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In This Issue » Body & Style » My Life with Dystonia

My Life with Dystonia

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Written by: Melissa M., Reporter – Posted: Mon Apr 30th, 2007
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Early Onset of Dystonia

The summer before I started third grade I couldn't hold a pencil to write my name, and when I tried holding it would fall out of my hand. When I did try to write it was very painful, and the most I could do is make a line for a letter. My parents became very worried, and began taking me to several different doctors, until I was diagnosed with Dystonia. My parents and I had never heard of Dystonia before. I learned to adapt with not being able to write legibly and started using a computer to do my school work.

Dystonia is a neurological disease that affects a person's muscles leading to have uncontrolled muscle spasms. A person affected by it has a hard time relaxing the muscles that are affected, causing the body to form into uncomfortable positions. There are nearly 13 different forms of the movement disorder that are found in varying areas throughout the body. It does not discriminate against any sex, age, or culture. In the United States alone it has been estimated that at least 300,000 people have been diagnosed with the condition. Some of the symptoms of the syndrome include curling or bending of the body in certain area like the back and sometimes shaking of one or more muscles such as the hand or foot. The younger the age of onset the more likely it will become generalized and affect more then one area of the body. The older the person is, the more likely it will begin in one of are of the body and stay localized.
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I believe they are working on a similiar surgery with parkinsons'
patients. So I would assume that this surgery saved your life. If
you didnt have it your muscles would of atrophied and and have
contractures so bad that you would be bedridden. Then once you are
bedridden you are already set up for death. It amazing to see how
much doctors can do, even though we as human being know so very
little about how our body works. Im glad things worked out for
you. You have probably have a beautiful child to live for. Also Id
like to say that you went to a very good hospital. One of the best
not just in the country but the world, with some of the best
doctors as well.
dysgraphia can also be spacial... can't have much a grasp on
spacing between letters, etc.
I'm just starting to learn about dystonia. I belong to a yahoo
group for Dysgraphia and those who have it or loved ones of those
who have it. There was a lady on our group, who believe it or not,
had a son with a rapid dysgraphia onset (dysgraphia is where you
struggle any time you write, and the words won't come out right,
there's the battle of the letters that don't want to form, and
some of us have pain when we write too). Come to find out, that
her son was not writing any more and his muscles were atrophying
before her eyes and he struggled with doing anything like talking,
moving, anything. Finally, after many 2nd, 3rd, and 4th opinions,
he got the diagnosis of Dystonia. There's looking into treatment,
and I will definitely tell his mom about your experience. God
bless.