Wednesday, August 10, 2011

Parkinson?s group gathers to network

Philanthropist Paul Brainerd presents on latest findings

By TONY EVANSExpress Staff Writer

Members of the Wood River Valley Parkinson?s support group, from left, Pete and Diane Mohn, and Debbi and Paul Brainerd, prepare to meet Monday. Photo by Willy Cook

About 50,000 Americans are diagnosed each year with Parkinson’s disease, a degenerative disorder that affects the central nervous system. Though there is no known cure for the disease, new treatments continue to emerge.

About 50 Wood River Valley residents gathered for lunch at the home of Paul and Debbi Brainerd north of Ketchum on Monday. they came to learn about the latest studies and clinical trials aimed at treating Parkinson’s disease.

Brainerd, who was diagnosed with Parkinson’s disease in 2009, presented a talk and slideshow to the group based on his attendance at the 2010 World Parkinson Congress in Glasgow, Scotland. The congress is an international forum for the latest scientific discoveries, medical practices and care initiatives related to Parkinson’s disease.

"I found out that there is a lot more going on out there than I thought," he said.

Brainerd is a philanthropist who has funded numerous conservation efforts in the Northwest. he and his wife recently made a donation to the Michael J. Fox Foundation for Parkinson’s Research to speed the testing of a new generation of Parkinson’s drug treatments to market.

Brainerd focused his presentation on the basic science, symptoms and treatments for Parkinson’s presented at the three-day congress. he stressed the importance of early detection for a disease that is difficult to diagnose (Brainerd lost his sense of smell years ago, which is one early sign of Parkinson’s). he also described funding models for new drug research, brain-imaging breakthroughs and the promise of gene mapping and stem cell therapy in treating the disease.

"The Europeans are way out ahead of the U.S. in the area of stem-cell therapy," Brainerd said.

he said a $15 million stem-cell clinical trial involving 80 patients is scheduled to begin this year. he said the study would involve scientists from three European countries and take five years to complete.

"in our lifetimes, this might not make a difference," Brainerd said. "but in the next generation it might help."

Alternative therapies of yoga, acupuncture and the use of cannabis were also mentioned by other members in the group.

Parkinson’s, which usually occurs in people over 50, results from the death of neurotransmitter-containing cells in the brain. The cause of cell-death is unknown, but some parts of the world, and some ethnic groups, have a higher incidence of the disease. Tremors and, later, cognitive and behavioral problems result from the disease. Dementia commonly occurs in the advanced stages of the disease. other symptoms include sensory, sleep and emotional problems.

he said the most obvious symptoms of tremors and stiffness associated with Parkinson’s disease do not cause the greatest impacts on the quality of life of Parkinson’s patients.

"It is the depression and anxiety that does," he said.

Brainerd said he works out three hours per day and that the more he exercises, the less medication he needs to control his symptoms.

"Exercise, more than any other factor, is most effective at controlling Parkinson’s symptoms," he said.

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Ketchum resident Rod Kvamme was diagnosed with Parkinson’s disease 14 years ago. he began the Parkinson’s support group in the Wood River Valley to network with others, but due an increase in his symptoms, he no longer leads the group.

"when I was diagnosed, they told me there would be a cure in three years," Kvamme said. "that was 11 years ago."

Gus Stroes came to the U.S from Utrecht, Holland, when he was a young man. he is now 81 and lives in Smiley Creek in the Sawtooth Valley. he was diagnosed two years ago, but like many in the group, he remains upbeat.

"I tried to grow tulips here in Idaho, but gave up," he said with a smile. "Parkinson’s really creeps up on you."

Ketchum resident Jim Anderegg, 71, began losing coordination many years ago. in his 60s, he began falling and injuring himself repeatedly, but he went undiagnosed for many years.

"I think I may have had this all my life," he said.

Brainerd said research is under way to locate unique "biomarkers," such as genetic signatures that could positively identify the disease early on.

"most scientists think it is partly genetic and partly environmental [in cause]," he said.

One reliable indicator of Parkinson’s is a patient’s positive response to certain medications. if symptoms improve after taking specific medications, a patient can get a definitive diagnosis, and may eventually become a candidate for surgical treatments, such as deep brain stimulation, or DBS. DBS treatments require the surgical implantation of electrical stimulators into the brain.

Elkhorn resident Pete Mohn received DBS treatments three years ago and said the results have been "terrific." he joked about having to go off his medications long enough to impress his doctors with his diskynesia, or loss of coordination, before qualifying for the life-changing operation.

Mohn and his wife, Diane, met the Brainerds last year at a Parkinson’s conference and have networked in the Wood River Valley to bring Parkinson’s patients and their spouses together to share ideas and learn from one another.

The group also gets a positive emotional boost from getting together, a benefit that may be difficult to measure clinically, but is palpable nonetheless.

Sun Valley resident Francis Brumback has had trouble swallowing and speaking since she was diagnosed seven years ago, but has learned some tricks from Ketchum therapist Tracy Cloud on how to manage. she smiles and shares stories, as the others do, in the face of great challenges.

"I take smaller bites," she says.

St. Luke’s Wood River Medical Center offers Parkinson’s-specific exercise and balance classes Thursdays at noon.

to learn more about the Wood River Valley Parkinson’s support group, call Pete and Diane Mohn at 622-7414.

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A Scottsdale philanthropist has donated $50,000 to the Phoenix-based Translational Genomics Research Institute and the Van Andel Research Institute in Grand Rapids, Mich., to begin a study on a rare form of ovarian cancer.

Foster Friess, the founder of Brandywine Funds and who has homes in Scottsdale and Jackson, Wyo., has previously given $300,000 for ovarian cancer research. his latest donation is in memory of Taryn Ritchey, the daughter of his personal assistant, Jody Jost of Cave Creek.

Ritchey, 22, died in 2007 of small-cell carcinoma of the ovary. the cancer strikes fewer than 250 women per year.

“Taryn’s dying wish was to be able to help other young women so they won’t have to go through what she went through,” Jost said in a statement.

Tom Benford of Peoria plans to donate to the project a portion of the proceeds from sales of his new book, “Standing Tall,” inspired by his daughter, Andrea Benford Theis, 31, who died of SCCO in 2006.

TGen’s head of breast and ovarian cancer research, Dr. Heather Cunliffe, said SCCO has been tagged a silent killer because the symptoms, such as abdominal pain and nausea, are vague and easily misdiagnosed.

Also, doctors may consider ovarian cancer as a possible cause of such symptoms in women who have completed menopause because that’s when most ovarian cancers typically strike, she said.

But SCCO is unusual in that it emerges in much younger victims; the average age of diagnosis is 24. This means doctors are less likely to consider ovarian cancer as a cause until it has spread.

Even if doctors do catch it in its early stage, SCCO is resistant to chemotherapy and fast-spreading, Cunliffe said.

“Almost all patients die within one to two years,” she said.

Cunliffe said she has been wanting to study SCCO to identify a potential genetic commonality in tumors that could lead researchers to create a successful treatment.

“I was contacted by the loved ones of women who have been lost to SCCO to ask if there is anyone anywhere doing any research on SCCO,” she said. “The answer is: no.”

To obtain samples of tumors from SCOO victims and patients who have been recently diagnosed, TGen and VARI researchers created a secure website, tgen.org/scco, where families or patients can download forms to take to physicians to fill out so they may produce a tumor tissue sample and ship it to the institutes’ labs.

Cunliffe said researchers do not know the women’s identities. Tissue samples are assigned a number.

Cunliffe is the principal investigator. she is working with researchers Dr. Brian Haab, head of VARI’s Laboratory of Cancer Immunodiagnostics; Dr. Kyle Furge, head of VARI’s Laboratory of Computational Biology; and Dr. Jeffrey Trent, president and research director of both TGen and VARI, who also leads an active cancer research laboratory.