|
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.
"There’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 jessica.carter@gwinnettdailypost.com.
|
