SIOUX CITY |  For years Susan Shacka worked as a secretary in Orange County, Calif. Now, the 56-year-old types with one finger.

Her speech is slow and choppy. Her gait is staggering as she moves about her quaint northside apartment, steadying herself on the back of a chair.

Everyday tasks like putting the cap back on a tube of toothpaste and cooking a meal are a struggle for Shacka.

The Council Bluffs, Iowa, native, who moved to Sioux City in 2012 to be closer to family when her tremors worsened, suffers from a rare form of ataxia -- a degenerative disease of the nervous system that affects her movement and balance.

"I had tremors. My handwriting was getting worse. I was dropping cell phones. I knew I had a problem," Shacka said in slow choppy speech as she sat at her computer.

Since the closest support group for people suffering from ataxia is over three hours away in Des Moines, Shacka turned to the Internet to gain support and spread awareness. She formed the community page: "Ataxians Helping Other Ataxians" on Facebook to communicate with others around the world who share her condition.

"My mission is to get the word out. This could happen to them," she said.

According to the National Ataxia Foundation, an estimated 150,000 Americans are affected by some form of ataxia, which is most often caused by a loss of function in the cerebellum.

Ataxia, which can be hereditary or sporadic, often begins in an individual's 20s and 30s, but a person may not show symptoms until their 60s. Children also suffer from ataxia.

Elizabeth Hartman, Shacka's neurologist at CNOS is Dakota Dunes, said genetic disorders, stroke and diseases such as multiple sclerosis can cause ataxia. Shacka, she believes, has an autoimmune form of ataxia.

Shacka lost 80 pounds in 2009 after lap-band surgery, then her health rapidly declined. She developed Guillain Barre Syndrome, an autoimmune disorder where the body's immune system attacks part of the peripheral nervous system which connects the central nervous system to the limbs and organs. Shacka spent eight months in a skilled nursing facility learning how to stand and walk again.

Toward the end of 2011, Shacka noticed her hands had begun to shake. Trouble swallowing and slurred speech followed. After nearly eight months of appointments and testing, she was diagnosed with ataxia at the University of Nebraska Medical Center. Shacka, who receives physical, occupational and speech therapy, said her condition hasn't worsened or improved.

According to Hartman, current ataxia research is focusing on deep brain stimulation. Results, she said, have been mixed so far.

Physical therapy, she said, is a "mainstay" of treatment because it can improve muscle strength and decrease the risk of falls in patients who struggle with walking and balance.

"Some of our patients need to have an assist device like a walker or even a cane that can help them walk as well," she said.

Shacka, who uses a walker outside of her apartment, longs for a cure and to return to the life she lived before ataxia.

"I want to write and I want to type. I want a job. I don't want to be on disability the rest of my life," she said.


Health and Lifestyles reporter

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