Family copes with day-to-day challenges of Alzheimer's disease while raising awareness for Memory Walk

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buy this photo Tonya Fleener peers up at a family portrait taken more than 20 years ago in her southside Decatur home. Photos can sometimes help jog memory and be a help to Fleener in dealing with her Alzheimer's disease.

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Tonya Fleener nods. "Yes, I know there's a problem. We're fighting it as hard as we can."

The 53-year-old Decatur woman has Alzheimer's disease, the creeping brain disorder that robs a person of memories, the ability to care for themselves and, ultimately, is fatal.

She is among 200,000 or so afflicted in the United States before the age of 65.

Alzheimer's and other types of dementia are increasing. A Sept. 21 story on the front page of the Herald & Review was headlined: "New counts lift world dementia toll." By next year, scientists estimate there will be 4.4 million cases in the U.S. and 35.6 million cases worldwide - an epidemic.

Tonya worked in banking from the age of 16. In 2006, she had trouble doing her job. She had to leave.

"Before that, we knew something was wrong; we thought maybe her problem was stress-related, we never thought about Alzheimer's," explains Rodney Fleener, Tonya's husband of 33 years.

After consulting with a doctor here, the diagnosis of the early onset of Alzheimer's was made in January 2007 at Barnes-Jewish Hospital in St. Louis.

Since then, the Fleeners' life has revolved around Tonya's illness.

Before he leaves for maintenance work at Franklin School, Rodney puts Tonya's medications - seven pills - in a cup for her. "The medications are supposed to slow down the severity of the illness," Rodney Fleener said.

This is after he cooks breakfast. "I do the cooking, Tonya sets the table," he said. "She can't operate the microwave. She can't operate the washer and dryer. She can't drive a car.

"On Tuesday and Thursday, she works in a First Christian Church ministry for kids at Parsons School. Friday is Mall Day. She is able to catch a bus to get there. I give her $10 to spend. A lot of people at the mall know her."

In September 2008, the Fleeners renewed their wedding vows and asked guests to donate money for an Alzheimer's memory walk in Springfield. They collected more than $700.

Now, Decatur is having a memory walk Saturday, Oct. 10, in Fairview Park. Registration begins at 9 a.m. At 10 a.m., it will be 1½ miles or two miles on the bicycle path.

The Fleeners are on the committee to raise funds. So far, Tonya's team is the leader in that category. To register or donate, call 726-5184, or visit www.alz.org/Illinois.

"This is the first Alzheimer's memory walk in Decatur, I believe," Rodney Fleener said. "It's a major fundraiser. More funds are needed for research and education. 'We're on the move' is the theme."

Tonya was involved in a fatty fish oil test in St. Louis. It didn't help. She will donate her brain to science with the hope that it will assist in bringing about a cure.

Meanwhile, the Fleeners try to keep a sense of humor, try to laugh together as the misfortunes multiply.

"During the last year, I can tell the illness is progressing," Rodney Fleener said. "We were able to go to Florida recently but it was hard. New things, anything out of the routine, are difficult for Tonya."

Rodney gets encouragement from being a member of a support group at First Christian Church.

The illness is devastating on the family. The Fleeners have two daughters, Heather Egger, who lives in Decatur, and Stacey VanScyoc, who lives in West Virginia. There are six grandchildren.

In addition to worrying about their mother, the daughters face a 50/50 chance of inheriting the disease, thought to be hereditary.

The Fleeners were born and raised in Decatur. Rodney graduated from Lakeview High School in 1973. Tonya graduated from Stephen Decatur High School in 1974. They met at a party at Great Skate North.

They know that the early onset Alzheimer's Tonya has progresses much faster than the typical late onset. That's why the Memory Walk fund raising is so important.

bfallstrom@herald-review.com|421-7981

If you go

WHAT: Decatur Memory Walk

WHEN: Saturday, Oct. 10. Registration begins at 9 a.m.

WHERE: Fairview Park, Decatur

MORE INFO: e-mail melissa.chrisman@alz.org or call 726-5184

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