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FRONT PAGE - WEEKEND FT: Listening to my brain
Financial Times; Mar 31, 2001
By MICHAEL HOLMAN
After suffering the debilitating effects of Parkinson's Disease,
FT journalist Michael Holman was earlier this year offered the
chance of an amazing life-changing operation, which has freed
him from most of the symptoms. Here, he describes the 11-hour
operation, during which he had to remain conscious.

I am watching from my hospital room as the sun rises over the
snow-covered Alps surrounding Grenoble. It is the first day of
the rest of my life, and I want to extract the essence of every
moment.

I feel liberated from a ghastly prison in which I have lived for
16 years. It had become almost as claustrophobic as the steel
cage within which my conscious head was screwed into place
for the 11 hours it took a team of neuro-surgeons at Grenoble's
university hospital to work what seems little short of a miracle.

It was in 1986, while I was writing a postcard on the veranda of
my beach-front hotel on the island of Mauritius, that I realised
that what had been called a "benign essential tremor" in my
right hand was really something very nasty. Not only was my
writing becoming cramped and tiny, I found it hard to complete
a sentence, as if my fingers were operated by a battery that was
fast running out of power.

A few weeks later, in August that year, not long after turning 40,
I was told I had Parkinson's Disease, a degenerative condition
of the nervous system that affects more than 120,000 people in
Britain, caused by the brain's failing capacity to make dopamine,
the chemical that helps control movement.

The discovery of levadopa in the 1960s was a breakthrough in
the treatment of a condition that cripples. But it does not halt
the progress of the disease. And as the deterioration continues
and the dosage is increased, the side effects of treatment become
crippling in themselves - notably the involuntary twisting and
squirming movements known as dyskenesia.

Sixteen years after diagnosis, daily tasks - cleaning my teeth,
buttoning my shirt, answering the phone - had become ordeals.
Dyskenesia had become more pronounced. As my legs swung
wildly, I regularly kicked unsuspecting colleagues. I began
turning down invitations for lunch, attended fewer press
conferences, and travelled increasingly rarely. Retirement from
my job as Africa editor at the Financial Times seemed imminent.

Then came the phone call that was to change my life.

Although there is a long history of brain surgery to ameliorate
the impact of Parkinson's, the benefits have been modest. The
best known is a pallidotomy, in which cells are destroyed by
laser. But, once done, there is no going back - a crucial
consideration should research into the regeneration of
dopamine-producing cells lead to a new form of treatment.

But in the late 1980s, Professors Alim-Louis Benabid and Pierre
Pollak of Grenoble's university hospital pioneered a new technique
that produced remarkable results — and is reversible. It is called
subthalamic stimulation, and involves implanting two electrodes
deep in the brain, one on the right, the other on the left.

A wire connecting the electrodes is buried just under the skin,
and linked to a pacemaker device inserted below the collarbone,
which is programmed to the patient's condition. Sending a
low-voltage current into the subthalamus has the same effect
as a dose of levadopa, but without the side effects. Nobody
could adequately explain this What mattered was that, quite
undeniably, it worked.

But why choose Grenoble, where I will be the first patient from
Britain to undergo the operation? After all, 10 years on, the
operation is now done in Oxford, Bristol, Dundee and London.
Compared with Grenoble, however, where more than 150
operations have been performed, the experience of the procedure
at these centres is modest — which is hardly surprising.

Unlike France, it is not available on the National Health Service
on the grounds that the operation ameliorates but does not cure,
a view shared by most private healthcare schemes.

Encouraged by my London specialist, Andrew Lees, I arranged
for consultations, first with Benabid and then with Pollak. I was
lucky. I discovered that only 10-15 per cent of Parkinson's
sufferers are suitable for the operations, and I was one of the
fortunate ones.

But there was a second hurdle. There was a formidable waiting
list of 200 people, some of whom had been on it for more than
three years. I would have to join it.

Every time the phone in my office rang, I could hardly bear to
pick it up as Christmas approached last year. The shakes - my
term for the tremor - were bad. Conducting a conversation would
be very demanding, and probably the call was no more than an
invitation to pre-Christmas drinks.

Then once when I answered, I heard: "This is Professor Benabid.
Could you make an operation on February 27?"

Eight weeks later I set off from London's Victoria station with my
mother and Michela Wrong, friend, companion and FT colleague.
For the third time in my life I was embarking on a journey which,
whatever the outcome, I knew would change everything.

My small-town horizons had been broadened when, as a
17-year-old, I made the journey from Gwelo in what was then
Rhodesia, to the US, to spend a year living with a family in
Klamath Falls, Oregon.

The second journey had followed a similar route, but this time
it was a landmark in my clash with white minority rule. Confined
to Gwelo as a troublesome student by the Smith government,
I was freed from "restriction" on condition that I left the country
to take up a postgraduate place at Edinburgh University.

My most recent life-changing journey began this year on:
Thursday February 15
I check into the hospital, where I am greeted by a huge bunch of
flowers from the FT. Never have the good wishes of friends and
colleagues been so welcoming, so sustaining. "When are you
going to blub?" Michela asks.

Friday 16
I must start the day without medication. I dread going without
my eight-times-a-day dose of dopamine, like a junkie missing a fix.
When the first dose of the day kicks in, I experience a wonderful
relief as my muscles relax. But dyskenesia soon follows.

Saturday 17
The day begins with a session with Pollak. I am off medication
again, and I shake and shuffle as I accompany him to a sparsely
furnished room equipped with a television monitor, a tripod and
a video camera.

I sit on a chair facing him and Michela, and go through a series
of tests that have long become familiar: I touch the tip of my
nose with my finger, raise and lower my foot as rapidly as possible,
manipulate my hands and feet.

Then come a series of questions: Do I dribble? Am I incontinent?
Do I get depressed? Has my memory deteriorated?

Monday 18
We go to meet the psychologist and after introductions and
pleasantries, formal evaluation gets under way. "Who is the
prime minister of Britain? What is today's date?" I pass with
flying colours.

This is followed by far more subtle tests. I don't enjoy the
experience. I can cope up to a point with the physical demands
of Parkinson's, but I cannot bear the thought of a deterioration
in my mental faculties.

Tuesday 19
Another round of tests, once more without medication. I have
managed to wash my hair and get dressed, and regard this as
a triumph. A young PhD student comes to my room at 915am.
He sees me shaking, and - looking at Michela - asks her if I need
a wheelchair. It is not the first time this has happened - the
assumption that physical frailty goes hand in hand with some
sort of mental infirmity, that the person who might need the
wheelchair cannot speak for himself.

Michela looks on sceptically as I struggle with seemingly simple
tasks. He wants a control, so later on Michela takes my place.
I'm delighted to see that she starts to feel some of the tension.
One of the tests involves tracing the letter "e" on a mat connected
to a monitor screen. Michela traces the letter several times — clean,
firm replicas, they appear on the screen without a trace of tremor.

"I love your 'e's," I tell her, and we both collapse in giggles.

Friday 23
The first of three operations: four holes are drilled in my head and
titanium bolts inserted. When the main operation takes place,
my head will be screwed into a frame, ensuring its immobility
while the surgeons use a robot to guide the electrodes into place.

Thursday 27
The day of my renaissance. I am wheeled into the theatre feeling
terrified, but not of the operation itself.

The day before, I had my first experience of the head cage. Before
the brain scan, my head had been screwed into the device, which
in turn was secured to the bed-like tunnel into which I was inserted.
Within minutes I was gripped by the worst pain I had ever
experienced, as my shoulder muscles cramped. I ended the 60-minute
scan exhausted and apprehensive: if the cramp came back I doubted
I would be able to endure an operation I had been warned could last
at least 12 hours.

Today, there are about 20 people attending the operation which,
at my request is being filmed by Michela and Peter Chappell,
a documentary film maker, and his soundman, Andre. Neuro-surgeons
from Portugal, Italy and the US are also present.

I have to remain conscious so I can respond when the electrodes
reach the correct part of the subthalamus. When they hit the right
spot, the tremor will stop.

The noise of the drill as the surgeon cuts an access hole in my
skull is disconcertingly loud, but there is no pain. Cauterising
the hole is painful, but almost refreshingly so. It keeps me in
touch with reality.

Best of all, the feared cramp does not materialise, thanks to the
skills of an attendant physiotherapist.

The highlight is listening to my brain as the electrodes were
plunging deep into the subthalamus. It is an ocean of sound,
a huge river in full flow, awesome and inspiring, the essence
of me but it also seems to be the sound of mankind, as close
to a religious experience as I have ever experienced.

Half-way through, the team breaks for lunch, leaving me still
screwed into my head cage, but with the physiotherapist
keeping me company. I cannot make out the doctors'
conversation, but I recognise the tone: it is like the positive
noises one hears during the interval on the first night of a play
that is going well. How long have I been in the theatre, I ask.
Six hours another six and I should be out.

Towards the end of the operation, the surgeon begins to wind
down by talking to me in French which I barely understand about
the shortcomings of Britain's agricultural policy, the merits of the
Common Agricultural Policy, and his regret at the erosion of the
traditional divide between the left and right in French politics.
How do I say "the third way" in French?

The moment comes when I am freed from the cage. I feel euphoric,
and, as the bolts are withdrawn, I make sure the camera is running.
I want to have this moment on record: "The men and women who
have imprisoned me for 11 hours have now set me free." It's corny,
I know, but it's the best I can do.

Friday 28
It is 5am, less than 12 hours after the operation ended, and I watch
the Alps take shape as the day dawns. Four hours later, I have
a farewell cup of coffee with Peter and Andre, and then decide
to surprise my mother and make the 15-minute walk to her hotel.
When I get back, I'm in deep disgrace. For the next four days I'm
confined to the hospital.

I have become a Francophone and a Europhile during my
four-week stay, but my conversion is another story. It included
a visit to Grenoble's museum of the French Resistance,
the quality of the French health service and the fact that no
one has called me Michael during my stay. It is always
"M'sieur Holman", in contrast to the spurious matey-ness
of Britain where everyone from nurses to cold-calling insurance
sellers use first names on first encounters.

I am asked how I will celebrate. Will I take a holiday? I'll certainly
go on holiday, but the celebrations began that first day, when
ordeals became ordinary. In particular, I celebrate the end of my
drug regime, which saw me taking more than 30 pills a day. It is
down to eight, but that does not give the whole picture.

I no longer take dopamine, or Comtess, a drug which enhances
my capacity to absorb dopamine and turned my urine an alarming
colour. My dyskenesia has disappeared, my joints no longer ache,
and for the first time in 10 years I am sleeping through the night.

But I am not cured. I still have Parkinson's Disease. My head still
feels tender, and I am tired, although I am told that is to be expected
as one recuperates from brain surgery. And I still have a tremor,
which I hope will be reduced if not removed when I visit Grenoble
in mid-May for fine-tuning of my pacemaker.

And while all who undergo the Grenoble operation will benefit, it
will not necessarily be to the extent I have experienced.
I am - comparatively speaking - young and fit.

I am warned by the Grenoble team about the dangers of depression.
After years of being the centre of attention — daily visits from family
members, for example — the resumption of a near-normal lifestyle can
be demanding. It does not surprise me. Parkinson's can become
a crutch: an excuse for not completing an FT leader, or an excuse
for declining a dinner one would have wanted to duck out of anyway.
I'll face that if and when it comes. In the meantime, I want to make the
operation better known, and cheaper. At Pounds 20,000 it is beyond
the reach of most of us, unless you have a generous and compassionate
employer like the FT.

But it can be cost-effective: the reduction in my medication saves
Britain's NHS Pounds 3,500 a year. Keeping me on my feet and
self-sufficient saves the social services at least Pounds 5,000 a year.
Keeping me at work gives the state another several thousand pounds
a year in tax.

"So where is the catch?" I ask a friend who rings from Edinburgh,
after I have reviewed my good fortune.

"Michael, there is no catch" he replies firmly. "At our age
(we are both in our mid-50s) we are used to passing on bad news
about friends with cancer. Yours is a good news story let's just
enjoy it."

http://timeoff.ft.com/weekend

http://globalarchive.ft.com/globalarchive/articles.html?id=010331008533&query=Michael+Holman#docAnchor010331008533

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