Coping Tips & Strategies

Quality of life is the ultimate goal of living successfully with dystonia.

The overarching principle of the following strategies for indivdiuals living with dystonia is to take practical action and directly counter act a challenge or problem. There are many distinct types of dystonia, and each presents its own unique challenges. The general principles herein, however, apply to all types of dystonia.

Increase Your Sense of Control. Become an active participant in your treatment. Do not defer all of the responsibility for your wellness to others. Learn about your illness. Investigate all treatment options and make your own choices while attending to the input of your medical team.

Build and Maintain Relationships. Confronting an illness requires support from other people--you deserve support! Opening up and sharing your vulnerabilities and fears with friends, family members, and health providers you trust can build a sense of connection and intimacy. Connecting with others who are living with dystonia by participating in support groups, online chat rooms, DMRF events, and other activities can be tremendously helpful. If your marriage or primary love relationship is strained, consider couples counseling.

Seek Out Understanding and Empathy. Unfortunately many patients with dystonia find it difficult to trust healthcare providers. Find multiple places where you can talk about your experiences and feelings and be understood. Make use of support groups and DMRF resources. Consider psychotherapy. Find a neurological team comprised of individuals who have expertise in dystonia and are empathic.

Develop Your Sense of Identity. You are not your illness. Do not allow your identity to collapse into that of your dystonia. Develop a more complex identity by pursuing your interests and striving to achieve your aspirations and goals. Consider counseling or psychotherapy if you need help identifying your goals and direction. Find creative outlets and hobbies in which to express yourself and your individuality.

Treat Depression and Anxiety. Identify symptoms of depression and anxiety.If symptoms are present, seek treatment.Depression and anxiety can impact quality of life and the severity of motor symptoms as well as interfere with one's motivation and ability to implement other coping strategies. Combined treatment (medication and psychotherapy) is often the most effective.

Promote Physical Well Being and Comfort. Thebody is the victim of dystonia, not the individual. Don't "beat up" or blame the victim, your body. Treat your body well. Sleep is very important for overall well being. Eat a well-balanced diet. Aggressively treat pain with medication, exercise, acupuncture, and other methods. Exercise with professional guidance to build strength, endurance, and energy. Discuss sleep problems with your doctor. Avoid excessive time in bed as it promotes fatigue and depression.

Sustain Hope. Find something or someone who motivates and inspires you: a role model, an admired hero, someone whose outlook on life helps lift your spirits. Of your friends and family, who gives you a boost when needed?  Spend more time with him/her! What activities energize you and get you excited? Does religion and or spirituality invigorate you?

Achieve a Sense of Accomplishment. If unable to work or continue highly-valued pursuits, one's self-esteem or pride can suffer a blow. A sense of meaning and purpose are important. Be proud of any accomplishments you've made in the context of living with dystonia. What pursuits give you a sense of achievement, make you feel good about yourself, and make you feel useful? Do more of them! Help others, and continue to work in some capacity if you are able to do so.

Combat Shame. Bolster your self-esteem, and keep your chin up high. You should not be ashamed of your illness. Psychotherapy can be effective in tackling deep feelings of shame. Take advantage of any attention directed to yourself--be bold and teach others. Be a positive role model for others. Strive to be altruistic, productive, and creative.

Break Down Obstacles to Your Freedom. Increased physical and mental effort may be required to go places or complete a task. You may have a tendency to say, "I can't do that anymore" or "That will exhaust me." When you find yourself saying "I can't," ask yourself: is that really true?  Is there a creative way to continue to go there or do that? Plan, pace yourself, and rest when needed, but break down those hurdles or bypass them altogether. Consider assistive devices when they increase your freedom.

Partner with an Expert Team of Healthcare Providers. It often takes a team of experienced professionals to treat dystonia:

  • Neurologist
  • Physical therapist/Occupational therapist/Physiatrist
  • Psychiatrist/Psychotherapist
  • Attendants and others
  • Other health care providers

Therefore, build your team, and partner with the experts. Find someone with expertise (and empathy) and stick with them. Ensure that all of your providers communicate with one another. Review your complete medication list with every doctor on every visit.

Prioritize Pleasure. Because of the work it takes coping with dystonia, individuals may decrease leisure activities and fun. Pleasure should be at the top of your priority list, not at the bottom. Pleasure is not a luxury, but a necessity. It's the fuel that can keep you going and re-energize you.

Information provided by Mark Groves, MD, Attending Psychiatrist in Movement Disorders, Alan and Barbara Mirken Department of Neurology, Beth Israel Medical Center, New York

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