Improving Care for Latinos with Parkinson's Disease

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By Barbara Thomas

Latinos have no higher risk for Parkinson’s disease than the general population, but they may not recognize the symptoms or are reluctant to seek medical attention, according to Mary Ellen Thibodeau, executive director of the Connecticut Chapter of the American Parkinson Disease Association.

“Early symptoms such as tremors are often overlooked or thought to be due to old age,” she said. “But they may not be old age and Parkinson’s is very treatable.”


Although there is no cure for the disease, a neurodegenerative brain disorder, medical and surgical treatments are available to reduce symptoms, Thibodeau said.

“A recent study found that the incidence of Parkinson’s disease in the Hispanic community was no different from that of the general population,” said Dr. Michael S. Okun, national medical director for the National Parkinson Foundation.

“At the NPF, we have been concerned that many Parkinson’s disease clinics serve almost exclusively Caucasians and we would like to improve access to care for Latinos and all minority groups,” he added. “NPF offers many educational resources in Spanish and an Ask the Doctor online forum in Spanish, Preguntele al Medico.” (Go to www.parkinson.org/forums)

The NPF’s website is available in both English and Spanish (www.parkinson.org/espanol) and its toll-free Helpline is in both languages. (Call 1-800-4PD-INFO or go to www.parkinson.org/helpline)
NPF has several free publications (see website’s tab “publications” and click on “free publications”) in English and Spanish that can be downloaded or requested by calling the foundation’s toll-free number, 1-800-327-4545, or by e-mailing contact@parkinson.org.

A brochure  printed in Spanish listing the 10 early warning signs of Parkinson’s disease is an example of a free resource offering important information, NPF Vice President of Marketing & Communications Leilani Pearl said.

“One sign is loss in the sense of smell, which many people don’t know about,” she said.

The American Parkinson Disease Association also provides books and other resources in many languages. Visit http://www.apdaparkinson.org.
Parkinson’s is a family illness that affects all members of the household, said Thibodeau, a registered nurse who knows firsthand. Her mother has had the disease for 30 years.
The Connecticut chapter is a new model for the APDA and Thibodeau was named executive director while also serving the chapter in Rhode Island , where she lives.
“Our mission is to ‘Ease the Burden, To Find A Cure’ for people with Parkinson’s disease and their caregivers in Connecticut ,” she said. “Our goal is to provide education, support and socialization. Along with educational information found on our website we will hold events, both educational and social, and we hope there is something for everyone.”
One example is a new singles support group. The first meeting will be held Wednesday, Oct. 2 at 6 p.m. at the Welles-Turner Memorial Library (Friends Room), 2407 Main St. , Glastonbury .
The singles group will tackle issues related to being one’s own best caregiver and developing a support network, Thibodeau said.
The Connecticut chapter, based in Old Mystic, has many groups throughout the state including the West Hartford Support Group, which has relocated to Atria Hamilton Heights , 1 Hamilton Heights . It meets the second Wednesday of each month at 3:30 p.m.
APDA support groups are also numerous in Rhode Island and Massachusetts .
“We have almost 2,000 families affected by Parkinson’s in Rhode Island ,” Thibodeau said.
The Rhode Island chapter serves people in Rhode Island and Southeastern Massachusetts through the Information and Referral Center at Kent Hospital . The chapter’s medical director, Dr Joseph Friedman, who is a leading expert in Parkinson’s disease, has released a new book titled “Making the Connection Between Brain and Behavior, Second Edition.” The book goes beyond physical changes and addresses the most common behavioral symptoms, including depression, anxiety, hallucinations, disrupted sleep and compulsive behavior. Visit www.demoshealth.com/prod.aspx?prod_id=9781936303533.
The Massachusetts chapter has an Information & Referral Center located at Boston University Medical Center . The APDA and Boston University have established the country’s first National Resource Center for Rehabilitation. The center’s toll-free “helpline” telephone number is (888) 606-1688,
According to the APDA website, Parkinson’s disease is a progressive disorder of the central nervous system affecting more than 1.5 million people in the United States . Clinically, the disease is characterized by a decrease in spontaneous movements, gait difficulty, postural instability, rigidity and tremor. The major symptoms of the disease were originally described in 1817 by an English physician, Dr. James Parkinson, who called it “Shaking Palsy.”

Men and women alike are affected. The frequency of the disease is considerably higher in the over-60 age group, even though there is an alarming increase of patients of younger age. In consideration of the increased life expectancy in this country and worldwide, an increasing number of people will be victims of Parkinson’s disease.

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