Some inspirational Stories about Dystonia

Dystonia Definition, Awareness, and Inspiration

Cerebrum Health Centers

Dystonia Definition, Awareness, and Inspiration

Dystonia may be a mysterious condition, but it is not a short-reaching one. It is estimated that as many as 250,000 people currently suffer from the neurological disorder. That’s what makes it so important to raise awareness and share some inspirational stories.

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration How one woman isn’t letting dystonia win

It was Chelsi Christman’s first-grade teacher who first noticed the problem.

Chelsi couldn’t write her name, she could barely hold onto a pencil. There was a blister on her thumb from clutching it.

Chelsi’s mom, Arletta, had noticed some problems before that as well. Her 4year-old daughter couldn’t drink out of a regular cup without spilling all over while her 2-year-old son didn’t have the same problem.

“I just thought maybe she was clumsy,” Arletta said.

It started with tremors. Chelsi would appear to be shivering. Arletta remembers the dentist asking if she was cold. After her first-grade teacher stressed that something was wrong, Chelsi’s parents started taking her to doctors. But no one seemed to know what was happening.

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration “I discovered that not only were we frustrated, but the doctors were,” Arletta said. “In fact, our family doctor always told me, ‘She’s just not by the book.'”

They went to Riley Hospital for Children at IU Health, Indiana University and the University of Michigan, and Chelsi tried all different medicines, MRIs and even Botox injections. Doctors guessed tremors, then Huntington’s disease.

It wasn’t until Chelsi’s junior year at Wapahani High School that a neurologist diagnosed her with dystonia. via How one woman isn’t letting dystonia win

Peace Bridge Awareness

to

Honor

Dystonia

Thanks to a special procedure called deep brain stimulation, Caleb is a normal kid.

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration Now, together with his family, Caleb and his father Jim are giving back by raising money and awareness for a disease many have never heard of.

Jim Metherell created Toss 4 Dystonia, a local corn hole tournament.

He’s been running the tournaments for four years, and this year he hopes to raise $30,000 for the Dystonia Medical Research Foundation.

“And hopefully we exceed that,” he said Thursday at a Larkin Square tournament.

Giving back is important to Jim because the surgery that Caleb had gave Jim his son back.

Deep brain stimulation runs electrodes from his chest to his brain, which helps normalize his movements.

“Caleb doesn’t need a student aide in school anymore. He’s much more independent. He’s really getting a lot more out of life,” said Jim. “It used to be harder to walk around in general,” Caleb said. “Now at school, I don’t need to take a break.”

Caleb is thrilled with his progress and wants other kids with Dystonia to keep their chins up. via Peace Bridge to Honor Dystonia Awareness

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration Kevin Pillar Returned A Piece Of My Sons’ Childhood

Weeks went by and your name was never mentioned. Then one day, in the most unexpected way I could have imagined, my son said your name. Only this time the words “Kevin Pillar” took on a whole new meaning.

The episode, like so many others, left my son sprawled out on the floor.

You see, both of my boys have a rare neurological movement disorder called Dystonia. It causes painful twisting and contractions of the muscles. The episodic nature of it means that one minute they are running and playing like any other child and the next minute their hands and legs stop working. This means lots of falls and has made my six year old apprehensive about participating in team sports.

But on this particular day when his feet locked and twisted beneath him while chasing his friends, something unexpected happened.

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration “You have given them a reason to play and a way to embrace their disability. In all your athleticism they have found in you someone that they can recognize in themselves.”

He had been running hard when he hit the ground and he slid across my hardwood floor with one arm outstretched over his head. But instead of embarrassment, his expression showed joy. “Hey!” he said giggling, “Did you guys see that? I looked just like Kevin Pillar!” It made us all laugh. He was right. It looked like a sliding dive he had seen you do on TV. The only thing missing was a baseball in his little hand. via Kevin Pillar Returned A Piece Of My Sons’ Childhood

How I Walked Down the Aisle at My Brother’s Wedding With Dystonia My brother became engaged July of 2015, a couple of months prior to my diagnosis of dystonia, and I had never been so excited. He has picked the most amazing woman, and she is a true gem. As my diagnosis progressed, I had to use a wheelchair. I lost the ability to walk due to the uncontrollable and unexpected muscle contractions. I was in the hospital for three months while the doctors were stumped and unsure what to do.

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration

Tracy (right) with her brother and sister-in-law

Dystonia Definition, Awareness, and Inspiration

Dystonia Definition, Awareness, and Inspiration I remember my brother and (now) sister-in-law sitting in the hospital room with me and me telling them specifically, “I am going to learn how to walk. I am going to walk down the aisle on the biggest day of your lives.” Both my brother and my sister-in-law have been my biggest supporters, and I was not going to let them down.

The pain I experience is absolutely excruciating, but I refused to give up. I started with short distances, practicing several times a day. I would then continue to push myself, until the pain was unbearable. I didn’t care about the pain; I was going to walk down that aisle. I didn’t care if I needed crutches; I was going to do it. via How I Walked Down the Aisle at My Brother’s Wedding With Dystonia

Learn more at the Cerebrum Health Centers Website

Dystonia Definition, Awareness, and Inspiration