This is the story of three people: Michael J Fox, celebrated Hollywood actor and star of the long-running sitcom, Spin City; Muhammad Ali, rated as the best boxer the world has seen and argued by many a pundit as the best athlete of all time; and me, a 67-year-old retiree with no claims to fame—an ordinary Joe.
What do we have in common? It’s certainly not good looks, prowess, wealth or fame. The answer is the three of us have Parkinson’s Disease, with each experiencing a unique set of symptoms—as are millions worldwide who have this lifestyle-altering but not life-threatening incurable disease.
Michael J Fox’s latest book, Always Looking Up, is subtitled The Adventures of an Incurable Optimist. Some 19 years ago, Fox noticed strange things happening to his left pinky following a boozy night out. It was twitching then; now it’s still. But the rest of his body isn’t. It was the first sign of what was to come.
While sleep brings peace, his waking life has become a torrent of sometimes slow, often jerky movements. It’s his optimism and sense of humour that keep him going. He describes how raising his hand to clean his teeth is “like releasing the tension on a slingshot and compares favourably to the most powerful state-of-the-art electric toothbrush on the market. With no off-switch, stopping means seizing my right wrist with my left hand, forcing it down to the sink basin as though disarming a knife-wielding attacker.”
He also suggests that, if you experience his type of Parkinson’s, never go to an auction. This effect, unique to Parkinson’s, happens during peak medication and is called dyskinesia, which he describes as “uncontrollable movements like undulating, weaving, rocking and bobbing.”
One can imagine the frustration he felt in his work as a high-profile professional actor, particularly when one aspect of Parkinson’s is the growing inability to be facially expressive. His situation became so complex that he simply gave up and turned his mind to the future. But what future?
While on a holiday with his family in the Bahamas, he decided to establish, without any previous experience, the Michael J Fox Foundation, essentially a lobby for greater research funding from governments and private benefactors.
And that’s where Muhammad Ali comes in. He already had one!
“I am the greatest!”
Muhammad Ali had declared himself “the greatest” and by any standards, he was good. In 2001 he and Fox arranged to meet at a function in Phoenix, Arizona. Even then Ali could hardly “carry on an extended conversation,”
but behind the mask-like face of his boxing hero, Fox could detect “a twinkle in his eye that alone could have you laughing.” The event was the annual fundraiser for the Muhammad Ali Parkinson’s Center.
While in Phoenix, they produced a joint television commercial promoting the Center. It was the beginning of a strong friendship based on a mutual interest—a cure for Parkinson’s. Later, in his room, Fox reflected on their past triumphs: “When I see old footage of my new friend, fighting, dancing, clowning, I do feel sad and angry for him. I wondered if he did too. Was it difficult for him to see a younger, healthier and stronger version of Ali?”
He mentioned this to Lonnie, Ali’s wife, who said that Ali was “at his best”
when watching his days in the ring.
“He thanks God there’s footage of his life, so he can review it.” Fox admits he occasionally watches his own movies, but not with the same enthusiasm as does Ali.
Ali, unlike Fox, has a dominant symptom of rigidity. The difference is best explained by Fox. “For an unmedicated PD patient dealing with bradykinesia, moving forward in a straight line—provided the patient can rise from the chair—may take as many as 50 halting, shuffling steps and an indeterminable amount of time to reach the exit. And once there, he or she may not be able to execute the near impossible twist of the wrist to turn the knob.
The other [medicated], profoundly dyskinetic patient may also take as many as 50 steps, but a cattle prod couldn’t force him or her to walk in a straight line. These steps are rapid, wide and looping, with dramatic lurching from side to side corrected by the occasional backward step (think Monty Python’s Ministry of Silly Walks). The trip may take the dyskinetic patient to each corner of the room and into contact with every wall, before he or she reaches the door, takes several stabs at the doorknob, finally finds purchase and flings it open. Assume there’s no ‘None of the Above’ box to tick, which of the two dilemmas would you rather face?”
The Michael J Fox Foundation is now distributing millions of dollars on a worldwide needs basis.
The latest book concentrates on this aspect of his life and his personal search for spiritual help. Fox tells how he made, and still makes, himself available for interviews, in spite of the problems created by his uncontrolled movements.
(Check his interviews with Oprah on YouTube.) He was parodied by a one prominent talk show host who believed that Fox was over-dramatising his symptoms to gain sympathy for his research cause. This was particularly hurtful, as it cruelly reflected then, as it still does, the division in international opinion on stem cell research, seen as one possible key to a future cure. It also highlighted the popular perception that Parkinson’s sufferers are play-acting or drunk. Michael was aware that, however uncomfortable it might be, in order to make his foundation a success, he had to be visible, lobby, cajole and to cope with critics.
I have neither wild movements nor rigidity. But I do have Parkinson’s. Like 70 per cent of my fellow patients, I have a tremor. My hand shakes when I carry a cup. I find it hard to keep a spoon still, often giving everyone present a sugar shower. I can’t draw a straight line. My foot shakes when I relax or get tense. My wife tells me I shuffle. Others have discovered they had Parkinson’s through not being able to place a golf ball on a tee, or have started to fall over for no apparent reason.
My personal journey started after a traumatic surgical episode, which wrecked my nerves. For months I’d weep and shake at the drop of a hat.
The crying passed but the shaking didn’t. It was diagnosed as post-traumatic stress and for about three years I was on “happy” pills! Then I noticed that my handwriting was changing—the end of each line would deteriorate into scribble that even I couldn’t read! I still had a tremor in one hand and foot, but this latest problem of writing badly was somehow different.
Then, after an inconclusive CT scan, I visited a neurologist and within minutes of entering the surgery, was diagnosed with Parkinson’s. My first reaction was dismay, but the condition now had a name, which was somewhat comforting.
Dopamine was prescribed— and worked. I have since learned that many of those with Parkinson’s have originally been misdiagnosed. The most important thing I learnt was to expect a medicated normal life with few changes. I had expected much worse.
The fact is that Michael J Fox, Muhammad Ali and yours truly were going to get Parkinson’s one day. It wasn’t drink, being punch-drunk or trauma that started it off. Parkinson’s was there all the time, ticking away in our totally different brains, ready to be launched.
The supportive role of wives, partners and carers is hard to exaggerate. Not long after I found I had Parkinson’s, my wife urged me to visit a Parkinson’s support group. Somewhat against my will, I dropped in at the local community health centre. I had expected negativity but instead, found about 15 people of all ages and from a wide range of backgrounds telling their stories, openly supporting each other, more often than not with self-deprecating humour.
Those of us with a tremor, it was suggested, should start up a tambourine band, and at a recent metropolitan seminar a young lady spoke about her journey with Parkinson’s and how it had seriously affected her life plan. It all sounded so glum until she told us how she now had dance-steps that none of her friends could duplicate. Incurable optimism, indeed!