Story about Dystonia Disorder .

From birth

Nov 11, 2015

By: Michele


DURING MY BIRTH, I WAS PERMANENTLY INJURED, DUE TO MY LEFT ARM BEING CAUGHT UNDER MY BODY. THIS UNJURY IS CALLED BRACHIAL PALSY. WHEN A "NORMAL" BIRTH TAKES PLACE THERE IS ABOUT 2 POUNDS OF PRESSURE ON THE BABIES HEAD WITH EACH CONTRACTION. IN MY CASE, BECAUSE OF THE OBSTRUCTION THERE WAS AROUND 50 POUNDS OF PRESSURE. THIS CAUSED NERVE DAMAGE, MUSCLE LOSS, AND FOR MY SCAPULA BONE TO BE FUSED TO MY RIBS. I HAVE LIMITED MOVEMENT IN MY LEFT ARM AND AS A RESULT OF THIS INJURY, I HAVE DYSTONIA. 

DYSTONIA IN MY FEET BEGAN WHEN I WAS 8 YRS OLD.

MY ENTIRE LIFE, I HAVE ONLY BEEN COMFORTABLE SITTING IN THE FETAL POSITION, BUT DIDN'T UNDERSTAND WHY.

TREMORS IN MY HEAD BEGAN WHEN I WAS 14.

IN MY TWENTIES THE TREMORS BEGAN TO WORSEN. I WAS FINALLY DIAGNOSED WHEN I WAS 28 WITH SPASMODIC TORTICOLLIS.

IT'S NOW 2015, I'M NOW 40 YRS OLD AND HAVE SUCH SEVERE CERVICAL AND LIMB DYSTONIA THAT I'VE BECOME UNTREATABLE.  I'VE DECIDED TO FOREGO ANY TREATMENT BECAUSE IT DOES NOTHING. SURGERY I DON'T FEEL IS AN OPTION FOR ME, SINCE IT CAUSES MEMORY LOSS, AND MY MEMORY HAS BEEN BAD MY ENTIRE LIFE, I CAN'T AFFORD TO LOSE MORE OF IT. LIVING WITH DYSTONIA FOR THE PAST 40 YEARS IS THE MOST DEPRESSING AND DEBILITATING SITUATION I COULD IMAGINE.

I JUST REMAIN POSITIVE, GRIN AND BEAR IT.

I GET SOME RELIEF FROM MASSAGE AND EXERCISE.

 

 

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