NINDS Recognizes Parkinson’s Disease Awareness Month

This month is Parkinson’s Disease Awareness month and, even as a child neurologist, I find myself thinking about how much we have learned and how much we have yet to learn about this common neurodegenerative condition.

Parkinson’s disease is a progressive movement disorder that primarily affects people over the age of 65. However, an estimated four percent of people with Parkinson’s are diagnosed with “early onset Parkinson’s disease,” meaning that they were diagnosed before age 50. Clinically, Parkinson’s disease is characterized by slowness of movement (bradykinesia), rhythmic shaking of the limbs and head (tremor), inflexibility of the limbs (rigidity), and loss of the balancing mechanism (postural control).

In addition to these classic “motor” or movement-related symptoms, people with Parkinson’s also experience a range of symptoms affecting daily activities, including fatigue, pain, changes in mood and thinking, difficulties sleeping, issues with eating and swallowing, and bladder and bowel problems. Under the microscope, the brains of patients who had Parkinson’s disease all show abnormal clumps of proteins, called Lewy bodies, and the loss of nerve cells that make the chemical dopamine.

What has become clear is that Parkinson’s represents a complex spectrum with shared characteristics, including a classic trio of motor symptoms and similar end-term brain changes, but also with a range of physical manifestations such that the experience of each person with Parkinson’s is unique.

What makes a person susceptible to Parkinson’s? Parkinson’s is diagnosed across ethnic groups, socioeconomic class, in rural and urban areas, around the globe, and is expected to increase as the population ages. Most people with Parkinson’s do not have relatives with it, suggesting that something in the environment may initiate a cascade of events leading to loss of dopamine neurons and changes in movement. That said, some forms of Parkinson’s may be inherited, as approximately ten percent of people with Parkinson’s carry a gene that increases risk of developing the condition. This has led to the hypothesis that both genetic and environmental factors contribute to the onset of Parkinson’s disease.

However, this relationship is complicated. Whether or not a person with genetic risk eventually develops Parkinson’s seems to depend, in part, on their age and other risk factors. Whether an environmental factor is sufficient to initiate Parkinson’s may depend, in turn, on genetic risk. The roles of environmental, genetic, and other potential contributing factors, including lifestyle (e.g. exercise, nutrition), inflammation, microbiome (microorganisms living in the human body, such as bacteria), are under active investigation.

Research funded and performed, not just by NINDS but also by our many nonprofit organization partners, is seeking to understand the contribution of the causes of Parkinson’s, discover new and improve existing treatments and, ultimately, find a cure for Parkinson’s. Earlier this year, the NINDS hosted a meeting with our partners including the Michael J. Fox Foundation, Aligning Science Across Parkinson’s, Parkinson’s Foundation, American Parkinson Disease Association, Parkinson Alliance and Davis Phinney Foundation to discuss current research needs in Parkinson’s disease research and treatment. We are actively collaborating on common goals to serve the Parkinson’s community through increasing our understanding of shared clinical symptoms, individual manifestations and underlying biological pathways that lead to Parkinson’s.

So is Parkinson’s really many different diseases that all have bradykinesia, tremor, rigidity, and loss of postural control as their hallmarks? Are there many different “roads” that lead to the same clinical destination? This seems highly likely. As a child neurologist, I find myself wondering if there could be ways to predict the onset of Parkinson’s at a time early enough to prevent damage from occurring.

Ongoing research focused on identifying and finding targets for preventive measures and therapies in these separate “roads” to Parkinson’s disease and determining a “final common pathway” would allow us to prevent or treat Parkinson’s disease. As we mark Parkinson’s Disease Awareness Month, the NINDS and our dedicated partners continue to support research that builds on a foundation of current knowledge, addresses the unknown, and provides a new road map leading to improved understanding of and treatment for Parkinson’s disease.

Help contribute to the NINDS Strategic Plan!

Almost two years ago, I assumed the task of leading a new strategic planning effort to help the institute determine what directions to take over the next 5 years.  A daunting task to be sure.  But, after much dedication and deep thought, we have developed a draft strategic plan and are now seeking to gather your thoughts on the plan and how we should go about implementing it.

Our draft Strategic Plan is posted for public comment, and I encourage you to submit comments on it , including high priority issues we should focus on first.  Please submit your comments online via the webform at https://www.ninds.nih.gov/NOT-NS-21-021.  We set an original submission deadline of March 15th (Thanks to all of you who have already sent in your comments!) and have already begun considering submitted suggestions for incorporation into the final document.  But we will keep the submission interface open and will monitor it indefinitely.  Our Strategic Plan is, after all, a living, evolving document!

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What Can NIH Do? What Can’t NIH Do? How Can We Work Together?

My recent column about post-acute COVID syndrome generated a lot of feedback, and one of the most common questions I got asked is, “Why don’t you tell Congress they need to allocate funding for [Disease X]?  It is so common, so disabling, so deadly, and so costly for patients, families, and society.  You need to tell them to allocate a fraction of their budget to conquer [Disease X].” 

This common question has a very, very simple answer: It is against Federal law for NIH or any Federal employee to lobby Congress.  We simply cannot advocate for ourselves, our scientific community, or specific patient and family constituencies.  We are permitted to educate members of Congress, but even that, only when asked to do so. 

Another question I am often asked is, “Why doesn’t NINDS just declare that, this year, we are going to spend our money on understanding, treating, and curing [Diseases A, B, and C] because they are so prevalent and so negatively impact  the lives of patients and families.”  Each NIH institute has a different way of making its funding decisions.  While Congress has allocated funds to some disease- or condition-specific programs that NINDS leads or co-leads, NINDS generally has not. 

This decision grows directly from our long-term vision and strategy.  Our vision sets its sights on easing the burden of patients with neurological disorders – not a specific type of patient or a specific neurological disorder, but all people affected by any and all neurological disorders. 

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Be Mindful of the Past and UNITE for the Future

For my birthday this past year, my husband bought me a book by Jill Lepore entitled These Truths – a nearly 1,000-page tome that tells the history of the United States, although describing it that way sells this wonderful book vastly short. What These Truths does is tell the complicated, messy, and intertwined stories of the people who collectively enacted and constituted the history of the United States. Like many, I read for pleasure only as I am falling off to sleep at night. This means it will be at least a few more months before I finish the book! But now, more than halfway through it, one thing is horrifyingly clear: slavery, persecution, hate crime, the advantage of assimilation and the deadly disadvantage of being identifiable as “other” have pervaded the history of this country since before its inception through the present day. To be sure, and somewhat reassuringly vis-à-vis the very humanity of the human race, outspoken and courageous opposition of people who viewed this to be wrong began almost as soon as the first enslaved person stepped on our shores. But too often, economics and xenophobia won out.

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