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  • Dancing with Dystonia

    Posted December 2, 2012 By in Blog With | No Comments dancingwithdystoniabanner2

    What is Dystonia?

    Dystonia is a malfunction of the part of the brain (basal ganglia) that controls different muscle groups. It is a movement disorder that causes the muscles to contract and spasm involuntarily.

    The neurological mechanism that makes muscles relax when they are not in use does not function properly and opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part.

    These involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of Dystonia, and dozens of diseases and conditions include Dystonia as a major symptom.

    There is also thought to be a link with Parkinson’s which originates in the same part of the brain (basal ganglia).

    Watching this interview with Michael J Fox (who also suffers from Parkinson’s) as talks about his facial Dystonia, I felt huge admiration for Michael’s courage in sharing his story in such a public way. I am very grateful to him for doing so, as he has given me the confidence to stand up and begin sharing my own story.

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    The Numbers

    Unbelievably, there are more than  70,000 known sufferers of Dystonia in the UK alone – the same number as Clinically Obese people – and yet very few people have ever heard of this chronic condition that affects so many lives.

    There are also many thousands of others who have been misdiagnosed due to the current lack of knowledge about Dystonia.

    In North America there are known to be 550,000 people diagnosed with some form of Dystonia; although it is believed that the real figure is more likely to be in the region of 1,000,000.

    That is a huge number of people to be suffering from a condition for which there is currently no effective treatment – or hope of a cure – from a medical establishment that really knows very little about the condition.

    Funding is also very limited thereby affecting the amount of research taking place. The main reason for this shortage of funding is a lack of awareness. 

    Dancing with Dystonia – My Story

    My personal Dance with Dystonia began in 2008 whilst I was working in Europe. My position as head of a team of operations staff carried a great deal of responsibility and often required a great deal of hand written work.

    During the first week in my new role, I noticed that I was beginning to experience problems holding my pen. It kept slipping out of my hand and across the page, requiring me to re-write many pages of work.

    As this began to occur more frequently, I became very self-conscious as I couldn’t understand what was happening – or what I could do about it.

    My hands continued to misbehave for the next couple of weeks before beginning to ache like crazy. I would awake in the mornings with both hands curled into a ‘claw like’ grip and it would take best part of an hour for them to uncurl.

    I was unable to lift the kettle to make a cup of tea, get myself dressed – or even wash my hair. Basic manual tasks were almost impossible until I regained some sort of control over my hands and the reflex spasms that were causing me to lose my grip on simple objects.

    During the day, my hands would begin to shake and I would have to walk away from my desk and do another task before my colleagues began to notice the spasms and start to question my ability to do the job.

    I was becoming very distressed, particularly as hand-written creative writing is one of my passions and my growing inability to write more than a few words was beginning to rob me of one of my greatest pleasures and joys in life.

    Obviously something wasn’t right…but as the symptoms didn’t fit within my limited range of medical knowledge…I just tried to ignore them in the hope that they would go away.

    Sadly that wasn’t to be and over the next three months – as the discomfort and pain became steadily worse – I decided to return to the UK to be referred to a neurologist.

    The Diagnosis

    I was finally diagnosed with Focal Dystonia in November 2009 – a condition for which there is currently no known cure – and only limited options for treatment – most of which are pretty ineffective.

    It was the first time I had heard the term Dystonia, even though my younger brother had been suffering from Cervical Torticollis for the previous five years – a different form of Dystonia which causes his head to be permanently twisted to one side.

    Not once had I heard my brother refer to the condition as being called Dystonia, so it came as a real shock to find that we were both suffering from the same condition. He has now been in agony for many years as his body continues to twist and distort and pharmaceutical treatment has so far proved to be totally ineffective.

    It is hard to observe my brother suffering in this way and even though he tries to stay upbeat I can sense him smiling through the pain. I have so much love and admiration for his bravery in agreeing to be a ‘guinea pig’ for the medical establishment by giving his consent to try out new drug treatments for a condition they still know very little about.

    Sadly, none of these treatments – including the most common form of treatment –Botox injections – have had any beneficial effects and he has now drawn the line at subjecting himself to DBS – Deep Brain Stimulation – which is often offered to sufferers as a last resort due to risks involved in the procedure.

    We have also recently come to understand that our Mother’s long standing throat condition could be due to Vocal Dystonia.

    The On-Going Journey

    My personal journey with Dystonia has progressed since my diagnosis three years ago and the condition now affects my eyesight, my neck and right shoulder - and just recently my stomach muscles have decided to join in the dance!

    As I strongly believe that the body has the ability to heal itself, I have refused all offers of the same type of treatment as my brother, as it is my belief that a natural cure – or treatment – for this distressing and painful condition will be found in the near future.

    Since the diagnosis, I have been exploring a natural and holistic approach to managing my condition; whereas my brother has chosen to walk the pharmaceutical path – so far without any noticeable success.

    I am now on a personal quest to explore the many holistic approaches to self-healing with the intention of discovering a natural and non-intrusive approach to managing and ultimately finding a cure for this extremely debilitating condition.

    A Natural Approach to Managing Dystonia

    Having explored many different therapeutic forms of treatment, the most beneficial approaches I have so far found for managing and REDUCING the effects of my condition have been;

    1. The McTimoney Technique - a gentle Chiropractic treatment 
    2. Sound Healing – powerful healing sound vibrations, particularly with The Gong
    3. Reflexology sessions – combined with the use of a range of hand-made, aromatherapy based and kinesiology tested Natural Foot Creams
    4. Vegetarian Diet
    5. Homeopathic Treatment
    6. Daily Yoga, Meditation and Mindfulness - nourishing my body and mind with positive loving thoughts
    7. Researching and implementing the findings of some of today’s leaders in the fields of NeuroplasticityQuantum Physics and the Re-programming of the Mind,

    This includes the work of…

    Dr Joe Dispensza
    http://www.drjoedispenza.com/

    Dr David Hamilton
    http://drdavidhamilton.com/

    Dr Deepak Chopra
    http://www.deepakchopra.com/ 

    …amongst many others.

    With the amazing work these people are doing, my intuition tells me that their valuable research will ultimately hold the key to unlocking the mystery of Dystonia and other similar neurological conditions.

    Moving Forward

    It is my dearest wish to play a small part – on behalf of my brother, my mother, myself – and the millions of other sufferers worldwide – to raise awareness of Dystonia and to fulfil my dream of moving us all towards Dystonia Free Life.

    It is my hope that by continuing to share my story, someone else with a similar condition will be inspired to find the support and encouragement they need to take charge of their own healing and to improve the quality of their life in some way.

    After all, Miracles DO Happen Every Day!

    Dancing the Dance

    During 2013 I will initially be blogging about my on-going exploratory journey to find effective ways of managing my condition, before launching a not-for-profit organisation called ‘Dancing with Dystonia’ as soon as the support and the funding is in place.

    The organisation will share knowledge and the latest scientific research, as well as promoting a holistic approach to managing and ultimately - finding a natural cure – for this debilitating condition.

    It will help to build supportive online and local community groups, and provide an educational resource for those affected by Dystonia and other similar neurological conditions.

    THANK YOU – for reading this far – and for giving me the opportunity to share some of my story with you.

    I would love to hear from you if you know of any effective natural therapies - or treatments - for this condition…or of any other pioneering work being done in this field.

    If you would be interested in playing a supportive role in helping to create the new organisation, please email me at: julie @nakeddragon.co.uk and we can start the conversation!

    Or if you are affected by this condition, know someone who is…or would just like more information on the different approaches I am using to manage my condition, please feel free to contact me on the email address above and I will be delighted to help.

    A Little Reminder that The Dance resides in All of Us.
    Look out for the Dancing Sheep half way through this great video!

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    Support Dystonia this Christmas

    Naked Dragon’s special Christmas Concert with the Voice of 100,000 Angels – Lucinda Drayton – on Sunday 16th December, is being held in support of The Dystonia Society and MacMillan.

    If you would like to join us for this evening of beautiful music, please book your ticket asap as these are selling out FAST!

    Further details of this magical event can be found HERE

    We will also be holding a raffle on the night to raise additional funds. A full list of our fantastic prizes can be found HERE

    Further Information

    Further information about Dystonia can be found from The Dystonia Society

    http://www.dystonia.org.uk/

     

     

     

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