walking causes a lot of strain to the body, and that isn’t helpful to heal further. Your traumatized body needs rest. I think Jordi would agree with that. I know the alternative (driving) isn’t ideal either, but perhaps you can think of a way to make it work (take another itinerary, leave home earlier, take a subscription on a parking garage near work, try to drive in Naples or Mexico City and then go back to your home town to see that it is a piece of cake in comparison, etc). Take care!

          • Hi CCD,

            Thank you for your remarks. It all make sense – I have considered all the things.
            While walking, it’s obvious that I can no longer hide my CD symptoms, even if I support my face with a hand. A while ago, there were some people at work who give me a weird look or even laugh, which added me stress. I even wished that if the company laid me off, it would be a windfall that I could live with the severance pay for a while and I could just focus on recovery. But overtime, most people at work seems to just accept me as I am, which reduced some of my stress. People are polite enough that they don’t ask what happened to my neck. If anyone laugh at me, that’s their problem, not mine. I like your expression, “uncomfortable muscle cramps” :)

            With CD, I’ve been always thinking how I can walk less. The garage in my work building charges so high (perhaps around $600 per month) so ordinary people park 2-3 blocks away and walk, which ends up even more walking (and it’s in a slope).
            Walking during lunch time is my choice but I just can’t resist myself – it’s really nice to explorer farmers’ market and ethnic restaurants, which remind me of traveling, which I can’t do now because of CD.

            I know that walking won’t help unless do it properly. But at the same time, I now lack regular aerobic exercises since I can’t go to zumba classes or swimming pools because of CD. So from this viewpoint, I think it helps maintain my health both physically and mentally. It sounds crazy but I clime long stairs at faster pace most of the time. I’m wondering how you and other CD’ers do with aerobic exercises?

            After all consideration, the best thing may be to change the job with less stimuli (on-site parking, etc.), but I don’t know when this can happen. Another consideration is getting Botox for a short period of time. With combination of STRC exercises and discipline, I think that would help faster recovery with less suffering, especially to cope with work life, and also because I’ve already worked on many things as best I could (STRC, etc.). No financial stress as my insurance covers it (it’s ironic – almost NO alternative treatments are covered by insurance). But it will usually take 6 months since neurologists in this city who specialized in this area have too many patients that waiting time for an appointment is usually 3 months or more, so I still have a lot of time to consider.

            Thank you for your consideration and advice!

          • Hi Dolphin, thanks a lot for clarifying these points. I appreciate your situation and can see how you find ways to organize your life and get better at the same time. As for exercise, at this moment I stick with STRC (plus some Qi Gong, Jordi, etc.), but that is about it. No swimming, no hiking, no cycling, etc. I walk just small distances when I really have to. Sometimes, when I feel good, I do some karate, but at low intensity.
            Botox… What can I say? Some people seem to benefit from it, but many don’t get much relief from it, apart from the side effects. If it will take you such a long time to get a first appointment, you might just as well forget about it, because in 6 months time you will be better than you are now – provided you do your excercises regularly and take enough rest. If I were you, I would also change my work situation, e.g., by application of the law of attaction. Take care!

          • Hi CCD,
            I know you are anti-Botox – please keep discouraging me about it. If I still decided to do, I’ll have another stuff to report on this blog with the result of the experiment :)
            I know I need enough rest since I’m a chronic short sleeper for decades (except recent weekends), which is bad for CD. It’s challenging as life has always so many interesting things to d , in addition to routines.
            You may like to do karate, but I think it would not be good for CD even with low intensity until you get cured completely… Cowan’s book says that any sports that stress the upper part of the body (fencing, etc.) is not recommended for one with neurological disease (perhaps STRC would agree, too).
            I’m curious – when you do Qi Gong, do you acknowledge the meanings of each movement? I’m not very familiar with it but I think that brings different effect in practice.
            Thanks again for reminder about the law of attraction! I’lI pay attention to the words I use. I like the easy-to-follow approach of Losier’s book (yet halfway through).

          • Hi Dolphin! Well, I am not completely against the use of Botox. Personally, as long as I can avoid it, I will. But I think it can help some people to accelerate their recovery. Provided that it is only a temporary support and not a structural solution, it can be a good idea.
            And yes, many people will agree that practising karate might not be a good idea. But I am self-willed, and I will do whatever feels good. Actually, last winter I went skiing, completely against the advise of STRC. It was great!!! Meanwhile, I have received big mental and physical shocks. And I am still steadily improving. I think it is all a matter of listening to your body. If the body tells you it’s okay, then why not?
            I think the key to Qi Gong, AT, FK, Jordi, etc., is the deliberate movement, the awareness, the mindfulness. This allows to get in touch with the body…

          • That’s true, CCD – as far as we listen well to our body and feel comfortable, we don’t have to restrict ourselves too much with activities and we don’t have to put off fun things during the long process of rehabilitation (life is short!). And yes, awareness and mindfulness are the keys when we do any exercises, especially we now know (almost) what we suppose to do, thanks to the STRC, Jordi, etc.

        • Dolphin, I wish you the best of luck with getting the new job, it seems that it will be a much better situation for you. I would also like to try another type of job, but presently don’t have the courage to go on interviews. My main problem is talking (especially for extended periods of time) so interviewing would be very difficult. Because of this, I am doing some speech practice every day now (thus “reading signs aloud” in the car). I can really connect with the social anxiety issues that you have, I have experienced the same. I find it actually worse if I discuss my CD with people so I just keep it to myself, though I am sure it is obvious that something is not right. But as CCD explained, worrying about what other people are thinking is only a recipe for disaster. It is much easier said than done to give up those negative thought patterns though. I struggle with it every day, and am really trying to be more aware of when the negative thoughts are starting so I can quickly change them. I think practicing with a mirror is very helpful. This was very hard at first to even get myself to do this! But it allows you to realize that the outward appearance it is actually not as bad as you imagine in your head. You mentioned possibly starting botox. This may help you, although be careful not to let the temporary improvement in symptoms that you get to allow yourself to get lazy with your day to day exercises, etc. This was my problem with it and the reason I decided to stop. It is a quick fix, but since it doesn’t last that long, it can also be heartbreaking and lead to more despair. This week, I have been reading a book on the Alexander Technique. The technique makes a lot of sense to me and it really seems to fit in well with what we are trying to accomplish. I plan to start incorporating it in to my routine. Thank goodness for this blog or I may have never learned about so many of these things that are really making a difference in my life!

          • Thanks, Carrie. I’m glad that I could share about the struggle at work with you. I haven’t talked about CD to anyone at work (even to my boss). This bloc is the only place I can really speak up about CD and relate to others how to deal with it.
            As for the job interview, I actually thought several times to cancel it until the last minutes as I felt (again) embarrassed. But I went there anyway and glad I did. It wasn’t a match, but it was a good opportunity for practice and observing different environment. The challenge is that there were not so many jobs out there now as in six years ago (and I’m also a career changer), but I’ll keep looking.
            I know how it likes practicing speech in a car as I did the same years ago but for the different reason – as a second language. English is very different from my native language (different way of using mouse muscles and tongue positions), so some words are so difficult to pronounce (and didn’t find a “right” practice tool until years later) that it took perhaps hundreds (if not thousands) of practices over the years until I finally got it right. So this experience also encourages me that practices like Jordi’s will work with persistent repetitions.
            I agree that exercising and practicing front of a mirror is very helpful. I check my posture with a mirror whenever possible to correct my distorted perception.
            It’s good to hear negative things about Botox, which can discourage me doing it :)
            Great to know you are reading about the AT – it helps even just knowing how to use our body properly. I believe the AT is actually very good for preventing from recurring after the CD recovery.
            Take care!

        • Hello Dolphin,

          I just read this morning your post about your working situation. That must really be very difficult day after day. That must cause a lot of stress, which is very bad in our situation. But sometimes we don’t really have a choice (OK, we say that we always have the choice, that we are the tailors of our own destiny…all that sounds beautiful, but in our all day life sometimes reality is cruel and not phylosophic at all) I really hope for you that you will find a better job, with more privacy area. I’m happy for you that at least while eating you can find some positive feelings.

          I exactly feel the same way then you, when I trie to explain to somebody without cd what my problem is. Then I feel my head glows, I’m sweating, my voice is changing (even when I trye to explain it to kids which come to play first time at my home), and after that I always feel worse, stupid and embarrassed. It’s so hard to understand why this illness is so full of emotions. Other people often don’t understand why this “little” neck problem takes such a big place in our thoughts, emotions in our soul. I know people with much bigger health problems and they don’t think at it from the first to the last minute in their day. That makes me often angry, because it wastes too much of my energy which I could need at other places.

          To manage my working time I had also to do some changes. Normally I see 4 patients in an hour, normally I took no break between them. Now I take 2 minutes between patients , even if I am in a hurry and try to relaxe and to breath deeply. I stopped doing 24hours emergency service, because after 24h working I needed 3 days to recover.

          Concerning botox, the first years of cd I always refused it. I thought that the main reason for me was that I really knew what botulisme looks like, and that I was afraid of that. But I think that deep inside of me the reason was another. For me Botox was the ultimativ way out of that nightmare, the last possibility, solution, and what would I do if it won’t help me? It would be the great big whole with no way out. So when I accepted botox after several years in my brain I was so negative against it. There was no chance for botox, because a great part of me completely refused it, it didn’t work at all for me, nothing, no positive and no negative reaction, simply nothing. I tryed again and again, nothing. Now with STRC program I felt better, and I thought that it could help better with more relaxed muscles, so I opened my mind to botox, got injections and felt for the first time a real difference.
          Don’t misunderstand me, I do not want to tell you that you have to take botox. I just tell you if you ever decide to do it, do it with a positive feeling, open your mind and agree that it can help you! and not that I surely will bring you nothing. (sorry it’s difficult to explain in english what I really think). If it takes 6 months to get an appointment you might take it now, continue your exercises, mind work… if you will be better in 4 months you just have to cancel the appointment.

          sunny greetings from the old continent

          • Hi Amelia,
            Thank you for your kind words.
            I think my CD triggered mainly for career-related matters, so I also take it that I had a calling for changing my destination from where I’m now to somewhere I want to be (job, location, and other aspects of my life). Perhaps, the career change I prepared for five years wasn’t a good decision. I still don’t know it but I have so much to think about through trials and errors.
            I’ve read your previous postings that you have went through so many things during many years while having CD, and gradually brought you in a better place, which encourage many of us.
            I don’t think one (even the most caring person) can really understand this little known neurological disorder without actually having it, so I basically keep it for myself.
            After nearly five months of the CD rehabilitation, mainly STRC exercise and tools, and a lot of reading, my posture is improved, I eat even healthier, my thinking is more positive, so I’m now better to cope with it, but CD symptoms doesn’t seems to be reduced for the time being. One thing I’m intuitively certain is that if I can improve my thought process to the way that is more resilient to outside stimuli, my symptoms will be reduced.
            I think it’s a good practice to take frequent short breaks and deep breathing even when in a hurry – I try to do that at work but I hope to have those breaks more.
            24 hour emergency service sounds hard even for perfectly healthy people, so it will be extraordinary hard for CD’ers. I’m glad you are no longer with that position. As STRC suggests, surprises are not good for us, and we need a regular rhythm in our daily life.
            Thank you for sharing your Botox experiences (I understand all what you mentioned). It is very interesting what your experienced. I’ll keep in mind what you suggested.
            Lastly, congratulations on the royal wedding in Luxembourg! They are cute :)

  32. Hi Carrie

    I have been coping with cervical dystonia for 2 years. I worked as an administrative assistant for over 30 years. These last 2 years have been very hard for me. I find I now have very low self worth. After working for so many years and helping with the bills I find it hard. I found that my driving is significantly challenged. I can’t keep my head straight and need to hold my head with my right hand cupped behind my neck so it will stay straight. So basically I’m driving with one hand. I would love to get back to work, maybe not full time but definitely part-time. I find the winters so so long. You see I live in the country and for me to go anywhere I must drive. I can not longer walk without cupping the back of my neck as well. If I do drive or walk for any extended period my neck is so sore by the evening I just want to lay back to drink a whole bottle of wine! Ok…so much for my going on. I am very glad for you that someone with CD is still able to function. You are a very strong women and I admire your courage.

    • Hello Beatle 1960 (Doplphin, Carrie, Sunflowersprout ;) ) and all of you,

      for you beatle 1960
      I’m 43, my kids are 6, 9 and 12, I’m a veterinary and I am working 20 hours/week, and have to drive 1 hour to get at work. Same as you I live in the country (and I’m very very happy about this). CD started when I was 29, I was pregnant and almost finished with university. I had no job, I was scared because I didn’t know if I would be able to be a mother, I nearly stopped completely driving car, go out and see people. I thought life is ugly and that I was a poor little thing. A 10 minutes car drive to the doctor with my baby was the biggest stress I could effort… :(((( CD was getting worth and worth.

      And than everything changed. A lot of things happened but especially a job found me! And from one day to another I was able to drive 1 hour to bring my kid to my mother, went to work, took my kid again and drove home. OK at the evening I just wanted to lay back (as you ;) ) ; followed kid 2 and 3 and a better job, a new husband……
      So you will see it will go better and better, because your body and your mind will get stronger. Please don’t give up, I really really know that it is hard. We all have different stories, but we all have suffered a lot… and a low self worth feeling is a heavy duty. I still have a lot of work and a long way to do. I hope it can help you to see that really a lot of things are still possible with cd. perhaps not as fast and not as far than before, but possible

      take care you are not alone

      • Hi Sunflower, Amelia, and Beatle1960,

        Sunflower – For the time being, I don’t have courage to go back to gym as you do!

        Amelia – Thank you for sharing your encouraging story!

        Beatle1960 – As Amelia mentioned, don’t give up! Many people (including strangers) may be more understanding and sympathetic than we originally think.

        • Hi everyone,
          Firstly, Amelia so nice to have you back!

          Dolphin thanks for saying that, but your work life is much harder than going to the gym for a half an hour every other day. You have long days everyday, You have remarkable courage and strength and imagine what the possibilities will be for you/us once we are recovered, after having gone through what we face now daily.

          I was embarrassed the first couple of times doing the head harness at the gym, but after that it becomes easy. And the added bonus is I no longer have to beat men off with a stick, they take one look at the military and the head harness and they run the opposite direction! ;)

          I will explain what helps me walk now if you are not already doing this. I try to concentrate on relaxing my body, I swing my arms and move my hips like I am free. when I am doing this and I am relaxed and thinking good happy thoughts, walking becomes so much easier and my neck all of a sudden will relax and won’t pull so hard.
          This does takes concentration so it will be harder if you are in a hurry commuting or talking to people.
          You are very fortunate to be able to drive easily!

          • Hi Sunflower, it’s good spirit at the gym! Thank you for the advice. I tried (when I’m not in a hurry) the walking you mentioned, but it’s very challenging for me for the moment – I’m not there yet. I’ll keep trying, as I feel what you are doing about walking is right and natural. It seems like you are certainly improving. Perhaps the gym work and other disciplines are paying off!

    • beatle1960, you are a strong women too! Anyone who copes with CD day in and day out is strong. I have also had CD for a little over two years. It was basically running my life until just the past few months. It was what I thought about from the moment I woke up until my head hit the pillow. We simply have to learn to change these negative thought patterns though or it will always rule our lives. It takes an enormous amount of practice though and I expect the healing journey will continue for the rest of my life. The exciting thing I have figured out though is that all of these things that all of us on this blog are working on will not only help with CD, but they will help us overall to become more peaceful, healthy, and confident people. I encourage you to really take the time to read through the blog thoroughly and start to try some of the techniques that are working for others. Maybe just one or two to start, but be diligent, don’t miss a day! And it doesn’t mean that you have to see a doctor or therapist, if you can’t manage it. I have actually given up completely on the traditional medical doctors and am only practicing alternative techniques on my own by researching books from the library, the internet, and this blog. You don’t need a doctor to tell you what muscles are your biggest problem, you only need to listen to your body and then really focus on releasing the tension from those muscles. I am by no means trying to simplify this process, I know it is extremely hard, but you can do it. Working on CD is really helping me to give up the bad parts of my life and my bad habits and to get back the good parts. Stay in touch!

  33. Hello. I would be greatful to hear from you. I live in Sweden. I wonder how long time did you stad in Korea and did the treatment helped you. I am suffering from CD and I am really so tired of this awful illness. Please answer me….is it a good idea to go to Korea and how long time do I have to stay. Hope fot an answer.
    Greetings from Lilian

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>