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Neurology Now:
doi: 10.1097/01.NNN.0000441125.08421.00
Features: Michael J. Fox

Showing Up as Michael J. Fox

Gora, Susannah

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To Order Parkinson's Disease: A Guide for Patients and Families For your free DVD and guidebook featuring Michael J. Fox, or for more information, please contact AAN Member Services at 800-879-1960. You can view the video and booklet at AAN.com/view/PatientEducationVideos

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Abstract

Whether heading up his foundation, hosting an educational video about Parkinson's disease, or starring in his new show, Michael J. Fox is fully present.

In one of the early episodes of Michael J. Fox's new TV show, Fox's character, Mike Henry, tells a story about a pregnant woman in Mozambique who was about go to into labor when a flood swept through her village. To save her baby, she climbed up into a tree. “A lady had a baby in a tree,” Mike Henry says to his family. Really, though, it's Michael J. Fox saying it to all of us. That story has become, for Fox and his real-life family, a symbol of optimism and bravery in the face of life's challenges.

It's just that kind of optimism that propels Fox, diagnosed with Parkinson's disease (PD) in 1991, to take on more than most people could handle. There's his new NBC sitcom, The Michael J. Fox Show, which marks his first starring role in 13 years. There's his foundation, The Michael J. Fox Foundation for Parkinson's Research (MJFF), which has funded $375 million in research and is now launching a study on loss of smell and PD. And there's the new American Academy of Neurology (AAN) video that he's featured in: Parkinson's Disease: A Guide For Patients And Families. The video, which covers the basics of PD (including diagnosis and treatment options), will be available both as a DVD and online in January, 2014.

“One of the reasons I really wanted to be part of the DVD,” Fox, 52, tells Neurology Now in an email interview, “was to help get the message out that the quest for a cure depends on patients and their loved ones participating in clinical research.”


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PARTICIPATING IN RESEARCH

Clinical trials allow scientists to learn more about the disease and to test the safety and effectiveness of new treatments. Yet trials often face challenges enrolling participants. The Fox Foundation's online tool, Fox Trial Finder ( foxtrialfinder.org), says Fox, “exists to allow people to put in their information and see what trials are available for them to get involved in, because they may be really valuable participants in clinical trials. It's off to a strong start, but we still need thousands more people to get involved.”

Another exciting way people can help find a cure is by taking the MJFF's Smell Survey, part of a study examining the relationship between loss of smell and PD (PD is thought to begin in the olfactory regions of the brain, which are essential for smell). Almost all newly diagnosed PD patients experience some loss of smell—and scientists now believe that this symptom begins many years before the onset of PD's motor symptoms, such as tremors and rigidity. The study, which involves a scratch-and-sniff smell test sent to participants in the mail, uses loss of smell as a way of identifying people who haven't yet developed PD but might in the future. The MJFF needs people aged 60 and older without PD to sign up for the smell survey at www.michaeljfox.org/takethesmellsurvey.

The vast majority of people with loss of smell will not go on to develop PD. However, a person who has loss of smell and lowered dopamine levels in the brain may go on to develop the motor symptoms of PD. By examining blood and other samples from participants in the years before they develop motor symptoms, scientists may be able to identify PD biomarkers. (The smell study is part of MJFF's Parkinson's Progression Markers Initiative, which works to find biological markers of the disease.) Even more hopeful is the possibility that the smell study will allow scientists to “prevent the motor symptoms from happening in the first place,” says Todd Sherer, Ph.D. CEO of MJFF. (To watch a video interview with AAN member Kenneth Marek, M.D., on the smell study, and with AAN Fellow Lisa Shulman, M.D., on PD, go to bit.ly/NbvqJU.)


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SMELL AND THE BRAIN

Enjoying the aroma of a flower may seem effortless, but it's the result of many complex interactions within the brain. During the process, air (and the tiny odor molecules it carries) enters the nostrils, passing through mucous membranes that contain millions of olfactory nerve cells. These cells then send information about the odor molecules (the scent) to the brain through olfactory nerves, which connect with parts of the brain called the olfactory bulb and the olfactory tract. “You may have noticed that the smell of a gardenia perfume that your mother wore when you were small suddenly catapults you back to your childhood home, watching her get ready to go out to dinner,” writes Ronald DeVere, M.D., Fellow of the AAN and director of the Alzheimer's Disease and Memory Disorders Center and the Taste and Smell Disorders Clinic, Austin, TX, in his book Navigating Smell and Taste Disorders from the Neurology Now Books Series. “Memories that are triggered by odors are more emotional and more vivid than memories triggered by sights or sounds,” because “the nerve pathways of the smell system travel through regions of the brain central to emotional responses.”

In the brains of people with PD, a protein called alpha-synuclein accumulates in the olfactory system, causing damage. Loss of smell usually reaches its peak early on in the PD disease process, and tends not to get worse (or better) over time, according to Dr. DeVere.

PD is only one cause of loss of smell. Other causes include chronic sinus infections, viral infections (including colds), nose polyps, diabetes, schizophrenia, chemotherapy and radiation treatment, vitamin deficiencies, head injury, smoking, alcoholism, and neurologic conditions such as Alzheimer's disease and multiple sclerosis. The most common cause of loss of smell is age.

No treatments exist for loss of smell caused by PD, so adjusting is essential. “I can't smell smoke or identify sour milk and bad food,” explains Dr. DeVere, who lost much of his sense of smell after a bad cold. “We recommend people don't eat anything that's not labeled or dated,” he explains. Dr. DeVere has a smoke alarm, a gas alarm, and a carbon monoxide alarm in his home. Loss of smell also greatly diminishes people's ability to taste and enjoy food, which can lead to depression, reduced appetite, and weight loss—so food preparation should enhance what's still enjoyable, such as texture, spiciness, and temperature (Dr. DeVere's book, coauthored by professional chef Marjorie Calvert, provides many such recipes).

But loss of smell can also be a powerful diagnostic aid when used in conjunction with a neurologic exam. Eric Lipper, an attorney in Texas, had been experiencing symptoms such as stiffness and fatigue, but his neurologist was unable to pinpoint his illness, even after doing an MRI and a spinal tap. What modern technology couldn't illuminate, a common household spice could: “My neurologist waved a jar of cinnamon under my nose, and I couldn't smell anything,” Lipper recalls. “That was the day he diagnosed me with PD.” Lipper hadn't even been aware of his loss of smell (this is often the case—and yet another reason the MJFF smell study is so important).

Lipper has found ways to deal with his loss of smell (such as eating spicier food) as well as an effective exercise and medication regimen, and he has succeeded in losing 50 lbs. since his diagnosis. “I have worked hard to get where I am,” he says.

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RETURNING TO TV

The Michael J. Fox Show marks the actor's return to full-time TV work after a 13-year hiatus. In the new show, a family comedy, Fox plays Mike Henry, a beloved NBC newsman with PD who had retired years earlier because of his disease but decides to return to work—just as Fox is doing by starring in this sitcom. Asked why this was the right moment to do the show, Fox replies, “A lot of factors went into it. I try to put out a message of live today, reach for your goals, and don't be intimidated by your diagnosis—and I realized that I needed to live by my own words. Also, I wanted to act again, so I put it out there. I said I can still do this…the only thing I can't do is play someone who doesn't have PD.”

Fox first became a household name in 1982 starring as yuppie poster-boy Alex P. Keaton on the hit sitcom Family Ties. Soon, Fox was starring as time-traveling teen Marty McFly in the now-iconic Back To The Future trilogy. While filming 1991's Doc Hollywood, however, Fox began experiencing strange tremors, and later that year was diagnosed with young-onset PD. At just 30 years old, he was told that he had perhaps 10 years left to work. Fox returned to television in 1996 with Spin City, a sitcom set in the New York City mayor's office. In 1998, Fox went public with his PD diagnosis and retired from full-time TV acting in 2000—or so it seemed. But Fox's version of retirement wasn't exactly typical: he founded MJFF; he testified about PD before Congress; he wrote three books; and he found time to act in guest spots on TV shows such as Curb Your Enthusiasm and The Good Wife.

When Fox realized he was ready to dive back into TV full-time, the industry was more than ready for him. NBC agreed to 22 episodes of The Michael J. Fox Show without so much as a pilot episode—something that is virtually unheard of. Of his TV journey from Family Ties to Spin City to The Michael J. Fox Show, Fox has said: “I like the idea of having started playing the son on a family show, then an adult in a workplace, and now playing a middleaged father at home. It's nice—it's a good arc.”

The Michael J. Fox Show features plenty of material inspired by Fox's real life family (wife, actress Tracy Pollan and their four children)—and also plenty of Fox's trademark joie de vivre. “I said to the writers on the show, 'whatever you do, write me joy, because I play joy well.' Alex [on Family Ties] was most fun when he was experiencing joy. For Marty [McFly], it was his joy, his excitement. That's really the emotion I'm most at home in. Not that I can't experience sadness, or desire, or whatever. I'm just most at home in joy.”

It's that kind of joyful attitude, perhaps, that allows Fox to get through the 14-hour days so typical of filming a TV show. “Some days are tough,” he admits. “For the most part, it's a muscle that I hadn't been working. But in coming back and working, I've become strong again in areas that I forgot I was strong in. On the whole, it's been an energizing experience.”

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JUST DO IT

Fox's MJFF colleagues see the actor's return to full-time television as an opportunity to increase awareness of PD. “The biggest risk factor for [neurodegenerative diseases such as PD] is age,” says Dr. Sherer. “Unfortunately, as we have an aging population, more and more people are going to get diagnosed with these diseases. So now is the time to really focus on the research.”

Within the PD community, says Dr. Sherer, there has been “a groundswell of enthusiasm and support for what Michael J. Fox is doing. He has a really optimistic view, which is, why can't we accomplish things in the face of these challenges? Why can't we cure PD? We just need to get funding and the smartest people working on it and keep focused.”

Finding a cure for PD is something we can all participate in. “People are motivated by seeing the role they can play in moving the science forward,” says Dr. Sherer, “not just waiting for scientific breakthroughs, but inserting themselves into the process.” Clinical trials like the new smell study empower everybody to take part in the fight against PD.

When Fox's good friend, the comedian Denis Leary, first learned that Fox was doing a TV show, Leary remembered being “a little concerned… and wondered whether he was up for all the work. But then you talk to him, and hear his enthusiasm. And you think, 'This man is still unstoppable.'” So how does Fox make it through those long days onset? Much the same way he navigates through everything else: “I don't tell myself that I can't do it. Then I just do it.”

© 2013 American Academy of Neurology

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