What can someone with dystonia do to improve their quality of life?

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The overarching principle for individuals living with dystonia is to take practical action and directly counteract a challenge or problem. The following strategies will support that principle:
  • Increase your sense of control. Become an active participant in your treatment. Do not defer all of the responsibility for your wellness to others.
  • Build and maintain relationships. Confronting an illness requires support from other people. Opening up and sharing your vulnerabilities and fears with friends, family members and healthcare providers you trust can build a sense of connection and intimacy.
  • Seek out understanding and empathy. Find multiple places where you can talk about your experiences and feelings and be understood. Find a neurological team composed 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.
  • Treat depression and anxiety. Identify symptoms of depression and anxiety. If you experience symptoms, seek treatment.
  • Promote physical well-being and comfort. Treat your body well. Sleep is very important for overall well-being. Eat a well-balanced diet. Aggressively treat pain. Exercise with professional guidance to build strength, endurance and energy.
  • Sustain hope. Find something or someone who motivates and inspires you: a role model, an admired hero or someone whose outlook on life helps lift your spirits.
  • Achieve a sense of accomplishment. A sense of meaning and purpose are important. Be proud of any accomplishments you've made in the context of living with dystonia.
  • Combat shame. Bolster your self-esteem, and keep your chin up high. You should not be ashamed of your illness.
  • Break down obstacles to your freedom. Increased physical and mental effort may be required to go places or complete a task. Plan, pace yourself and rest when needed, but break down those hurdles or bypass them altogether.
  • Partner with an expert team of healthcare providers. It often takes a team of experienced professionals to treat dystonia. Find someone with expertise (and empathy) and stick with him or her.
  • 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.
This content originally appeared on the Dystonia Medical Research Foundation website at www.dystonia-foundation.org.

Continue Learning about Dystonia

Dystonia

When your muscles contract involuntarily, the condition is called dystonia. Dystonia causes a twisting or clenching of whatever body part is affected. For example, when you have a stroke, the affected arm and hand may be clenched ...

and held in a strange position. Dystonia can be very mild or very severe. It can make your life very difficult and this can lead to frustration, depression or anxiety. See your doctor to treat your symptoms and talk over your frustrations.
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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.