The role of a lifetime: Parkinson's

October 5, 2006

There is very little spared in a documentary that follows actor Richard Moir as he faces surgery for the disease, writes Jacqui Taffel.

http://www.smh.com.au/news/science/t...e#contentSwap2

AT THE beginning of the film that records one of the most difficult years of his life, Richard Moir introduces himself. "My name is Richard and I've got Parkinson's disease. You can call me ****. **** Tremor. I'm on my way to Melbourne for an operation - deep brain stimulation. **** Tremor and the Deep Brain Stimulation."

Moir's dry sense of humour underpins the documentary, which is actually called The Bridge at Midnight Trembles, a line from a Bob Dylan song. A passionate Dylan fan, Moir came up with the title. "To me it means that in the dark times, there is a way through, even though that way gets pretty fearful," he explains by email. "Also 'trembles' has the ring of the Parkinson's tremor."

Moir was diagnosed in 1990 with the disease, which, his voiceover explains, "is a chronic degenerative condition that kills the neurotransmitters in the brain so that it can't send clear messages to the body. There is no cure".

He was 40 then, an actor who had built a solid career in film and television, including lead roles in films such as AFI award-winner 27A and Phil Noyce's Heatwave and the popular children's television series Round the Twist.

Parkinson's is devastating for anyone because the brain gradually loses control of the body. For an actor, it makes work impossible. Moir's left arm was the first to freeze, but he covered that up for a while. Then he began to have trouble speaking, unable to produce lines on cue.

His marriage, already rocky, broke up, his career was in ruins and the marathon of drugs he needed to control the condition was punishing, with injections and a complicated regime of pills. Things, as **** Tremor might say, didn't look good.

He was one of a very small number of Parkinson's sufferers eligible for deep brain stimulation, a relatively new and radical operation that implants electrodes deep into certain parts of the brain. These wires are connected to a pacemaker-like device (implanted below the collarbone in a second operation) that produces rapid electric pulses. This stimulation doesn't help brain function directly but overwhelms areas of the brain that have become overactive due to the disease.

"The whole principle of this surgery hangs on a chain reaction - it's like a negative multiplied by a negative," explains Dr Richard Peppard, Moir's neurologist. "If you can blunt down the overactivity, you can restore the pathways and circuitry towards normal."

It's an unusual treatment, he says, that had some early false starts and has only been more widely available in the last few years, as technology has improved. He estimates about

100 patients have had this procedure in Australia and though a few respond quite spectacularly, for others there is little or no change. Most, like Moir, fall somewhere in between.

It was Moir's old friend, the film-maker Esben Storm, who suggested making a documentary about the operation. "It seemed to me that was as huge a dramatic undertaking as many movies," Storm says. "So we thought, 'Well maybe we should see if we can turn this experience into some art."'

Moir found the filming helped distance himself from the gravity of his situation, and it put his professional skills to use. "I was able to play an actor playing the role of an actor who is having an operation."

Not that there's any sense of role-playing on screen. Moir's honesty and willingness to lay himself bare is as striking as his sense of humour. One particularly moving scene shows the superhuman effort it takes for him to get out of bed, pre-operation. His face becomes stuck in a ghastly muscle contraction known as dystonia; he shuffles and drools before he is able to inject the first dose of drugs. These help unfreeze his body but also cause the tics and tremors associated with Parkinson's.

Even with many years of experience as a Parkinson's specialist, Peppard was enlightened by the film. "You know these things in theory; you hear snippets of how it affects people's lives," he says. "But I still found it quite shocking to see what he's like first thing in the morning."

As well as producing and writing the documentary with Esben, Moir helped with editing. "I had to wear my producer's hat when looking at it and not allow myself to be too emotionally involved." There was only one section that had to go, he says. "I was extremely depressed and I was mumbling away and it was simply too personal."

The only other thing that doesn't appear is Moir's operation (the one shown on screen is not his). Cameraman Peter Leiss stayed with him as long as possible while the cage that looks like a medieval torture device was fitted to keep his head perfectly still on the operating table. Only a local anaesthetic was used for the five-hour procedure; Moir remained conscious so his responses could be tested as the neurosurgeon inserted the electrodes. There's no pain, as the brain has no nerves, and one of Peppard's patients recently told him he "positively enjoyed it". For most people the procedure is an ordeal.

"Only in the last hour or so did I start to freak out," Moir records in the diary he wrote in hospital - suddenly fearful that he couldn't breathe, he cried out in panic. "If Peter had been in there filming, I would never have played the wimp."

Since the operation, Moir's drug intake has reduced and the tremors and spasms have subsided. However, his speech has deteriorated badly. "That was something that did not respond very well beforehand with drugs, did not improve with the operation and has progressed as part of the disease," says Peppard, who describes Moir's overall response to the treatment as "moderate".

It certainly hasn't been a miracle cure but, 2 ½ years later, Moir is still convinced it was worth it. Nothing else has improved his quality of life as much, and he's considering having it again.

Peppard believes that repositioning one of Moir's electrodes could help, though there's no guarantee and any major operation has serious risks. He also emphasises that deep brain stimulation can help only a very small percentage of Parkinson's patients.

It's generally recommended only for those with early-onset Parkinson's (diagnosed in their 30s or 40s) in good mental and physical condition, and only for those who respond well to drug treatment but have trouble keeping their condition stable with drugs.

Even so, Peppard says, "across the nation we think there are many people still not getting it who would be suitable for it".

The Bridge at Midnight Trembles clearly shows how Moir improved but also shows the limits - there's no striding off into the sunset in perfect health.

"I'd love to have one of my best cases on it," Peppard admits, "but in a way I'm quite pleased to have this rather sober documentary that shows a difficult procedure, that you can get a modest benefit, and a lot depends on the person."

There has been significant progress in understanding Parkinson's in the past 15 years, including finding abnormal genes associated with the disease and examining how they might cause it.

Studying how the illness evolves may help to find new ways of slowing its progress, but a single massive breakthrough "cure" seems unlikely, Peppard says. "It may well come down to a whole series of slightly less sexy but important improvements over decades."

The Bridge at Midnight Trembles screens at 8.30 tonight on SBS.

4000 new cases every year

ALTHOUGH there have been no definitive national studies, the organisation Parkinson's NSW estimates between 80,000 and 100,000 people in Australia have the disease.


About 30,000 people in NSW have been diagnosed with Parkinson's. Australia-wide, more than 4000 new cases are diagnosed each year. The average age of diagnosis is 60, but 10 per cent of sufferers are under 40 and 30 per cent are of working age, under 65.

The expenses to the country in indirect health costs such as early retirement and nursing home care is estimated at $5 billion a year.

For more information call 1800 644 189 or visit www.parkinsonsnsw.org.au.

http://www.smh.com.au/news/tv-review...641381855.html

Love Minus Zero
Bob Dylan

My love she speaks like silence
Without ideals or violence
She doesn't have to say she's faithful
Yet she's true like ice like fire
People carry roses
And make promises by the hours
My love she laughs like the flowers
Valentines can't buy her

In the dime stores and bus stations
People talk of situations
Read books repeat quotations
Draw conclusions on the wall
Some speak of the future
My love she speaks softly
She knows there's no success like failure
And that failure's no success at all

The cloak and dagger dangles
Madams light the candles
In ceremonies of the horsemen
Even the pawn must hold a grudge
Statues made of matchsticks
Crumble into one another
My love winks she does not bother
She nows too much to argue or to judge

The bridge at midnight trembles
The country doctor rambles
Banker's nieces seek perfection
Expecting all the gifts that wisemen bring
The wind howls like a hammer
The night blows COLD AND rainY
My love she's like some raven
At my window with a broken wing

Carolyn -

If you ever find that the documentary will be released in the US, let us know - it sounds fascinating.

Tena -

Thanks for the words to Love minus Zero. The Joan Baez version of this had once been one of my favorites, but I had forgotten all about it in the years since; I am happy to be reminded. Somehow it always made my tensions and fears and gloom give way, at least for a few hours.

At the time we got the record, we were stone broke students (the record was a gift). I was in a major depression, with no money to pay for treatment - not that there was a lot of that available in 1971. I'm glad that Parkinson's waited, for me at least, until our financial situation was better. But I still would have trouble affording the PD medications that I take without insurance. Simply taking the premiums and putting them into the medicine bills wouldn't cover it.

Kris
(slightly OT, sorry).