Every November in New York City, The Fox Foundation hosts a big gala. An enthusiastic crowd gathers to hear great musicians like the Who, Elvis Costello, Chris Martin, James Taylor, Paul Simon, John Mayer, Sheryl Crow, Dave Matthews, John Fogerty, Joan Jett, Bon Jovi, and Brad Paisley. We call the night “A Funny Thing Happened on the Way to Cure Parkinson’s,” so naturally we include comedians—Denis Leary, Ricky Gervais, David Letterman, Jon Stewart, Chris Rock, Jim Gaffigan, Amy Schumer, Robin Williams, John Mulaney, Colin Quinn, Tina Fey, and a rogue’s gallery of others.
The guests are laughing, happy, and well fed. It’s a pricey ticket, so we raise a lot of money, about $5 million in a night, all of which goes to research (the event is underwritten by our Board of Directors). Once we have you there, we stay out of your wallet; no auctions or further calls to contribute. It’s a party to celebrate the year’s progress, and a meet-and-mingle with supporters of our cause in the Parkinson’s community.
Each year at the benefit, we impart the Foundation’s mission and methods in the form of a short film. This is always coproduced by Nelle and me, with Nelle also contributing her considerable talents as director, a duty which she handles deftly, and with empathy and insight.
This year’s film tells the story of Jimmy Choi, a Parkinson’s patient and technology executive from Bolingbrook, Illinois. To say he’s an activist and a fundraiser would sell him short; he’s a part-time ninja for Parkinson’s. His experience with the disease is personal, and to many PD patients, including and especially me, particularly powerful. As Jimmy opens up during his interview with Nelle and me, much of what he describes sounds familiar. Like I used to say when I was a kid, “It takes one to know one.”
“I was diagnosed with young-onset Parkinson’s in 2003, at the age of twenty-seven,” Jimmy begins. “I didn’t tell anyone I had PD for a while, not even my wife. For the next seven years, I ignored Parkinson’s. I gained seventy pounds, which didn’t help my deteriorating health. I needed a cane to walk. Clearly, I had just given up.”
Echoes of my past demons: I was diagnosed with young-onset Parkinson’s at the same stage of life, in my late twenties. Although I shared the news with Tracy, I kept it from most.
Jimmy continues. “Then I had two ‘aha’ moments. The first: Eight years into my disease, I was going down the stairs, carrying my nine-month-old son, Mason. I thought, I don’t need my cane—I’ve got the railing. My son was tucked under my arm. One of my legs didn’t move with me; in my mind I thought it was moving, but my leg stayed behind as I approached the second or third step. I fell the entire length of the staircase. Fortunately, I was able to keep Mason above me and he was not injured, but it was startling, to say the least. My home had been my ‘safe zone,’ the place where I could let my symptoms be free. I had the false sense that nothing bad could happen inside my house, buffered by the only people who knew I had Parkinson’s.”
This is so eerily close to my experience. Disastrous falls; the challenge presented by everyday routines. Similarly, I felt a false sense of security, more like hubris, in the privacy of my home. Until I snapped my arm. Now I can’t walk into my own kitchen without having flashbacks. He probably feels the same way when he travels those stairs.
“The worst part wasn’t hitting the ground; it was looking up at my wife and daughter. I’ll never forget the expression of horror on their faces. It made me think, ‘What have I reduced myself to at this moment? I’ve become a burden, a safety hazard. Just holding my son, I put both of us in danger.’”
This part of Jimmy’s story reminds me of my last hangover; the look on Tracy’s face—in her case, boredom—that caused me to stop drinking and face life with PD and a family. Another kind of awakening.
“It struck me right then—I had to change,” Jimmy states. “I didn’t like the way I was living. I had no idea what to do about it, but if I continued on this way, it wouldn’t be good.”
It’s spooky to hear him say this. I had this moment, too, and it was powerful and revelatory.
“I began losing the weight, eating better, and taking walks with my family, but I wasn’t pushing myself physically. Then I read about a Parkinson’s patient who had finished a marathon, and it really inspired me. Before my diagnosis, I had been an athlete—captain of my high school football team, a wrestler, and a golfer. I decided to enter a 5K. Then I ran a 10K, and soon, a half-marathon. I was hooked. I couldn’t believe how much better I felt with regular, rigorous exercise. I was able to get rid of the cane.”
That’s right, I thought; just do the next right thing. Your family will see you stand up, step forward, and carry on.
“I set a goal to train for the 2012 Chicago Marathon, only a few months away. Unfortunately, the race was closed; there was no way to register.”
But there was. The Fox Foundation, like other charities, is granted a limited number of bibs in marathons and other big races, for runners to raise money for our cause.
“This was the first time I’d been in touch with the Foundation, since I avoided dealing with my Parkinson’s for so long. Soon I was talking to Stephanie at Team Fox—she had one entry bib left for the Chicago Marathon. I’ve always thought that bib was meant for me.
“I ran the marathon for Team Fox, and this was my second ‘aha’ moment. Not only did it connect me with the Foundation, which is now such a big part of my life, but it also gave me the impetus to ‘come out’ to my friends and family. I had to explain why I was raising money for Parkinson’s research. I was blown away by their reaction. My friends and family listened to my story, and they were really there for me.”
It’s harder for a guy like Jimmy to reveal his diagnosis than it was for me—and it was definitely hard for me, so I can just imagine how it was for him. It’s a very personal choice, very scary to “go public.” That first expression of support from family and friends means everything.
“In only a month’s time, I raised $5,000. After years of hiding, I opened up about my story and educated others about the disease. I did all of that in four weeks, versus the previous eight years when I did nothing. It was the most positive I’d felt in all the years since I was diagnosed. The Fox Foundation did that for me.”
Jimmy’s wife, Cherryl, adds, “Something clicked. Just signing up to be a part of something, to raise money for research, suddenly made it so much easier for us to talk to our friends and family. ‘Jimmy has Parkinson’s,’ we finally told them. ‘We’re dealing with it.’ It didn’t feel so scary anymore.”
Jimmy is smiling. “I went to my first Fox Foundation gathering not long after the Chicago Marathon. It was the Team Fox MVP Dinner in New York City, to celebrate top fundraisers. I sat down at a table with a group of strangers, other PD patients who have been my friends ever since. Suddenly, I realized there were people out there just like me, living with Parkinson’s. Everybody had little bits of information and advice that I could use to make myself better, that I could learn from. And soon I knew enough to return the favor to others.
“The whole sense of a Parkinson’s community suddenly came into play. The number of people we met at that first Fox event really jolted us. So many amazing patients and their families. We were inspired and excited by everyone on the staff of your Foundation. Cherryl and I knew then, ‘We’ve got to do more. These people are busting their tails to find a cure for Parkinson’s. We need to do more, because this is who I am now.’”
Patients like Jimmy take away the stigma: the common belief that Parkinson’s is an old person’s disease, that young people don’t have it. Before we launched the Foundation, the young-onset community had not exercised its full potential to dynamically increase awareness, advocate politically, and raise money. The Foundation gave voice to their message: PD is here, it’s real, and it can affect you or someone you know.
“I’ve now finished sixteen marathons for Team Fox, and over one hundred half-marathons. The event Cherryl and I started in Illinois, The Shake It Off 5K, has raised nearly $400,000. My body is strong. I still have symptoms and bad days, but I’m managing Parkinson’s better than ever. On my daughter’s urging, I trained and auditioned for American Ninja Warrior, her favorite show. I’m glad I did.
“I’ve competed on Ninja Warrior four times, now, and it’s been a blast.
“I remember you once saying that the best expert on this disease is ‘the patient.’ A few years ago, I agreed to join The Fox Foundation’s Patient Council, with thirty-four other patients from around the country, at different ages and stages of their disease. The folks at the Foundation truly want to know what is important to us—our daily challenges, and what the Foundation can do to help us improve our lives now.
“I also use the Foundation’s online tool, Fox Trial Finder, to match me up with available clinical trials. More trials mean more shots on goal.”
I appreciate the hockey metaphor. It’s an apt one, because that’s what we’re about. Firing at this thing from every direction: slap shots, wrist shots, long shots; it’s all about getting the puck across the line. We are relentless, and Jimmy embodies our patient-centric drive to succeed and find a cure.
“I know I have to live with this disease for many years to come, and I have to do my best to take care of myself. I want to be strong for my daughter and son. I want them to know that I’m trying my best. If they ever get into a position in life where they’re faced with some hardship, they can think, ‘What would my dad do?’”
I obviously relate to this desire. The mistake I make at times is to assume that my kids are looking at what I can’t do, and not at what I can do. They see through the disease, and they see their dad.
“Everybody I’ve met through Team Fox—the patients, families, and Foundation staff—has a mindset to beat Parkinson’s. I’ve surrounded myself with a positive circle of people, there to support me. No matter which way I fall, they’re going to push me back up. That’s been a huge key to where I am now.”
Later, I tell Jimmy how touched I am by his testimonial. With a lump in my throat, I share with him: “You’ve pushed me back up a few times, brother. You don’t even know it. There have been times I’ve thought of you, all that you’ve achieved, all you’ve given back to the Foundation, and it’s helped me get through something. I’ve had a lot of mentors in my life, but I don’t have many heroes. You’re one of them.”
Our film about Jimmy Choi is one of the highlights of our gala event. The crowd is already attentive, responsive, and enthusiastic, and Jimmy’s energy kicks it up to another level. Steve Winwood plays. The music is great, and the comics are hilarious. At some point after dinner, Tracy and I come onstage, stand at the podium, and thank people. I always have a headful of things I want to say, and Tracy, although sometimes shy at a microphone, is not averse to going off script and getting a laugh at my expense. If she leaves me an opening, I return the favor, à la Sonny and Cher (with less sequins and fringe). We go back and forth for a minute or two, and then realize we have business to attend to and return to our script on the teleprompter.
I am scanning a thousand faces in the ballroom, and thinking, Look at what we did. Nelle, Debi Brooks, and I, squatting in our former Spin City offices twenty years ago, laying out the blueprint for the Foundation, had no idea it would grow to this extent. I don’t often get this kind of perspective.
Back in 2000, when we announced our first round of scientific grants, brain research was promising but significantly underfunded. We leapt in with full enthusiasm. Many people in this room have shown tremendous commitment since the Foundation’s inception: board members and their associates, beyond generous in their support; our talented staff, led by Debi, Todd Sherer, and Sohini Chowdhury, and the dedicated scientists who are working every day to unlock this disease. There are patients with their families here tonight, too, and many are actual participants in our process—signing up for clinical trials; serving on our councils and committees; engaging in advocacy and community outreach; and fundraising through Team Fox, the special arm of the Foundation highlighted in the evening’s film. Our staff in New York helps to guide and support these community fundraisers—6,400 separate events, and counting, worldwide. It’s a badge of honor around our office, or at any of our meetings or conferences, to be identified as a Team Fox member. This group of volunteers have raised nearly $100 million for The Michael J. Fox Foundation, greatly contributing to our overall success.
It’s incredible that in less than two decades, The Fox Foundation has funded $1 billion in research. One billion dollars is a lot of money, and twenty years seems like a long time, but in research terms, we’re high-velocity. In the quest to cure Parkinson’s, we’re absolutely certain we are the tip of the spear.
I’m looking out at the sea of faces again. It strikes me that whenever I’m beating myself up over a personal setback, or feeling ineffective in my life, I need to reflect on this moment—this panoramic view in front of me—which is the result of an instinct to help, to embrace a community, and to try to make a difference. Good things can come from bad things.
Suddenly, the gala audience laughs. I snap out of my reverie and realize that Tracy just said something funny, and I missed it. I’m sure she’ll be happy to repeat it on the car ride home.
The sentinel crow atop the highest bough of our old cedar tree emits a series of sharp caws that sends the songbirds, starlings, and sparrows bursting out of the surrounding treetops, flitting and flapping in retreat. It’s not the crow that they’re afraid of; it’s what the crow is afraid of that has them in a panic. A hawk is tracing lazy circles in the sky above our neighborhood. The bird logic must be: If we all move at once, there is safety in numbers.
I’m observing this from my back porch. A pair of binoculars are close at hand, a Father’s Day gift from my kids. I’m about to reach for them when Gus comes out to the porch. I glance at him in acknowledgment and watch as he does his own slow, hawklike circle. Once he’s ready, he lowers himself, gingerly, to a sitting position beside me. I recognize the geriatric caution that goes into this effort, hovering over the landing zone. The last foot and a half of butt-drop, all gravity and luck.
“I’m watching the birds,” I tell him. After a beat, he looks at me and takes in the yard as if he understands what I’m talking about. Maybe not. I hear the high pip sound of the hawk, which spooks a bunny out of the hedgerow. Gus lets go a low woof and initiates a “getting up” motion.
I laugh and he stops. “You’re not chasing that rabbit. You’re an old man.” He is an old man. Let’s face it: He is physiologically older than I am. He seems to have lost muscle mass in his hindquarters. His back legs don’t serve him as well as they once did, getting in and out of cars, negotiating obstacles, running, and chasing rabbits. He has some tenderness in his hips, and his gait is compromised. He is slower, and can be a little mopey. He’s a big dog, so it’s obvious to us when he’s lost weight. One hundred fifteen pounds in his prime, he’s a little less than that now. We have to make an extra effort to keep him north of the one-hundred mark.
Cognitively, he’s still solid. He impresses me as having a logical, intuitive, maybe instinctive understanding of sequencing: water-walk-food; who’s coming home next; how soon will they be here; and what car will they be driving (he knows which one is mine). He grasps the concept of cause, effect, and consequence. Does that mean he understands past, present, and future? I think a dog is living all three at once. I’ve tried that; it doesn’t work.
Parkinson’s has taken away my sense of smell, but I’m told by my disgruntled family that Gus is a little more aromatic these days. We’ll be watching TV, and suddenly noses crinkle and everyone clears out. I look to make sure Gus is actually in the room, so I know for sure it wasn’t me.
Beyond all this Old Yeller boy-and-his-dog stuff, there are some real parallels. I see Gus getting older, grayer, shaggier, thinner. I’m pretty much the same, although I wish I had his waist.
Gus is twelve. Shouldn’t be old for a dog, but it is, thus providing the rationale behind that faux formula of “seven human years to one dog year,” probably manufactured to make us feel better about the brevity of a dog’s lifespan. Given Gus’s size and his genetic mélange of breeds, he’s not expected to live much past fourteen. The way I see it, though, that’s negotiable. Whatever the threat, I can attempt to forestall. There are effective meds for everything that ails a canine. If Gus needs an operation, he has a great vet. If a time comes when he can’t use his hind legs, I’ll have rear wheels made for him; a cart he can propel with his front paws.
Gus puts aging, and ultimately mortality, into perspective for me. I’ve availed myself of each of these options in my medical history: the standard cocktail of PD meds, surgery on my back and on my arm, and the use of a wheelchair. All to extend life and hopefully make the remainder of the ride as comfortable as possible.
I read somewhere that there is a red sea urchin, native to the South Pacific, that has been documented to live upward of 250 years. A freaking sea urchin. That spiny prick gets to hang out in the ocean for 250 years, and my dog, Gus, gets a dozen or so to roam the earth. Who do I see about that?