We are trying to provide information in several different ways and through many vehicles.We hope that this information and connections are helpful for you.

The are connections here for support groups, research foundations, information, articles, caregiving, traditional treatments and natural treatments. These take the form of books, web sites and community contributions on specific types of Dystonia.

Highly recommended resources

Find a Dystonia Healthcare Professional

This web page provided by the Dystonia Foundation is a great resource for finding Medical Professionals that indicate they have an understanding of Dystonia.

Dystonia Foundation

Founded in 1976, the Dystonia Medical Research Foundation (DMRF) is a 501(c)3 organization dedicated to serving all people with dystonia and their families. They have been very helpful with Noah and Alexis.

Dopa Responsive Dystonia Group

This group has information about the type of Dystonia that Alexis and Noah have.

This is the form of Dystonia that Noah and Alexis have. Retta has a lot of information and understanding to share about this type of Dystonia.

Books

The Books section has information about books related to Dystonia, Cerebral Palsy and Movement Disorders.

Web Resources

The Web Resouces section has information about web pages and web sites  related to Dystonia, Cerebral Palsy and Movement Disorders. These sites have information, support groups or are for research foundations.

Types of Dystonia

These are various groups that you can join to share information about specific types of Dystonia.  These include:

• Dopa-responsive dystonia
• Alcohol-responsive myoclonic dystonia
• Blepharospasm
• Cervical dystonia
• Generalised dystonia
• Hemifacial spasm
• Orofacial-buccal dystonia
• Oromandibular dystonia
• Spasmodic dysphonia
• Writer's cramp

If you have an interest, understanding or knowledge about any of these types of Dystonia, we would encourage you to join the community and contribute to everyones understanding. Joining is free and allows you to contribute and receive notifications about specific items if you want. We never spam or provide your information to third parties.

If there are other types that you would consider relevant and of interest, just let us know.

We are committed to making this site relevant and helpful for people dealing with Dystonia and related Movement Disorders. We have just begun a major effort to improve this site to do just that. We hope that it is helpful.

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The dystonias are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements, which are involuntary and sometimes painful, may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Those with dystonia usually have normal intelligence and no associated psychiatric disorders.

What are the symptoms of dystonias?

Dystonia can affect many different parts of the body. Early symptoms may include a deterioration in handwriting after writing several lines, foot cramps, and/or a tendency of one foot to pull up or drag; this may occur "out of the blue" or may occur after running or walking some distance. The neck may turn or pull involuntarily, especially when the patient is tired or stressed. Sometimes both eyes will blink rapidly and uncontrollably, rendering a person functionally blind. Other possible symptoms are tremor and voice or speech difficulties. The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue. Over a period of time, the symptoms may become more noticeable and widespread and be unrelenting; sometimes, however, there is little or no progression.

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