"The stigma is incredible"
Woman adjusts to living with Alzheimer's

From the Gwinnett (Georgia) Daily News

By Jessica Carter, Staff Writer

Photographs taken throughout her career adorn the walls of Ruth Harris' apartment, each a reminder of people and places she has experienced. A soothing drum beat emanates from her stereo and flames lick at the tops of candles.

Books and magazines are stacked on an end table next to the sofa, on which her cat lies napping. 'Classic Brainteasers', books on spirituality, a three-month-old Newsweek with the bold headline 'Fixing Your Brain.' Ruth isn't reading these books for fun. It's self-imposed homework for the 58-year-old Norcross woman who has been diagnosed with Alzheimer's disease, a degenerative disease of the brain that causes memory loss and, ultimately, death.

"When you say 'Alzheimer's' people pull back. You can feel it", she says, kicking off her shoes to reveal toenails painted fire-engine red. "If I had a broken leg, I could says, "Hey, I broke my leg, let's talk about it." And you'd tell me about your broken leg, and we'd have a good laugh. But since it's Alzheimer's ... The stigma is incredible." In the four months since her diagnosis, Ruth's life as she knew it has dissolved. She had to leave her job as a regional trainer for Kinko's and has begun a search for housing she can afford on the monthly disability checks she receives.

But, she says, she's better today than four months ago. When she was first diagnosed, Ruth’s short-term memory was failing her. She had to leave notes reminding herself to unplug the iron, and carried a timer when she was cooking. She would leave her keys in an "obvious" place, only to forget where that was. She had trouble finding words when she spoke, and she easily became irritable.

"I noticed I wasn’t learning as fast as I used to, and I would lose words ...," Ruth says, her voice trailing off as she described the fog that seemed to envelop her brain. "I felt different, like I was changing. Things just didn’t work as smoothly."

She went to the doctor for symptoms of the flu in May, and picked up a brochure with a 10-question quiz on memory loss. She passed the quiz - which meant her memory was failing.

After visiting a neurologist and undergoing a battery of tests, from a brain scan to thyroid tests, the doctor confirmed what Ruth already felt: she had Alzheimer's disease.

"Ther's an adjustment period as it sinks in," she says. "Then you start to read and you see the horror of it all."

She began taking Aricept, a drug that slows the progression of the disease and helps lift the fog Ruth had been living in - leaving her with huge questions to answer about her future.

Ruth isn't married and she has no children to care for her. She is too young to qualify for senior citizens' services such as Medicare, but she isn't able to work for a living and she can't afford health insurance. "It's an example of a person who truly falls between the cracks," says John Thames, family and community services director for the Georgia chapter of the Alzheimer's Association.

"She’s a very determined person," says Thames, who took Ruth's first call to the association. "She values and treasures her independence. That makes it more challenging to meet her needs."

Although the Alzheimer's Association has helped Ruth find a less-expensive source for her medication, there is a three-year wait for reduced-cost housing in Gwinnett County. "Three years from now, there's no telling what her needs will be," Thames says.

Medications currently available to treat Alzheimer's delay the progress of the disease between one and two years. After that, biology is the only thing that can determine Ruth's condition.

And the odds aren't stacked in her favor. The duration of the illness may vary from three to 20 years, with the average at seven to 10 years. The decline generally is faster in people who have an early onset of the disease, like Ruth, according to the Alzheimer's Association. The areas of the brain that control memory and thinking skills are affected first, but as the disease progresses, cells die in other regions of the brain. Eventually, the person with Alzheimer's will need complete care. If the individual has no other serious illness, the loss of brain function itself will cause death.

Still, Ruth refuses to limit herself any more than she has to. "I'm not going to live my life according to statistics and averages," she says. "It is a terminal illness - there is no question of that. I don't want to think about this disease all the time. I like doing things. I want to enjoy that as long as possible. Knowing and accepting helps you figure out how to get around the limitations."

"Probably the best way for me to cope is to do something useful," Harris says. "If I can make use of it, I will function longer. ‘Use it or lose it’ is really true in this disease."

Instead of letting herself fall into a deep depression, Ruth has gotten involved. She called the Alzheimer's Association for help within 24 hours of her diagnosis, and she continues to work closely with the group both for herself and the benefit of others.

She will be honored Saturday for her dedication and her resiliency during the association's annual Memory Walk fund-raiser at Century Center in Atlanta.

"I think she's a hero. I think she's someone who is stronger than even she knows she is," says Dave Houston, vice president of development for the Alzheimer's Association. "It's not slowing her down, it's not stopping her, it's not changing her."

Even more remarkable, Houston says, is the assistance Ruth gives to the Alzheimer's Association when she should be on the receiving end of that support.

During a recent luncheon for Memory Walk team captains, Ruth addressed a crowd of more than 130 team captains to tell them about her experience.

"She is spreading the word any way she can ... that our community, that society needs to really step up and deal with this disease," Houston says.

By being so vocal about her condition, Ruth says she has had to face head-on the stigmas of the disease.

"What bothers me most? People's reactions," she says. "You get patronized. (People) don't know how to approach you. It's not that they're bad, it's just that they don't know how to talk to you like a friend or a new person."

"It's like there's a glass barrier between you. People don't connect with you."

She has turned to support groups, including the friends she has made through the online Dementia Advocacy Support Network (www.dasn.org), to voice her fears and discuss issues surrounding the disease. She also has turned to advocacy, recently attending a meeting in Macon with representatives from the local Alzheimer's chapter to discuss public policy changes in regard to the disease.

"I want them to find a cure, sure," she says. "But I really want them to change all social aspects around it."

"She's a very exceptional person. She's exceptionally bright, she's exceptionally aware," Thames says. "She's much more aware of what is happening to her than people in the first stages of early-onset Alzheimer's usually are."

"Most people who have the knowledge that she has about the disease are not willing to share that ... in terms of what is happening to her as a person. They are fearful, they don't want people to know what is happening to them."

"Being optimistic and not accepting defeat and not being depressed is important in dealing with this disease," Thames says. "I think her strong will is an asset."

Although she admits she is frightened to face the disease on her own, Ruth says in some ways it is a blessing.

"I am so pleased in some ways that I don't have to put someone I would love through the financial devastation and the emotional devastation of this disease," she says. "Other times, to have someone take care of me and hold me and help me ... That sounds wonderful." Ruth's diagnosis proves that Alzheimer's disease can affect anyone, not just the elderly as once perceived.

Two factors make this a critical time for Alzheimer's research, Houston says. First, the American population, which includes the huge baby boomer generation, is aging. Second, Americans are living longer than ever before.

"It has created a double effect of Alzheimer's becoming very prominent," Houston says. "I think there is a generation coming up that is going to be living in fear, fear of the unknown."

While certain links have been made between diet and exercise and the prevention of Alzheimer’s disease, research has been unable to offer any definitive solutions. The only protection is an early diagnosis.

"As medical science progresses there are diagnoses that are coming sooner," Houston says, adding that the aging generation of baby boomers is likely to greatly increase the numbers of Alzheimer's patients in coming years. "We have to be prepared to handle that."

In the meantime, Ruth Harris is determined to live her life from day to day. She goes to lunch with friends and generates graphics with her computer. She works a book of photo essays she hopes to publish. She also takes long walks in the woods, letting go of herself as she absorbs the sunlight and breathes in fresh, clean air. And, for a time, she forgets about the illness that will eventually make her forget it all.

"Will I be able to look at a flower and know that it smells pretty?" she asks. "Probably for a long time. Will I remember its name? Who cares - I don’t remember that now."

Jessica Carter can be reached via e-mail at [email protected].