dystonictherapist-blog

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Homemade journals can help you clarify your dreams, increase your self-awareness, give you a place to express your feelings, and a place to create your future. I create homemade journals with 80 to 120 pages, hand stitched, with unprimed canvas journals or color card stock papers. The thick drawing/printmaking paper is good for watercolors, pen and ink, collage, mixed media, or writing. The unlined writing paper is similar to resume paper and is easy to write on. The journals make good Holiday and Christmas presents and sell between $16 and $37 each with postage included in the USA. For other countries or Canada please email me at terristerling@me.com. All revenue from these journals pay for medically necessary treatment. You can email me at terristerling@me.com with question or orders. You can also connect with me on FB at https://www.facebook.com/terri.sterling1. Thank you for visiting my blog. 

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Research Projects for People with SD

There are two different research projects going on for people with SD and they need your help in beating this disorder, so please participate. Below are statements from the researchers. 

"First, we have a brain imaging study that is looking at brain changes in individuals with and without SD, but we are only accepting individuals with SD by itself.  In other words, participants for the brain imaging study cannot have other types of dystonias.

  However, there is second study that is researching the genetics behind SD, and they are willing to take anyone who has an SD diagnosis (even if they have other types of dystonias).

Please let anyone who wants to participate know that we will need to have them send in their medical records showing the assessment that went into their SD diagnosis." 

Please contact me if you are interested in getting involved by emailing me at terristerling@me.com or Sterlingcoach@live.com, and I will direct you to my contact person for the research. 

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Research Projects for People with Dystonia

Here is some more information on the research studies that are being done by the Simonyan Labs at Mt. Sinai in NY.  It's pretty dry but someone might be interested when you blog.  There are several areas that they are looking at.

Projects 

Projects

Role of neurotransmission and functional CNS networks in spasmodic dysphonia and writer’s cramp

Despite the recent progress in elucidating brain functional abnormalities within the basal ganglia-thalamo-cortical circuitry in primary focal dystonias, there is a fundamental gap in understanding the neurochemical correlates underpinning the functional alterations in these disorders. We aim to determine the role played by the major basal ganglia neurotransmitters in pathophysiology of dystonia by identifying their contribution to altered brain activity during symptomatic and asymptomatic task production in two forms of focal dystonia, spasmodic dysphonia and writer’s cramp. This study is among the first detailed investigations designed to determine dopaminergic and GABAergic contributions to the pathophysiology of primary focal dystonia. The outcome of this study is expected to lay scientific foundation for identifying the mechanisms for neuropharmacological interventions in patients with primary focal dystonias.

Imaging genetics of spasmodic dysphonia

Although the contribution of genetic risk factors to the development of primary focal dystonias is evident, our understanding of how variations in the causative gene expression lead to variations in brain abnormalities in different phenotypes of dystonia (e.g., familial, sporadic) remains limited. Continued existence of this gap represents an important problem because, until it is filled, full characterization of dystonia phenotypes, assessment of risk in families, and the design of novel therapeutic approaches for these patients will remain largely unattainable. Our research program, in collaboration with Dr. Laurie Ozelius, is set to identify phenotype-specific brain abnormalities associated with genetic risk factors in spasmodic dysphonia using a novel approach of combined imaging genetics, next-generation DNA sequencing and clinico-behavioral neurotesting. The rationale for this study is that identification of phenotype-specific brain abnormalities and the associated genetic susceptibility risk factors will establish a strong scientific framework for characterization and development of diagnostic biomarkers for detection and evaluation of patients with spasmodic dysphonia as well as for screening of persons at-risk. The use of a cross-disciplinary approach as a tool for discovery of the mediating neural mechanisms that bridge the gap from DNA sequence to pathophysiology of SD holds a promise for the understanding of the mechanistic aspects of brain function affected by risk gene variants, which can be used reliably for discovery of associated genes and neural integrity markers for this disorder.

Voice tremor in spasmodic dysphonia: Central mechanisms and treatment response

Spasmodic dysphonia, as other forms of primary dystonia, is a chronic debilitating condition, which becomes even more incapacitating when it is associated with voice tremor due to poor response of the latter to currently available treatment options. There is, therefore, a critical need to identify new treatment opportunities for patients with spasmodic dysphonia with co-occurring vocal tremor who receive limited, if any, benefits from the current gold standard treatment of dystonia with botulinum toxin injections. The design and use of novel therapeutic approaches for these patients will, however, be largely impossible if the central mechanisms of these disorders remain unknown. In collaboration with Drs. Steven Frucht and Andrew Blitzer, this study aims to identify shared and distinct brain abnormalities in spasmodic dysphonia and vocal tremor as the basis for characterization of central mechanisms underlying symptom improvement following the use of sodium oxybate, a novel pharmacological agent for treatment of ethanol-responsive dystonia. This research study focuses not only on identification of distinct pathophysiological factors contributing to the development of spasmodic dysphonia and vocal tremor, but also on discovery of mechanisms of central effects of sodium oxybate, which holds promise for treatment of refractory symptoms in these disorders.

Neuroimaging, neuropathological and genetic correlates of task-specific primary focal dystonias

Task-specific primary focal dystonias are characterized by selective activation of dystonic movements during performance of highly learned motor tasks, such as writing or playing a musical instrument. To date, we have only limited knowledge about the distinct neural abnormalities that lead to the development of task-specific primary focal dystonias affecting similar muscle groups but resulting in different clinical manifestations, such as writer’s cramp vs. pianist’s dystonia and embouchure dystonia vs. oromandibular dystonia. Our goal is to dissect the pathophysiological mechanisms underlying the phenomenon of task specificity in primary focal dystonias using a combined approach of brain network analysis and neuropathological examination. We expect that identification of distinct neural abnormalities between different forms of task-specific primary focal dystonias would establish a scientific framework for the development of diagnostic biomarkers and novel treatment approaches for these disorders. Rather than viewing these disorders as interesting curiosities, understanding the biology of task-specific activation of motor programs is central to understanding dystonia.

Cortico-subcortical interactions in Parkinson’s disease

Parkinson's disease is a progressive movement disorder that impairs the ability to speak clearly. Deep brain stimulation (DBS) improves many of the motor symptoms of Parkinson’s disease, but does not help and sometimes harms the ability to speak. The nature and extent of speech changes following DBS in Parkinson’s disease remain open questions. In collaboration with Dr. John Sidtis, we aim to characterize the morphology of the subthalamic nucleus, the target brain structure for DBS, and examine the relationship between the position of the DBS stimulating electrode and adjacent white matter tracts in patients with Parkinson’s disease using high-resolution MRI and DTI. The rationale for this study is that identification of the relationship between the placement of DBS-induced micro-lesions and speech changes would allow for characterization of specific contributions of basal ganglia function to speech production and help better estimation of how often DBS procedure may lead to greater speech impairment, and when it occurs, how it can be characterized. Collectively, we seek to understand the effects of DBS on speech in Parkinson’s disease with the long-term goals of modifying DBS to preserve or improve speech in these patients.

Laryngeal motor cortex and control of speech in humans

Speech production is one of the most complex and rapid motor behaviors that are uniquely human. The development of human ability to speak relies on the abilities to listen to speech, comprehend and process the meaning of the heard words, and precisely coordinate the function of more than 100 laryngeal, orofacial and respiratory muscles in order to utter speech sounds. Neural correlates of speech production have been explored for over a century. Yet, we lack a complete understanding of laryngeal motor cortical control during production of speech and other voluntary laryngeal behaviors. In recent years, a number of studies have confirmed the laryngeal motor cortical representation in humans and have provided some information about its interactions with other cortical and subcortical regions that are principally involved in vocal motor control of speech production. We proposed earlier that the location of the laryngeal motor cortex in the primary motor cortex and its direct connections with the brain stem laryngeal motoneurons in humans, as opposed to its location in the premotor cortex with only indirect connections to the laryngeal motoneurons in nonhuman primates, may represent one of the major evolutionary developments in humans toward the ability to speak and vocalize voluntarily. Our current research is directed to further elucidation of the organization of central laryngeal control based on neuroimaging studies in healthy humans and through knowledge gained from patients with neurological voice and speech disorders, such as spasmodic dysphonia, vocal tremor and Parkinson’s disease.

If you need any more information please contact me, so I can connect you to someone who is in contact with the researchers. 

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DBT Therapy: A Way to Cope

DBT therapy is a form of therapy that will teach you skills to manage days when you feel overwhelmed or distress. Radical Acceptance is a way of looking objectively at your life, your behaviors, while being loving and accepting the situation you are in. DBT involves Distress Tolerance Skills, distraction vs avoidance, a belief that healthy behaviors will get you more of what you want, Half-Smiles, Lemonade, and building a life worth living for. Distress tolerance is something we need to work on because the economy, Dystonia, employment, and health issues are difficult issues to live with and often leave people overwhelmed. DBT also examines the chain of events in each situation, how they apply to similar situations, and how the outcome would be different if you use healthy behaviors instead of maladaptive ones. 

Radical Acceptance is based on Mindfulness and being able to objectively look at your life, your behaviors, and your beliefs while accepting your situation. It does not mean that you give up or that everything in life is fair because sometimes life isn't fair and sometimes we contribute to our own mistakes or pain by using the wrong behaviors or avoidance. Sometimes it is hard to admit we contribute to our current problems, so be loving and accepting of who you are and the situation you are in. This process is not about beating yourself up, so throw that imagined bat that you have been beating yourself up with out the window. Go on do it now. Sometimes it is hard to admit that we are vulnerable and didn't have control over a situation but Distress Tolerance Skills should help you achieve your dreams. 

Distress Tolerance skills involve being able to manage overwhelming distressing emotions that bring us to a halt in our lives and our emotions. When feeling overwhelmed, people tend to either distract themselves or avoid the issues do to being in too much emotional pain. Distraction is appropriate because it gives us a break from the pain, feelings, or issues and as long as we get back to them then it is healthy; however, avoidance is a maladaptive behavior that snowballs into even worse situations, causes us more pain, and causes the people involved to be in emotional pain. 

Distraction techniques included organizing your apartment, your books, your calendar, or the things around you. There are other things you can do to distract yourself including taking care of a friend, really listening to someone else, self-soothing by eating lollipops, eating candy, taking a walk and listening to the sounds of nature, hearing our favorite music, or taking a warm bubble bath with candles. You can distract yourself using sound, smell, touch, or hearing but the key is to get back to the subject, problem, or feeling you are trying to manage. 

Avoidance will lead you down a road of maladoption that will only ensure a snowball of problems which will take longer to fix, a dissociation from feeling, and you will not live your life fully to the best of your ability. It does not help you to get what you want but will prevent you from achieving your dreams. 

Half-Smiles is a technique that will change your neurotransmitters, so that you become happier and heathy. It is exactly what it says it is and you can find many reasons to engage in a Half-Smile including drinking tea, eating your favorite candy, listening to a co-worker or a family member, going to the movies with a friend. Engaging in 3 to 5 Half-Smiles over several months will change the outcome of your life. At first I thought this was a strange thing to use but it really does get easy and better. 

Turning lemons in our lives to lemonade is a technique that many of you are aware of. There is always a way to turn any event into something positive. Find the silver lining and you will be happier. My dystonia has been both a blessing and a curse; however, the blessing is that it has motivated me to attend college, to fight to create the best life I could, and to help others. It has been my motivator in life and has taught me to live a full life because life is so precious. 

A change of events being examine will tell you where the adoptive and maladoptive behaviors occurred, where you could have changed your behavior, so that the outcome could have been different. It is best to engage in this activity with a therapist after you are comfortable with them. Do not do this activity alone until you feel secure in yourself, have learn distress tolerance skills, and can engage in the chain of events with someone you trust. 

You will get more of what you want in your life if you use the DBT Skills for distress tolerance, for distraction, eliminate avoidance behavior, can radical accept yourself, and can look at your chain of events. I not going to tell you that it is easy and is not painful at times as you look at maladoptive behaviors but I am going to tell you that if you are ready to change or thinking for changing so you can be more successful then this maybe the therapy for you. 

Learning Radical Acceptance, Distress Tolerance Skills, being able to talk about the chain of events, acknowledging that the outcome would be different if you accepted your situation and use distract skills instead of avoidance will help you build a life worth living. I will write more about DBT in the next several weeks, so keep looking out for more articles on how you can improve your life. 

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Empowerment has to Start with Your Own Thinking

Empowerment has to start with your own thinking pattern, who we surround ourselves with, and where we want to go. Another important ingredient is how much self-confidence we have. Self-confidence really comes down to how much you believe in  yourself and isn’t based on what someone else thinks. If you think you are beaten then you are and if you think you will succeed then you will. But is it that simple? 

  Let me begin with self-confidence that pesky thing that can get in our way. We are taught from a young age that self-confidence is based on how much we please people and  how much they like us. This is false thinking because true self-confidence that is unwavering is based on how much you believe in you, which is improved based on your ability to succeed at the realistic goals you have set for yourself and that are in your control. You can achieve anything if you are willing to do things differently by using out of the box thinking. 

  Out of the box thinking requires you know what you want to achieve, have the knowledge to understand technology, and can be open minded about the process. Just let your mind relax and don’t throw any ideas out but instead write every one of them down. After you have a long list you can select a few good answers. If you can’t find the right technology, then surf the web and I am sure you can find answers. Don’t let anything prevent you from achieving your goal. 

  People are sometimes their own worse enemy because unconsciously we sabotage ourselves. It is how you think consciously and unconsciously that will determine your outcome to an extent. We displace our angry on to others for the wrong reasons, are disorganized, or are listening to the messages we have in our inner mind tape (self-talk) that has been placed there from pervious encounters. Sit down and think about the negative messages you have been carrying around inside your mind for years. Spend a day just listening to you, don’t try to change your thoughts, just be an observer, and after one day you might be shocked at the things you say to yourself. Start by taking out several small pieces of paper and write down all those negative thoughts separately, then let go of them in your mind, take out a trash can, and symbolically throw them away. Replace those negative thoughts with positive thoughts. Having a partner who can witness this will allow you to be more accountable to yourself and one other trusted friend. 

  It is important to surround yourself with people who support you but that doesn’t mean they always have to agree with you. In fact you will need people who will challenge your thinking. A variety of people in your life from different backgrounds and cultures, will help you succeed in your goals and in your life. Surround yourself with people who will empower you to succeed at your dreams. 

  Empowering yourself means building your self-confidence, looking at your own thinking, surrounding yourself with supportive people, and setting clear goals. You must take actions everyday to achieve your goal and empower yourself. As a person with a disability, my self-confidence has grown in part from the things I have had to overcome or learn to deal with differently. 

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 "Chaos" is a hand pulled original etching, 18" by 24", limited edition of 9, and sells for $175. 

         The Chaos in Our Lives

Chaos is in all our lives as the economy has plummeted, medical bills become hard to pay, and employers are demanding more of us with less pay or little to no pay increases. Many people have become scared of the changes we face around us but even in the middle of chaos we have to cope, create meaning in our lives, and try to thieve. The stress of our daily lives has to be managed in order for the impact on chronic differences (i.e. medical difference) to be reduced. 

Perhaps, your medical difference is ADD, ADHD, Dystonia, Cancer, or another medical issue, or maybe there is just too much stress in your life. Whatever is causing you to feel stressed is likely to impact you physically and emotionally. There are a variety of ways to manage stress including biofeedback, meditation, listening to music, physical exercise, art and journaling. 

Biofeedback is usually done with a psychiatrist or a mental health professional’s staff. There is evidence that it can help manage margarine’s, reduce muscle spams, and help to reduce the impact of stress on medical issues but it can also be expensive. It is worth it if you can afford it or your insurance can pay for it, is not a cure for movement disorders, but it can help manage it in some cases. 

Meditation is a great way to help manage stress and clear your mind. There are many methods, types, and believes about meditation including Mindfulness Meditation, Breath Watching, Walking Meditation, and Empty Mind Meditation, and Transcendental Medication. You can join a group, or do it alone for no cost. 

Music therapist and researchers have known for a long time the impact music can have on our lives. There is special music for sleeping, relaxing, energizing, and to help with obsessive thoughts. Paco Bell Cannon can help change obsessive thoughts or calm you down when you are angry, so you can move on with the day. Rock and Roll has been known to energize people but so can Jewish Folk Music, so you will have to explore different music to find out what works for you. 

Physical exercise can help your muscles relax, can reduce your nervous energy, and can help you become fit. You can run everyday, which is what many people with ADD or ADHD do, or you can join a gym with a trainer. Physical therapy may help you to gain strength and help you cope. Taking long walks each day will help you with physical exercise, can be a walking meditation, and will help you sleep at night. 

Journaling and Art is a great way to reduce stress, clear your mind, and can give you a way to cope with the rest of the day. It can provide you with space to write your creative ideas down that you can use at a later date. You can write three pages a day everyday without worrying about spelling, sentence structure, and paragraphs. Showing up everyday on the page will help you to put all the garbage on the page, so you mind can be clear for the rest of the day and you can be productive. 

The coping skills listed can help you reduce stress and can improve your health but it is up to you to find out which one works for you. I will discuss them in more detail at a later date. 

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   I created this images as I was losing my vision. It is a hand pulled stone lithograph print, which sells unframed at $75. 

         Art Can Help You Heal

Art has the ability to heal us emotionally and can reduce medical symptoms. Wether we are trying to manage existing symptoms, adjust to new symptoms, or recover, art and creative self-expression can help us to heal, cope, and adjust with medical issues. I have inherit Dystonia, ADD, have been legally blind in the pass, and now have 31% strength in my diaphragm and it is art that has saved my life in the pass and it will again.

A few years ago, I lost my vision, as my eyes to turned in, my eye muscles swelled up and my eye was pushed forward, which left me only seeing shadows and hearing sounds. The steroids use to treat me left me with even more complications but that was not the worse part. I felt with every cell in my body that I was dying but I wanted to fill my dream of becoming an artist, so I became determined to return to college to fill my dream and to take printmaking classes.

It was my love of art that saved me as I physically hand printed each lithograph, etching, and woodblock. Printmaking was physically demanding because the presses were completely manual and required me to hand turn a hugh wheel that moved the press bed forward, so a new print could be created. The physical activity helped me to stay in shape, reduced my anxiety, and helped fill my dream of becoming more involved in the arts. My ability to express in prints what I couldn't say with words helped me to adjust to my symptoms and gave me a voice.

I remember how people in my classes and the director of the art department came to my side and helped me in take notes when I couldn't see. I couldn't see to read what I typed or what was written in art history books, so other students came to my aid and read my books into a tape recorder that I listen to later on. I helped all of them learn to be more free and creative in their own art work. It is very freeing to draw, paint, and etch when you can't see the details of the image. Perfectionism gives way to the realities of not being able to see.

Spending time in the painting studio and the printmaking studio helped me get through the worse of my symptoms, freed me up, reduced my anxiety, and gave me faith in people once again. I recovered from the vision problems but I am lucky that I didn't die from the complications. I firmly believe that my experience in those art classes, the physical demands of printmaking, and my dream kept me alive and thriving at a time when it seemed impossible to make it through one more day. 

Art has the power to heal you. Don't ever give up because the beauty of your dreams will keep you going and art can help you heal as you learn different ways to express your creative self. It is creativity that will help you to adjust, to recover, and to carry on when all other treatment fails. Let the power of art help you to achieve your dreams. 

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Dystonia provides us with many unique social encounters. 

My favorite experience involved a young child and her father in a store where I was shopping. A beautiful young girl, around 5 or 6 years old, wanted to know why my head was shaking, so her father proceeded to  carefully explain that I had Parkinson Disease. I have only Dystonia but I so loved the care he took to explain it to his very young child because he didn't try to shame her into not asking and he didn't try to embarrass me in the process. He was gentle and warm. This polyester hand pulled print is my tribute to that social encounter. I wonder what toddlers think? Kids are so wonderfully curious about life. 

This image is a hand pulled original print, which sells for $40 and the image is 11" by 14". If you wish to buy this print, you can contact me at sterlingcoach@live.com with the words Art for Dystonia in the heading. I can be paid through Pay Pal. 

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Dystonia, Art, and Coping Skills

Dystonia, is a movement disorder, which is inherited, acquired by an accident involving head trauma, or the result of medication side effects that become a life long dystonic reaction. There are many ways to cope with Dystonia but depending upon how you acquired or inherited this disorder some coping skills will work for you while others will not. 

You may be wondering why or how I know about Dystonia and coping skills, so I have decided to openly discuss my background. I have had an active case of Inherited Dystonia since I was 6.5 years old, by the time I was 8 years old walking became an impossible tasks at times, in my teens it started to affect my back and neck, and tremors appear in my hands and arms, and 12 years ago it became almost impossible to physically write. With the help of Botox injections in my arm, I can write like any normal person. After I was diagnosed at 23 years old, I decided to become a mental health therapist, so I am a person with Dystonia and a mental health therapist who has experienced both sides of this situation. I know how leery most of us our toward the mental health professional due to the long negative history and we all know that Dystonia is not a mental health illness but we also know how hard it can for some people to cope with the stress of our daily lives, the effect it can have on family relationships, the employment issues, and the need to fill our dreams with the limits of dystonia, so I am writing this blog with general suggestions but this is not a substitute for mental health counseling if you need it or feel suicidal. I will not be responsible for any suicidal behavior because these are just general suggestions and you have to figure out if it will work for you or not. 

During the next few weeks, I will add coping skills for you to try but you will need to decided individually if it works for you or if would like to try another one. I will talk about how art, creativity, and music can help all of us. Meditation, biofeedback, art therapy, psychodrama, and sandtray therapy can help some of us learn to cope better. Support groups are very valuable to have whether it is an on line support group or in person group. Having a common chat room where we can all talk has been helpful to many of us. I know how important art is too healing, so I will from time to time add my art work for you to enjoy. I hope you return to this page at least once a week and that we grow together.