Emotional & Mental Health

Dystonia is More than a Movement Disorder

Dystonia is a neurological disorder that affects the physical body, but the impact goes far deeper and may affect a person's emotional and mental health. Individuals diagnosed with dystonia commonly experience symptoms that affect more than how the body moves.

The human brain is staggeringly complex: structures and pathways associated with movement are also involved in cognition, emotion, memory, and other mental functions. Research has demonstrated that individuals with dystonia are prone to certain mental health disorders, particularly depression and anxiety. Individuals may also experience sleep disturbance, pain, and sensory signs.

Click here to access an article from the DMRF newsletter on non-movement aspects of dystonia.

Regardless of the severity of dystonia symptoms, the presence of depression and/or anxiety is among the most significant predictors of diminished quality of life. Because untreated mental health disorders can have serious and lasting health consequences, several research groups have recommended more routine evaluation of individuals diagnosed with dystonia for co-existing mood and anxiety disorders.

For years, mental health professionals have recognized that coping with a chronic disorder like dystonia is similar to grieving a loss, such as a death or divorce. Common phases of dealing with dystonia include denial, guilt/shame, anger, bargaining, fear, depression, and acceptance. In some cases, the adjustment to chronic illness is so drastic that an individual's experience is comparable to the symptoms of post-traumatic stress disorder.

Click here to read an article from the DMRF newsletter on dystonia and grief.

Movement disorder neurologists are increasingly recommending that addressing the emotional and mental aspects of dystonia are essential for helping patients feel and function as well as possible. A team of specialists may be needed to implement a complete treatment plan.

Are You Feeling Hopeless? Having Thoughts of Suicide?

Help is available and you are not alone.

Dystonia can be a difficult and painful disorder to live with. Managing the day-to-day challenges can seem overwhelming and impossible.

Sources of Help
The Dystonia Medical Research Foundation is not a crisis intervention center. We do not have training in counseling people who are considering suicide. If you are depressed to the point of thinking about suicide, we strongly suggest that you:

  •     Call or contact the National Suicide Prevention Lifeline at 1.800.SUICIDE (800.784.2433) or 800.273.TALK (800.273.8255) to connect with a trained crisis worker now. If outside the US, look up crisis centers or distress centers in your phone book.
  •     Visit the nearest hospital emergency room
  •     Contact your family doctor or dystonia specialist
  •     Contact a mental health therapist
  •     Call a friend, family member, or neighbor
  •     Contact a religious leader or advisor

Signs that someone may be depressed can include:

  • Persistent 'empty' mood
  • Feeling hopeless, helpless, worthless, pessimistic, and/or guilty
  • Substance abuse
  • Disturbance in eating and sleeping patterns
  • Irritability, increased crying, anxiety or panic attacks
  • Difficulty concentrating, remembering, or making decisions
  • Persistent physical symptoms or pain that do not respond to treatment

Signs that someone may be at risk of suicide can include:

  • Talking about suicide
  • Suicide plans and past attempts
  • Statements about feeling trapped or hopeless
  • Rage, uncontrolled anger, seeking revenge
  • Acting recklessly
  • Preoccupation with death
  • Feelings that there is no reason for living, no purpose in life
  • Loss of interest in things and people that once brought pleasure
  • Making arrangements or giving away belongings
  • Drug or alcohol abuse
  • Dramatic mood changes, including sudden calmness, happiness

Sometimes there are no warning signs.

Dystonia Community

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