Foundation envisions a world without Parkinson’s disease

Isabella Dorer, of South Miami, lines up to start the walk at Museum Park in November in support of Parkinson’s research.
Isabella Dorer, of South Miami, lines up to start the walk at Museum Park in November in support of Parkinson’s research. pfarrell@miamiherald.com

As we recognize Parkinson’s Awareness Month in April, one of our most pressing priorities at the Parkinson’s Foundation is to improve the standard of care for this disease. It affects a growing number of people of all genders, ages, races and ethnicities. Every nine minutes, someone in the United States is diagnosed with this neurodegenerative disease that often progresses slowly over decades. People with Parkinson’s disease struggle to find a way to live with their symptoms — such as tremors that make even the smallest tasks like a buttoning a shirt or tying a shoe seem impossible.

Today, approximately 90 percent of people with Parkinson’s are treated by doctors who may not have the training to understand the complex, multifaceted issues their patients grapple with, including timing and dosing of medications, anxiety, and depression.

An estimated 10 million people around the world suffer from Parkinson’s. That number is expected to double by 2030 as the population ages. The average age of diagnosis is 62. Perhaps most important, Parkinson’s does not discriminate — it can affect anyone.

Receiving a Parkinson’s diagnosis is a shock that often leaves people and their loved ones confused and afraid. Diagnosis is difficult because there is no standard test for Parkinson’s other than a clinical examination. That is another reason it is critical for anyone facing a Parkinson’s diagnosis to see a qualified neurologist or a movement disorder specialist for evaluation and treatment.

We still do not know what causes Parkinson’s, although most experts agree that it is a combination of genetic and environmental factors. While the disease itself is not fatal, the Centers for Disease Control and Prevention rates complications from Parkinson’s disease as the 14th leading cause of death in the United States. As the number of people with Parkinson’s grows, so will the societal and economic burden. The current estimated annual cost of the disease is $14 billion.

For all of these reasons, the Parkinson’s Foundation is supporting scientific research to help us better understand the underlying disease, how to treat it, and hopefully how to prevent, slow or stop it. We also provide the support, resources and tools that people need to access the best available care at every stage of the disease.

We are utilizing our global Center of Excellence network to work with world-class experts in Parkinson’s care and research to focus on new and effective treatments so that every person with the disease can live his or her best-possible life today. It is also why we are the leading funder of training for the next generation of movement-disorder specialists who can provide the care people desperately need.

At the Parkinson’s Foundation, our goal is to ensure that people with Parkinson’s and their caregivers find the support they need so no one has to face the disease alone. If you or someone you know or love is living with Parkinson’s, take advantage of all the resources we have in South Florida. Remember, every nine minutes, someone else will be counting on us to help navigate this disease. Let’s envision a world without Parkinson’s disease and end it once and for all.

John L. Lehr is CEO of the Parkinson’s Foundation, www.parkinson.org.