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Parkinson's Disease Patients Fight for Best Possible Life
Thursday August 21, 2014
The Denver Post - A diagnosis of Parkinson's disease is devastating and brings with it a steep learning curve. If climbed, patients say, life can be good.
Amid speculation that a recent diagnosis of Parkinson's, or depression associated with it, might have been a cause for Robin Williams' suicide, local patients with the disease expressed dismay that it may have felt like a death sentence for the iconic actor-comedian.
"It would be awfully sad, but we don't know," said Kirk Hall, who learned he had Parkinson's in 2008 at age 59. "When I was first diagnosed, I was really down about it, but you have very little information at that point."
Parkinson's, a slowly progressive neurological disorder that disrupts movement, muscle control and balance, is known by many for its classic symptoms: tremors, slow motions, unsteady or shuffling gaits, erratic movements, slurred or soft speech, difficulty swallowing, and rigid limbs, neck and trunk.
About 1 million Americans and an estimated 17,000 Coloradans have Parkinson's. It's not fatal but can reduce lifespan. The Centers for Disease Control and Prevention rate complications from the disease as the 14th leading cause of death in the United States. After Alzheimer's disease, Parkinson's is the most common neurodegenerative disorder, with an estimated lifetime risk of about 1 in 100 persons.
More men get it than women, and the average age of onset is 55. About a third of cases appear to have a genetic basis. Caucasians are at higher risk, while both smoking and coffee drinking have been associated with lower risk for the disease.
"Parkinson's is such a weird disease," said Kari Buchanan, spokeswoman for the Parkinson Association of the Rockies. "Not everybody has the same symptoms."
About a quarter never get tremors, she said.
"The disease and treatment are different for everybody. There is no carbon copy here. It can take years to diagnose," Buchanan said.
The cause of Parkinson's isn't known, but it kills brain cells that release an essential neurotransmitter, dopamine. A hallmark trait is the presence in the brain of a protein called alpha-synuclein, a major constituent of pathological clumps called Lewy bodies. Despite research focused on these proteins, answers, fixes and funding are in short supply.
Rebecca Rothwell, diagnosed with Parkinson's at age 56, said she first felt isolated and discouraged.
"I had friends practically giving me a wake," she said.
But in April, at 63, she underwent a surgical procedure for deep brain stimulation at Littleton Adventist Hospital. Electrodes were implanted in a targeted area of her brain and later connected to a small, battery-powered electrical-pulse generator implanted near her collarbone.
"In March, I thought I was going to be in a wheelchair. I was ricocheting around the kitchen, shaking like a leaf," she said. "They turned on the electricity April 29. In early June, I walked from Frisco to Copper Mountain. I'm mowing, gardening, everything. I've got my rhythm back."
Deep brain stimulation, or DBS, isn't the answer for everyone. While 30 percent to 40 percent of Parkinson's patients might realize benefits, only about 10 percent undergo the procedure approved by the Food and Drug Administration in 2002, said neurosurgeon Dr. Aviva Abosch at the University of Colorado Hospital.
The current gold-standard treatment of Parkinson's is the drug levodopa, which increases brain levels of dopamine, combined with carbidopa, which slows the breakdown of levodopa. Brand names include Sinemet and Atamet. The drugs are effective in about three-quarters of cases, according to the American Academy of Neurology.
The drugs' side effects can include dyskinesia, the loss of muscle control that can exhibit as flailing arms and legs and other rapid, repetitive motions. DBS can improve motor function and squelch dyskinesia.
Hall underwent DBS surgery in 2011, and the implanted device has calmed his tremors. He and his wife and "care partner," Linda, carefully manage his medications, nutrition, exercise and rest.
For Hall, the worst effects of Parkinson's are not the tremors or other motor-control problems that medication and surgical therapies can reduce or eliminate for an indefinite period of time — but rather the cognitive impairment.
Lesser-known but debilitating effects include sleep disturbances, fatigue, loss of sense of smell, impaired sexual function, bladder problems, constipation, excessive saliva, depression, fear, anxiety, loss of memory, slowed thinking, confusion and, in roughly a third of cases, dementia.
"One of the most disappointing things for a person with Parkinson's disease is people try to minimize these symptoms," Hall said. "They are not normal aging."
As a former American Express executive and business owner, Hall said he is most bothered by his loss of memory and problem-solving skills.
"All our routines are organized around Parkinson's," Linda Hall said. "We use humor a lot."
With careful choreography, the couple can travel, host grandchildren and partake in simple pleasures.
"I can enjoy life. I'm at peace," said Kirk Hall, who wrote a book called "Window of Opportunity: Living with the Reality of Parkinson's and the Threat of Dementia."
The Halls have worked with the Parkinson's Disease Foundation and the National Institutes of Health in patient advocacy and research. His work to help other Parkinson's patients has given him his greatest sense of purpose, he said.
He says patients should seek out a neurologist who specializes in movement disorders. He also recommends a DBS support group called The Bionic Brigade of Colorado.
"We're entering an age in which it wouldn't surprise me if we saw a cure in 10 to 15 years for neurodegenerative diseases, but no one has cured them yet," said Dr. Benzi Kluger, neurologist and director of the Movement Disorders Center at the University of Colorado.
Kluger met Hall in 2008, four months into his new neurology job at CU. Hall and others inspired Kluger to start one of the country's first team-based palliative-care clinics to relieve the suffering of Parkinson's patients.
The team includes physicians, nurses, psychologists, social workers and a chaplain.
"We try to lift a little of the burden," Kluger said.
Electa Draper: 303-954-1276, email@example.com or twitter.com/electadraper
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