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Sunday, April 10, 2016

Aurora Soriano: We need to learn more about Parkinson’s disease

April 9, 2016


Becky Argo knew something was wrong. Her gait and balance were not the same when she walked. She felt unsteady and had fallen several times. As a retired psychiatrist and medical doctor, she knew this was not normal. Yet, it took two more years and several more falls for her to be diagnosed with Parkinson's disease.

She had no tremors, no other signs typical of the disease. "Parkinson's has affected my life. I used to hike and do things outdoors," she said. "But now I need to be aware of my balance and it takes me a while to get moving."
The symptoms of Parkinson's are diverse, vary from person to person and can include tremors; slowness of movement; difficulty with balance, swallowing, chewing, speaking or writing; depression; and mood disorders. Parkinson's is a chronic, progressive neurological disease diagnosed in an estimated 70,000 people each year in the U.S.

There is no known cure and currently no data or registry to determine how many have it. The average age of diagnosis is 60, but people as young as 18 have been diagnosed. 
Diagnosed at age 32, Jennifer Parkinson began to have symptoms at 30. She had just given birth to her second child when she noticed her right hand was shaking. She went to her doctor and they did not know what was wrong with her. Her leg was dragging and she had trouble walking.
After two years of living with the symptoms, she decided to see a neurologist and was told she had Parkinson's disease. She was in shock. Her immediate thought was to get a second opinion from a movement disorder specialist, who confirmed the diagnosis.
Over time, her symptoms got worse, causing her to leave her job as a nurse. She credits fitness training boxing for reducing her symptoms, and she now runs and coaches "NeuroBoxing," a program that specializes in non-contact training to fight Parkinson's. 

Currently there is no drug to halt or slow progression of the disease. While the medications that are available mask some symptoms for a limited period, eventually they lose their effectiveness, leaving the person unable to move, speak or swallow. 
The exact cause of Parkinson's remains unknown, but researchers believe it involves both genetic and environmental factors. In 2003, scientists at the National Institutes of Health discovered that too much of the alpha-synuclein protein may be a cause. This protein forms a plaque and somehow kills off cells that produce dopamine, a neurotransmitter chemical affecting movement. More recently, UCLA scientists discovered pesticides that end up in well water are linked to an increased risk of Parkinson's. 

Larry Roberts, a retired lawyer, has some theories about how he got the disease. "I grew up near a golf course that was regularly sprayed with DDT," he said. "I remember the spraying as a kid." Diagnosed in 1998, he has lived with Parkinson's for 18 years and no longer drives.

For Robert Jenkins, diagnosed at age 58 after a successful career in sales, the unpredictability of the disease is frustrating. "Parkinson's disease totally takes away 90 percent of who you are," he said. "I never know how the medicine will work or if I will be able to move." 
Until we know how many people have the disease, their ages and if it is increasing, we will not get closer to a cure. In 2004, California passed the Parkinson's Registry Act, but it was never funded. Urge your local legislators to fund the registry. 
The Parkinson's Action Network, a nonprofit group of advocates, patients and caregivers seeking better treatments and a cure, can be reached at www.parkinsonsaction.org. Join us in advocating for a cure. 
Aurora Soriano is the volunteer assistant state director for the Parkinson's Action Network. In honor of Parkinson's Awareness Month, she is sharing the stories of people who face this disease daily. You can email her at forevermao@msn.com.

http://health.einnews.com/article/320688383/P7Yq7_vxoBjsm4_9

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