Warwick Roger on the realities of life with Parkinson's

by Warwick Roger / 24 August, 2018
The cover image from the original North & South story.

The cover image from the original North & South story.

In 1999, journalist Warwick Roger wrote about being diagnosed with Parkinson's, his battle with depression afterward and his advice for other sufferers of the disease. Here's his story.  

In my family we have a little ritual. Most weekday mornings I take the children to school on my way to work, but first we call at the Devonport Deli in Victoria Road where Alex and Rosie have hot chocolates and I have an industrial strength flat white to start my heart. The children call this "going to a cafe" and although to some of you beyond the Bombay hills it may be an insufferably middle class Auckland thing to do, I make no apologies for it; it's a pleasant way to start the day, to find out, as we chat, what's going on in the children's school lives, a time to explain to them what I'll do that day to make a living. It's one of the high points of my day and something I enjoy for its own sake, but it's also an important measurement to tell me where I'm likely to be within myself over the next 12 hours or so.

The Korean couple who have run the Deli for the past couple of years know precisely how strong I like my coffee, and I know that it will take one and a bit spoonsful of sugar to get it just right. I know too that the stirring of that sugar into my coffee will give me a good idea of what sort of day I'm going to have.

If it is early in the week, and if I am rested, I will have just a little trouble stirring my coffee in an anti-clockwise direction with my right hand. I will be able to get a reasonable rhythm going. Should you, on one of these good days, require a cheque from me I will be able to sign my name with a flourish. At work I will be able to take notes like Woodward and Bernstein and type like I did 20 years ago on a clunking Imperial 66 at the Auckland Star.

But if I am tired, if I haven't slept well, if it's Thursday or Friday — or sometimes for no discernible reason whatsoever — my right hand will simply not do what my brain tells it to do, the spoon will stall in the cup, no amount of willing it to move will get it going again and I will have to switch to using my left hand.

On these mornings I will usually have cut my face while shaving. I will have cleaned my teeth laboriously. I'll have been frustrated buttoning my shirt. Later in the day, if I have to put my signature to anything, I will have difficulty getting it onto paper, and when at last I do, it will appear in a tiny child-like script. If that day I need to take notes I know the process will seemingly take forever and that I will be better to use a pencil (which slides more easily over the paper) than a ballpoint pen which tends to stick. For interviews, I who was once a good note-taker, will have to resort to the tape recorder. I know that that day my typing will be embarrassingly bad, with every second word requiring revision, and that by early in the afternoon I shan't be able to type at all and that a great tiredness will descend on me and that as a productive worker I shall be virtually worthless after 2.30pm and that the best thing I can do is to slink home to nap. I, the one-time great goal-setter who could work for eight and more hours without a break, will have achieved very little and will end the day with nothing but an overwhelming feeling of frustration and self-loathing. It's been this way for three years now.

I first knew something was wrong about five years ago. Oddly, it came about through my passion for cricket.

Cricket had always been my first sporting love and when we moved to Devonport in 1987 I took it up again. Although I was in my forties, I eventually found myself playing in the one day 2 grade with a group of youths half my age. My batting had always been problematical but my bowling wasn't bad and one glorious Saturday, bowling wicket to wicket at the Vauxhall Road rugby ground, I took 4/16 off eight overs against Indian Sports. I thought I was Sir Richard Hadlee, although an elderly version of Gavin Larsen might have been a more accurate description.

But come the next summer and I couldn't bowl to save myself. The ball would not go where I wanted it, I was continually bowling leg-side wides, full tosses when I didn't mean to and, highly embarrassingly, deliveries that were so short-pitched that they bounced twice. In one winter I had gone from being a useful bowler to being a laughing stock. In the field my return throws to the wicketkeeper became sadly inaccurate.

The problem was that while my brain was telling my hand when exactly to release the ball, the message was getting through too slowly for any degree of accuracy to be the result. It was as if the electrical circuits controlling the fine movements of my right arm and right hand had been, if not burned out, seriously reduced in voltage.

It was at the time when I had got myself involved in a notorious defamation trial and was under a fair amount of stress that I noticed — and my secretary began to complain — that my handwriting was becoming increasingly small and almost impossible to read. At first I didn't pay much attention. My hands were shaking quite a bit at that time from the strain of the trial and I considered myself lucky to be able to write at all, even if it was only in a tiny crabbed hand. But the trial ended, the plaintiff and the lawyers got paid, I left the stresses of my editor's job ... and my handwriting didn't recover but instead got worse.

It was around this time that I undertook a Sunday tramp up the Pararaha Valley in the Waitakere Ranges west of Auckland. It was an exhausting slog up the stream bed through the bush, but the day's outing ended with us heading back down Lone Kauri Road to the carpark at Karekare. It was then that my friend Sarah asked me why I wasn't swinging my right arm. It wasn't something I'd been aware of but, sure enough, I wasn't swinging the arm, although I couldn't tell her why not except to say that it just seemed to be dead.

For the best part of the preceding year I had been having trouble getting up from a low chair or from a couch. I put my difficulty down to a combination of middle-aged weight gain and stomach muscles that had lost some of their strength. That summer I had taken some of my long service leave from work and had set out to lose weight and regain my strength. I ran each morning to the Devonport gym, worked out on the rowing machines and with weights, and ran home where I finished up with a session of sit-ups on the deck. I did this for the best part of three months — and nothing happened.

Well, that's not entirely true. I did improve my upper body strength, but I still couldn't get up easily off the couch. The only way I could get up was to hook one leg underneath it for better leverage, but even so it was a struggle. It was the same with getting out of bed. It was the old familiar problem: the brain said "get up" but the body wouldn't respond. I would learn later that this phenomenon is known as "starting hesitancy".

Back at work at the end of that summer I began researching a piece for Metro magazine on the fortunes of Ceramco, the onetime darling of the sharemarket which had latterly fallen on hard times, and was setting up an interview with Josephine Grierson, the dissident Ceramco director. I mentioned to her that I'd like to tape our interview, not letting on why, and I went into something of a panic when she said that she hated tape recorders and that I must take notes.

We met at Carpe Diem in Devonport where Josephine sounded off at high speed and I, holding up my notebook so she couldn't see my plight, made marks on the pages. Later I sat in my car scouring my memory of the interview and laboriously making longhand notes of what I remembered had been said. I knew that day that if I was to continue making my living from journalism then I needed help.

But I had a huge fear of what might be wrong with me. I'd just read in The Spectator of the plight of a British MP, a regular contributor to that magazine, who had suddenly discovered that he'd forgotten how to spell the most simple words and who was constantly falling off his bicycle. A brain tumour was diagnosed and within weeks the unfortunate MP was dead. I too was having trouble with words, although not so much with their spelling. I was having difficulty separating them when I was typing. Thus I would habitually write "he stoppe dreading" and "a lovelyd ay". Was this just a thickening of the tips of the typing fingers, old age (I was 48), or something worse? Was the feeling I got walking along a corridor that I wa sdrifting (there, I'm making the same error now) away to the right my imagination or the manifestation of a brain tumour?

Had I had a stroke?

Did I have Parkinson's disease? I'd just read (do I read too much for my own good?) a piece in Esquire in which the author, acting on a hunch and his general knowledge, had diagnosed his father with that affliction and had had his suspicions confirmed by doctors. I was showing all the same signs.

I made an appointment with my GP. He was sympathetic but frankly seemed to be at a loss as to what to do. He asked me to describe my symptoms. He got me to close my eyes and asked me to try to bring my hands together and then my fingers, index finger to index finger, middle finger to middle finger and so on. I nearly succeeded but my two ring fingers didn't "connect" perfectly. They still don't when I try the exercise now.

John then explained that although he didn't think there was anything major wrong with me, he was a GP, not a neurologist, and that it might be best that he referred me to a specialist. It would be better for everyone's peace of mind, and so one morning in May 1996 I found myself, full of dread, in the Remuera waiting room of William Eduardo Wallis, neurologist.

Harvard-educated Bill Wallis is a tall, spare and laconic American in his early sixties who reminds me uncannily of the movie actor James Stewart. He could easily fit into any one of the wartime action roles played by Stewart, and indeed he served three years in the United States Air Force at a time when the Americans were fighting in Vietnam. These days he splits his time between Auckland Hospital, lecturing at the Auckland School of Medicine and his private practice.

At first we just chatted. He studied me keenly, but took no notes. I would later surmise that he was checking to see if I had the fixed stare that is characteristic of people with Parkinson's disease.

He took my blood pressure standing and lying, tapped my knees with a rubber dongy-knocker to see if they jumped. They jumped. He got me to rotate my wrists and move my hands to their fullest extent. He sort of arm-wrestled me and had a look into my eyes. He stood me up and grabbed me from behind. He told me to walk down his driveway to the gate and back, observing that my right arm didn't swing. The whole process took about half an hour.

Then he sat me down and told me what I already knew. I had Parkinson's disease. Later he would write to my GP: "Thank you for the opportunity of seeing our patient again [I had previously been to see him about migraines] ... he now has a new neurological problem. This consists of increasing slowness and loss of dexterity. This is mostly confined to the right arm. It has worsened over about two years. He has noted micrographia [small handwriting] ...

"The neurological examination shows preservation of his higher functions. His cranial nerve examination was normal except for a slightly fixed facial expression. Motor examination demonstrated that he did not swing his right arm when he walked. He had a moderate disturbance of fine alternating movements in the right hand. There was cogwheel rigidity in both arms. His postural reflexes were slightly impaired. The rest of the motor examination was unremarkable. Today I could see no tremor but one is sure that it is present intermittently. The deep tendon reflexes were 1+ and equal. There were no abnormal reflexes. Sensation was normal.

"I am afraid that he has the earliest inroads of Parkinson's disease. When I told him this view he said that he was not surprised and had suspected the diagnosis himself. One is aware, of course, that there are other disorders which can mimic Parkinson's disease and may not respond that well to drug treatment. Let us hope that this is not the case with Mr Roger. In any case, he has sufficient inability to warrant treatment. I have started him on Sinemet CR and have told him about the side-effects. If he fails to respond to Sinemet we may wish to do a brain scan. In any case, I shall keep you informed."

I think at this point you're supposed to go into a deep depression, but I didn't, at least no more than usual. I got into my car and drove slowly back to the office, wondering as I  headed down Victoria Avenue whether this crisp autumn morning was one of the days — like school leaving day, wedding day, job changing day, child's birth day, divorce day — on which my life would change forever.

It didn't really feel that way. It didn't feel like anything. Maybe I was numbed by the news, but I prefer to think that I was just being fatalistic, believing as I do that a certain number of bad things are bound to happen to you in your life, hopefully not too many, and there's not a damned thing you can do about them, so it's sensible to try to make the best of them. I was reasonably fit, my heart was still lionlike, I'd written a book I was proud of, I had four great kids, a loving wife, sufficient friends, a job, money in the bank. The sun would, no doubt, still come up tomorrow. Bill Wallis had said that no one had ever died of Parkinson's. You die with it.

And yet ... wasn't I a bit young to have a progressively debilitating disease? Wasn't this another of God's cruel jokes, the latest of rather too many he'd played on me and my family down the years? What would become of me? That was the big question ... and a silly one too when you think about it, because no one knows what will become of them.

Back in the office I told a few people. They were solicitous, kind and, I have to say, for the most part ignorant about just what Parkinson's is and how it affects people who have it. Why weren't my hands shaking? they asked. Would I be able to go on working? What about my beloved cricket?

I would come to blame Muhammad Ali for this. Although it is hardly the great ex-champion's fault, shuffling, mumbling and his arm twitching uncontrollably, he has come to represent the public face of Parkinson's "sufferers", if that is the term you want to use. Indeed, within a few months I would be watching poor Muhammad light the Atlanta Olympic flame and my eyes would fill with tears, probably, if the truth be known, tears of self-pity. But that would be in the future. In the meantime I was determined that I wouldn't be represented by Ali.

I find it very difficult to write about the reaction of my wife to my news. Robyn is relentlessly positive about everything, whereas I have become more negative over the years. We're fundamentally very different, and I am older. Her attitude to what I was now telling her was immediate ... and relentlessly positive: this was no big deal, we'll find out all we can about it and then we'll take a mental cold shower and beat it by sheer willpower. I took the view that it might not be that easy. Thus we had, right from the start, a clash of ideas, a difference of approach. And I think we still do. I hope I am not being unfair to her when I write this way. We just see things differently. It's probably inevitable.

It was in that confused state that we went to Port Douglas on holiday and I began taking the medication.

What we know as Parkinson's disease was first noted in Roman times, but the first authoritative medical description was by the English physician Dr James Parkinson in an 1817 paper describing many features of the condition (incidentally, "condition" is a word I much prefer to "disease" or "complaint" or any other description) then known as "shaking palsy".

It is caused by the degeneration of a group of nerves in an area called the substantia nigra located in the base of the brain. These nerves produce a chemical called dopamine, and it is the lack of dopamine — and a relative excess of another substance called acetylcholine, creating an imbalance between the two — that produces the symptoms of Parkinson's disease.

No one knows what causes the degeneration of the substantia nigra, although there are many theories, an increasing number of which are to do with genetic causes. A person with Parkinson's disease has a slightly increased chance of another family member having the condition.

A further possible cause could be an infection of some sort. In the 1920s there were epidemics of a form of flu called encephalitis. Some of the people who recovered from it developed a condition that looked very like Parkinson's disease.

Some scientists think that there may be some substance in the environment that might cause Parkinson's, but no particular substance has ever been identified. Many people have a theory for the cause of Parkinson's based on their own experiences, the most popular of which involve an excess of stress, and I'll go along with that for the reason that my own observations suggest that Parkinson's seems to pick on former athletes. Muhammad All is the most obvious example (although Bill Wallis has told me he believes Ali's trouble is pugilista dementia or plain old-fashioned "punch-drunkenness"). Then there is John Walker. And there are other former athletes I know who, like I did with my own competitive middle distance and marathon running from my teens through until I was 40ish, all pushed their physical limits when they were in their athletic primes, and who now in their late-40s through to their 60s, have Parkinson's.

In any event and whatever its cause, Parkinson's disease is quite common. Over the whole population between one and two in 1000 people have the condition. It becomes more common in older age groups, however, with perhaps one per cent of people over 60 having it.

About three-quarters of them will have developed a tremor at the onset of their illness, while the remainder will never have tremor. The important feature of the tremor is that it tends to occur when the limb is relaxed and tends to disappear while the person is performing tasks such as writing or drinking from a cup. For this reason the tremor isn't particularly disabling, although it is embarrassing. There will, however, be stiffness and increasing rigidity. In my case this is most noticeable when I creak down the stairs in the morning and when my right arm gets awfully tired and rigid when I am driving. There is slowness of movement — known as bradykinesia —which can affect various parts of the body. One of its early signs is a flat or expressionless face which can give the person the appearance of lacking emotion, not being interested in other people, or looking serious and not smiling. I suspect that this gives a lot of people the wrong impression of me. It is bradykinesia which makes it difficult to clean my teeth, shave, tie a shoelace, unbutton a shirt, pull on my socks, operate the computer mouse, type after midday and write my own name in longhand.

There can be strange skin sensations and odd electric-feeling tingling sensations in the limbs. These are particularly annoying when one is trying to get to sleep at night; there are many times when I lay awake tingling until well after midnight.

And there are the two difficult ones — tiredness and depression. It is hard to explain, especially to one's colleagues, just how wretchedly, achingly tired I feel, when I've put in only a brief appearance at the office. How can a man who seems to work so little be so exhausted that he needs to take an afternoon nap?

How to explain to my super-energetic wife (who worries about me putting on weight) that I, who have run probably 20 marathons, these days come back exhausted from taking the dog for a morning walk around North Head?

How to explain to a nine-year-old daughter who wants me to play backyard cricket with her that even if I had the energy I can't get the ball to go where it is intended?

How to get these people to believe that I'm not just lazy?

Approximately a third of people with Parkinson's disease develop depression at some time during their illness, a much higher proportion than, for instance, people with heart disease. The increase in depression in Parkinson's disease is thought to be related to chemical changes in the brain similar to the chemical changes that produce the disease itself. Result: sleep disturbances, the lack of energy I've already noted, a feeling of hopelessness or lack of optimism, poor concentration or forgetfulness, a change in appetite and feelings of sadness.

All of this swept over me as I lay on my bed in the tropical evening half-light in Port Douglas in far North Queensland in the week following Bill Wallis' diagnosis. Over the previous few days I'd been fighting the depression by telling myself that I was feeling remarkably well for a man who had just been told he had something that could eventually put him in a wheelchair, but now, desperately tired after getting up at 4.30am to catch the flight to Cairns, with time to reflect, for only the second time in my life I felt myself beginning to fall apart.

I wasn't sobbing so much for myself as for my girls, Alex who was then six, and Rosie, three. I was sobbing because of my fear for what might become of them if the disease was to progress rapidly — and who is to know how quickly, or how slowly, it will progress, we only know that it will — and I might not be in a fit state to look after them and provide for them. Would I be able to run with my children? Would we be going on the long-promised "someday-when-my-ship-comes-in" trip to Disneyland with me in a wheelchair? How would I be when the children graduate from university?

I didn't have much to go on. I didn't really know anyone with Parkinson's, although I had had one brief acquaintance with it which now came back to me with terrifying clarity. In the autumn of 1991 I had travelled to South Africa to interview for my book, Old Heroes, the survivors of the 1956 Springbok team which had toured New Zealand. One bright Thursday afternoon in Cape Town I found myself in the vast and sumptuous office of one of the republic's richest men, Jan Pickard, who had been a lock in the 1956 Springboks.

Pickard, who I remembered as a raffish, romantic, figure in his heyday, could only be described as a wreck of a man. He walked with a slight stagger, his hands shook, he was vague and his voice was barely audible. The other day, to refresh my memory, I played again the tape of our interview and I could hardly make out a word he said. As I confronted my future in Port Douglas the spectre of Jan Pickard seemed to hover above me.

In Port Douglas I started taking the pills. Controlled release Sinemet (and another, similar-acting drug named Madopar), which Bill Wallis had prescribed for me, is a way of delivering levodopa (which is converted to dopamine in the body) to the brain where it replaces the deficient dopamine.

The effect of this dopamine replacement is not long-lasting and it does not treat the underlying cause(s) of Parkinson's and so, while many people find it very effective, in the long term its effectiveness may decrease, and it is for this reason that some doctors delay treatment with levadopa to keep it in reserve, as it were.

There are three other forms of drug treatments for Parkinson's disease:

Dopamine agonists — the chief of which are Parlodel, Permax, Dosinex, Apomine, Symmetrel and Dopergin — work by stimulating parts of the brain in a way that dopamine normally does. Their duration of action is longer than levodopa and they have similar side effects. Dopamine agonists are often added to levodopa therapy as the levodopa effect begins to wear off and an "on-off" phenomenon develops.

Anticholinergics — Cogentin, Disipal, Kemadrin — decrease the amount of acetylcholine so as to restore the balance with dopamine. Anticholinergics may be effective in treating tremor which is unresponsive to other medications and are also used to enhance the effects of levodopa.

Monomine oxidase B inhibitors — usually Eldepryl — are also used to prevent the breakdown of dopamine in the brain. They are used with levodopa to prolong the effect of each dose.

In Port Douglas I went through a trial and error routine of getting used to Sinemet and getting the dosage right. At first it made me a bit nauseous and light-headed because it also drops your blood pressure, but at the end of the 10-day break I'd worked out a dose that suited me: one and a half 200mg tablets in the morning and another one in the middle of the day. As I settled into that regime the only side effect I was getting (and still get) is that the big toe on my right foot won't keep still when the medication is working at maximum effectiveness in my body. You can't imagine how pleased I was that one of the other side effects of levodopa mentioned in the literature did not occur: my urine, sweat and tears did not turn pink or red.

In Port Douglas I took the doctors' advice and ran and swam each day, setting an exercise routine I would attempt (not very successfully) to stick to back home. The advice is to get at least 20-30 minutes' aerobic exercise each day. Sleep is important too —the brain recharges its dopamine overnight — and so each night I slept the sleep of the just.

I returned to Auckland feeling much happier and two months later went back to see Bill Wallis who reported in a letter to my GP: "Warwick has had a splendid response to Sinemet. About the only residual feature of the disorder is that he still does not swing the right arm when walking. This is of no consequence. His dexterity is much better. His postural reflexes are intact. He has had a better than average response to drug treatment confirming that he has the proper form of ideopathic Parkinson's disease. I believe that one can be optimistic about his outlook..."

I wanted to be optimistic too, but during the first winter, when it seemed to rain from leaden skies every 20 minutes, I soon found the going pretty hard and the depression I'd first felt in Port Douglas crowded in on me again.

The worst times were when I was out of town on assignment for North & South. I remember particularly a bleak mid-winter week I spent in Taranaki researching the west coast leases story, when each day I had to battle through the afternoon fatigue miles from my lonely base in a New Plymouth hotel, fearing that my speech would slur embarrassingly during an interview, worrying about being so tired that I'd drive off a back country road and drown in a ditch. And it was all so depressing because this was what I'd chosen to do when I left the Metro editor's job and now, increasingly, it looked as though I couldn't cope with the new job I'd taken on.

I struggled through the year, but that December — at the end of 1996 — I ended up in the sunny Takapuna consulting room of Dr Louise Armstrong, psychiatrist. We talked for an hour, during which time she observed me closely, handing over the packet of tissues when it all became too much for me. Later she would describe me as miserable, morose and negative. She wrote: "He seemed to have slightly restricted facial expression and to be near tears at times, but had a full range of affect with ability to smile at times, although weakly. His mood seemed flattened and depressed. He experiences tiredness and fatigue and a rather flat, blase feeling. He has decreased motivation and application and a loss of enjoyment of his work."

It was Dr Armstrong's opinion that I was suffering from a major depression that had been developing over a few years and which was now heightened by the state of my physical health, and so it was on to the paroxetine, 20mg of it a day, for me.

And what, you may ask, has this got to do with Parkinson's disease?

Well everything really. It was the Parkinson's that was making me so damned tired. Making me dull and slow in the afternoons. Making me ache. Slurring my speech, making my big toe curl, making me walk a bit silly. Making me sometimes run out of breath before I reached the end of the sentence. It was Parkinson's that was messing up my brain. That was what was making me so bloody depressed.

Since I've gone public about my condition, people who know me ask how I am and when I stop to think about it I have to conclude that I'm not too bad really. All the bad things I've described above are true enough, but I'm hardly an invalid. I've got a long way to go yet before they'll get me onto a mobility scooter. I'm not finished yet.

When I think about it I'd say that, three years on, I'm a little worse overall, but only a little. Bill Wallis confirmed this view when I went back to see him for a check-up recently. "He is doing very well," he wrote. "His motor function is essentially unchanged from the last examination two years ago. His functional state is excellent. He is having no obvious side effects from a relatively small dose of Sinemet CR ... He notes, however, that there is a marked waning of the desired effect [of the drug] as the afternoon proceeds."

"It could be," Wallis suggested, "that fine tuning of his levodopa dose could produce a more stable response throughout the day. The simplest option would be to pre-empt the afternoon decline by taking his second Sinemet dose earlier. The second would be to increase the second dose slightly. The third would be to add the conventional form of levodopa used strategically to boost the effect of the longer-acting controlled release preparation."

Wishing to keep the increased dosage of levodopa "in reserve" for as long as I can in the hope of preserving its effectiveness, I have opted for the first suggestion. I take the second dose of Sinemet at 11 am and this seems to get me through in better shape until around 2.30pm.

But why am I telling you this? Why am I committing what probably amounts to employment suicide?

I suspect that already my having Parkinson's may have contributed to my not getting one job. A few years ago I put my name forward when the New Zealand Herald was looking for a new editor. I was interviewed by the chief executive and the chairman of the board of Wilson & Horton, but it was probably all a waste of everyone's time for on the morning of the interview the Herald had cunningly published a story about my condition on its front page.

I am telling you this because I am a reporter. Reporters go where most people never get to go — into the All Blacks' dressing room, into the office of the Prime Minister — and report back their discoveries to their readers, listeners and viewers. For the last three or four years I've been on a voyage of discovery into a neurological condition, a voyage that a lot of people are going to have to go on themselves one day. I'm just telling you what I found and how it affected me. You can take it or leave it as you wish. Either way, I shan't fret.

I am also telling you this because I think I might be able to help others who are experiencing the same seemingly vague symptoms I had — particularly the loss of ability to write — and who are living with the same fears. My advice is if you think there's something wrong, get along to your doctor and have it checked out. Remember that Parkinson's isn't just a condition of older people. Sure, Johnny Cash is getting on a bit these days but John Walker isn't old. Nor is the actor Michael J. Fox.

I'm off the anti-depressive paroxetine now, although I expect that that might have more to do with the fact that as I am writing this it is still summer, I'm swimming most days, the South African cricket team is touring New Zealand and next Saturday is the first day of the first test and I'll be at Eden Park.

Sure, I still get depressed about having Parkinson's (or do I get depressed because I have it?). I worry the most about just what exactly "progressive" as in "progressive neurological condition" means. I know there is a honeymoon period, a time when the drugs work well and the progression is all but imperceptible, and I know that that's where I am today. But how long can my good luck hold?

I know that should it not hold, should things go horribly wrong, there are these, shall we say, "procedures" we read about in the Sunday papers, what I call the "hole in the head stuff', the operations for people with advanced cases. Some of these, such as thalamotomy and pallidotomy, are aimed at treating the over-active parts of the brain which cause tremors. These areas are located by x-ray guidance and then a needle is inserted to cauterise the excess activity.

Even newer treatments involve leaving a fine electrode in these areas and confusing or stunning that part of the brain with an electrical current generated by a small device similar to a heart pacemaker.

In several countries scientists are experimenting with transplanting brain tissues (where, I wonder, do they get them from?) into people with Parkinson's disease. This tissue is similar to substantia nigra tissue and produces dopamine which can replace or supplement the dopamine medications.

I must say that none of these procedures has instant and overwhelming appeal to me. I don't fancy having holes bored into my skull and electrodes probing around in my brain. But I guess that's because I'm doing well. Maybe if "progression" becomes "rapid progression"...

I know too that there is a great deal of research being done into Parkinson's and that the researchers are fairly confident of finding a cure. I'm laying odds that they'll come up with something in my lifetime. Science is funny like that. It seems to be that when there are a lot of people directly affected by something, the human race is very good at finding an answer. When wars were in vogue and a lot of people were wounded, we were suddenly able to produce excellent antibiotics. When the baby boomers were at their most sexually active — presto! The pill. And now the boomers are getting a bit past it, there's Viagra.

I reckon that as more of us begin to pass into middle age and begin to exhibit the first signs of Parkinson's disease there'll be a lot more research done into it — and a cure will be found.

Let's be perfectly honest. Having Parkinson's disease does restrict me a little, not so much physically as socially. I'm probably not as outgoing as I should be; certainly not as sociable as my wife would like me to be. I do get embarrassed by what I imagine is my fixed stare and my soft and sometimes slurred speech (60-90 per cent of people with Parkinson's experience speech problems) and for that reason avoid some social situations. I am happier with old friends who know me.

I am told that there are wonderful support groups for people with Parkinson's — but they're not for me, at least not yet and maybe never. I can't think of anything worse than a group of people with no common interests other than their affliction sitting around proving that misery loves company. I'll stick to the North Shore Cricket club as my support group.

I know that that seems arrogant and I apologise to the people I may have offended, but if I've learned one thing from the past three years it is this: Don't give up! Don't surrender! Keep on living your normal life for as long as you can and surprise yourself.

I'm still playing cricket, these days acting my age in president's grade. I still can't bat to save myself and I still can't get the ball back to the keeper with any degree of accuracy, but I throw myself around in the field and I take a lot of catches. My continuing ability to play cricket gives me a good gauge from year to year — like the stirring of my morning coffee does from day to day — of where I'm at with the Parkinson's.

You too should do what you've always done. Run. Swim. Ski. Go for long walks. Make love. Enjoy life. Parkinson's disease is a nuisance, but it's not the end of the world.

Kia kaha.

This article first appeared in the May 1999 issue of North & South.
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