written by Michelle Hopkins
It was 1990 and Michael J. Fox was already a household name thanks to his role as the affable, and oh-so-preppy Republican Alex P. Keaton on the popular sitcom Family Ties.
One morning, the then 29-year-old woke up and noticed his pinkie finger was shaking. Shrugging it off, Fox put it down to the effects of a night of serious drinking. In time, the Canadian actor could no longer dismiss the increased trembling.
It was not until nearly a year later that Fox would receive the devastating news that the shaking was caused by Parkinson’s disease (PD)—a chronic, degenerative neurological disorder that affects roughly one in 100 people older than 60.
Some PD sufferers learn that they have the disease before the age of 50. Legendary late boxer Muhammad Ali was also a fellow early-onset Parkinson’s sufferer of more than three decades.
With PD, the brain cells that produce dopamine—typically we think of dopamine as the “feel-good” chemical in the brain—slowly stop generating the chemical and eventually the cells die off. That is why PD sufferers lose their ability to control their movements as well as their emotions. Both Ali and Fox experienced PD symptoms such as tremors, slowed movements and muscle stiffness.
After his diagnosis, Fox admits to spending years feeling sorry for himself and hitting the bottle even harder.
It wasn’t until 1998, however, that Fox went public with his diagnosis. He felt compelled to do so because his symptoms were progressing to the point that they were too prominent to ignore. By then, he had already starred in blockbuster films as Back to the Future trilogies and Teen Wolf, and was still working on the TV series Spin City (1996-2002).
So why come out seven years later? The 55-year-old actor would later speak publicly about how he had to work through his demons first—most notably the heavy drinking and depression that ensued after being told the devastating news. It took a few months for the actor to accept his fate and years of intense psychotherapy to change his view about PD.
He first opened up about his battle with alcohol in his autobiography, Lucky Man – A Memoir (published April 2002). It was also in this inaugural book that he credits therapy and the incredible support from his wife, actress Tracy Pollan, for helping him go public about his condition.
In his book, he also discusses what Parkinson’s has given him. It might surprise some that Fox said it gave him the chance to reflect on how truly blessed he was in both his life and career, while providing him the opportunity to help in the global search for a cure and spread public awareness of the disease.
From Actor to Activist
Since coming out, the multiple Emmy and Golden Globe award-winning Fox, who was honored with a star on the Hollywood Walk of Fame and inducted into Canada’s Walk of Fame in 2000, has been candid and very personal about his battle with PD.
As his disease progressed, Fox made the decision to walk away from Spin City following his fourth season and 100th episode, and in 2000, he founded the Michael J. Fox Foundation for Parkinson’s Research.
The beloved Canadian actor told OnTrak that his foundation was born out of a desire to find a cure. “I saw that if we got the right people together and made a plan, we could get more researchers working to cure Parkinson’s disease,” he said. “Today, the science is moving at an incredible pace—more PD treatments are reaching clinical testing than ever before. We still have a lot to do, but we have great minds working hard to make Parkinson’s a thing of the past.”
Since then, his optimism and courage seem boundless. In numerous interviews since his diagnosis, however, Fox has been brutally honest about the ongoing emotional, physical and spiritual challenges that he’s faced in nearly three decades of living with the disease.
Today, the actor, producer, author and father of four has become a respected voice people who are suffering with PD. An estimated five million people worldwide are living with the disease.
Fox has also written two more books chronicling his journey with Parkinson’s, one a follow up Always Looking Up: The Adventures of an Incurable Optimist (March 2009), and A Funny Thing Happened on the Way to the Future, a compendium of wisdom for graduates, (April 2010).
In an interview with The Guardian in 2009, Fox said of Parkinson’s that it is “the gift that keeps on taking.”
Meanwhile, the Burnaby-raised Fox does come back to BC to visit family and friends. “BC has everything—mountains, forest, the ocean,” he said. “Great cities big and small, but what’s really impressive about the province is the spirit of the people. They’re outgoing, generous, adventurous and a lot of fun to be around. I’m glad I grew up there, and I love to go back and see friends and family.”
The exact cause of Parkinson’s disease is still unknown, said Debra W. Brooks, the foundation’s senior vice president. Although some cases of PD are hereditary and can be traced to specific genetic mutations, by and large most cases are random—in other words, the disease doesn’t run in the family.
“Researchers believe that PD could be a result of a combination of genetic susceptibility and exposure to one or more unknown environmental factors that trigger the disease,” said Brooks, who co-founded the foundation with Fox because of their mutual quest to speed up new treatments to PD patients and to finding a cure.
The most visible signs of PD include: trembling in the hands, arms, legs, jaw, and face, body stiffness, slow movements, and impaired balance and coordination.
In March 2015, Brooks was honored by the White House for her role in bringing together the world’s best PD researchers and its community to further increase participation in clinical trials and fund research leading to new breakthroughs.
“One of our mandates is to deploy the funds to speed up the advancement of novel, innovative treatments and high-impact approaches to the field of Parkinson’s research,” explained Brooks. “If we can slow down the progression of the disease by treating the symptoms better, that would be a breakthrough.”
Brooks is encouraged by the exciting opportunities that are currently in testing right now. Although a synthetic dopamine is the prescription of choice for many, it is certainly not the perfect solution.
“There are drugs in testing right now that could really be transformative for patients,” she noted. “We don’t have a treatment that stops, slows or prevents PD but we have medications that help … The aha moment can be a twenty-five- to thirty-year journey.”
Of Fox’s seemingly overriding optimism, she believes it helps him deal with the challenges that life presents. “An ever-growing body of research links a great attitude to better long-term health outcomes,” Brooks observed. “That outcome may be because optimism goes hand-in-hand with feeling empowered to shape one’s own destiny.”
Hope Through Research
Meanwhile, Brooks is optimistic that, through more research, they will find a cure. In the meantime, she said if “we can have a better delivery of drugs to manage the psychosis and symptoms, patients with PD can enjoy a better quality of life.”
Trial Studies Are Key
Since its inception, the foundation has always tried to find ways to involve the PD community in critical PD trials.
“The PD community is not an easy one to engage because many patients are embarrassed by their symptoms,” Brooks said. “There is a tendency to go inwards because they don’t want to be pitied or overlooked. [Fox’s] profile has helped enormously with our ability to get PD patients involved.”
When it comes to the foundation choosing what disease-modifying drug development trials to fund, Brooks said: “A therapy to prevent, slow or stop Parkinson’s progression would be a game-changer for the more than five million people living with Parkinson’s worldwide. Amid the twists and turns of drug development, we’re making great strides to bring such treatments to pharmacy shelves. A number of potentially disease-modifying therapies are in clinical testing and more are nearing that milestone. Patients themselves can take part and help us speed progress toward a cure. Interested volunteers can register with our online clinical trial matching tool Fox Trial Finder (foxtrialfinder.org) to be connected with Parkinson’s studies in their area.”
According to the foundation’s website, between 40 and 70 percent of worldwide trials face delays because of a lack of volunteers. As of July 2016, nearly 58,000 people have volunteered to take part in clinical trials.
The foundation created the Fox Trail Finder as a way to increase the number of participants—both people with Parkinson’s and control participants who do not have Parkinson’s—into the clinical trials that need them, accelerating the Parkinson’s drug development process.
Until here is a cure, Brooks says the foundation views success “by how many promising therapies can we get closer to critical human clinical trials.”
Michael J. Fox’s Optimism Is Contagious
“Michael possesses incredible courage and leadership,” Brooks said. “Not only is he genuine, he connects to the patient and family community of those living with Parkinson’s.”
Though there is no known cure yet, the foundation is working on ways to make PD more manageable.
“We are trying to piece together the jigsaw, to help sufferers to live longer, and also to cope with it better,” Brooks explained.
Sixteen years later, the foundation has invested more than $450 million in Parkinson’s research, driving forward more than 100 drug initiatives. Brooks is more passionate about the foundation’s work today than she was on that first day. “I feel extremely proud that sixteen years later, I am still strengthened by the possibilities,” she said