Parkinson's disease

Mention the name M. Scott Peck and back like an echo comes the title The Road Less Traveled. Peck, a quarter-century ago, literally trail-blazed his first book across the country to create a new genre of spiritual self-exploration. In his phrase, exploring "spiritual growth as co-creation, with God."

It sold more than 7 million copies in the United States and another 3 million worldwide.

In the two and a half decades since the book's publication, M. Scott Peck has lived much of his inner life, and a modicum of his personal life, in public. He has been, and at 67 still is, on a spiritual quest.

One additional daily companion on his journey now is Parkinson's disease. It has made steady inroads into most aspects of his daily living and will, in time, come to dominate the external man.

How Peck assesses its progress and his debilitation has been the topic of many hours of telephone conversation between us. Off-limits were questions regarding his family members, except when he chose to mention them.

The focus was Parkinson's disease as part of NCR's continuing health care coverage. What follows is an attempt to illustrate and track an insidious and relentless disease, as observed and experienced by Peck--as a psychiatrist, as a man who has caught the public imagination with his spiritual search, as a medical doctor, and as an ordinary individual trying physically to get through the day.

Peck ranges across the topic, from facing death to the practicalities of physical aids, such as the trapeze installed to help him get out of bed.

He has not become a student of Parkinson's disease in general. He talks about his perceptions as a person facing the fact that for scientifically unaccountable--as yet--reasons, Parkinson's disease occurs as the dopamine supply to the brain lessens and continues to diminish.

The physical results that friends and relatives of people with Parkinson's disease witness are the external effects of the brain's dopamine shortage, the visible effects on the person's musculature, memory, speech and gait.

Dopamine is one of the essential ingredients that fuel the brain's activity.

Peck was willing to discuss all these things in some detail. And what follows is who he is, where he came from, what he did, and what he sees, feels and thinks about his disease as he walks along--the road last traveled.

In the early 1990s, contemplating retirement, M. Scott Peck and his wife, Lily, both golfers, bought a house in California. It was alongside a golf course and the Pacific Ocean. They kept their western Connecticut house, their home for 30 years.

By then in his mid-50s, New York City born and raised, Morgan Scott Peck, in addition to his golf clubs, carried to California a normal half-century's worth of joys and woes.

The woes included a feud with his father that lasted half a lifetime. Peck senior was a successful lawyer and judge whom Peck, in adolescence and young adulthood, hated.

Then there was the admission by Peck that he had been unfaithful to his wife--publicly lamented in one of his books. And-there is his own judgment on himself as a parent, "I paid a lot of attention to my writing and my speaking career and paid less attention to my children than I should have," he said.

Through 25 years of celebrity status, he did stick by his vow never to expose the children to the publicity mill that surrounded him, to separate their private and personal lives from his own public writing and lectures.

Along his road to California, the joys included happy family memories, adventurous trips, evidence that he'd been able to help people through difficulties, and the successes of a string of books, not least the one that spent 10 years on The New York Times bestsellers list.

The joys included the satisfaction that came as he and his wife invested a great deal of energy, and more than $3 million, into their Foundation for Community Encouragement, now in abeyance. It was, he said, "an educational foundation. Community has to do with communication, and what we were teaching was healthy communication both within and between groups."

The 1990s California idyll would turn into a working retirement for Peck, who had been educated at Exeter and Friends' Seminary. (He'd walked out of Exeter at 15, affronted by its WASP-ishness and "Spartan, almost vicious adolescent culture."

When he walked out of Exeter he walked into a psychiatric hospital and therapy for five weeks. His father made him see a psychiatrist. He entered voluntarily and did not find the therapy unpleasant The incident was not the seat of Peck's hostility toward his parent. Rather his father, he said, was a domineering man who, in addition to openly favoring Scott's older brother, David Jr., a sportsman, was "a Jekyll and Hyde character. You never knew who was coming home to dinner."

Appropriately enough in California, where he was daily swinging his driver and doing increasingly nervous putts on the greens, Peck was commissioned to do a book on golf, a sort of reciprocity book--golf as good for the soul and vice versa.

But the game was not bringing soul-peace to Peck. He'd never been a great golfer, but a reasonably good one who now started getting worse.

Lily's game--and she has lupus (a form of arthritis)--he said wryly, was getting better, "and that made it worse."

He noticed his left hand was cog-wheeling, twisting uncontrollably. It's an indicator of Parkinson's, he said. He said he told himself, "Oh, well, you've got Parkinson's."

He recalled, "I didn't pay any more attention. Except here I was writing this book about you'll learn something about your soul every time you play and your game just might get better."

Yet he hadn't learned to look deeper into the physical difficulties he was experiencing, though "I was lucky if I hit a decent shot any more." His drive was off, which he attributed to his bad back.

His game deteriorated to the point that by 1996, at the end of three holes, he was exhausted and no longer interested.

About 1996, he went "into a very, very dark period of about three years duration. About one-third of Parkinson's patients do before they are formally diagnosed. They have some sense that something is terribly wrong with them," he said, "but they have no idea what.

"For me that was one of the worse parts of Parkinson's disease. I used to have what I called death attacks at 8 o'clock in the evening. I would suddenly feel like I was dying and it was all I could do to crawl up the stairs."

Neither as a physician nor as a psychiatrist was the Case Western Reserve University-trained physician able to plumb the depths of his own condition or desperation.

During his training in neurology, he said, "I don't remember seeing a Parkinson's patient. It's been amazing to me, in retrospect, that during my residency it was a disease in the closet. I had no idea what a devastating disease it can be. I also had no idea what a gentle disease it is, meaning it's slow. You have plenty of time to adjust to it, both physically and mentally."

Peck's residency was with the U.S. Army--he was in uniform from 1963 to 1972--quite a switch for someone who had led a one-man ROTC revolt at Middlebury College, Vt. (When Middlebury began deducting academic credits every time Peck didn't go to the ROTC meeting, he transferred to Harvard, where, he said, "they happily restored all the deducted credits.")

In his late-1990s depths, "Lily kept wanting me to go see a psychiatrist--as did a couple of others. But I knew that what I was experiencing was not an ordinary depression." His spiritual director, who "cared for me some years earlier when I'd gone through a midlife crisis, a much more substantial depression," thought he was perhaps going through a dark night of the soul.

Said Peck, "This wasn't that. While God didn't seem to be hopping around inside me, I didn't feel he'd deserted me. I emerged out of that terrible time about three years ago, let's say early 2000."

His Parkinson's disease had been diagnosed in 1999. At first the medicine nauseated him, "but gradually I got into it and I came out of this dark period singing and incessantly humming, whistling or otherwise making a joyful noise unto the Lord. And that has been daily, nightly, for three years now." (It has also turned Peck into a song-writer. He has an "anti-secularist" CD, "Free Will," circulating among friends. In essence it's a stern chastisement, with some light moments, of those who deliberately close their minds and hearts to God's presence.)

Peck's Christianity is nondenominational and not lifetime. He was not baptized. His parents attended a Protestant church about four times a year--for appearance's sake, he suggested. For some 15 years as a young man he identified himself as a Zen Buddhist. At age 43, he was baptized in an Episcopal church by a Methodist minister.

He belongs to no particular church, attended several and, until Parkinson's ended his driving, he regularly received the Eucharist. Now the Eucharist comes to him if one of his visitors is a minister. When asked which faith tradition he would move toward if pressed, he said that with a gun at his back in a choose-or-die situation, he'd become a Roman Catholic.

As for coming out of his 1990s' darkness "incessantly happy, imperturbably joyous, there are only two possible answers to that," Peck said, "either Parkinsonian brain damage or a kind of settled state. Take your pick."

To meet the medical and external demands imposed by Parkinson's, the Pecks sold their California home and returned to Connecticut. He was a member of the local medical community there and had watched it grow. In addition, Peck said, "I have a beloved internist friend from the first day we moved here (in the early 1970s, before the California sojourn). So it's a superb medical community and one which I can manipulate to my heart's desire. Which is very, very nice because usually the medical establishment manipulates you."

As a patient, said Peck, there are both advantages and disadvantages to being a doctor. Being on the inside, one knows what isn't being done. Being Peck, he surfaced this disquiet into a chapter of his book Denial of the Soul. He describes the chapter as "a very good diatribe about pain mismanagement."

For Parkinson's sufferers, he said, "It's terrible that people don't get the kind of treatment I can get with my doctor--because he knows me and will spend the kind of time it takes. This internist of mine, he refuses to make any appointments for less than a half hour. I don't know how he manages to live financially because the insurance companies say no, no. And he's old-fashioned enough to just say, screw it.

"As a neuropsychiatrist, I can't say that Parkinson's people should be treated this way or that," he said, "because it is just so individualized. But if I were a physician today facing someone with Parkinson's symptoms," he continued, "I would schedule an initial two-hour appointment--this is me--to get to know that person. Because any advice that I might give him or her regarding Parkinson's, and my monitoring of him or her, should be tailored by my knowledge of the person as an individual."

He acknowledges that the chances of that happening today are slim to zero. "In a back-ass way," he said, "that's the medical dilemma that the United States has come to."

For Peck, another physical resource, he said, is the house itself, and its setting. He is convinced it has "one of the most beautiful gardens in New England. And I have a little spot in the middle of it where there's a tiny patio I call my anti-Calcutta spot. I'm a great admirer of Mother Teresa's work, there's been a beauty to that. But in Calcutta, to me, death was around every corner. And in this spot everything is growing, life-giving. I am content in this spot. Energized."

Asked to describe what as a physician and psychiatrist he sees happening inside his body and mind, Peck first said: "I have a general message for Parkinson's patients. If the handwriting on the wall is extremely clear, read it. I mean that when my wife or my staff moved to make changes, like getting handles here or handles there, or a special chair to go upstairs, or a trapeze on my bed, they didn't move a moment too soon."

The emotional expenditure on accepting those things can be overdone, said Peck. "It isn't, 'Oh, I know now I'm going to die.' But, as the neurologist who diagnosed me told me that first day, 'Your first adjustment is to the disease's variability.' That was very good advice. Parkinson's will not only vary from week to week, day to day, but hour to hour, minute to minute."

As a psychiatrist, he continued, he finds his Parkinson's disease "absolutely fascinating." He watches the systems gradually shutting down. When asked if that is what is being witnessed in Pope John Paul II's condition, Peck used his own situation as a mirror on the pope's deterioration.

"Because the brain controls everything through the nervous system," he said, "any muscle in your body can be affected as the brain function falters and different nerves fail. Swallowing, which relates to the voice problem, is a major difficulty."

Two prime causes of death from Parkinson's, he said, are pneumonia related to the loss of the swallowing function, or from choking.

Peck told of the day his epiglottis "hadn't woken up," and he poured "the whole slug of coffee straight down my windpipe. It was a little frightening." It was more than an hour later before, considerably weary, he'd coughed it all out.

Every Parkinson's patient, he said, battles with constipation and at least partial incontinence because the nerves are just not working right.

Unlike ALS (Lou Gehrig's disease), said Peck, "with Parkinson's the brain, the thinking, is also affected, and that of course is a particularly fascinating thing for me. I have some very distinct brain dysfunction--not just outer nerves out of the brain--that I can identify. I don't know whether I could if I was not a psychiatrist and very accustomed to looking at myself.

"Memory loss first. It's not different from the memory loss that most people have as they get older, except it's much worse than it should be for a 67-year-old. There's a nominal dysphasia, naming names or nouns. Probably at least once a half hour I find myself searching for a word that I know, tip of my tongue kind of things, which is a higher rate than one would ordinarily have at 67.

"I've gotten very adept at asking people to tell me, you know, what is that word. That's the first and easiest to spot. Then there's expressive aphasia. Aphasia is a disorder of communication essentially. Expressive aphasia refers to a disorder in your speaking, communicating verbally, or sometimes emotionally. That's opposed to receptive aphasia, which is a difficulty understanding what is communicated. I seem to have no receptive aphasia, to date anyway.

"But I've definitely got a degree of expressive aphasia. I will speak the wrong word. It's sort of like a Freudian slip, only you know it isn't a Freudian slip. I was typing a letter to somebody about three or four months ago and I wrote "aggravate" and had meant "anticipate." And it was not a slip. I can't prove it in court, again, but it feels different. The wrong word comes out. It's relatively mild, but it's definite.

"Not only the voice goes but the muscles--my lips are not working as well. So I can't pronounce words as precisely as I might like," he said.

On the telephone Peck's enunciation is clear, his voice resonant, he said, because the telephone masks how damaged the vocal cords are.

Is he sensitive to heat and cold still?

"I'm starting to have peripheral neuropathy (sensory loss rather than just motor loss). My neurologist says, well, that's because you used to drink too much. Whether it's that or whether it is my Parkinson's I don't know." He does not drink at all now, but continues to be a heavy smoker.

"My drinking reached an absolute peak in the dark period," he said, "before I was diagnosed. The reason for it was that I had the shakes, the tremor, inside me. Among these other things I just felt very shaky inside me and drinking was magical relief for that. My brother and I were always heavy drinkers."

But, related to the pleasant state he entered three years ago, he said, alcohol wasn't doing much for him any more in terms of relaxation, and he had no trouble stopping. "Much less than I thought I would," he said.

"Before, I drank to calm down. What I miss now is just simply the taste. So I'm drinking nothing now except, occasionally, a sip of Communion wine--because of the Eucharist, which is very meaningful to me, not for the wine."

One loss of brain function that particularly disturbs him, he said, is that he has lost his sense of time--not only how long ago things might have happened, but how long he has been talking. "The only time my Parkinson's embarrasses me," he said, "is when I'm suddenly aware that I've talked too much. I ask people to tell me, to interrupt me. Friends will do that."

Does it appear to him there is something of an epidemic or upswing in Parkinson's disease? If so, what might cause such a thing?

"I've wondered about that very question," he said. "It's not outside the realm "he said. "It's not outside the of feasibility in medicine for a previously very late-in-life disease to suddenly start flourishing in younger people. That raises a fascinating question, though, which is the question of aging and death and to what extent doctors can beat aging and death. One of my little wonderings is 'Gee, I wonder if this might have something to do with the body almost getting back at the capacity of modern medicine to keep it alive longer than it should.'"

When asked if he was afraid of death, Peck replied, "Less than I used to be, but yes, still afraid." He admitted he was critical of people who won't face the fact that they are dying until the absolute end. "Terrified they are, and still in denial, even intelligent people. The power of denial among people dying is unbelievable. I mean literally--a brilliant person, a previously introspective person, the body now down to a skeleton, but with a bloated belly, obviously dying and still just not dealing with it."

He's concerned about denial because it tends to make difficulties for those who would otherwise willingly or lovingly support the ailing person. He spoke of one woman who by her denial "in the end had driven away all of her friends. If I'm dying I'm going to want to talk about it, I'm going to grab the milkman, anybody. So that partly I can deal with my fears by talking about it.

"I also used to lecture people, part of my missionary work," he said. He was on the lecture circuit for almost a quarter century. "Parkinson's, in part, caused me to quit the lecture circuit, I think in 1995," he said. "I'd planned to stop a year later, but I just said, 'Oh, Christ. I quit.'"

In those lectures he would sometimes pose the question of whether maturely religious people become scared when they're dying. And he would tell his audience, "No matter how religious you are, death is going into the unknown. And we are programmed, thank God, to be scared of going into the unknown. It's smart to be scared and it is human to be afraid of dying. So don't any of you for a minute think that if you're scared of dying that it is necessarily a sign of your spiritual immaturity."

Peck said that after his talks he would have people coming to him in tears to thank him, saying, "I just considered I must be a real primitive spiritually because I'm in fear of dying."

But in facing death, in facing the dying, what then happens to the personal disappointments carried through to the end? Is there a settling, a cleansing, a closing? Was he reconciled with his father? And what about the books, the life's work?

Perhaps one answer is in the fact that his first book was dedicated to his parents, "Elizabeth and David, whose discipline and love gave me the eyes to see grace."

Musing, he said, "I wish some of my other books had been a little more popular and maybe the Road Less Traveled a little less, That's what comes to mind in terms of regret."

His personal favorite book is, In Search of Stones (1995), though he admits, "I offended a lot of people because it talked about my having been unfaithful. Enough people said, 'Well, it was such a sad book.' Yet I deliberately didn't want to think of that. You know they either put you on a pedestal or they want to tear you down totally. And you can't sort of be ordinary."

After the success of The Road Less Traveled, people had extremely high expectations for his second book. But in People of the Lie he used the opportunity to talk about evil. "And people don't want to talk about evil," he said. Nonetheless, he has returned to the topic in what could be his final book. It's on exorcism.

Further, People of the Lie wasn't exactly a publishing laggard. It eventually sold more than 2 million copies. Only compared to Road was it less than rip-roaringly successful.

The conversation Shifted again. "Everybody has got Parkinson's," he said.

Would he ever consider stem-cell implant, cell tissue implanted into the brain? From the little he's read, no. Its success rate, he said, is too limited. But closer to the time when he might have to consider it, he might take another look. Currently he takes two medicines. L-dopa, and Miropex, a dopamine "biagonist" that tends to squeeze a little more dopamine out of the brain cells--if there's some remaining. Plus it tends to potentiate the L-dopa medication.

But L-dopa is only good for about five to eight years, he said, and then there's a downturn.

He has some very good moments, he said. "Moments of delight when my voice is somewhat functional." And many moments of constant struggle. Reading is difficult after the first two pages. "I lose track of the line. I'll find myself either reading it over or reading the previous line or going two lines down. The little tiny muscles that control your eye are activated by nerves. Difficulty with reading is another symptom."

Not surprisingly, he said, "I'll be bloody happy when I'm finished with this present book I'm writing," he said.

Can't drive, trouble reading, trouble sleeping, "trouble everything, but still writing. Typing two fingers, slower than I would like, but faster than a real hunt-and-peck."

The book is late to his publisher. And he's made a habit in the past of meeting his deadlines. But he's on the last chapter.

He's also tidying up the paperwork around his life.

The financial trust is signed and sealed. The advance medical directives are completed.

There's finality in the directives. Extraordinary means of life support, such as a feeding tube, he can and will accept, provided he can still communicate. But once it is apparent that two-way communication has ceased, everything is to be withdrawn.

Peck the writer and psychiatrist knows there's no exorcising Parkinson's disease. Yet nothing is stopping him from communicating right up to the end, as best he can.

That first book, The Road Less Traveled opened with the line, "Life is difficult." He accepts that in new ways.

Now, at the end of the day, even those days when he might be able to make it up the stairs under his own steam, he finds the ascending chair a great temptation. And usually yields.

And as he rides up, Peck can give a wave--and still make his point. That whatever it takes--or gives:

Life is to be lived.

At a Glance

M. (for Morgan) Scott Peck was born in New York City in 1936. After Harvard he did his medical training at Case Western Reserve University and served his psychiatric residency in the U.S. Army.

He was in private practice in Connecticut when, in 1978, he wrote The Road Less Traveled. His subsequent books include People of the Lie, A World Waiting to be Born, The Different Drum, A Bed by the Window (a novel), and The Friendly Snowflake, illustrated by his son, Christopher. He and his wife, Lily, have three children. For many years the couple jointly ran their community-building Foundation for Community Encouragement.

Of his books, Peck's personal favorite is In Search of Stones: a Pilgrimage of Faith, Reason and Discovery, also illustrated by Christopher Peck.

Parkinson's disease

Parkinson's disease is a disorder of the central nervous system that affects nearly 1 million Americans, though that figure may be seriously underestimated as the disease is not contagious and does not have to be reported.

The Parkinson's Disease Foundation (www.pdf.org) reports that the disease may occur at any age, that it is uncommon in people under 30 and slightly more prevalent among men than women.

Arthur Jones is NCR editor-at-large. His e-mail address is arthurjones@comcast.net

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