North Jefferson News, Gardendale, AL

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September 26, 2012

Mt. Olive woman is local face of ataxia

For more than a decade, there has been an international awareness day for a disease many people have still never heard of.

A Mt. Olive woman, Denise Higdon, knows exactly what ataxia is; she was diagnosed with it 27 years ago.

Sept. 25 is International Ataxia Awareness Day. Ataxia is a group of neurological disorders that often impair coordination, hearing, vision and speech. There is currently no cure or treatment for ataxia.

Higdon, 52, was 25 when she was diagnosed. The disease forced her to quit her job at Joe Money Machinery when she was 35 because of fatigue, slurred speech and slow reaction times as she got more tired.

“I was working eight and a half hours, the best parts of my day,” she said.

“I loved my job. I’m a people person. Quitting work was pretty major,” she said. “But quitting driving was really bad.”

Higdon went from walking normally to staggering, using a walker and then using a wheelchair. She stopped driving 14 years ago.

“It’s progressive. I may not notice the changes day to day, but I’m to the point now I can from year to year,” she said.

Her husband, John Higdon, helps her in and out of the shower, puts her shoes on for her and does a lot of other “little things.”

“It’s a very humbling, frustrating disease,” Higdon said. “It affects basic things you really don’t think of. ...I think the little stuff frustrates me more than the big stuff.”

Higdon knew about the disease when she got engaged, and so did her fiance. Higdon said she did not expect John to marry her.

“I thought, ‘I can’t expect this man to do this. This is big,’” Higdon said. “But he was just up for it.” They have been married 25 years.

Higdon had a good idea of what to expect; her sister, Jackie Guercio, was diagnosed with ataxia when she was 15. It was 12 years later when Higdon was diagnosed.

Despite the hardships, Higdon said the disease has made her a better person.

“I have a strong faith. I’ve learned that in our weakness, God is strong,” she said. “It has allowed parts of me to come out that probably never would have. It has made me more compassionate. It has definitely made me patient, even though I have a long way to go.”

Higdon has Friedreich’s ataxia, which is named for the German doctor, Nikolaus Friedreich, who discovered the disease in the 1860s.

In the past few years, Higdon has witnessed the medical community become more knowledgeable about ataxia. When her sister was first diagnosed, doctors told her parents that she wouldn’t live to see age 21. She is now 49.

Higdon does not allow her disease to stop her life. She has served as a volunteer at the North Jefferson Women’s Center on and off for 20 years, currently being an active volunteer.

She also receives help and moral support from a support group in Birmingham.

Higdon encourages others with the disease to reach out for help.

“I know how scary it can be. I know how scary it was when my sister was first diagnosed,” Higdon said. “I know there are people out there who have it and feel like they’re the only ones. They’re not.”

To learn more about ataxia, visit www.ataxia.org.

Contact the Birmingham support group, led by Becky Donnelly, at (205) 987-2883.

Higdon can also be contacted on Facebook.

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