Heightened Awareness for Parkinson’s Disease

Today is World Parkinson’s Day, which was established 22 years ago on April 11, 1997 as a joint initiative between the European Parkinson’s Disease Association (EDPA) and the World Health Organization. The observance fittingly takes place on the birthday of social reformer and political activist James Parkinson (b. April 11, 1755), who first recognized Parkinson’s (then “Shaking Palsy”) as a medical condition.

By next year, it is estimated that nearly one million people will be living in the US with Parkinson’s disease (PD)—that’s more than the number of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig’s disease (also known as ALS) combined. Awareness about the disease—and mental health in general—is key in order to work toward new treatments and a potential cure, according to the Parkinson’s Foundation.

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Parkinson’s Disease on the Mind

People often associate tremor with Parkinson’s disease (PD), a progressive neurodegenerative disorder originally named “shaking palsy,” but did you know that one-quarter to one-third of patients don’t exhibit this symptom? At Wednesday night’s event for Brain Awareness Week, “On the Mind: Parkinson’s, Movement, and Dance,” we heard from top NYU doctors about symptoms, diagnosis, and treatment, but also from a PD patient on his experience with disease and how dance helped him come to terms with his diagnosis.

There are four cardinal clinical features of PD: rest tremor, slowness, stiffness in muscles, and balance problems, said Andrew Feigin, M.D., director of the Fresco Institute at NYU Langone Health. Not everyone gets all four, he said, but people with Parkinsonism have two or more, and are often diagnosed with PD. Because it is a progressive disease, these symptoms can lead to other troubles, including quiet or slurred speech, difficulty swallowing, and shuffling gait, as well as non-motor features such as depression, impulse control, and sleep disturbances.

Actor Michael J. Fox and the late boxer Muhammad Ali, both diagnosed with PD, dramatically increased public awareness of the disease in the past few decades, but it was first discovered in the early 1800s by James Parkinson. Around 1 million people in the U.S. and 6 million people worldwide have PD.

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Does DBS Cause Changes in Personality?

Since 2002, deep brain stimulation (DBS), the surgical implantation of a pacemaker-like device that sends electrical impulses to targeted parts of the brain, has been used as a treatment for motor symptoms of Parkinson’s disease (PD). But are patients trading part of their sense of self in exchange for improved mobility?

Packed house for INS annual meeting talk on DBS.

In the last decade, a growing number of published articles have raised the concern of personality changes in PD patients as a result of DBS, and tried to discern if the concern is real or overblown. At Thursday’s International Neuroethics Society (INS) meeting discussion “DBS: Continuity of Self,” panelists aimed to add clarity to the debate. “Speculation shouldn’t be divorced from clinical reality,” said panel moderator and ethicist Hannah Maslen, who introduced the session.

The speakers, philosopher and neuroethicist Frederic Gilbert, neuropsychologist Cynthia Kubu, behavioral neurologist Winston Chiong, and ethics researcher Jonathan Pugh, offered a range of perspectives. They largely focused on the state of the evidence and why it’s so difficult to assess personality changes in patients.

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Living with Parkinson’s

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Best known for M*A*S*H*, Alan Alda has also appeared in 48 films, on Broadway, and written two books. Photo credit: Eileen Barroso, Columbia University

It was hard to miss Alan Alda’s announcement this week on CBS This Morning that the legendary actor had been diagnosed with Parkinson’s disease more than three years ago. Alda, 82, said one of the reasons he was speaking out was to offer a message of hope to people who are living with the disease: “In the very beginning, to be immobilized by fear and think the worst thing has happened to you – it hasn’t happened to you. You still have things you can do. I’m taking boxing lessons three times a week. I do singles tennis a couple of times a week. I march to Sousa music because marching to music is good for Parkinson’s.”

Through the years, our Dana Foundation publications have often focused on both Parkinson’s disease and Alda’s passion to better communicate science to the public, which is part of our mission as well.

In 2015, about the same time that Alda learned he had Parkinson’s, I wrote “Alda Crushes It,” a blog on Alda’s lecture at Columbia University, entitled “Getting Behind a Blind Date with Science.” In this captivating lecture, co-sponsored by Dana and the Kavli Foundation, he talked about why he had co-founded his own center for science communication at Stony Brook University and how he had been inspired by his time as host of Scientific American Frontiers, a PBS program that explored any number of topics. He was engaging, insightful, and his enthusiasm was contagious.

A year later the publication I edit, Cerebrum, reviewed Alda’s new book If I Understood You, Would I Have This Look on My Face. We asked Eric Chudler, a neuroscientist at the University of Washington and the executive director of the Center for Sensorimotor Neural Engineering in Seattle, to tell us what he thought. Chudler wrote: “With humor and a clear, concise, and never stilted writing style, Alda takes readers on his journey to help experts convey neuroscience and other complex scientific topics to a variety of audiences.”

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In Memoriam: Nobel Laureate Arvid Carlsson, a Pioneer in Parkinson’s Treatment

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Photo: Johan Wingborg/University of Gothenburg

We regret to announce the loss of Dana Alliance member Arvid Carlsson, M.D., Ph.D., who passed away last Friday at 95 years old. Carlsson laid the groundwork for the treatment of Parkinson’s disease by discovering dopamine is a neurotransmitter that plays an important role in motor function. In 2000, this research won him the Nobel Prize in Physiology or Medicine with fellow Dana Alliance members Eric R. Kandel, M.D., and Paul Greengard, Ph.D., “for their discoveries concerning signal transduction in the nervous system.”

In 2001, Dana Alliance member John H. Byrne, Ph.D., wrote a Dana Foundation Cerebrum article to commemorate the 2000 Nobel Prize in Physiology or Medicine. He detailed Carlsson’s journey to his Nobel Prize winning research on dopamine:

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