Doctor With Parkinson’s Fights Latino Culture’s Silence, Denial and Isolation

Doctor With Parkinson’s Fights Latino Culture’s Silence, Denial and Isolation

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Photo: Epigmenio Quintanilla Jr., 81, above, was diagnosed with Parkinson's six years ago. Read more about him in Part 1 of this series. (Yolanda González Gómez/HuffPost Voces) Also, read the complete article in Spanish

Neurologist María de León, MD, is not only an expert on Parkinson’s, but long before she was disgnosed with the condition a decade ago, she took care of her grandmother, who suffered from the disease in her last years.

“Before age 40, I had all the symptoms of Parkinson’s, which I realized when I could not do the things I asked my neurological patients to do. I was easily losing my balance, and I had stiffness and pain,” said de León, who is writing a book on the subject.

She continued, “When symptoms appear you tend to isolate yourself out of shame. We go into our shells, so no one knows, so nobody can see us.”

Defeat Parkinson’s

De León, founder of the organization Defeat Parkinson’s and associate director of Parkinson's Action Network in Texas, emphasized that the psychological and emotional effects of the illness are as real as the movement problems and tremors. Sometimes, she said, they are even harder than the disease itself. “Women have more non-motor symptoms and various other problems,” she said.

“A big obstacle for Hispanic patients is their economic disadvantage, which restricts them from getting information and sometimes medical care,” de León observed. “They live day by day, only have enough time to work and resources for their basic needs, rather than for informational programs.

That’s why they may require incentives to participate in various educational sessions on how to manage the disease.”

She asked, “How many have money to go to New York where the six most important foundations of Parkinson's are? Or to go to universities or large cities where centers of excellence about the illness are located?”

De León said that before her Parkinson’s caused her to retire early, she helped about a thousand Parkinson patients in her community of Nacogdoches, in rural East Texas. Now many of them may move to Houston and Tyler for medical care, she said.

Another problem, de León said, is that there are neither enough neurologists in general, nor enough of physicians of Hispanic origin, much less a sufficient supply of doctors specialized in treating Parkinson's disease.

“Rural satellite clinics that serve small and medium-sized cities should be opened,” she suggested. Services are currently inadequate fo the higher prevalcne of Parkinson’s she sees among Hispanics, including many who develop the condition at younger ages.

De León thinks that we need to be more alert so there may be changes, to bring further research to the disease and can find the real dimension of Parkinson’s in the Hispanic population, especially those most at risk from contact with pesticides and chemicals in the fields.

Eating the Elephant One Bite at a Time

De Léon expressed impatience with the little progress science have made toward finding a cure for Parkinson’s. She compared the slow progress of research to “eating an entire elephant in one bite.”

She believes that instead of searching for a total solution, studies should refocus on narrower aspects of the disease. As with cancer, she said, Parkinson’s research should proceed on many fronts, such as by examining different types of the conditions and the ways it affects various population groups.

She went on that Parkinson’s research should do more to examine differences between men and women, multiple ethnic groups, gene varions, levels of inflammation, immune-system and environmental impacts, cultural or dietary differences, and so on.

“Rural satellite clinics that serve small and medium-sized cities should be opened,” she suggested. Services are currently inadequate fo the higher prevalcne of Parkinson’s she sees among Hispanics, including many who develop the condition at younger ages.

De León noted, for example, that many Hispanics who emigrated from Mexico, such as her family, had contact with DDT and other pesticids, with mercury in past dental fillings, and with toxic solvents and welding chemicals that are banned today in the United States.

“There is much to be done to disseminate information and attract more attention to Parkinson’s among Hispanics.

She stressed as well them Latinos need to know that depression is a common result of an chronic illness like Parkinson’s. Hispanic communities should not teart it like. Madness. If depression is addressed early, it can be prevented or reveresed. In addition, as much as half of Parkinson’s can cause dementia over time, and patients and their family members should seek help for it.

De León considered it shameful that Texas lacks more formal programs to alert and inform Hispanics about the risks of neurological diseases such as Parkinson's and Alzheimer's disease, even though Latinos are the largest and fastest growing minority in the state.

For more information, see the National Parkinson Foundation’s online website, and its special section, Recursos en Español.

Yolanda González Gómez wrote this article for HuffPost Voces through the post-fellowship for journalists on Aging, a collaboration of the Gerontological Society of America and New America Media with support from AARP.