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“It Stacks on Our Shoulders Like Bricks” “It Stacks on Our Shoulders like Bricks” Burden of Dystonia is More than a Movement Disorder Dystonia is a neurological disorder that affects the physical body, but the impact goes far deeper. The hallmark signs of dystonia are excessive, involuntary muscle contractions that cause abnormal postures and/or repetitive movements. Individuals diagnosed with dystonia also commonly experience symptoms that affect more than how the body moves. “Besides the physical motor symptoms MENTAL HEALTH of dystonia, many patients suffer from The human brain is staggeringly complex: psychological complaints, such as anxi- structures and pathways associated ety and depression, but also problems with movement are also involved with cognition, pain, and sleep have in cognition, emotion, memory, and been reported. It appears that the type other mental functions. Research has of dystonia predicts which non-motor demonstrated that individuals with symptoms are most common. However, dystonia are prone to certain mental there is a lot of overlap,” Professor health disorders. Marina AJ de Koning-Tijssen is a in the general population will experience movement disorders specialist in the “Whether these symptoms are part depressive and/or anxiety disorders at Department of Neurology, University of the dystonia syndrome or are a some point in their lives. Medical Centre Groningen (Netherlands) consequence of living with dystonia and DMRF research grant recipient. is not totally clarified yet,” elaborates Patterns of psychiatric manifestations Much of her work is devoted to better Dr. de Koning-Tijssen. “Nevertheless, may vary depending on the type of understanding non-motor features researchers have found some clues dystonia. Individuals with cervical associated with dystonia. She explains: that it is more likely that the non- dystonia or dopa-responsive dystonia “Research showed that non-motor motor symptoms are part of the appear prone to both major depressive symptoms are an important burden dystonia syndrome.” disorder and anxiety disorders. Anxiety for many patients with dystonia. Some disorders are especially prevalent in studies showed that the non-motor ❍ Depression & Anxiety dystonia-affected musicians. Rates of symptoms even had a bigger influence Individuals with dystonia are more likely depression are high among individuals on quality of life than the dystonic to experience anxiety and depression with blepharospasm. By contrast, there symptoms.” than the general population, and at may be little or no increased risk for higher rates than individuals with other depression and anxiety associated Movement disorder neurologists are chronic disorders. Studies have shown with spasmodic dysphonia/laryngeal increasingly recommending that address- that as many as 70% of focal and gen- dystonia compared to the general ing these non-motor aspects of dystonia eralized dystonia patients will experience population. is essential for helping patients feel depression and/or anxiety over their and function as well as possible. A lifetime. For individuals with cervical It would seem intuitive that individuals team of specialists may be needed to dystonia, this number may be as high with the most severe dystonia symptoms implement a complete treatment plan. as 90%. By comparison, 35% of people are more susceptible to depression 14 DYSTONIA DIALOGUE and anxiety. In a study of mental health disorder, a non-motor feature that “Having dystonia, or any disorders among individuals with appears uniquely common among disability or chronic condition, spasmodic dysphonia, severe voice individuals with this particular impairment did seem to predict higher diagnosis but not dystonia more isn’t just about the symptoms. rates of depression and anxiety. Simi- generally. People tend to forget they larly, pain is highly correlated with depression in dystonia. But ironically, ❍ Cognition are a whole person with multiple studies have shown that the “Problems with cognition are usually anger and frustrations, guilt, severity of dystonia is not a dominant mild and have been reported in patients influence on mental health. “In some with inherited young onset dystonia depression, and it builds up. types of dystonia the psychological and myoclonus-dystonia,” says Dr. de We aren’t just a product of complaints have no association with the Koning-Tijssen. The source of cognitive severity of the dystonic motor symptoms,” changes can be challenging to assess, a sudden condition. says Dr. de Koning-Tijssen. “Therefore, and research continues to explore this. it is unlikely that the psychological Medications used to treat dystonia can “Therapy helped me symptoms are a consequence of living cause cognition problems, especially with the difficulties of dystonia.” affecting memory. Mood disorders can learn to process what I cause changes in executive functioning was feeling both mentally Regardless of the severity of dystonia and ability to self-regulate. Disabling symptoms, the presence of depression dystonia symptoms may make it difficult and physically—it made and/or anxiety is among the most to concentrate, leading to attention me pay attention to what I significant predictors of diminished deficits. quality of life. Because untreated was hanging on to, what mental health disorders can have serious Several lines of evidence suggest was good around me, what and lasting health consequences, mental health disorders are part of the several research groups have recom- underlying neurology of dystonia, not to not waste my energy on, mended more routine evaluation of secondary to the dystonia or simply a what to finally let go. I had individuals diagnosed with dystonia for coincidence. For example: co-existing mood and anxiety disorders. to sort out the person I was • Depression and anxiety often occur prior to the onset of dystonia. before dystonia, and now ❍ Social Anxiety Social anxiety is the most common • with it. And it’s helped. There may be no correlation between anxiety disorder among individuals the severity of a person’s dystonia with dystonia. One study showed that and psychiatric symptoms. 50% of patients with cervical dystonia “Our emotional state can • experience social anxiety, seemingly Increased depression is seen in both affect our symptoms. We rooted in low self-esteem due to nega- asymptomatic DYT1 gene carriers and those with dystonia symptoms. clench our necks, tighten our tive body image and not necessarily correlated to severity of dystonia • scalps when we cry, we curl Reduction in dystonia severity symptoms. often does not alleviate depression our bodies inward. It stacks or anxiety. ❍ Alcoholism on our shoulders like bricks. Myoclonus-dystonia is a risk factor Furthermore, neurotransmitters We carry everything with us.” for alcoholism, and individuals with associated with dystonia also have cervical dystonia and isolated (primary) roles in psychological processes: ~Michaela Whitney, generalized dystonias may also be prone. Alcohol abuse in myoclonus-dystonia Continued on page 16 DMRF Member may be linked to obsessive-compulsive SPRING 2018 15 “Mention all symptoms connected to the dystonia to your neurologist, but especially depressive symptoms and anxiety are common—and important to address. Also sleep problems, fatigue, problems with alcohol consumption, and obsessions can be related to the dystonia.” ~ Professor Marina AJ de Koning-Tijssen, Department of Neurology, University Medical Centre Groningen “Some researchers suggest that the SLEEP PAIN non-motor symptoms result from an Problems with sleep are among Not everyone with dystonia experi- altered metabolism of signaling sub- the most common and problematic ences pain, but depending on the type stances in specific regions in the brain. non-motor symptoms associated of dystonia, pain can be a pervasive Two of those substances are dopamine with dystonia. Although there is little and disabling symptom. Up to 76% of and serotonin. Especially serotonin is evidence that dystonia causes daytime cervical dystonia patients have pain in known to play a role in psychological drowsiness, several studies do suggest the head, neck, and sometimes arm. complaints but also in sleep.” Dr. de dystonia interferes with the ability to Koning-Tijssen recently earned a sleep well. Fatigue is common and Pain can often be attributed to the research contract through the DMRF’s can be debilitating. Sleep disturbances repeated dystonic movements and Myoclonus-Dystonia Research Program occur even in cases when the dystonia abnormal postures. However, not to examine the role of serotonin in symptoms are reduced or absent during all patients with similar symptoms dystonia. Elze Timmers, PhD is inte- sleep, and in cases where the dystonia experience the same degree of pain. grally involved in the project. is well-controlled with treatment. This suggests the relationship In a study of blepharospasm and between dystonia and pain may Researchers acknowledge the oromandibular dystonia patients, the be more nuanced. complex interplay between a person’s more severe the dystonia, the greater movements, behaviors, and emotions. the sleep disturbance. Interestingly, In many cases, alleviating the dystonia Dystonia is a formative experience; the in a study of focal and generalized symptoms will reduce pain. For example, impact can be life-changing. People dystonia patients, trouble sleeping the sustained intense neck muscle naturally have an individual emotional did not appear to correlate to severity contractions of cervical dystonia often and mental reaction to their
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