LUTZ, Fla. – He’s about what you would expect in person. He’s very casual in a slightly wrinkled, light brown golf polo and knee-length plaid shorts, deck shoes with no socks. There’s still a hint of youth in his features, but when you do the math in your head, you realize he’s nearing 50 years of age – which only serves to remind you of how old you've become.
He’s wearing sunglasses, but politely removes them in anticipation of the impending interview.
He’s fidgety, but not shaking uncontrollably. His hands are in constant motion as he talks, like a conductor directing the words, and his legs are bouncing like those of an unprepared teen taking a final exam.
Twenty years after being diagnosed with Parkinson’s disease, Michael J. Fox is outside Tampa for the Outback Steakhouse Pro-Am, an event on the Champions Tour. He played in the amateur portion of the tournament the last two years, but his schedule would not allow it this time around.
Still, he’s here. His Michael J. Fox Foundation for Parkinson’s Research is a benefactor of the Pro-Am’s charitable distributions.
If ever anyone was put behind golf’s 8-ball, it would be Fox. He didn’t start playing until five years ago, and that was only because he wanted to show support for those hosting fundraising golf tournaments. By then he was 44 and 15 years into his battle with Parkinson’s.
“I wish I had played it earlier, but I was so wrapped up in my work and being Michael Fox. Everything moved at such a fast pace, I didn’t take time to slow down,” said the actor known for his roles on the TV series 'Family Ties' and the 'Back to the Future' movie trilogy.
'Now, I play about two times a week. It doesn’t do me any good,” hecracked about trying to improve his game. “But I enjoy it.”
Tom Hutchinson loved the game. He once took off an entire month from work just to play golf every day. Now 68, he sits in a wheelchair, confined by Parkinson's disease which he was diagnosed with over a decade ago.
“I really miss it,” he lamented, not with a look of sadness, but with an air of fondness. “I played every course in Hawaii [while in the Navy], then came to Florida and played every course down here.”
Tom said he usually shot in the 90s, but once carded a personal-best 77. He also said he caddied for Jim Ferree in the Hawaiian Open. Lee Trevino was in that group, according to Tom.
“I loved his personality,” Hutchinson said of Trevino. “He was my favorite. He was so mouthy.”
Tom doesn’t remember exactly when that took place – sometime in the ‘60s, he figured. He also said it had been 11 years since he last played golf – at the time of his diagnosis. His wife, Martha, countered with six.
“He has lost some of his memory,” Martha Hutchinson said. “He played some after he was diagnosed, for four or five years. He was such a perfectionist, though …”
Her words trailed off. You knew what she meant.
The Hutchinsons take part in a Parkinson’s support group in Orlando, Fla. On a Thursday morning in March, at the Seventh Adventist Church at Florida Hospital, there were 25 people in attendance: 13 with the disease, 12 providing care.
They all shared introductions and stories. Those in battle performed physical therapy, both with their bodies and with their mouths. They moved to music like “Shake It Up, Baby.” They sang songs like “This Land is Your Land.” They voiced words like “lips,” “teeth,” “tongue” and “jaw.” They worked on their breathing and volume control.
They did all these things because they are difficult to do in their condition, and without proper exercise they would become impossible.
Parkinson’s disease makes the easy, arduous: walking, talking, breathing, remembering. It’s a degenerative disorder of the central nervous system, resulting from the death of dopamine-containing cells in the brain. It is, in the present, incurable.
The National Parkinson Foundation reports 50,000-60,000 new cases of the disease each year in the U.S. One million Americans have Parkinson’s, according to the foundation, and 4 million to 6 million suffer from the condition worldwide.
The economic burden is staggering, estimated at $6 billion in the U.S. and more than $23 billion worldwide.
“Money helps, but it’s not enough,” Fox said of what is needed to find a cure. “It’s about getting top researchers to take our case. We’re competing against other diseases for money and research. Science is hard. It’s as much about failure as it is success. It can smell of failure, but it’s a process. You have to find what doesn’t work and rule it out in an effort to eventually find out what does work.”
It took 2 ½ years for one of the ladies in the support group to be diagnosed with Parkinson’s. Doctors originally “assured” her that she did not have multiple sclerosis or Parkinson’s. But they couldn’t rightfully tell her what was wrong. It took a hand doctor to finally properly diagnosis her.
It was like that for Don Thomson as well.
“It just became a process of elimination over a period of years,” Don’s wife, Faye, said. “Nothing is for sure. He actually went on Parkinson’s medication and got worse.”
Don’s symptoms started with memory loss. He would play golf and couldn't remember where his ball went or what his score was. He never had the tell-tale signs of bodily shaking, but Parkinson’s is like an open-ended question, one without conformity of answers.
Don was an engineering manager for IBM. He used to play golf with his work buddies and volunteered for the Arnold Palmer Invitational at Bay Hill for eight years, directing the player’s parking lot.
Three years ago, he had to quit both.
Now 70, Don has three sons, four granddaughters and four grandsons. “Being around family makes him happy,” Faye said.
Don moves with a tempered gait. He struggles to express himself, in part because the memories have been shuffled to unknown places inside his head. But this he recalls: “Arnie was the one I loved to watch play. [I would] say 'hi' as he was buzzing around on that golf cart.”
Dick Reihm’s favorite player was Payne Stewart.
“He was such a character. He reminded me, with the way he dressed, of one of the old guys,” Reihm said.
Reihm is originally from Detroit. He started playing golf when he was “seven or eight.” He’s now 83.
It’s been four years since he last teed it up, since the time of his diagnosis. When asked what he misses most about the game, he says in his soft, barely audible voice, “When I hit it 250 [yards].”
He smiles, as if recalling one of those drives.
Two decades into his Parkinson’s journey, Fox has been making people feel better about themselves and their situation. Sometimes it’s encouraging words, maybe a handshake or a hug, perhaps a smile. Sometimes it’s just the knowledge of a shared experience.
“There was this young lady,” he told of someone to whom he was introduced at the Outback Pro-Am pairings party on the eve of the event. “She had a stroke. I could see her getting overwhelmed [when they met]. There is an affinity, a connection. I get that all the time. For all of the deepest conversations I’ve had with people, there is an unspoken connection that is so much more powerful. You see it in life, with tragedy and affliction. But it’s not a sadness. It’s an understanding.”
It took Fox a while to come to terms with his affliction. Diagnosed in 1991, at just 29, his initial reaction wasn’t ‘Why me?’, but rather, 'This can’t happen to me. I’m Michael Fox – the actor, the movie star.'
It took seven years for Fox to open his personal door for others to see what had taken control inside.
Now, as he sits at a circular table in the TPC Tampa Bay dining facility, facing a reporter who grew up watching him on screens small and large during both their adolescence, he – along with Muhammad Ali – has become the personification of the Parkinson’s fight.
“Bio markers,” said Fox, who advocates stem cell research. “That’s the key. There is no early diagnosis for Parkinson’s, not until you show the symptoms. By then, 80 percent of your dopamine cells are gone. That’s why you need a bio marker. That would help us target the disease from the outset. You could begin early treatment and that could be crucial to quality of life.”
April is National Parkinson’s Awareness month. The Orlando support group embodies the theme, “Shaky but Not Shaken.”
It was a constant quiver in Charlie Herring’s right hand, back in 1995, which first concerned him.
“After mowing the grass my right hand would shake. Whenever I did something physical, it would do that. Then, my [right] leg started to shake,” he said.
“I was referred to a neurologist. He told me to take some pills and come back in a week. When I went back, he said, ‘Did the pills work?’ And I said, ‘Yes. No more shaking or trembling.’ ‘You have Parkinson’s.’ Because I reacted to the medication, it showed that I had the disease.”
People associate trembling, often violent in nature, with Parkinson’s. They think of Ali. They think of Fox during his 2006 television ad stumping for U.S. Senate candidate Claire McCaskill (D-MO).
But most don’t see how it truly affects those and the ones that love them.
The don't see the insecurities. 'You can feel very conspicuous when you are in public,' Herring said.
They don’t see the “freezing,” which Herring describes as, “The body doesn’t respond to the brain. It happens a lot when you enter hallways or try to go through doors. Your brain is telling you to take a step and you can’t.”
David Aiken has this problem. His wife, Marti Miller, tells him, “’Stop.’ That gets his brain to stop and reset. Then I say, ‘Shift your weight to your right foot. Now to your left foot.’ That will get him started moving again.”
Marti is one of the handful of spouses in attendance this Thursday. While the patients are exercising, some of the caregivers move to an adjacent room to talk amongst themselves.
“We watch a lot of old movies. We dance a lot,” Marti tells the group. “We look for normalcy. When we go out to eat, I like to sit at the bar, just to talk to other people.”
Marti’s a talker. She’s been aptly nicknamed the “Mouth of the South.” A native of South Georgia and long-time resident of Winter Park, Fla., she and the rest of the group – four other ladies and one man – share experiences. They talk about what medications their partners are on. They talk about the past. They wonder aloud about the future.
They unburden themselves.
“We try and assume we can do everything until we can’t,” Marti said of her and David’s approach to life. “You’ve got no choice but to be positive.”
“You know,” she continued, “what we grieve about is the loss of our partner. This is not the man – or woman – that we married.
“The other day, I called him and told him to get a painting from the bedroom. He said he couldn’t find it. I told him, ‘It’s right there, by the bed.’ He still couldn’t find it. Sure enough, when I got home it was there. He just didn’t know that was the one I was talking about. It didn’t process. I got mad at him – then I get so mad at myself for getting mad at him.”
Patience is more than a virtue when dealing with this illness. It’s a necessity. And it can be damn hard to come by.
As support group leader Anissa Mitchell said, “They don’t get to leave this disease at the door when they leave here – patients or caregivers.”
The stress is evident, hanging in the air in the main room where the patients and the caregivers congregate prior to the start of their meeting. But as people go around and introduce themselves, relaying how long they’ve been suffering with Parkinson’s and how they are feeling on this day, the mood seems light, jovial even.
“My specialty is falling,” joked of one elderly gentleman during his introduction. Later, when the subject of golf was broached, he interjected, “That Tiger … he’s got a 22-year-old girlfriend.”
Because some of their words are methodical, because many of their reactions are delayed, because most rely on others for subsistence, don’t underestimate their capacity for comprehension.
“Wonder what Tiger Woods is going to do?” questioned Reihm. “He seems to have a mental block.”
Golf was a big part of Reihm’s life, the same as it was for Tom Hutchinson and Don Thomson. The same as it is for Michael Fox at the moment.
“Golf is a lot like life,” Fox said. “You whack it in the pond, hit it in the bush, whiff three times in the trap. You have to keep moving forward. Have to buckle down and saddle up.”
Fox has put into practice that which he preaches. The Michael J. Fox Foundation, according to its website, has donated $233 million to Parkinson’s research since its inception in 2000. He’s tireless in his efforts to fight this disease, leading the life of activist over actor.
Golf has provided him with an avenue to meet new people, to preach from his soap box, to raise money and awareness.
“It’s a great vehicle for charity. I’m amazed, all the time, how people come together and get involved at every level. A lot of people laugh when I say this, but I think [golf] brings out the best in people in a lot of instances,” he said.
Fox isn’t much for keeping score when he plays, not afraid to pocket a ball or mark an 'X.' He just loves to be engaged; so much so that he will plan family vacations around courses he wants to tackle.
That’s Michael Andrew Fox [The “J” is homage to character actor Michael J. Pollard]. A husband of 20 years to Tracy Pollan. A father to Sam Michael (21), twins Aquinnah Kathleen and Schuyler Frances (16), and Esmé Annabelle (9). An iconic actor. A tireless activist. An enthusiastic golfer.
A man comfortable with his lot in life.
“Absolutely, no doubt about it,” he said. “I was given so much when I was young. I had so many blessings. This was a wake-up call. I found out there is more to life than just my career. This was an opportunity to be of service. To motivate change. I’m in a position to make this more public, increase awareness.
“I accept this as a privilege.”
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