Michael J. Fox — Parkinson’s Disease Awareness

His brain and pill playing nice at alchemy, Michael J. Fox rose from the ground and onto the platform at the closing 2010 Winter Olympic Games, smoothly delivering a tongue-in-cheek monologue on Canada’s back bacon and ‘I’m sorry’ stereotypes. Comedic pokes at Canadiana aside, his flawless flow of words was what engaged the audience and viewers around the world. His unwavering gait and quick smile called for the crowd to rise to its feet to celebrate the victory and fortitude of the human spirit, garnering the loudest standing ovation on that mild Vancouver night.

He inhales conviction and exhales hope and because of that, we believe.

Michael J. Fox, 49, has Parkinson’s disease, a disease that tears at the brain, our throne of intelligence. The condition shoots chilling tremors through his body and pauses his speech; it freezes his synapses into inertia, holding him prisoner in his own body – but he wills himself from becoming its victim. “This is one fact of my life, but it’s not the totality of my life. It doesn’t define me,” remarked Fox last year on the Oprah Winfrey Show. He is a husband, and father of four, bonafide actor and bestselling author of the sublime memoirs Lucky Man (2002), and Always Looking Up: The Adventures of an Incurable Optimist (2009). He chooses to be happy, and emotions are critical for individual survival.

[View with PicLens]

On a good day – when his medication is successfully coaxing his neurons to cooperate – Fox exercises his freedom of movement by splashing along Caribbean shores with his wife, Tracy Pollan. He takes his kids to school. He campaigns with verve to find a cure.

On a bad day, when symptoms peak and his medication fades from its three-hour window of efficacy, Fox endures a dark and airless gap, suspended in the air, dangling from a coat hanger that has been surgically implanted in his skin. His body moves back and forth like a bobbing buoy in the heart of a storm, refusing to sink under the surface. His face an expressionless mask, his blue eyes retain that familiar, healing smile.

Parkinson’s disease is a neurodegenerative disorder – symptoms don’t vanish or resolve; they continue to retrogress.

Often considered an “old person’s disease,” with an average age of identification set at 60, Fox was diagnosed with Young-Onset Parkinson’s disease in 1991. There is no known cause of Parkinson’s disease – it could happen to your neighbour. A loved one. You.

At the height of his television career, Fox was just 30 when he heard the two words that changed his life.

It took seven years for the actor – best known for his role as Marty McFly in the Back to the Future trilogy – to reveal his condition to the public, partly because he didn’t want to disappoint his fans; mostly because he didn’t want to be cast as a helpless, frail victim. But when he did appear on major American broadcasts to tell his truth, Fox unknowingly provided an outlet for others living with Parkinson’s, and effectively reduced the shame that fastens itself to the unremittingly ill. “I had sparked a national conversation about Parkinson’s disease. I had always presumed that my impulse to keep my diagnosis a closely held secret was motivated purely by my celebrity status. I soon discovered that a great number of Parkinson’s patients, particularly those in the Young-Onset category, were also hiding their illness from others. Each had their own reasons … fear of being marginalized and misunderstood, stigmatized,” writes Fox in Lucky Man.

Today, he lends a lit path for those living with Parkinson’s disease to tread on, and lifts the future of science to new heights. When he’s not acting or writing, Fox dives head and heart into The Michael J. Fox Foundation for Parkinson’s Research (MJFF), which he founded in 2000. The not-for-profit organization is the largest of its kind, with a commitment to creating effective treatment therapies and a cure that will restore health to millions living with Parkinson’s disease. To date, the foundation has funded more than $175 million in Parkinson’s research, with Fox and his wife as its top donors. In 2006, Team Fox launched as an avenue for individuals yearning to offer a personal effort to raise funds for Parkinson’s research.

“I really feel this: that you get in your life, very few chances to make a difference. If this is the circumstance that makes that possible; I’m grateful for it,” Fox, recently inducted as an honorary doctor of medicine by Sweden’s Karolinska Institutet, told CBS’s Katie Couric. A long-time advocate of stem cell research, Fox was thrilled last year when U.S. President Barack Obama reversed the ban on federal funding for embryonic stem cell research, which Fox firmly believes can save the unborn who will come to life with devastating diseases. “Today is a new day,” he said on Good Morning America.

Parkinson’s disease is also boxing legend Muhammad Ali’s most famous fight; he was diagnosed in 1984. In 1997, he established the Muhammad Ali Parkinson Center and Movement Disorders Clinic. The annual charity event Celebrity Fight Night, which brings together Hollywood stars to honour Ali, has raised millions of dollars for his foundation. Ali and his wife, Lonnie, sit as members of MJFF’s Founders’ Council.

Together, Fox and Ali strategize in the same corner, bobbing and weaving to deliver a blow in the battle against Parkinson’s disease. Iconic photographer Mark Seliger captured the two in a synergistic, stirring image – a boxer-clad Fox pushes through his heel to resist the slight pressure on his head from Ali’s left hand – that was exhibited at the Govinda Gallery in Washington. Seliger said to Washington Life magazine: “It was important to show what Muhammad Ali and Michael J. Fox have in common. The concept of the photo was to have Ali, the greatest fighter in the world, training Michael, who is not exactly the biggest fighter in the world. But Michael is a real fighter in another sense, and his strength is an example for so many people.”

“I really feel this: that you get in your life, very few chances to make a difference. If this is the circumstance that makes that possible; I’m grateful for it.” – Michael J. Fox

With Fox at the helm of this enduring fracas, inspiration and hope runs through humankind’s vulnerability to chronic, incurable neurological disorders.

“I think his work is tremendous,” says Dr. Shawn Hayley, an associate professor and Canada Research Chair at the Institute of Neuroscience at Ottawa’s Carleton University. “He’s not just talking the talk, he’s walking the walk. His foundation is raising money – millions of dollars a year – to put towards Parkinson’s research, which is a terrific thing. He’s raised the profile for the disease tremendously,” adds the doctor, whose research explores how environmental toxins can cause neuronal degeneration and contribute to the onset and progression of Parkinson’s disease.

In a recent published study, Dr. Hayley’s research confirmed that one of the most widely used herbicides in the world – Paraquat, which is used to protect crops but is toxic to humans – can induce inflammatory factors in the brain. “We think this is one of the ways in which it’s killing the dopamine neurons,” says Dr. Hayley, a recipient of a Parkinson Society Canada New Investigator Award and Pilot Project Grant that will fund research aimed at better understanding how to protect neurons in a brain afflicted with Parkinson’s disease. Attesting to the importance of supporting Canadian researchers, Dr. Hayley says his innovative work would not be possible without support from Parkinson Society Canada.

According to Parkinson Society Canada, over 100,000 Canadians and four million people worldwide live with Parkinson’s disease, a disorder that kills dopamine neurons in the substantia nigra region of the brain. Body movement is controlled by this neuron, which carries signals between the nerves in the brain. Once a person displays the cardinal characteristics of Parkinson’s, they have already lost 60 – 80 per cent of their dopamine neurons. Symptoms are managed with highly effective medication – Levodopa is frequently prescribed – which may induce dyskinesia (jerky movements of the arms and head). Other beneficial options are exercise and speech therapy. A small percentage of people with Parkinson’s may benefit from surgery.

It’s important to note that the disease takes hold in each person differently. Call it ‘boutique’ or ‘bespoke,’ once Parkinson’s disease is identified in a person (currently there is no diagnostic test that can confirm the condition), a symptoms guessing game unfolds. Whether it’s tremors, slow physical movements, muscle rigidity, speech problems or cognitive changes, the disease doesn’t determine what one can’t do but instead strengthens qualities of character never known to be there. “I think people need to be aware that [Parkinson’s] diagnosis is not the end of the world,” says Stephanie Ossanna, who was 35 when she was diagnosed with the condition. “You will have emotional days whether you have Parkinson’s or not. It’s not a death sentence, it’s an opportunity for you to continue living,” says Ossanna, who helped launch Parkinson Society Canada’s Young-Onset Parkinson’s Support Group, Quinte Chapter, in eastern Ontario. “And hopefully, before I end up an old woman, they’ll have that cure that everyone has been seeking.”

In Lucky Man, Fox writes: “Having finally made the decision to share my experience with Parkinson’s, I had one goal in mind: to give an honest account of how, over the last seven years, I had integrated the disease into a rich and productive life. It was important for me to convey my optimism, gratitude, perspective. This was not a tale of woe … I sought no pity, or tears.”

The Canadian-American, who was born in Alberta and lived in British Columbia, positioned himself as a prominent young actor with three Emmy awards and a Golden Globe for his popular role as Alex P. Keaton in the sitcom Family Ties. He also brought home an Emmy, three Golden Globes and two Screen Actors Guild Awards for his role as Mike Flaherty in Spin City. In 2000, Fox semi-retired and left the show, but continues to pursue his acting and writing careers, having guest-starred in the TV dramas Rescue Me, Boston Legal, and Scrubs. Always Looking Up: The Adventures of an Incurable Optimist, was translated into an Emmy-nominated prime-time special.

Now, with that docile night in February still fresh in our memory, our conscious reminds us of this: as Vancouver applauded its finest gold medal, the rest of the world grasped that humankind’s greatest weakness is giving up, but Michael J. Fox is not one to admit defeat. www.michaeljfox.org

April is Parkinson’s Awareness Month. Parkinson Society Canada provides education, support, research and advocacy on behalf of over 100,000 Canadians living with Parkinson’s everyday. To fund Canadian researchers and support groups in your community, visit www.parkinson.ca

DID YOU KNOW?

A single cause for Parkinson’s disease has yet to be identified. Researchers are studying many theories, such as the role of genetics and environmental exposure.

▶ In some cases, Parkinsonian symptoms disappear once the person engages in exercise, such as ice skating or dancing.
▶ Symptoms include difficulties with speech, sleep, and depression.
▶ Direct costs for Parkinson’s disease in Canada are almost $90 million.
▶ Men are more likely to be diagnosed with this condition.
▶ It is not fatal. Aspiration pneumonia is the No. 1 cause of death in people living with Parkinson’s disease.

*Information provided by Parkinson Society Canada, supporting Canadians living with Parkinson’s since 1965.