Life goes on for WKU student battling ataxia

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By JUSTIN WILLIS Daily News
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BOWLING GREEN, Ky. ≈ With her hectic schedule as a full-time college student with a full-time job, Shannon Johnson of Brownsville says she relies on energy and her faith to get her through the day.
Plus, the busier she stays, the less she notices the gradual degeneration of her muscular system, caused by a rare neurological disorder called ataxia.

At 22, she faces some frightening prospects in her future: Tremors in her hands will increase, her speech will become more slurred, her balance will deteriorate.

Ataxia is often fatal with no treatment or cure. Ever since she was diagnosed with the hereditary disorder at 18, she has fought the emotional burden using faith and hope, along with a generous dose of support from her mother, Janice Johnson.

âŒ*It was really hard to grasp at first,â–* Shannon Johnson said. âŒ*Sometimes itâ–“s difficult emotionally, but I have to get over that. Thereâ–“s really nothing we can do about it.â–*

Ataxia affects 150,000 Americans and is often misdiagnosed as multiple sclerosis, according to the National Ataxia Foundation. Janice Johnson serves as an ambassador for the national group and is working to establish Kentuckyâ–“s first support group for ataxia sufferers.

Janice Johnson said her husband, Garrold Johnson, also suffers from the disorder and his condition is much more advanced than Shannonâ–“s. Janice Johnson said she hopes to establish a network for people who have ataxia, and their relatives.

The disorder causes a slow, progressive deterioration of nerve cells in the spinal cord and cerebellum. Symptoms may appear at any age, but usually surface when people are in their 20s or 30s, according to the foundation. The disorder does not typically affect intellectual abilities until the ataxia is far advanced.

Shannon Johnson is attending Western Kentucky University and plans to major in social work, possibly with an emphasis on child welfare. She works full-time as an assistant director of a day care center.

Johnson was once able to âŒ*write beautifully,â–* but now is unable to take notes or write because of the tremors in her hand. People have been helpful and well-mannered in her classes and have kept stares or other comments to a minimum, she said.

When Johnson realized the condition was progressing and the inevitable challenges she would face attending school, she considered dropping out about a year and a half ago, she said. Janice Johnson helped persuade her not to quit and keep fighting, Shannon Johnson said.


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