The Dystonia Guy

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His friends call him, “The Dystonia Guy.” We know him as Dr. Farias. I had the distinct pleasure of meeting  him and hearing him speak at the Chattanooga Symposium.  Dr. Farias has had dystonia since he was nineteen years old. He is one of those people that tries to change paradigms and that is exactly what we need as a person living with dystonia. Neuroplasiticity is just one piece of his work. His approach is not based on what he is going to do to us, as his patient, but instead he challenges us to ask ourselves the following questions: What can we do to manage our condition? What can we do to improve our quality of life? What can we do to help ourselves?”  In his opening remarks he said, “ I don’t treat people, I train people to treat themselves.”

He posed the question, “What is a dystonian?” Every one of us with dystonia shares traits, we are born with a specific brain. There are three main traits that can be identified in a person with dystonia and they are functional traits; intelligence, strength and sensitivity. So, it can be said that it is all positive! Well, that’s good news! He said, “The secret of your failure is also the secret of your success.” He also said, “The secret of your success can also be the secret of your problems. It’s all about you, your inner system, how you see the tiger, there are many aspects.”

He has found that one of the most common tendencies in patients with dystonia is that we can be more prone to be afraid. The most common word he hears is, “afraid.” “I’m afraid of getting better, I’m afraid of getting worse, people with dystonia are afraid.”  Being afraid makes us good at running though because of the fight or flight response and the good news is that running releases stress hormones so it helps us feel better. He says that people with dystonia need to exercise, need to move and need to do things. He went on to say that we are really good at encoding and decoding because of our very powerful left brain. In dystonia the weakest link is the right brain.

Dr. Farias asks the question, “Why are people that don’t have brain injuries having the same symptoms as people with brain injuries?” It is a conundrum. There is no injury so how can we solve this mystery? He poses the question, “ What if dystonia is not an illness but a reaction in a healthy body?”  Stress can produce a dystonic response. He thinks it’s important to talk about the autonomic nervous system too. He told us that the autonomic nervous system becomes deregulated. He suggests we don’t use the name dystonia anymore but instead replace dystonia  with “dysregulation.”

When doctors try to help people with dystonia and don’t know what it is that we have they will borrow a model of a different condition that is known. Dr. Farias suggests that we borrow the model of epilepsy. When a dystonia patient is having a dystonic episode he believes they are displaying symptoms that are close to epilepsy. He asks the questions, “What if we are having brain storms that are triggered by specific triggers and then we are approaching a response? Why is this important?” He believes it’s important because if it’s a response, you can change or inhibit the response. We can learn how not to trigger it. We can learn to modulate the response reducing the intensity of the response. We can make the response shorter. Instead of having a crisis of 48 hours we can have a crisis of 5 minutes. We can train our brain to address the crisis in the most efficient way. People can also learn to prevent the crisis and to reduce the intensity of the crisis. If a person is able to stop the crisis for a minute, due to plasticity, they are less prone to have a second episode. The more we can reduce the intensity the less intense our response will be.

When we are unable to cope with physical stress, emotional stress or sensory stress the brain can enter into shock. Dr. Farias said, “That is not a problem for the brain, it is in fact an adapted behavior.”  You can stop and say to yourself, “In the future, if I am stronger, I can cope with this.” An episode can be triggered in social interactions, troubled relationships, intense fight or flight, anything unexpected, even success.

He has patients that can go into water and they don’t have any symptoms. He believes that If you can relax in water you can relax anywhere. Some of his clients don’t have cervical dystonia when they are alone. If you can relax alone you can relax around people. He asks the question, “How can we stop the crisis?” His response is that, “Some people find help through dancing or rocking, being in the company of friends. We can desensitize a dystonia crisis by working on your stress. A person can be healed when there is support and they are surrounded by the right people.”

Dr. Farias shared that there is a theory in neurology that says that if you have a neurological condition, the first six months are crucial and if you don’t improve in the first six months you will not improve. He said, “This is false!” It has been his experience that even at 40 years of dystonia people can awaken. He calls this condition, “The Sleeping Beauty Syndrome.”

Can we learn to use our brain again with new training? Dr. Farias says, “Yes! Crisis management, learning to deal with your sensitivity, learn to deal with stress and learn to deal with our response to stress.” He explained that people with dystonia see tigers everywhere. We look for danger. This sure explains a lot. I have always wondered about that particle personality trait I have. He said that the stronger we are, the more intense our symptoms are. Also, because of that we will be more able to cope with that.  If you become afraid, you have more symptoms. If we remember that, it save us a lot of energy. The more afraid we are of getting worse, the worse we are going to get. It’s essential not to have negative thinking. Stress hormones can induce symptoms. If you calm down you are going to reduce symptoms. We also need to talk to our brain and say, “Be quiet. Calm down. You cannot take that.”

He says that he is just one piece of the puzzle. He needs to work with the doctor that is giving the botox (if you are having botox), a nutritionist, an endocrinologist, a psychologist and the family. He told us that he is not saying he is here to heal anyone, he is just one piece of the puzzle. He also told us that just by listening to him speak we were already changing our brain. We were changing our mindset. We were changing our approach to pain and to pain itself. By changing the way we believe we are changing our dystonia.

We need massage, physiotherapy, neurorehabilitation, relaxation, yoga, whatever we can use to calm down our sympathetic nervous system to work on our muscles and to work on our general well being. Neuroplasticity is the brains ability to reorganize itself. Neuroplasticity helps the nervous system  to adjust function and structure. What Dr. Farias does in the workshop is he changes the function of the brain, when you switch off the pattern and switch to another one you change the function first. But if you maintain this new function you change the structure. We need to change and we need to do our exercises. It is a commitment and it’s an agreement with him. One month out of the year he donates his time for clients that cannot afford to pay for treatment, or on a case that is very complex.

If you go to his workshops he will be honest and up front with you and tell you what you need to change, so it’s important to go with an open mind. With neuroplasticity training we need to be active. We need to be trained to deal with our crisis in a more efficient way. Rewiring the brain takes time and work. So, we need to be patient. It’s not just about the exercises in the workshops (that’s about 1% of what he does), it’s about the conversations and what is shared in the workshop. It’s about how people change, it’s about how people understand, it’s about information. He says that everybody can heal but it will be at different rates depending on the spirit of the person. His statistics show that to get better it can take between 10 minutes and 10 years. He told us, “The brain is waiting for you to put things back into place.”

He treats the people that are most affected first. He believes that the people that have more dystonias have more of a chance to recover faster. He told us that people that have been dealing with dystonia for many years have more of a chance for a breakthrough than someone who has only been dealing with it for a few years. You might ask, “Why?” Dr. Farias says, “ Because the brain is bored of doing the same thing and is craving for a change. “

Dr. Farias’s uses the analogy of a wave in the ocean to explain his point of view. He said, “You need to find a practitioner that will be inside the wave with us, someone that will help us out of the crisis, to help us understand how to manage the wave, how not to confront the wave, how to move with the wave, how to benefit from the wave, how to be carried by the wave. He really loves the wave. Some people say dystonia is bad, don’t try to make it beautiful. We NEED to make it beautiful if we want to be able to ride the wave. Don’t be scared of the wave, be in the heart of the wave and relax.”

The group of people with dystonia have been systematically mistreated since the beginning of the condition. Einstein said that, “It is easier to disintegrate an atom than it is to disintegrate a prejudice.” I love this statement by Dr. Farias, in correlation with Einstein’s quote, “Now, we are trying to change the prejudice by saying, it’s not because I’m dystonic that I cannot move as good as you, it’s because I’m dystonic  I can move better than you. It’s about dystonia pride! “

Sheri Caruso
DystoniaST@gmail.com

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand