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Greenbrae woman stays fearless in face of disease

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Old 09-15-2006, 07:29 AM   #1
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Default Greenbrae woman stays fearless in face of disease

Greenbrae woman stays fearless in face of disease
Beth Ashley





COURAGE: Lorri Coppola, a former teacher at San Rafael's Davidson Middle School, has Lou Gehrig's disease and will take part in a walk for ALS in Oakland this weekend. IJ photo/Jeff Vendsel

Lorri Coppola of Greenbrae, a teacher in San Rafael for 32 years, has ALS - Lou Gehrig's disease.
You wouldn't know it from the way she darts about her apartment.

You wouldn't know it from her almost constant smile.

The only tipoff is her voice, strangled by the paralysis of her throat muscles.

She can't articulate.

She can't swallow solid food.

But Coppola, age 66, is relentlessly upbeat, doing everything she can to postpone the total paralysis and early death that is her probable fate, and determined to help others - at least 22 of whom live in Marin - who also have the disease.

On Sunday, she will walk in the three-mile fundraising Walk to D'Feet ALS at Lake Merritt in Oakland.

Fifty friends, colleagues, former students and school parents will join her. Her efforts have already raised $9,000 for the Alzheimer's Association of the Bay Area, which underwrites research, low-cost treatment and an array of support for people with ALS.

Coppola says "the cost of care-taking is enormous," up to $200,000 a year. "Help from the ALS society is so needed."

Sunny and quick, she sits for an interview in her waterside apartment, writing answers to questions on an erasable slate.

She also furnishes print-outs of information she wrote on her computer, explaining what has happened so far.

Coppola retired in 2001 from Davidson Middle School, where she taught physical education to two generations of San Rafael students.

In January 2005, she had just returned from a trip to Southeast Asia when she started experiencing "a fat tongue."

She thought she might have a travel virus.

By summer, her speech was noticeably compromised and, in December, she was diagnosed with ALS, amyotrophic lateral sclerosis, a fatal neuromuscular disease that attacks the motor neurons and ultimately makes the simplest movements impossible.

Coppola has met the diagnosis proactively, seeking out every treatment she can think of.

She sees Dr. Richard McCarthy, a neurologist at Kaiser Permanente Medical Center in San Rafael; she is treated by a multidisciplinary team at the University of California at San Francisco's ALS clinic; she makes regular visits to Dr. Lobsang Dhondup in Sausalito for treatment with Tibetan herbs.

She also does yoga and Pilates at the 24-Hour Fitness at Larkspur Landing. She meditates daily.

She gets hyperbaric treatments (inhaling greater-than-normal amounts of oxygen) four times a week with Dr. Geoffrey Saft in Corte Madera.

She thinks her all-out health regimen may be the reason her disease has not progressed as rapidly as it does in some others.

She is not without hope. She says a Fairfax resident with ALS who also had lost the gift of speech was treated with Tibetan herbs "and now he speaks well." The herbs, she hopes, might reverse her losses, too.

Dr. Catherine Lomen-Hoerth, an ALS clinician and researcher at UCSF, is less hopeful. She says she understands why patients turn to alternative therapies "because Western medicine has not found a cure. But I have not seen any alternative therapy that has made a significant difference."

Coppola has a type of the disease called Bulbar ALS, which begins in


the throat, affecting speech and swallowing, then spreads to the limbs. Lifespan is shorter with this type of ALS, doctors say, because it causes breathing problems sooner.

Lomen-Hoerth says medicines are available to treat some of the symptoms of ALS - cramps, stiffness, excess saliva, "easy laughing and crying," depression - and says there are machines to help support patients' breathing, and procedures to insert feeding tubes "to support optimal nutrition."

Linda de Mello, executive director of the ALS Association of the Greater Bay Area, speaks of devices that help patients communicate - from word boards like the erasable slate Coppola uses to computers operated by eye movements.

The ALS association loans these and other devices to people whose insurance will not pay the costs.

The association operates in an area stretching from San Luis Obispo to the Oregon border. "There are 1,000 ALS patients in that territory," says de Mello, all in various stages of the disease. Life expectancy of ALS patients, she says, is two to five years from time of diagnosis.

Coppola's body movements are not yet impaired: she walked five miles on Monday, getting ready for this weekend, and has high hopes she can go skiing in Colorado this winter.

A lifelong athlete, she has been a skier, tennis player, golfer and racewalker, in addition to teaching regular school classes in P.E. and after-school classes in gymnastics and track.

She began racewalking in 1988 and has competed in Australia and South Africa as well as in international meets in the United States.

"I do not experience the tiredness that most ALS patients have," she says.

Apparently not: She has an active life, driving her own car, seeing friends, preparing her own meals, playing golf in Mill Valley when she can.

Because she can no longer ingest solid food, she had a feeding tube inserted several weeks ago, through which she takes liquids.

When the wound from the tube heals, she plans to resume playing golf.

Lomen-Hoerth says Coppola is "an exceptional person, undaunted by her diagnosis. Her spirit is very uplifting."

Meanwhile, life goes on. After Sunday's walk, she will meet her twin brother, Jim, in Las Vegas, and they will visit the Grand Canyon.

Her brother - his wife, four children and two grandchildren - are her only relatives.

She lives alone and plans to do so as long as possible.

Why is she so buoyant in the face of her diagnosis?

"I don't want to be down," she says in her strangled voice. "I want to be up."

What keeps her going?

She throws up both hands.

"Life," she says, and keeps on smiling.

Contact Beth Ashley via e-mail at bashley@marinij.com

http://www.marinij.com/marin/ci_4341800
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