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  • margclough@gmail.com
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    Hi Margot

    Thanks for your response. I’ll resend my email to your correct address to avoid repeating myself.
    I have found the missing emails and yes, I have been in contact with JamesMcloughlin. He was very interested and actually initiated the contact. He was going to think about how to further the issue as I suggested maybe one of his Masters students could do a small study on the Cross Method.

    I’m assuming we need to have a research study first, as Dr Fung suggested that was the way to go, but maybe that’s the hard way. If we found a neurophysiotherapist interested enough to train or send a staff member to train then we could build up support for the method, keep meticulous records (including video for example) and a study could come later. However it’s really important that the method is implemented here in a rigorous way, sticking to the principles. If someone just ‘gives it a go’ the results may not be convincing and the whole thing would fizzle. It’s too precious for that.

    Thanks for Lynley’s email address. Pity she is going back to Auckland, but actually that may be a very good thing as I’m also in contact with a senior physiotherapist called Julie Rope from a Neurorehab in Auckland who has also expressed a great interest in the method.

    I think it would be a great thing if you could get the word out. I’m not familiar with the big picture as you seem to be. Certainly talk to James, to keep the issue active.

    I’m in the process of translating the little brochure from the Physio Centre in Germany, need to get it checked by a German scientist friend here and will post you a copy as well as emailing the translation, as soon as I can. But life right now is hectic with many things on the go, so it will be a week or two.

    Many thanks for your interest,
    Margaret

    margclough@gmail.com
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    Post count: 5

    Hi Margot
    Just replied with an email but will also reply here. I’ve talked to Melanie Boyce about the Cross Method in Germany, and will visit her next time I go to Sydney. She’s interested but too busy with her PhD at the moment to take an active interest.
    The German technique can be used for any of the many variations cervical dystonia, but as you say, you’ve had a lot of Botox and they find their results are not good when this is the case. They like to treat newly diagnosed people with cervical dystonia or those who have only had one or two botox treatments.

    I’m also wanting to contact Lynley Bradnam but don’t have an email address for her. She was interested earlier, when I first went to Germany.

    Kind regards,
    Margaret

    margclough@gmail.com
    Member
    Post count: 5

    Hi Julie

    Many thanks for your interest. I’ve had a long talk to Gabi, the physio here, and she would be most happy to communicate by email with you. Her contact is info@torticollis-behandlung.de. (In Germany and many European countries cervical dystonia is called torticollis.) She speaks pretty good English. She is concerned that the number of treatments needed for this condition may make it too expensive in Australia. IN Germany patients get the physio and massage through their medical system if they don’t want botox. Whereas in Australia people are funded for botox treatment I understand. It would be natural for many to choose this treatment over one that is expensive and requires an awful lot of hard work with exercises for months and often years. Although I assume people still have to cover the cost of regular appointments with their neurologist to get the injections, and that wouldn’t come cheaply!. Some people of course have no choice. Life without botox is simply unmanageable.
    The other problem is that most physios may never treat a person with dystonia, or only very rarely. So a practitioner would need to work in a hospital or specialist centre together with a group of neurologists where there are many more dystonia clients who might choose this treatment over the alternatives. That would be hard to achieve. I’m not sure how things are handled in N.Z.or how well your government provides for medical and physio treatments.
    If you can get some funding through your organisation it would not take long at all to learn the Cross Method. It would require an understanding of the principles which are different to the usual beliefs about cervical dystonia, and then ongoing contact with Gabi online to discuss which of the many exercises are best recommended for each individual, and how they might change over time as progress is made.
    My email address is margclough@gmail.com and we can discuss this further via emails.
    Very best wishes,
    Margaret

    margclough@gmail.com
    Member
    Post count: 5

    Hi Everyone. I am currently in Germany having two weeks of follow-up physiotherapy and massage for my cervical dystonia. My form of cervical dystonia is rare, and I was told when I first came that it was harder to resolve than the usual forms of cervical dystonia and would take longer. It involved a slow turning of the head to the left whenever I shut my eyes or lay down, or rested my head against the back of a chair. Sounds pretty mild compared to what a lot of people have to endure. But try falling asleep when you head won’t lie still, or goes into a cramp while your face is buried into the pillow! I’ve been doing my exercises and having frequent massages since my first visit here in 2015. I’m absolutely thrilled with my progress and can say the head turning is now so weak I hardly notice it. It’s only annoying if I get really stressed.
    I’ve made a commitment to get this treatment available in Australia, somehow. I’m talking to my neurologist, Dr Fung, at Westmead who has been surprised and very interested in my progress. He currently has no means of getting a research project underway, but I’m going to work on it once I am back home. It would be ideal for a physio who wants to do a PhD. but they would need backing from a neurologist or neurology clinic. Most physio’s only see one dystonia patient in their entire career. Some never have experience of it. So a program would need to be set up in a hospital or clinic where many dystonia patients can benefit. If a rigorous study could be done, then there might be a chance to train more physio’s around Australia. It doesn’t take long for an experienced physio to learn the ‘Cross Method’, but there would need to be ongoing contact with the people here as they say every case is different and the exercises and massage need to be tailored to each individual. Hundreds of patients have now been successfully treated in Germany and Europe, and for those who are German citizens it is covered by their equivalent of Medicare.

    It would help as a start to raise some awareness of this program, so mentioning it to your neurologist would be good. He/she will be sceptical, as they should, but I want to raise the possibility that there is less invasive treatment than botox, and that cervical dystonia can no longer be described as incurable in every case.

    margclough@gmail.com
    Member
    Post count: 5

    Hi there,
    I’m Margaret and was diagnosed with cervical dystonia three years ago. I am fortunate that I have no tremor, and the twisting in my neck only happens when I shut my eyes or lie down. That means it doesn’t affect me much during the day. However it’s really hard to get to sleep when you can’t feel relaxed. At night, the instant my head touched the pillow my head pulled strongly to the left and kept going until it was really painful. When I turned it back to centre it immediately started to turn again, relentlessly. I always woke during the night and then it was almost impossible to get back to sleep. So my main problem was terrible insomnia. Sometimes I would lie in bed and swing my head from side to side, very fast, just to get some relief. Sometimes I could trick my brain by lying on one side and twisting my head right around to the other side, so my brain would be confused and take a while to work out where I was. If I was lucky that gave me maybe 30 -50 seconds to get to sleep! But the twisting also affected many parts of my body. I had a really painful shoulder, my jaw was crooked so I often had pain and sometimes couldn’t chew for a few days. I had a painful foot, my back ached constantly, my knee was really painful and I spent a fortune on physiotherapy to fix things, which always got worse again. I also developed double vision which makes life very complicated.

    I react very badly to most medications so I was afraid I would also react badly to botox, and that reaction would last until the botox wore off. So I searched long and hard for an alternative treatment. I spent a small fortune with an alternate dentist and a mouth guard which made no difference. Likewise with osteopathy. Then I found a website in Germany and as I speak a little German could just manage to understand it. I learnt about the “Cross Method” of intensive physiotherapy which has been practised for well over twenty years where hundreds of cervical dystonia patients have been treated successfully with intensive physiotherapy. I made very careful enquiries, rang them, up and they sounded absolutely genuine. Germans can get this treatment through their version of Medicare, so I knew it was safe and genuine.

    I went to Germany in May, 2015 for three weeks of intensive physio, with a daily physio session, learning exercises designed specially for me, a daily massage and a session in the heated pool for underwater massage. You also spend time on a couch with a huge hot pack under your back or neck to relax the muscles that are being progressively loosened up. It was wonderful to be in a place where the practitioners know so much about dystonia and how to relieve it. I was told that if I did my exercises at least five days a week, found a good person to give me the right sort of massage on a regular basis and made some changes to the rather frantic lifestyle I was living, then I should get better. Totally. Almost all their patients do. They come back from time to time for a top up and to have their exercises adjusted as their body changes back to being untwisted and normal. I was told that my version of cervical dystonia is particularly hard to resolve and takes longer so I would need to be very very patient and not give up on the exercises.

    So now, two years later the twisting has gone from a really powerful pull to a slight one, my head only moves a few centimetres before the “pull” completely loses strength and I can relax my head back straight. I am at last sleeping well and that is sheer heaven. Instead of dreading bedtime I look forward to it again. I’ve just returned from a two week follow-up visit in Germany which was marvellous and I apparently have some more work to do to get rid of every single twist in my spine, before the head turning will stop completely. But my teeth meet together, I have no pain in my jaw, foot, knee, shoulder or my back. So I know I am getting there. It takes determination and I realise it is not for everyone. It is certainly not a ‘quick fix’ but it is entirely without drugs and that suits my body. No side effects to be suffered. The cost – not cheap to fly to Germany but once there the treatment is far cheaper than you would need to pay in Australia for comparative treatment. They also offer accommodation at a very reasonable price.

    My neurologist in Sydney told me at first I had spontaneous remission, but now he has changed his mind and is impressed. He says I have made him think and he will look into sending someone to Europe to have a look at what is practised over there. He is Dr Victor Fung from Westmead Hospital and in a good position I think to make that happen. I have told him I will hassle him until he does.

    My dream now is that other Australians with cervical dystonia will have the chance to benefit from this marvellous treatment in Australia. Clearly several trips overseas are out of the question for most sufferers because of the cost and the disabling effects of the condition, but a Centre somewhere in Australia would make it possible for many more to benefit. Sadly, they have found in Germany that their method does not work with people who have had a few botox treatments because the nerves are damaged. So far they have had little success with other forms of dystonia either, so they work only with cervical dystonia in all its many forms, and its side effects.

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