Parkinson’s Went Viral Last Summer…for all the wrong reasons

During the first week of July, in the midst of the heated US Presidential election cycle, the term Parkinson’s disease went viral. Online searches skyrocketed, it was trending on X, and there was non-stop news coverage of a neurodegenerative disease first discovered in 1817.

Hardly a normal hot topic, you might assume that this sudden spike in interest could be tied to the passage of the National Plan to End Parkinson’s Act, a bill that cleared the House with a whopping 407- 9 affirmative vote in December 2023, followed by a unanimous vote by the Senate in late May. Given that this, the 118th Congress, is on track to pass the least amount of bills since the Great Depression, it makes sense that news of an overwhelmingly bi-partisan piece of legislation could have been the answer as to why Parkinson’s became trendy.

But it wasn’t. 

In what can only be considered a cruel coincidence, at the exact moment this potentially transformational bill arrived on the Resolute desk for signature, rampant speculation about the President himself having Parkinson’s disease was at an all-time high. Fueled in part by the President’s debate performance just a few days prior, coupled with his overall demeanor including a noticeably stiff gait and low voice, the movement disorder was suddenly thrust into the spotlight. The White House and the Biden campaign tried in vain to attribute this to be a result of exhaustion from recent travel, and possibly a virus, but the speculation did not subside. When reports uncovered that a movement disorder specialist had visited the White House 8 times in the last year, the news coverage was inescapable and the questions came at his team in rapid fire succession:

Those of us living with Parkinson’s know that the widely accepted stereotype of a patient is that of a frail, hunched over, elderly man. Given that President Biden was the oldest leader in our country’s history, it was perhaps easy, if unfair, to jump to this conclusion. Absent a neurology degree, a thorough in-person exam, or a DaTscan test however, there is no way to say whether or not he actually had Parkinson’s. That didn’t stop the outcry though, from laymen and experts alike.

In our highly charged political climate, Parkinson’s went from neurodegenerative diagnosis to weaponized insult in a matter of minutes. While Parkinson’s was in the bullseye this time, using neurodegenerative diseases as slurs is not a new phenomenon. An NIH study of Twitter during a seven month span in 2020 showed thousands of posts that demonstrated ageism, devalued the lives of people with dementia, spread misinformation and false beliefs about dementia and used dementia used as an insult for political ridicule.

The post-debate fervor also further demonstrated the public’s misperception around Parkinson’s and the correlated symptoms. Supporters and opponents called for the President to step aside with many questioning his mental capacity by aligning Parkinson’s with a presumption of immediate cognitive impairment. Research shows that only between 20% and 50% of people with PD ever experience mild cognitive impairment, and some experts clarified that it would not be a disqualifier, but the calls for him to step aside - for this and other reasons - persisted, and were ultimately successful.

Before being diagnosed with Young Onset Parkinson’s in my 40s, I too believed that most people afflicted were elderly or had a family history. Had I not been personally affected, I may not have learned that 40% of patients are actually women, up to 20% are diagnosed before turning 50, and 90% do not have a genetic cause. And while some stereotypes might seem harmless, the long-held misconceptions about Parkinson’s have had real consequences, including a lack of urgency around ending the disease, as evidenced by a dismal level of federal funding for research. Parkinson’s costs our nation more than $50 billion each year, and while progress has been made, driven by nonprofit organizations like The Michael J. Fox Foundation and The Parkinson’s Foundation, there is much work to be done to support those living with it and to find a cure. This is why the National Plan was welcome news for our community.

Named for Congresswoman Jennifer Wexton who was 53 when diagnosed - later finding out she has progressive supra-nuclear palsy - and Dr. Emmanuel Bilirakis, brother of Congressman Gus Bilirakis, who passed away with the disease at 61 years old last year, the plan will now be known as the National Parkinson’s Project (NPP). Modeled after the National Alzheimer's Project Act (NAPA), which resulted in unprecedented federal research funding increases, initiated development of crucial public health infrastructure, and improved access to quality care, the NPP was a big win for the Parkinson’s community who spent years advocating for its adoption.

Unfortunately, under the scrutiny of this highly charged political moment, there was no celebration to be had. The bill signing took place during a notoriously quiet 4th of July week with only Congresswoman Wexton and Congressman Bilirakis and their immediate families present. Contrast this with other Biden administration bill signings that took place in front of crowded rooms or gardens filled with supporters, legislators, and advocates. Whether intentional or coincidental, the result was that the Parkinson’s community missed a meaningful opportunity to come together to mark this important milestone, and to personally thank the members of Congress who made it happen, especially Congresswoman Wexton and Congressman Bilirakis, as well as the President himself, for signing it into law. Parkinson’s, the fastest growing neurodegenerative disease, was once again seemingly relegated to the shadows.

In the wake of President Biden’s decision not to seek a second term, some of the conversation about his health quieted down, and Parkinson’s quickly took a back seat to the coverage of Kamala Harris’s campaign. The damage was done though, and those of us living with disease are left to defend ourselves and our own abilities, something we have sadly grown accustomed too.

Neurodegenerative diseases deserve coverage without conjecture or controversy. More than 7 million Americans are facing the impossible daily physical, emotional, and financial burdens of living with these diseases - a figure that continues to grow exponentially. The additional burden of stigma affects patients and care partners negatively including leading to poorer mental and physical health, lower quality of life, and decreased levels of hope, self-esteem, and overall well-being. Now more than ever, greater empathy and understanding for those living with the incredible challenges of these diseases is needed.

As we end this intensely divisive election cycle, perhaps this is a moment to educate ourselves and others about the realities of neurodegenerative diseases, and end the use of them as insults.