NWPF

News ArchivesRead News

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, edraper@denverpost.com or twitter.com/electadraper

http://www.denverpost.com/news/ci_26376177/colorado-parkinsons-disease-patients-fight-best-possible-life

Recent News

Sep 12 - Australian Researchers Develop New Diagnostic Tool to Spot Early Signs of Parkinson’s
Sep 11 - GeneFo Webinar to Focus on Using Humor to Manage Parkinson’s Disease
Sep 6 - Parkinson’s and the ‘D’ word
Sep 6 - Compounds in Asthma Drugs Might Be Used as Parkinson’s Treatment
Sep 5 - AstraZeneca Joins Takeda, Berg to Advance Development of Parkinson’s Disease Therapies
Sep 1 - Stem Cell Transplant Trial in Parkinson’s Patients Planned After Test in Japan Succeeds in Monkeys
Sep 1 - Titan to Start Phase 1/2 Study of Subdermal Implant to Deliver Requip to Parkinson’s Patients
Aug 30 - FDA Refuses Acorda’s Inbrija New Drug Application Due to Manufacturing Questions
Aug 23 - Support Groups: Are They for You?
Aug 22 - Internet Visits with Parkinson’s Specialist Can Be as Effective as In-person Visits, Trial Finds
Aug 21 - Cavion’s New CMO to Lead Cav3 Platform Development for Neurological Diseases
Aug 15 - Singing Helps Early-stage Parkinson’s Patients Retain Speech, Respiratory Control, Studies Show
Aug 14 - 16 Tips to Increase Your Mobility Confidence While Living With Parkinson’s Disease
Aug 10 - Boxers are fighting back against Parkinson’s
Aug 9 - Parkinson’s Experiment to Be Aboard Next Flight to International Space Station
Aug 9 - Parkinson’s Disease and Sleeping with the Enemy
Aug 7 - The Importance of Oral Health in Parkinson’s Disease
Aug 7 - Researchers Gain Better Insight Into Alpha-Synuclein’s Role in Parkinson’s Disease
Jul 31 - New Digital Cognitive Assessment Tool Receives Positive FDA Review
Jul 20 - Parkinson’s DREAM Challenge Uses Mobile Sensor Data to Monitor Health Based on Movement