As a neurologist specializing in Parkinson’s disease, I was profoundly touched by Sen. Cory Booker’s emotional, record-setting speech to the U.S. Senate on March 31.
For many in the Parkinson’s advocacy community, Booker has long represented a beacon of hope, campaigning tirelessly for a cure for Parkinson’s since his late father was diagnosed with the disease decades ago.
In his marathon speech, Booker read aloud a letter from a voter with Parkinson’s, which they described as an unrelenting degenerative brain disease. The letter writer said the loss of Social Security benefits would have a direct effect on them and their family and that they would need medication every day of their life. “I will need the security of a generous society to care for me,” they wrote. “Please, Senator Booker, protect my Social Security.”
Parkinson’s is the fastest-growing neurological disease. Its worldwide prevalence has been increasing exponentially – it doubled between 1990 and 2016 and then doubled again from 2016-2021. This explosion in numbers has been termed the Parkinson’s pandemic. The cause for the explosion of cases is unclear, though many fear toxin exposure is driving the escalating numbers. Parkinson’s impacts more than 110,000 Canadians, a number expected to rise to 150,000 by 2034.
Though the popular images of Parkinson’s are of old white men in wheelchairs, Parkinson’s also affects women and all races; in 10 per cent of cases, it presents first symptoms in people below the age of 50. Increasing disease awareness in minoritized communities is critical to avoiding delays in diagnosis and getting patients on the right treatment. Though there is no cure, medications to treat motor symptoms can improve quality of life.
Booker recorded a 60-second ad in 2014 for the National Parkinson Foundation to raise awareness of early warning signs of the disease and where to seek help.
Motor symptoms in Parkinson’s include stiffness, slowness and tremor and changes in walking and balance. There are also many non-motor symptoms, including constipation, loss of sense of smell and bladder changes. Mental-health symptoms can include depression, anxiety and apathy.
Lifestyle choices, including exercise, diet, sleep, social connection and mind-body approaches, can be highly beneficial. Helping patients reach a frame of mind where they have hope, feel compassion and support and where they have a sense of agency over their future is critical.
In a speech to the Parkinson’s Policy Forum in 2018, Booker talked about the fact that his father lived by the belief that “we are all connected to each other.” He said that as a young man, he was profoundly affected when his father, his “superhero,” showed him that courage was “getting up every single day despite disability or depression” and finding a way to press forward.
Booker spoke about how Parkinson’s strips all our differences away and reveals “the rawness of humanity” and “the power of connection.” He ended his speech with a call to action: “What you do matters … in the cause of light and love … in the cause of people who are isolated, who are suffering now.”
“You can’t always choose what life brings you, but you can always choose the attitude that you bring to life.”
He acknowledged patients and families who don’t have access to the care or resources that his family was lucky to have. He also acknowledged the millions of unpaid caregivers who work countless hours caring for their loved ones.
Booker eloquently wrote about his father, whom he admired for his positive attitude in the face of adversity, in an op-ed piece in the Baltimore Sun in 2014. And he described the challenges his mother faced while navigating the health-care system as a caregiver. He described how, as his father’s mental state deteriorated, his mother had to enlist the help of home health-care workers. “Caregivers like my mom face extraordinary demands both physically and emotionally,” he wrote.
According to Parkinson Canada, the estimated direct health system costs was $332 million in 2024, increasing to $435 million by 2034. Additionally, those with Parkinson’s will collectively face nearly $2 billion in direct and indirect costs in 2024, increasing to $2.6 billion by 2034. Care partners will face $990 million in costs in 2024, projected to rise to $1.3 billion by 2034.
In the U.S., the National Plan to End Parkinson’s Disease Act, signed into law in July 2024, calls for an integrated plan to prevent, diagnose, treat and cure Parkinson’s, ameliorate symptoms and slow or stop progression. Though there has been a tremendous advocacy movement in Canada, including the founders of the PD Avengers, similar legislation has not been passed in Canada. Parkinson’s research has been woefully underfunded and is at tremendous risk for funding cuts in the current political environment.
Advocates including Booker and Jennifer Wexton, a former congresswoman with a Parkinson’s-like disorder, are critical for the Parkinson’s community. They help to decrease stigma and increase awareness. They help those living with the disease to feel less alone. The faces of diverse races and genders and ages are essential to help people come forward to get diagnosed and to dispel the myth of Parkinson’s as a disease of “old white men.”
In the op-ed piece in the Baltimore Sun, Booker wrote: “My father confronted challenges with an understanding that you can’t always choose what life brings you, but you can always choose the attitude that you bring to life.”
My partner was diagnosed with Parkinson’s almost 5 years ago. His disease has progressed significantly in the past year, and he begun to have delusions. He also had side effects from carbidopa/levodopa, which we decided to stop, and our primary physician decided he should start on PD-5 formula 4 months ago. He now sleeps soundly, works out frequently, and is now very active since we started him on the PD-5 formula. It doesn’t make the Parkinson’s disease go away, but it did give him a better quality of life. We got the treatment from uine healthcentre . c om