Yoga exercises to help dystonia

Kripalu Vinyasa from Kripalu Center on Vimeo.

Dystonia exercises

Dystonia gone!

This post discusses the actions I took in 2010 to treat my dystonia. Within 6 months of these changes, my neurologist, a specialist in movement disorders, confirmed that I no longer had symptoms of dystonia. 

Prior to beginning these treatments, I was diagnosed with:

•  Hemidystonia and writer’s cramp
•  Sjogren’s Disorder
•  Gastritis
• Hashimotos
• Tachycardia

I was taking the following medications

• Botox Injections
• Klonopin
• Tetrabenazine
• Physical therapy for use of my hand

My doctor also recommended prednisone for my other conditions, but I declined taking it. 

While I experienced some success with the medications and therapies I was receiving, the side effects were not improving my quality of life.  I felt desperate to find natural alternatives to the medications I was taking in order to reduce my symptoms and increase my quality of life.  

Dystonia Symptoms

The first thing I wanted to do was reduce my dependence on tetrabenazine. It was very expensive and caused me a crippling amount of fatigue. I rarely used my klonopin, except in extreme situations. It allowed some range of motion, but did so at the expense of my memory. I developed gastritis after a few rounds of botox, so at my doctor’s suggestion, that treatment was discontinued. 

Since tetrabenzine was the only medicine I still depended on, I began by researching how it worked. My basic understanding was that it reduced the amount of dopamine in my body. At the time it was an experimental medication for dystonia. After some time, I discovered that there was another therapy that reduced dopamine in the body- meditation. I began meditating for 30 minutes every day, as soon as I woke up. 

Autoimmunity

My neurologist believed that many of the symptoms not related to dystonia could have been attributed to my autoimmune disorders. I actually found out that I had these disorders by accident. While searching for the root cause of my symptoms, antibody testing revealed a lot of abnormal activity. While my doctor could not explain how dystonia relates to autoimmunity, she did suggest that there is a connection. 

There are many natural treatments for autoimmune disorders, but I decided to focus on diet. While I didn’t notice any difference in symptoms following certain foods, I was willing to change my diet to see if it would work. I decided on a modified Paleo diet that was low in inflammatory foods and high in healthy fats. 

Fatigue

When my symptoms were at their worst, I was sleeping up to 14 hours a day and not doing much activity. After a month of the new diet and meditation, I slept no more than 8 hours a day. I also made a daily habit of doing some type of physical activity. This included walking, tennis and swimming. I drank more water and got plenty of sunlight. Over time, my muscles began to relax to a normal state.

I continued this practice for approximately 9 months. After the first two months I had stopped taking all medication. After 6 months, my neurologist stated my symptoms had significantly declined. After 1 year, I was able to become pregnant and have a successful pregnancy. 

At times, my symptoms have re-appeared, but to this day they have not returned to the disabling state they previously were.

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Dystonia and diet

Research shows that diet may also determine neurological health. For dystonia patients, a healthy diet can help overcome fatigue, depression and physical stress resulting from constant muscle spasms and twisted postures.

Be aware of foods that are low in fat, sugar and salt. The most important aspect of your diet should be less Trans fats and Omega 6 fatty acids and more B vitamins and Omega 3 fatty acids.

Eat less meat and more plants. Replacing animal based proteins in your diet with plant proteins is easy. Dried cooked beans, soy products, and even nuts are good plant proteins.

Eat more raw foods and less cooked foods; at least nine fruits and vegetables every day.

Use good fats and less bad fats. Avoid too much Omega 6 found in snack foods and margarines and look for Omega 3 found in certain nuts, fatty fish like salmon or tuna, flax oil, canola oil, olive oil, kidney beans, and soy products. Omega 3 is the fat we are often lacking, but is the key to neurological health.

Limit milk to less than two cups a day. A large observational study for the American Journal of Epidemiology found that higher consumption of dairy products is associated with increased risk of Parkinson’s disease.

Eat plenty of B vitamins; fruits, vegetables, and whole grains are good sources. Be creative and use diverse types of grains. You may even consider vitamin B12 supplements.

Overall, we need to protect our bodies. Be conscious of what you do and put into your body. Understand that medications sometimes do more harm than good and know that your body is fragile. Healthy choices promote a long life, so take care of yourself and enjoy life however it comes at you.

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Dystonia can be cured

Ive been diagnosed with cervical dystonia 2 and a half years ago. I work in a medical field so trust me ive tried it all. Doctors cant really help you ive tried and botox did nothing for me. So for a past 6 months ive been doing my own research and i come to find out that my diet is what effects it. 

So month by month ive been trying to get rid of certain things out of my diet for exemple one month gluten free then dairy free. 

My best friend also was diagnosed with facial crainial dystonia and after 2 months of beeing on gluten free diet she is completely normal. 

Ive been doing this month gluten and dairy free diet and it made me feel 100 times better already, at least i can drive again like a normal human without holding my head. :) 

Next week im going to do MRT testing for all food sensitivities and i strongly recommend you guys to do the same. Its ugly, annoying disease but we can cure it. Im not going to give up and i hope you wont either. After all we are what we eat. Good luck . I hope this information could help one of us.

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Astounding results....

Joaquin Farias has spent the past two decades trying to understand dystonia, a confounding and sometimes debilitating syndrome believed to be the third-most-common neurological movement disorder, after essential tremor and Parkinson’s disease.

His work has been influenced by his own experience. As a 21-year-old studying to become a professional musician in Spain, he began to develop dystonia in his right hand. His fingers would involuntarily curl into a fist. Gradually, it became almost impossible to play the piano.

Doctors recommended only rest and muscle relaxants, dismissing it as a persistent condition of unknown cause. But determined to regain fluid mobility, he took it upon himself to relearn how to unclench his hand by inventing exercises, such as trying to pick up objects over and over. It took two years of tenacious self-training to, as he puts it, “move right” again. It took three more years to “feel right,” to perform those same movements without inexplicable accompanying feelings of emotional distress.

Dr. Farias, who holds a PhD in medicine and sciences applied to sport and exercise, has used these self-taught techniques to develop a cost-effective and drug-free way to rehabilitate others with the condition. His approach relies on neuroplasticity, the brain’s ability to rewire itself. Training clients to move again, he says, helps their brains learn to process motor and sensory signals normally again.

He has seen astounding results. Now an adjunct professor with the University of Toronto’s Music and Health Research Collaboratory, he shows no sign of impairment and has likewise helped hundreds of clients, including professional musicians and dancers.

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Rewiring through dance

Dystonia exercises

Yoga and dystonia

Animal models of dystonia

Based in part on some of the findings of altered learning in rodent models, a primate model of dystonia was developed. This model revealed that repetitive stimulation of fingers not normally stimulated together resulted in dystonic postures of the hand and sensory abnormalities. Using electrophysiological methods in the monkeys, the investigators found that the representation of the fingers in the somatosensory cortex was much more disorganized in the dystonic animals after the repetition training than before. This finding is further support for the idea that dystonia results from faulty neuroplasticity and that the electrophysiological mechanisms identified in the rodent may underlie the cause. Clinician-scientists have since extended this to human patients with dystonia and indeed, are finding similar sensory abnormalities in humans with dystonia as those seen in monkeys with learning-induced dystonia. The prevalence of focal dystonia in musicians and other professionals who perform repetitive movements is also consistent with the faulty neuroplasticity hypothesis of dystonia. Behavioral treatments of patients with focal dystonia based on these ideas of learning discovered and understood from work performed in animal models is being met with some success.

There is presently no cure for dystonia. Other than the behaviorally-based treatments used in focal dystonia, the treatments for most cases of dystonia involve drugs that minimize, but do not eliminate symptoms. Moreover, the drugs – those that influence the neurotransmitters acetylcholine or dopamine – used for treatment are often associated with uncomfortable side-effects. Botulinum toxin is used to alleviate symptoms of focal dystonia. The toxin acts to temporarily paralyze the muscles receiving the injection. This helps reduce and even eliminate the sustained muscular contractions and therefore the pain, associated with dystonia. Of course this treatment is temporary and requires repeated injections to maintain effectiveness.

A recent surgical treatment that is being explored for severe cases of dystonia, in which traditional medical therapies do not work, is called deep brain stimulation. In this procedure, stimulating electrodes are placed within the brain at selected locations. The electrodes are attached to a connecting wire that runs from the top of the electrodes in the scalp, behind the ear, down the neck and then attaches to a battery pack called a pulse generator that is implanted under the skin just below the collarbone. This pulse generator provides a constant source of electrical stimulation to the targeted brain region and acts like a pacemaker for the brain, roughly akin to the way pacemakers operate to control the rhythmic activity of the heart.  The video below illustrates on such treatment case.

How did it come about that stimulating the brain with electrical current could alleviate symptoms of disease? After the discovery, using frogs, that nerves and muscles were electrically excitable by Luigi Galvani in 1791, other pioneering researchers began to stimulate the brains of humans and animals using electrical current. Prior to Galvani’s finding, the idea to do this would not have even occurred to anyone. Most notable of the work based on the findings of Galvani, is the work around the same time, of Luigi Rolando, Pierre Flourens in humans and Eduard Hitzig, Gustav Fritsch and David Ferrier in dogs and monkeys. These pioneers discovered that they could use surgical procedures to introduce small electrodes into the brain and provide electrical current to surface and deep brain regions. They also discovered that passing electrical current into the brain influenced behavior and had little side-effects. Victor Horsley and Robert Clarke invented the stereotactic method for neurosurgery. Their method improved considerably the surgical technique of placing electrodes into the brain. Their invention was published in 1906 and is still in use today for human and animal neurosurgery with only slight modifications. Using animals such as cats and monkeys (Walter Rudolf) and a famous bull (Jose Delgado), scientists went on to develop the technique of implanting electrodes into the brain permanently to stimulate deep brain structures. These scientists showed for the first time that electricity could be delivered to the brain of animals and could alter the behavior of the animals, all while the animals were moving around freely. This brought the technique out of the confines of the surgical theatre and opened the door for the possibility of using chronic, deep brain stimulation to treat humans with disease.

In the early 1980s, Irving Cooper boldly introduced electrical stimulation of different regions of the brain in an effort to relieve the symptoms of dystonia in humans. Without the work of scientists such as Ferrier and Delgado showing that the method of electrical stimulation was efficacious and safe in animals first, it is unlikely that Cooper would ever have thought to do this in humans. Initially Cooper targeted areas in the brain such as the internal capsule and the thalamus and indeed, his patients found relief.  Today, deep brain stimulation is used to treat symptoms of dystonia although the regions of the brain are different from those targeted by Cooper. The reason different brain regions are targeted is also based on the confluence of experimental work in animals and clinical work in humans. For example, anatomical work in animals provided scientists and clinicians with a much more detailed wiring diagram of how different brain regions are connected and interact. This has led to the refinement of electrode placement in patients. The clinical experience of surgeons together with detailed follow-up of the outcomes of surgery provides further refinement of electrode placements. Animal studies demonstrated that the effects of the deep brain stimulation propagate throughout the entire basal ganglia-thalamo-cortical system. This appreciation led directly to human studies investigating other potential targets for deep brain stimulation such as the globus pallidus external division and the putamen. Indeed, knowing whether or not the influence and efficacy of deep brain stimulation is due to stimulation of neuronal elements local to the stimulated target or at some distance simply cannot be addressed in humans. Studies such as these with animals, mostly non-human primates, are continuing to provide insight and possibilities into alternative brain structures to target that may have better efficacy or reduced side-effects.

A second area in which animal research has had direct benefits to humans is in understanding how deep brain stimulation works. The original theories about how deep brain stimulation resulted in beneficial effects were based on clinical experiments in humans alone.  Surgeons compared the effects of deep brain stimulation to those of effects of destructive lesions of the same brain areas, such as pallidotomy and thalamotomy.  Based on these comparisons, high frequency electrical stimulation was thought to inhibit or suppress the brain regions that were being stimulated – just like the more permanent lesions would do. Whereas, low frequency stimulation was thought to electrically excite the brain areas.  Thanks to animal research, we now know that this is not the case. Animal studies, including some from our laboratories, demonstrated very clearly that certain neuronal elements were activated with high frequency electrical stimulation.

One powerful example of the confluence of human and animal work that is bearing fruit is to study patients who have received deep brain stimulation treatment to understand the pathophysiological changes in the brain. In this way, abnormal neuronal signatures can be used in the development of animal models of dystonia in the future. We are taking such an approach in our work. In the Basso laboratory we study how the basal ganglia and one of its target structures, the superior colliculus contribute to how we make decisions about where to look. We are particularly interested in how these decisions are made when sensory information is unavailable or ambiguous. We use non-human primates as a model because the brain regions responsible for vision and eye movements are very well-studied in this species and are very similar to those in humans. Indeed, a large amount of the functional magnetic resonance imaging work performed in humans has confirmed the findings discovered in monkeys over the past 30 years. We have found that monkeys will rely on their previous experience or memories to help guide their choices when sensory information is ambiguous or uncertain. We are actively searching for electrophysiological signatures of these processes in the brains of the monkeys. As a next step we are asking, do patients with disease have difficulty making decisions when faced with uncertainty? As it turns out, our preliminary data suggest that patients with the movement disorder Parkinson’s disease do have difficulty making choices when faced with uncertainty. When sensory information is available to guide the decision, the difficulties are less apparent. We are hoping to test patients who have had deep brain stimulation implants soon to assess whether this treatment improves the cognitive symptoms.

Parkinson’s disease is a neurodegenerative disease that results in profound movement symptoms and involves the basal ganglia. Dystonia is different from Parkinson’s disease most notably because dystonia is not associated with neuronal degeneration. Nevertheless, dystonia shares some significant characteristics with Parkinson’s disease. For example, some patients with dystonia show rigidity that is common in patients with Parkinson’s disease. Some patient with Parkinson’s disease show focal dystonias such as blepharospam, a sustained contraction of the eyelid closing muscle. In some patients, the blephparospam can be so severe that the patient is rendered functionally blind. Thus, based on work developed largely within cognitive neuroscience in the non-human primate model, we are planning to extend our cognitive studies to patients who have dystonia and who are being treated with deep brain stimulation. Our goal is to assess the cognitive symptoms seen in these patients and to assess whether deep brain stimulation influences these processes. We can then go back to the laboratory with answers from our human work to explore the development of a monkey model of the cognitive symptoms seen in movement disorders.

As another example, Montgomery is revealing the pathophysiological properties of the human brain circuits in basal ganglia diseases like dystonia and Parkinson’s disease. By extending to humans sophisticated, electrophysiological and statistical techniques that were developed in animals, Montgomery is recording the abnormal electrophysiological signatures of the brains of patients while they are undergoing surgery for the treatment of their disease. These experiments shed light on how the physiological properties in the brain go awry in disease. Most interesting will be to then compare these unhealthy electrophysiological signatures from human brains to those from healthy non-human primate brains to uncover mechanisms of symptoms.

There is still a great deal about dystonia and its treatment that we do not know and it is only with the continued confluence of animal and human neuroscience do we stand a chance of unlocking the mystery and providing relief for patients who suffer from dystonia.

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Neurorehabilitation dystonia

We are at the beginning of our journey to better understand the origins of cervical dystonia and better formulate an individualized comprehensive treatment program for each person.

In this and subsequent ST/Dystonia bulletins, I will highlight some of the key elements from the program presented by Dr Joaquin Farias at our Chattanooga ST/ Dystonia symposium and from his e-book :  Limitless . This will then be correlated with what other researchers have discovered about the cause and treatment of dystonia.   

Much of the impetus of exploring this new vista of therapy has been through the vision and research of Dr. Farias from Toronto .   At the symposium in Chattanooga, he outlined his principles of promoting neuroplasticity for rehabilitation of dystonia.  It has been through his over 20 years of research and personal observations of those with dystonia that he has developed a program  to promote  cerebral neuroplasticity for rehabilitation of focal dystonia .

Please read carefully the spectacular article in this bulletin by Sheri Caruso on the text of the discussion by Dr Farias.  She has captured the key points that he made that were difficult for those in attendance to assimilate at the time due to the amount of information presented and logistics of the room.  As you can see, this is going to be an ongoing study of these difficult concepts that will result in great rewards for those suffering with dystonia who are willing to commit the time and effort to do so.

It is becoming increasingly clear that the underlying basis for cervical and other forms of focal dystonia is a disruption of the balance between the excitatory and inhibitory circuits in the brain. It is the intent of the therapy for dystonia to precisely stimulate neuroplasticity  of the pre-frontal cortex in such a way to reactivate the inhibitory circuits that will result in rebalancing of the energy outflow to the muscles.

It is a natural phenomena that our brains operate every moment in a highly precise system of activating the  muscle function that is needed for a specific task while suppressing other movement that is not necessary.  It appears that in the brain of a person with dystonia, localized inhibitory circuits have been suppressed leading to an excessive amount of energy being delivered to specific groups of muscles by the unchecked excitatory circuits.  The specific muscles  that are abnormally activated and the degree of activation can be unique to each individual.

This disruption in cerebral outflow balance appears to have occurred because of neuroplasticity gone wrong.  Neuroplasticity is defined as the brain’s ability to reorganize itself by forming new neural connections in order to adjust its function and structure in response to life experiences.  For years I have spoken at our ST/dystonia symposiums and written in the Bulletin about what a person can do to stimulate neuroplasticity for therapy for dystonia and for brain health.  I have emphasized the need to do this through  physical exercise and exercise for positive  thought and attitude.  In a sense we are trying to reprogram the brain with good neuroplasticity to overcome the bad neuroplasticity that caused the dystonia in the first place.  The origin of dystonia may be that the susceptible  brain developed a  plastic response to some stimulus  that caused a dysfunction in the inhibitory circuits.

This is consistent with the conclusions from other dystonia researchers. It is the position of the Dystonia Medical Research Foundation that  “brain maladaptive plasticity is at the core of dystonia pathology.”   

Dr. Mark Hallet  is one of the leading researchers of dystonia at the  NIH.  He spoke at our ST/Dystonia symposium a few years ago on the complexity of cerebral circuitry abnormalities in dystonia.  He recently wrote that “there are abnormalities of central nervous system inhibition in dystonia.  The problem lies in the brain’s ability to appropriately apply the brakes to functions that must be suppressed for normal movement to occur.”

Through his 20 years of research on dystonia, it has been the conclusion of Dr Farias that it is in the prefrontal cortex where this loss of inhibition occurs.  It is the prefrontal cortex  of the brain that is the  primary target of this form of therapy.  The prefrontal cortex is the region that puts limits on motor function and emotions. The prefrontal cortex is located at the very front of the brain right behind our forehead.  The prefrontal cortex can be considered to be the control center of the brain that regulates our behavior and our movements..  It is through the prefrontal cortex that impulsive socially inappropriate actions are inhibited. It helps us make appropriate decisions for our behavior and movement. Fear can cause the loss of the controlling ability of the prefrontal cortex producing impulsive thoughts and actions. Dr. Farias commented in his lecture that fear is a common emotion in those with dystonia.

This control by the prefrontal cortex happens both consciously and more often without our awareness when it comes to controlling the precision of our movements.  This  process in our heads is a phenomenon that is continually occurring every moment in time and  results in the inhibition of movements that are not needed and activation of the muscle activity that is  needed to produce the most efficient and precise movement of our bodies .  Unfortunately, in those of us with dystonia, this inhibitory process has lost some precision resulting in an excessive amount of motor energy being delivered to individual muscle groups.

The secret  for us to discover is what each individual person needs to do to regain this balance to result in a cure or at least a better control of your focal dystonia. It is the approach of Dr.  Farias to regain this balance by promoting neuroplasticity changes at the prefrontal cortex level that is the source of the dystonia pathology and regaining the normal inhibitory action.

It is the approach of most other practitioners treating dystonia to treat the end result of dystonia by suppressing the excessive excitation of the muscles through medications that modify the
excitatory chemicals (such as glutamate) or through deep brain stimulation to modulate the excitatory impulses or through injecting botulinum toxins at the muscle level to suppress the over activity.  It is certain that each of these will continue to be a necessary part of the treatment of dystonia but we can take it a step farther.

It is the approach of Dr. Farias and it has always been my approach that the best results are achieved by a comprehensive program of dystonia treatment  that also utilizes the power of what a person can do for themselves through properly designed exercises , positive attitude and exercises of healthy thinking that promote the neuroplastic changes at the very source of the dystonia pathology.
Dietary factors are also of utmost  importance ( see the article in this bulletin by Joan Hogan RD on diet suggestions for a healthy brain.)

In my 35 years of treating people with dystonia and 27 years of treating people with botulinum toxins, I have learned that the people with dystonia who do a demanding form of exercise and have a positive attitude toward life respond better to standard treatment of dystonia and cope better with the disorder.  It has been more recently recognized that these benefits are occurring through the basis of neuroplasticity of the brain.

It has been difficult for many treating dystonia to accept these concepts because that was not the way they were taught in their training.  As Dr Farias points out in his book, Albert Einstien once said ‘The greatest impediment to my learning is my education.”  It is the hope that everyone can learn to  accept that there is much to learn by  blending the treatment approaches from all credible research disciplines.  

You have already been practicing some of the key tasks along the way to promote pre-fontal cortex plasticity if you have been following the “10 steps to optimal dystonia treatment “ that I have lectured on at the ST/Dystonia symposiums and are listed on the web sites for ST/ Dystonia ( www.STDystonia.org    ) and Puget Sound Neurology (www.psneurology.com)  .

These principles have also been enhanced by the rejuvenating yoga practice for dystonia as demonstrated by New York Yogi Patrick Hogan at each of the Sunday yoga sessions  at  our annual symposiums and on his DVD “The journey of Mind and Body Integration” available by joining ST/Dystonia.

The exercises promoted by Mikki Townshend PhD RPT in her articles and at our symposiums have been of great help to the many that make them a part of their life.

Dancing for dystonia has been promoted by Dr Farias and has been a successful program for many of my
patients but that far too few take advantage of.

Discovering your inhibitory stimuli that have been called “sensory tricks”  and using them for treatment will also become an integral part of the therapeutic reprogramming program .  I invite anyone who has discovered unusual sensory tricks to send me a note  describing what you have observed: Hoganpsn@aol.com

We will now be embarking on a personal journey to putting these skills to work for neurorehabilitation of your dystonia. I will further elucidate in subsequent articles in our quarterly bulletins on more specifics on what you can do and what Dr Farias has discovered for rehabilitation of dystonia.  This will all be in preparation for our  ST/Dystonia symposium at Providence, Rhode Island next Fall when Dr Farias and others will hold another pre-symposium work shop to advance our knowledge in these concepts another step forward.

HoganPSN@aol.com

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Neuroplasticity and Dystonia

Focal Dystonia is a disorder characterized as excessive energy going from the brain to specific muscle groups whether it be the muscles around the eyes, jaw, neck, hands or a combination of these. The cause of this over activity is always the underlying question.  There are those with a definite family history that have an obvious genetic trait leading to dystonia. There may be an unidentified genetic trait in many others that predisposes people to the onset of focal dystonia when their brain is triggered by some activating stimulus in life. In all circumstances, a specific overactive circuit develops that leads to isolated muscles becoming overstimulated resulting in involuntary movements and pain. For whatever reason, there is a group of neurons (brain cells) that begin to fire off overactive impulses to specific muscles. It is a well-used phrase that “neurons that fire together – wire together” meaning that when this group of neurons begin to fire off excessively, they wire together in a circuit to perpetuate that abnormal activity from that time on resulting in a person having to live with dystonia.

It may be an abnormality of the sensory input of the brain that develops to throw off the ability of the brain to regulate the precise motor output to those muscles. We know that the sensory tricks that most people with focal dystonia have can temporarily give the brain the sensory input that it needs to suppress the movements. In some people it may be a trauma to their body that causes an abnormal sensory input that then activates an abnormal motor output that causes the dystonia. Once those overactive neurons have wired together, the excessive motor output may then persist despite healing of the original injury. In the case of musician and other types of occupational dystonia, neurons that fired together for countless times become wired together to begin firing off in an overactive manner causing dystonic posturing of the muscles controlling the hand whenever the person plays their instrument or activity associated with their occupational dystonia.

We try to suppress this abnormal dystonic activity to the muscles with oral medication, deep brain stimulation, botulinum toxins or cutting the nerves with selective denervation. However, the dream for all people with dystonia would be to reprogram those misbehaving circuits back to their normal level or rewire these abnormally wired together neurons in order to eliminate the need for all the other medical therapies.

Neuroplasticity treatment is based on reprograming or rewiring the circuits that cause dystonia.   The word Neuroplasticity means that the brain cells and their circuits are moldable and not fixed as was once thought. Our brains are not rigid organs but instead are in a dynamic ever changing state continually adapting to environmental and internal stimuli. Neuroplasticity is the basis for the benefits of positive thought as Howard Thiel has promoted for decades and discussed in many books to include the Biology of Belief, Mind over Medicine, and the books by Norman Doige- The Brain that Changes Itself and The Brain’s Way of Healing.

I have been preaching for years about the irreplaceable value of exercise as medicine (remember that I refer to this medicine’s brand name as Doesital) for improving the pain and movement control for cervical dystonia. The basis for this improvement is by promoting Neuroplasticity reprograming in the brain through the sensory feedback to the brain afforded by exercise and by activating neurotransmitter chemicals in the brain especially the chemical- brain derived neurotrophic factor (BDNF). BDNF is able to transcribe genes that promote new brain cell formations and connections (synapses ) between the neurons. This results in formation of healthier circuitry that seem to take over for the abnormal circuitry. This effect on the brain by positive thought and exercise involves the principles of Epigenetics that means “above genetics”.   This indicates that rather than being victims to the genes we are born with, we can turn on or turn off genes to our benefit through the right activation such as thought, diet and exercise.  I have observed people with dystonia have permanent improvement through these techniques that promote Neuroplasticity either on their own and through programs such as currently with Mikki Townsend, Phd RPT, or previously Abigail’s ST Recovery Clinic. We now need to determine the way to bring these benefits of Neuroplasticity to a larger group of people with dystonia.

Departments of Neuroplasticity are being formed in many Universities to do research to discover how to use these techniques for treating many brain disorders to include traumatic brain injury, MS, autism and stroke while others are working specifically for determining how to promote Neuroplasticity to treat dystonia. One of these researchers is Dr Joaquin Farias from the University of Toronto. After his initial training and research in Spain, he has been working on the Dystonia project since 1995 and has been successful in helping many patients to establish better control of their dystonic movements to include professional musicians with occupational limb dystonia and others with cervical dystonia. He has done a TED talk on this topic that you can watch on his web site or on you tube. He has written a book called Intertwined that gives examples of dystonia patients treated through Neuroplasticity techniques and will have a book released in 2016 describing more specific procedures for treating dystonia. He has stated that he uses specific exercises, music and thought to produce more efficient motor inhibition of dystonic movements. The process is specific to each individual based on what fits with that person’s unique brain and what sensory tricks work for each individual.   WE ARE FORTUNATE THAT DR FARIAS HAS AGREED TO SPEAK AT OUR NEXT SYMPOSIUM COMING UP IN CHATTANOOGA, TENNESSEE NEXT OCTOBER 1 AT WHICH TIME HE WILL DISCUSS HIS NEW BOOK and we can all learn how this process can add to our therapeutic armamentarium.

I think that we are on the verge of discovering another dimension in the treatment of dystonia at its source through the process of Neuroplasticity training. Something we already know is that the Neuroplastic changes do not occur well if the person is in a state of stress. This flight or fight state that activates the sympathetic nervous system is a condition that too many people are in on a daily basis although it is meant for survival in emergency situations and derails healing. In order for Neuroplastic healing to occur, we need to activate the parasympathetic nervous system response that counteracts the sympathetic response to produce a calm and restful state that prepares the ground to reap the benefits of the Neuroplasticity exercises. This can be accomplished through stress release practices to include mindful breathing, yoga and meditation that everyone can do now to prepare yourself for what is to come in the field of Neuroplasticity training.

There is also promise in the near future in promoting Neuroplasticity changes through devices that stimulate brain circuits to include the PONS ( Portable Neuromodulation Stimulator) device, the Cranial Electrotherapy stimulator or Transcranial Magnetic stimulator.   The DBS (deep brain stimulator device) that many people with dystonia have had implanted surgically is likely working on the basis of Neuroplasticity. It typically takes months for the benefits of DBS to be realized after the surgery during which time the abnormal brain circuits of dystonia are being rewired. It is the hope that there will become a way to accomplish this rewiring without surgical intervention.

It is also recognized by researchers that when using the devices or doing the exercises, Neuroplastic changes occur better when an active thought process is engaged. Neuroplasticity requires an active participation of the entire person. An example of this and of someone who has worked with Neuroplastic exercises on his own is one of my patients, Mark Galligan of Gig Harbor, WA. He has given permission to use his name and see the video of his accomplishments. He has very prominent segmental dystonia involving disabling anterocollis cervical dystonia, jaw dystonia and blepharospasm. He has had his sensory trick of putting his arm on top of his head so his wife suggested trying a weight like a book on his head. However it was only when he focused on balancing the book on his head would the dystonic movements be suppressed. He has worked on this daily with smaller objects to the point that he can now suppress the dystonia movements by balancing his keys on his head. Without this trick he could not tolerate walking for more than a few minutes, but is now able to walk for miles as long as he is balancing even a small object on his head. It is the goal to work toward him being able to just visualize balancing an object to control his previously severe dystonia.

We have yet much to learn how much these Neuroplastic concepts will help and which individuals with dystonia will respond to these options. However, in the meantime, I would like to challenge you to utilize physical exercise, positive thought and nutritious dietary means to promote positive brain circuitry changes. Each of these are demonstrated at the annual ST/Dystonia symposium.   I also encourage people to try to work with your sensory tricks in a way to produce sustained suppression of the dystonia. We will be learning better how specifically to do this from guidance from those researching this topic such as Dr Farias. I would appreciate many people trying balancing a book on your head trick as Mark did by starting to balance a wide large book. It will benefit us all to learn how many others can be helped by this trick or other innovative tricks that will give your brain the sensori-motor feedback and me the feedback on what you observe at Hoganpsn@aol.com along with any other insights you may have into the principles of Neuroplasticity.

Dr Patrick Hogan
Puget Sound Neurology

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Neurological Physiotherapy

Dystonia exercises

Yoga for dystonia

YOGA FOR DYSTONIA

by

Kathy Randolph, Certified Practitioner of Yoga for the Special Child

Yoga is an ancient discipline to bring body, breath and mind into balance. The eight-fold path of yoga includes avoiding unhealthy behaviors and attitudes, cultivating healthy practices, practicing yoga postures to gain control and stillness in the body, breathing exercises to control energy and stress, mental exercises to focus within, concentration, meditation, and connection with the universe.

The two physical branches of yoga, the postures and the breathing, make up Hatha Yoga. Hatha Yoga is founded on the truth that the state of the mind is inextricably combined with the condition of the body. Using the postures and breathing together provides a powerful method for reducing muscle spasms and tightness in the neck and shoulders, relaxing the body and mind, and relieving stress.

First, the full diaphragmatic breath, to provide maximum oxygenation of the muscles. Place one hand on your abdomen, with your thumb on your navel and the rest of your hand below. Breathe deep into your lungs, trying to fill the lowest section first. Your lungs extend to two inches below your navel on the right and four inches below your navel on the left. As you inhale, your lungs will expand, moving your hand away from your spine. (As you exhale your lungs will empty and your hand will move toward your spine.) Continue breathing fully into your low lungs until the motion is smooth. Then add your ribcage. First, fill your low lungs, then try to expand your ribcage and fill your lungs in your middle chest. Continue this breath, low lungs and then middle lungs until it feels smooth. Then add the upper chest. Fill your low lungs, then middle lungs, and then try to top it off, filling your lungs to maximum capacity. Continue breathing in this wave, low…middle…top, until it feels smooth.

The deep breathing of yoga brings oxygen into the muscles, and allows the old chemicals such as lactic acid and adrenaline to be released back into the blood stream and exhaled, speeding the release of tension from the muscles. In addition, since you are moving more oxygen with each breath, using your full lung capacity allows you to breathe slower, reducing your heart rate and blood pressure. When we are calm, we breathe slowly and deeply. Our minds and bodies are so connected that when we breathe slowly and deeply, our minds think we are calm. This allows us to use our ability to control our breath to choose to deliberately alter our mental state.

Building on this base of oxygenation, muscle relaxation and stress relief, let’s add the physical stretches for the neck and shoulders. Refer to the illustrations for a general idea of the pose.

Slow Motion Dive: Sit erect in a chair with your hands on your knees and inhale fully. As you exhale, slowly lower yourself with your hands to knee level and let your head hang freely. If you can go further, place your hands on the floor and continue to lower yourself. Pause there up to one minute, breathing fully, letting the weight of your head stretch out your neck and spine. Then, inhaling, lift yourself up with your arms, head still hanging until last. This pose stretches the neck, shoulders and upper back.

Seated Neck Stretch: Sit comfortably in a chair or on the floor, breathing fully. Place your right hand behind your left ear, grasping the base of your skull. As you exhale, gently pull your skull to the right, stretching your neck, then turn and look at your right knee. Pause, gently pulling and breathing fully, then release. Repeat on the other side. This pose stretches the neck muscles.

Seated Half Moon: Sit comfortably in a chair or on the floor, breathing fully. Place your right hand on the seat of the chair or the floor. With your left palm up, inhale and lift your left hand up, then exhale, curving to the right. Be sure to move sideways, rather than forward. Repeat on the other side. This pose releases the ribcage.

Seated Twist: Sit comfortably in a chair or cross-legged on the floor. Inhale and straighten your spine. As you exhale, bring your right hand across to your left knee and turn in your low spine to the left. Hold the position as you inhale, then as you exhale try to turn further, using your ribcage. Hold the position as you inhale, then exhale turning your head if possible. Repeat on the other side. This releases the neck and ribcage.

Circle of Joy: Sit comfortably in a chair or on the floor. Interlace your fingers. Exhale and press your arms forward, palms away from you. Inhale and lift your arms overhead, palms up. Exhale, releasing your arms to the side and around behind you. Interlace your fingers, palms away from you and inhale, straightening your elbows as much as possible. Exhale, bending forward. Inhale, release your arms and sit up. Repeat as desired. This stretches the neck, shoulders, arms and back, releasing all the muscles used in breathing.

Bent Knee Dive: Sit comfortably in a chair. Place your left ankle on your right knee. As you exhale , lower yourself forward, head hanging. Pause and breathe, then raise yourself with your arms, head hanging until last. This pose stretches the neck, shoulders, back and hips.

Now, having done the stretches that appeal to you, return to the full diaphragmatic breath. Does it feel freer? smoother? deeper? The breath enhances the benefits of the poses, and the poses make the breath fuller and more beneficial.

Remember, you control your breath, and with that control, you can alter your physical and mental state at will.

Breathe!

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Dystonia Rehabilitation Through Neuroplasticity Training (part 1)

Martine and I are new to the world of cervical dystonia. And fortunately the effects on Martine have not been as severe as many of you have experienced. Nevertheless, dystonia has altered the trajectory of Martine’s life and she now spends most of her waking hours dealing with and trying to lessen the
effects of cervical dystonia.

I am Martine’s husband. In our community I am known as an Anglophone. My first language is English. Martine’s first language is French. She is known as a Francophone. Martine is bilingual – much more so than me. But she is not completely comfortable writing in English. When Howard Thiel asked her to write about her experience with neuroplasticity at Dr. Farias 4 day workshop, she happily asked me to write something based on her input. Hmmm. Well here goes.

When told her diagnosis Martine immediately began doing research and searching for practitioners who could do something to help her. Like most of you she was not long learning that the medically accepted treatment is Botox injections. Without question the injections helped her. The swelling of muscles in her neck subsided. The intense contractions lessened. The pain became less severe.

But Martine was concerned about being permanently dependent on Botox. She worried about side effects. For instance, she read there could be impacts on her voice and on swallowing. And she is concerned that, over time, the benefits might lessen. She kept looking. Howard told her about the work of Dr. Farias. She immediately signed up for his workshop in Toronto in early February. That was before the symposium in Chattanooga. It was a bonus to learn that Dr. Farias would be presenting there.

Watching and listening to Dr. Farias in Chattanooga only heightened Martine’s interest.

The Toronto workshop began with explanations of the physiology that is at work in the neck and how it is affected by dystonia. Dr. Farias explained that his techniques were not going to cure the dystonia. He believes people are born with Dystonia or at least a predisposition toward it. He said he would be trying to help his clients self-manage their symptoms, be able to live more comfortably and reduce dependence on Botox.

Dr. Farias was not long before he began demonstrating physical movements and techniques. This involved very gentle movements and positioning of the head and neck to try and resist the twisting action of the muscle spasms. He carefully explained why he was doing each of the procedures and what he expected from each movement.

Gradually the participants acquired a catalogue of techniques and procedures to take home and use. Participants were allowed to have a companion with them in the workshop to help them conduct the movements and, presumably, to help with the administration of the procedures when they got home.

Martine was fortunate to have a friend attend with her. He made careful notes and is now in the process of showing me how to help Martine with the procedures requiring a second person.

Dr. Farias supplied a video of several of the self-administered exercises. I’m doing those exercises with her, twice a day. I’m hoping it’ll help with my golf swing.

Dr. Farias emphasized that his procedures would require long and patient practice. It is therefore much too early to judge the benefits. Martine is a determined and persistent person. She will be doing the exercises on an ongoing basis. You may be able to check with her in Rhode Island to see what progress she is making.

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Dystonia

Sensory tricks

Many CD patients have at least one sensory trick (a.k.a. geste antagoniste), i.e., a gesture or position that significantly and measurably reduces muscle tension and therefore brings relief. This is a temporary effect though: roughly 1 minute. Gently touching the chin, the cheek, or the back of the head often helps. Mostly, touching the face/head at the side to which the head turns, induces the sensory trick. When a mechanical item is used instead of the patient’s finger/hand, the effect of the sensory trick is equally present. However, when someone else performs the sensory trick on the patient, its effect is much reduced.

4.       Other ‘tricks’

• There are patients with visual sensory tricks. E.g., they find relief when fixing their eyes on themselves in the mirror, or when looking at a specific point on a blackboard.
• When yawning or opening the mouth to the maximum, many CD patients experience significant or even full relief of their symptoms.
• CD patients often have a deviating plantar reflex, called the Babinski sign, where the big toe moves up instead of down. In general, the Babinski sign is an indication of issues with the spinal cord and brain.
• When asleep or lying on their back, most CD patients don’t have symptoms.
• Wearing red-lens glasses aggravates the symptoms, whereas green-lens glasses (temporarily) alleviate them.
• Some CD patients experience relief of their symptoms while walking backwards.
• Some CD patients experience relief of their symptoms when hanging upside-down.
• Stress aggravates the symptoms, and relaxation alleviates them.
• Many CD sufferers experience relief of symptoms when they allow to genuinely feel and experience their emotions.
• Some CD sufferers have complete relief of symptoms when feeling intense gratitude and (self) love.
• Some CD sufferers have significant relief of symptoms when laughing.

5.       Clinical profile

Apart from the obvious CD symptoms and sensory tricks, CD patients have more clinical similarities.

• Thyroid dysfunction is common among, especially, females with cervical dystonia.
• It is probable that primary CD patients have a genetic predisposition to this disorder, which can be traced back to the DYT7 gene.
• Most primary CD patients are able to link the onset of their symptoms to severe stress.
• CD patients often have light eyes (gray, blue, green or hazel).
• In the family history of CD patients, essential tremor seems to occur more frequently.
• CD patients often have some degree of scoliosis.
• Most CD patients have some form of temporomandibular joint dysfunction (TMD).
• Forward head posture (FHP) is very common as well.
• A certain number of CD patients also complain about ear infections and pain preceding their CD symptoms. Many also have a history of ear infections as a child. (By the way: rabbits very often get torticollis after a middle-ear infection.)
• Many CD patients are light and sound sensitive.
• A significant portion of CD patients is ambidextrous or at least use both hands for different tasks.
• Perspiration problems (excessive or inadequate) are also frequent.
• The majority of CD sufferers has insufficient breathing.
• A nonnegligible part of CD sufferers treated with Botox, experiences complete remission after one or only a few treatments. However, symptoms reappear within a few years after remission.

6.       Psychological profile

Recently, quite some research has been done into the psychological profile of CD patients, with the following findings.

Personality features

• Pronounced agreeableness
• Strong feeling of responsibility for others
• Tendency to avoid conflict
• Reduced openness, difficulty to express (negative) feelings
• Distinct conscientiousness
• Inclination to obsession
• Propensity to structurize and be rigid therein
• Tendency to perfectionism
• Tendency to be demanding and set unrealistically high goals
• Pronounced need to be in control
• Tendency to psychosomatic complaints
• Issues with self-esteem
• Pronounced self-consciousness

It has been found through this blog, that (so far all tested!) CD sufferers have MBTI personality type INTJ. This is one of the rarest personality types. Their characteristics are:

• I – Introversion preferred to extraversion
• N – Intuition preferred to sensing
• T – Thinking preferred to feeling
• J – Judgment preferred to perception

⇓ Profile INTJ (click to expand)

Psychiatric features

• Enhanced lifetime prevalence for any psychiatric or personality disorder. More specifically: axis I disorders (e.g., depression, anxiety, bipolar disorder, ADHD, schizophrenia, anorexia nervosa) occur at a highly increased chance.
• High prevalence for social phobia, agoraphobia and panic disorder.
• Increased prevalence for anxious personality disorders, comprising obsessive–compulsive disorders and avoidant personality disorders.
• Social phobia in CD patients are very prevalent.
• Important: recent insight shows that (except perhaps social phobia) psychiatric comorbidities are not the consequence of CD, but manifested prior to the occurrence of dystonia symptoms, often by many years!

Deficits

CD patients don’t have obvious cognitive deficits. However, there are a few findings that indicate deficits in some areas.

• In neuropsychological tests, CD patients demonstrated significant difficulties “negotiating the extra-dimensional set-shifting phase of the IED task”, or according to me, simply put: “certain difficulties thinking outside the box”.
• CD patients were also found to have a deficiency in the perception of angry voice intonation. Their perception is less accurate and slower. This effect is not so pronounced with other emotions.
• In praxis tests, CD patients make significantly more errors in copying meaningless gestures and are slow in the performance of meaningless sequences of hand movements. Hence, they appear to have a disorder of “motor planning”. (However, copying meaningful gestures and performance of meaningful sequences of hand movements is normal.)

7.       External causes

Officially, the cause of primary/idiopathic dystonia is unknown. In some cases, the dystonia can be linked to an external cause. Then the disorder is classified as secondary dystonia. Some of the most frequently identified causes are the following.

• Brain damage
• Poisoning
• Wilson’s disease or other diseases of the nervous system
• Physical trauma to head and/or neck
• Drugs (then the disorder is called tardive dystonia)

As for the latter category, about 2.5% of patients treated with neuroleptic drugs develop acute dystonia within 48 hours of commencing therapy. The symptoms often remit on drug withdrawal or following anticholinergic therapy.

8.       Consequences of CD

The above phenomena represent quite a list, which allows to look for patterns and to start deciphering the meaning of cervical dystonia. For a more in-depth understanding of CD, I think it also makes a lot of sense to describe what the practical consequences of the disorder are. From what I heard from others, and from looking at myself, I can come up with the following generic observations.

• Loss of control
• Loss of free, peripheral vision
• Loss of flexibility
• Loss of balance
• Loss of autonomy and freedom
• Social embarrassment
• Lower stress resistance
• Slower pace of life

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