/ 21 January 2000

Struggling with the shakes and freezes

David Beresford

Another Country

Stephen Hawking discovered black holes while climbing from his wheelchair into bed which, as the great man pointed out in his much- celebrated book, A Brief History of Time, is a time-consuming process. His lead is obviously a worthy one to follow, disabled people often having much time on their hands which could well be used to the greater good of mankind by some determined thinking.

So it is with high hopes of discovering the Unified Theory of Everything – the Holy Grail of science which, it is anticipated, will reconcile quantum theory with that of relativity – that I shuffle off from my study, en route to the kitchen to make a cup of tea.

Being a person of lesser concentration than Cambridge’s Lucasian professor of mathematics, I am quickly distracted by my shaking right hand. This brings to mind my proposal for a stress-o-meter, an early breakthrough in my new commitment to scientific thought.

The stress-o-meter is a small calibrated device connected to the hand of a Parkinson’s patient which is intended to record the frequency of the subject’s shakes. The shakes seemingly related to emotional excitement, this will enable lab staff (with Hawking I tend towards the theoretical end of scientific endeavour) to “map” the stress factor associated with various aspects of human activity. Such a survey is, I believe, long overdue – personal experience showing that high levels of stress occur in unexpected circumstances.

Speaking on the telephone, for example – an activity I had thought to be as automatic as direct conversation – I discover to be inherently stressful. When I inadvertently take a call on a handset (as opposed to my personal headset) I frequently have to cut the conversation short as I begin involuntarily earbashing myself. Similarly, a game of chess – which I had taken as a relaxing pastime – can be a problem, particularly when a checkmate is in prospect, the growing amplitude of the shakes threatening to scatter the combatants by way of a few heavenly biffs to the battlefield. Poker must be hell.

Arriving at my study door, I freeze and begin casting around for a piece of paper to crumple. Freezing is a symptom familiar to Parkinson’s and it always hits when I am approaching a doorway or, more accurately, a passageway from one space to another. Time otherwise wasted during these phases of immobility I have turned to productive use by developing my Theory of Doorways. This holds that all people have a subconscious reluctance (rendered overt by Parkinson’s) to pass through doors, a prejudice arising from the experience of birth and the painful lesson learnt as to what lies in wait on the other side of the uterus.

I have developed various mechanisms to break out of a freeze, involving the use of the imagination to fool the mind. An early technique was to picture myself as Michael Johnson exploding out of the blocks at the start of the 400m, or hurtling into the final bend on his way to yet another world record leaving his opponents flailing behind. But this approach has been discouraged by near-fatal collisions with smaller members of the household unaware of my transformation into a track star and doubtful looks cast in my direction when I am caught acknowledging the adulation of the crowds.

I now find that an effective way of breaking through a freeze is to grab a small object – a crumpled piece of paper, or a bunch of car keys, which will slide or roll along the floor – toss it at my feet and proceed to kick it, upon which I start shuffling forward again. Whether or not this counts as a scientific theorem, it does offer an object lesson on the need, in all fields of human endeavour, to keep one’s mind on the ball.

Dribbling my way into the kitchen I am busily shaking the kettle (involuntary) under the tap when I feel a yearning, familiar to such circumstances early in the day, to take my drugs. This in turn brings the usual troubling thoughts to mind: Who am I and, perhaps more importantly, why?

Identity crises are, of course, common to our angst-ridden times, but they are particularly compelling with Parkinson’s. The drugs I take have an almost magical effect on me. Physically I become “normal” – the shaking and freezing banished from mind and body. But they only work for about eight hours and there is a price to pay; in my particular case (side- effects vary widely) the drugs have an effect I would compare to the experience of a pianist being struck tone deaf while playing. I lose the thread of an argument or a story and become lethargic and indifferent to what is going on around me. Those close to me say I seem to undergo a personality change.

Jekyll and Hyde live on, taunting me with the question as to which one is the “real” me. The one with normality of movement, but confusion of mind? Or the shaky one, clear of mind, but frozen in passage? It is a question which threatens to become even more pertinent if current trends in the treatment of Parkinson’s gain ground. Provided the results of early research are confirmed and society can be persuaded to put aside fears of a viral catastrophe, treatment will be by way of xeno- transplants – the “seeding” of my Parkinson’s damaged brain cells with healthy cells from pigs. Then it will not be so much a question of Jekyll or Hyde, but Dave or Babe.

The kettle boils. Splashing the water, milk and sugar into the cup, it is with a renewed sense of urgency that I settle down to my cup of tea and the Unified Theory of Everything. We are going to have to hurry. There’s a hell of a lot that needs explaining.