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Entries for June 2010



 A Major concern about people with cerebral palsy is that they have trouble gaining weight. A good, nutritious way of gaining weight for those with cerebral palsy is adding key foods to their diet. The following list is made up of these kinds:
  1. Corn oil or canola oil margarine on bread, vegetables, rice, pasta, hot cereals
  2. Powdered skim milk added to regular whole milk
  3. Wheat germ
  4. Raisins
  5. Puddings
  6. Peanut butter
  7. Custards
  8. Eggs
  9. Thick shakes
  10. Cheese
  11. Ice cream
There are also nutritional supplements available in drug stores that do not require a prescription; however, it is recommended that you consult your child’s pediatrician before purchasing any of these. There are also doctor prescribed supplements too. Remember that supplements are useful, but not as good as the real thing.

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Posted in: Cerebral Palsy
Hunter posted on June 30, 2010 Article Rating

Wikipedia defines osteopathy as an approach to healthcare that emphasizes the role of the musculoskeletal system in health and disease. This practice was created in the 1800s in the US by a man named, Andrew Taylor Still. He began a school, which is today called A.T. Still University in Missouri.

There are eight key principles in osteopathy:

  1. The body is a unit.
  2. Structure and function are reciprocally inter-related.
  3. The body possesses self-regulatory mechanisms.
  4. The body has the inherent capacity to defend and repair itself.
  5. When the normal adaptability is disrupted, or when environmental changes overcome the body’s capacity for self-maintenance, disease may ensue.
  6. The movement of body fluids is essential to the maintenance of health.
  7. The nerves play a crucial part in controlling the fluids of the body.
  8. There are somatic components to disease that are not only manifestations of disease, but also are factors that contribute to maintenance of the disease state.

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Hunter posted on June 14, 2010 Article Rating

While so called natural, or alternative treatments for dystonia can be helpful, they should always be used in conjuncture with conventional medicine. In any treatment plan the body, mind, and emotions should all be focused on, making sure that not only the body is getting therapy and medicine of some sort, but the person does not feel hopeless and keep their spirits as high as possible. You must also make sure you find a doctor that you feel comfortable with, and is very experienced and well-trained. Medical treatments for dystonia have improved in recent years, due very much to how responsive patients have been to botulinium toxin injections (Botox), and deep brain stimulation. Surgery is also an option, but it is usually not considered except for certain types of dystonia, and if all other treatments have failed.

There are also many effective drugs that are commonly used for dystonia, mainly drugs that affect the neurotransmitter chemicals.These are broken up into a few main groups:

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Ryan posted on June 13, 2010 Article Rating

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 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.


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:

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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Posted in: Resources
Raymond posted on June 11, 2010 Article Rating

When do symptoms of dystonias occur?

In some individuals, symptoms of a dystonia appear in childhood, approximately between the ages of 5 and 16, usually in the foot or in the hand. In generalized dystonia, the involuntary dystonic movements may progress quickly to involve all limbs and the torso, but the rate of progression usually slows noticeably after adolescence.

For other individuals, the symptoms emerge in late adolescence or early adulthood. In these cases, the dystonia often begins in upper body parts, with symptoms progressing slowly. A dystonia that begins in adulthood is more likely to remain as a focal or segmental dystonia.

Dystonias often progress through various stages. Initially, dystonic movements are intermittent and appear only during voluntary movements or stress. Later, individuals may show dystonic postures and movements while walking and ultimately even while they are relaxed. Dystonic motions may lead to permanent physical deformities by causing tendons to shorten.

In secondary dystonias due to injury or stroke, people often have abnormal movements of just one side of the body, which may begin at the time of the brain injury or sometime afterward. Symptoms generally plateau and do not usually spread to other parts of the body.

Are there any treatments for dystonias?

No one treatment has been found universally effective. Instead, physicians use a variety of therapies aimed at reducing or eliminating muscle spasms and pain.

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Retta Beery posted on June 03, 2010 Article Rating

What do scientists know about the dystonias?

Investigators believe that the dystonias result from an abnormality in an area of the brain called the basal ganglia where some of the messages that initiate muscle contractions are processed. Scientists suspect a defect in the body's ability to process a group of chemicals called neurotransmitters that help cells in the brain communicate with each other. Some of these neurotransmitters include:

  • GABA (gamma-aminobutyric acid), an inhibitory substance that helps the brain maintain muscle control.
  • Dopamine, an inhibitory chemical that influences the brain's control of movement.
  • Acetylcholine, an excitatory chemical that helps regulate dopamine in the brain. In the body, acetylcholine released at nerve endings causes muscle contraction.
  • Norepinephrine and serotonin, inhibitory chemicals that help the brain regulate acetylcholine.

Acquired dystonia, also called secondary dystonia, results from environmental or disease-related damage to the basal ganglia.

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Posted in: Dystonia
Retta Beery posted on June 01, 2010 Article Rating