DYSTONIA: GAINING CONTROL THROUGH MOVEMENT

written by Kaitlin Mauch, Undergraduate Student, University of Florida

Dystonia (You Tube videos) is perhaps one of the most puzzling neurological conditions to date. Though medical research has elucidated much pertaining to the nature of this disorder, its treatment options and what may cause its symptoms, there are still lingering questions about dystonia in its varying forms. This chronic disorder is characterized by involuntary, and often painful movements or tremors caused by over-stimulation of certain muscles or muscle groups. (1)

Among other signs, patients with dystonia can experience abnormal postures, shaking, or twisting. Remedy prescriptions for the disease, whether pharmacological, surgical, or therapy-based differ by individual practitioners and patients. Since there is no cure for the disease, treatment is focused on lessening the severity of symptoms; however, a major approach to mitigating the pain of several forms of dystonia is exercise. Through relaxation techniques, focused on improving breathing patterns, relieving muscle tension, and enhancing balance and posture, dystonia can be controlled naturally through movement. In targeting these secondary symptoms, people with dystonia are able to conduct their daily tasks more efficiently.

According to the Columbia University Department of Neurological Surgery, dystonia is the "third most common movement disorder after Parkinson's Disease and Tremor, afflicting more than 300,000 people in North America." (2) Dystonia spans all ethnicities, ages, genders, and socioeconomic statuses, and it can be onset by a number of different factors.

Classifications of dystonias include generalized dystonia, which involves most or all of the body; focal dystonia, which is localized in one part of the body and makes up the greatest number of dystonia cases; segmental dystonia, which affects at least two adjoining parts of the body; hemidystonia, which affects the arm and leg on one side of the body; and multifocal dystonia, which involves two or more unrelated parts of the body.

(4) The two types of general dystonia are primary dystonia, caused by abnormalities within the basal ganglia, a component of the brain that contributes to movement control; and secondary dystonia, in which the dystonia is onset by medical conditions, trauma, or drug interactions. (2) Primary dystonias are most-frequently genetic, and researchers conducting studies on the basal ganglia surmise that the mutation of the DYT1 gene on chromosome 9 causes abnormal production of TorsinA protein, possibly leading to dystonia. (1) Since neuroimaging cannot pinpoint these abnormalities, there are still limitations in uncovering the specific neurological cause of dystonia.

Focal dystonias are comprised of disorders like writer's cramp, craniofacial dystonia, limb dystonia, cervical dystonia, spasms within the cervical vertebrae that twist and turn the neck, and blepharospasm, involuntary blinking of the eyes. (7) Any part of the body can be disturbed by dystonia: arms, legs, neck, face, eyelids, and vocal cords. Specific symptoms for each variation of dystonia determine the diagnosis and severity, but all dystonia patients share similar painful cramping and continuous muscle spasms that interfere with performing daily activities. Even the simplest tasks like holding a pencil, turning a page in a book, or sitting in a chair without experiencing spastic motions can be interrupted and complicated by dystonic movements.

Unfortunately, since the neurological cause is unknown, there is no universal treatment for dystonia. However, developments are becoming more advanced and effective as exploration through research continues. Thus, current treatment for dystonia is focused on reducing pain through regulating spasms and their symptoms, ultimately improving patients' quality of life. Neurologists adapt treatment methods and cycles to each individual patient's needs.

For cervical dystonia, the most common focal dystonia, botulinum toxin, injected into affected areas, relaxes muscles and is often successful in minimizing pain. Dennis Dykstra, chairman of the Department of Physical Medicine and Rehabilitation at the University of Minnesota, attests that, in the case of a middle-aged female patient with cervical dystonia, Myobloc botulinum toxin type B injections had alleviated her pain by 90% and improved her neck movement by 60% when no other oral medications or chiropractic care aided her tremors. (3) This is just one example of the many cases that have been successfully treated with the toxin.

Botulinum toxin is also used to treat blepharospasm and writer’s cramp. Risks involved in these injections include toxin leakage, which may paralyze muscles. Unfortunately, patients must receive regular injections to maintain relief, as botulinum toxin’s advantages are not permanent.

Another effective treatment option for dystonia is oral medication. Dopaminergic medications or dopamine-depleting medications, which increase amounts of dopamine and block them, respectively; Anticholinergics, which block the production of acetylcholine; and Benzodiazepines, which block GABA-A; are all common drug remedies. (4) Not all patients respond well to certain medications, so practitioners suggest several drug trials before settling on a medication.

If medications and botulinum injections prove ineffective or harmful, surgical procedures may be necessary to alleviate dystonia symptoms. The National Institute of Neurological Disorders and Stroke claim, "surgically cutting or removing the nerves to the affected muscles has helped some focal dystonias," yet, "The benefits of these operations…can be short-lived. They also carry the risk of disfigurement, can be unpredictable, and are irreversible." (7) The most debilitating dystonias result in surgery.

Perhaps the most overlooked treatment for dystonia is exercise therapy. One method is complementary therapy, a holistic approach that blends relaxation techniques, light physical activity, body-mind connections, and biofeedback to gain control over the body's use of motion. (4) Low intensity aerobics that operate on balance, core strength, and posture, such as yoga, tai chi, and pilates, are examples of complementary exercise. Concentration on breathing provides more oxygen to the muscles, assisting in lessening the number of dystonic spasms. Also, stretching and strengthening muscles through complementary exercise alleviates tightness and prevents dystonic muscles from shortening or becoming stiff.

This therapy, as well as other variations of exercise therapy, is often prescribed to supplement the aforementioned treatments, but it should be practiced with caution. Every patient must have a thorough understanding of their unique dystonia, and must not engage in exercise involving the symptomatic areas without being cleared by a physician prior.

Physical therapist Mikki Townshend in her article, "Ideas for Exercise – Working with the Kinks in your Body! DySTonia Symposium 2008," details some basic stretches for patients with dystonia, as well as possible modifications for the exercises. Among these are external shoulder rotations, squats and flies with a Thera-band, and sternal lift motions, all to be performed upright, lying down, or seated. (9) Townshend references the American College of Sports Medicine's activity guidelines for adults with chronic disorders, which recommends moderately intense aerobic exercise five times a week for thirty minutes, 2 repetitions 8-10 strength training exercises three times per week, and a range of balance exercises. (9)

With refined back, neck, and shoulder alignments, patients with several variations of the disease can transfer stress away from the vertebrae, using newly toned core muscles. Pragmatically, these exercises have the ability to impart more significant symptom relief than any other exercise therapy approach. Furthermore, physical activity can often combat any side-effects from dystonia medication or injections, and help rehabilitate after surgical procedures.

In addition, brain-based physical rehabilitation uses joint movements and auditory stimulation to impact both of the brain hemispheres and increase neurological command over dystonic muscles. (8) In his article, "Dystonia and Secondary Symptoms," chiropractor Scott Theirl explains that, in the simplest terms, non-pathogen-induced dystonic brains have somehow learned to conduct movements incorrectly, and, through manipulating the brain's natural plasticity through exercise, movement correction progress can be made. (8) Though it does not focus on strengthening muscles, brain-based physical rehabilitation looks to repair the connections that elicit motion.

Several studies have proven the effectiveness of various fitness-related dystonia treatments. In a study conducted by the Department of Physical Therapy and Rehabilitation Sciences at the University of California – San Francisco, eleven out of twelve participants with crippling focal hand dystonia in the prospective follow-up study, using various brain-based and exercise techniques, were able to significantly gain range of motion, balance, strength, and posture and return to their occupations. (5)

The influence of exercise therapy upon movement disorders like dystonia, when adapted and executed properly, can open up a new world of possibilities to a patient: more career options, ability to explore different recreational activities, or simply the experience of living day-to-day without bothersome movements. Moreover, with physical activity outlets, dystonia patients are, in a sense, no longer at the mercy of their disorder.

With the contemporary obesity epidemic, modified physical activities for movement disorders prevent patients from developing inactivity-related conditions, like cardiovascular disease, metabolic syndrome, or diabetes, while directing the patient toward normal muscular function. In sum, exercise therapy encourages patients to lead constantly - improving lives, rather than depend on short-term treatments that arrest them in their current conditions.

Since research on dystonia and its treatment options is an evolving effort, there are still many discoveries to be made. The National Institutes of Health has recently established the new Dystonia Coalition, a collection of 40 sites in nine countries, working with pharmaceutical companies and patient advocacy groups to develop new treatment therapies for each distinct type of dystonia. (6) Along with these efforts, scientists are continuing to explore dystonia at the cellular level, with hopes of uncovering an underlying universal cause. Finally, neurologists are developing a more intricate system of deep brain stimulation to better observe dystonic brain interactions. With scientific advancements, the hope of further understanding the complexities of dystonia is imminent.

The symptoms of dystonia range from being agitating to excruciating. Whether they are enduring pain in single area or dispersed throughout the whole body, patients with dystonia all commonly suffer from involuntary muscle contractions, causing disturbances in movement, coordination, and balance. Quality of life is tremendously hindered, as these uncontrollable movements prevent patients from completing an array of daily activities.

Research has elucidated probable genetic and environmental catalysts of the disease, and doctors have been able to prescribe different medicinal, surgical, and therapy-based treatments to ease the pain. Fortunately, physical therapy techniques, ranging from brain-based rehabilitation to aerobic exercise, are possible remedies from secondary symptoms.

For the average patient with dystonia, freedom of movement is difficult to attain. Appropriately integrating exercise therapy into a patient's treatment regimen can potentially restore control, flexibility, muscular strength, and coordination. Utilizing the organic approach of exercise to chronic disease, more importantly, encourages progress toward proper neurological and physical function, rather than temporary relief from symptoms. In this respect, those with dystonia are able to recover through their own hard work and determination.

REFERENCES (LINK)

biography: Kaitlin Mauch is an undergraduate Health Education and Behavior senior at the University of Florida. She hopes to pursue a second bachelor's degree in nursing post-graduation, later working in pediatrics. Her hobbies include dance, exercise, and being involved in her campus community.

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