The unbearable obsessions of Parkinson’s

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parkinson's lib AP (File photo) Parkinson's disease sufferers Muhammad Ali, left, and Michael J. Fox joke around on in 2002 before the start of a Senate Labor subcommittee hearing on the disease.

London - When Nikki Baudains was diagnosed with Parkinson’s, one of the few positive things that seemed to come out of it was a new burst of creativity.

While previously the closest she’d come to being an artist was face-painting children at fetes, two years ago - a few months after starting a new medication - she had a burning desire to paint. Suddenly, art dominated her life; she produced thousands of canvases - some 2,000 in the past 18 months alone - and exhibited near her home in Jersey.

Like many other Parkinson’s sufferers, Nikki’s obsessive behaviour was a side-effect of her medication.

But while hers was expressed creatively, there have been other examples of Parkinson’s patients developing more troubling behaviour, such as gambling or sex addictions. Those affected find themselves trapped in an almost impossible situation: their compulsions are caused by medication, but they can’t stop taking it because it would leave them unable to function physically.

For Nikki, 48, her obsession has come at a high cost. While she held down a job as a nursery nurse, she started spending up to 12 hours a day working on her pictures. It put her marriage under so much strain that she and Steve, 51, her husband of 18 years, recently began a trial separation.

“In many ways I’m proud of what I’ve achieved, but my painting has done a lot of damage,” says Nikki, who learned she had Parkinson’s five years ago.

“My husband didn’t understand my obsession with painting, even though he knows it’s as a result of the medication,” she says. “He just saw how tired it made me.”

Her son Thomas, 16, was, she says, “very accepting, but as I’ve been in my studio painting so much, how can it not have had an impact on him?”

“Luckily, because I work with children I could channel my need to paint into craft activities with them during the day. But I was surviving on as little as three hours sleep, sometimes getting up to paint in the night.”

Parkinson’s, which affects around 127,000 Britons, is a degenerative condition that occurs when nerve cells in the brain die, causing a lack of the chemical dopamine; this, in turn, interferes with movement and co-ordination.

While the cause is not clear it’s thought genetic and environmental factors, such as exposure to pesticides and herbicides, may play a part, although this has not been proven. The disease is incurable - the aim of treatment is to alleviate the symptoms.

There are two types of medication: “levodopa” drugs, used since the Sixties, and “dopamine agonists”, introduced 12 years ago. Both attempt to replace the missing dopamine, but the levodopa group restores it artificially, while dopamine agonists mimic its role by stimulating nerve cells.

Some people take a combination of the drugs and get the best results this way. Nikki, for example, has both.

Impulsive and compulsive behaviour is a known side-effect of both types of medication, although it’s more common with dopamine agonists. Up to 17 percent of patients develop changes in behaviour. These problems can be extensions of existing traits - someone who has always enjoyed a flutter might develop more of a gambling problem.

But as Nikki and others know to their cost, even apparently harmless obsessions can be very difficult to live with.

“A significant minority of those taking dopamine medication find they have problems with compulsive behaviour,” says Daiga Heisters, head of education for Parkinson’s UK.

“Every individual reacts differently to Parkinson’s drugs. By talking with their specialist, they can look at altering the dose or drug, and side-effects can be alleviated or even eliminated.

“It’s important doctors make their patients aware this can happen and monitor them.”

Nikki’s situation is one Liz Wolstenholme recognises. Liz, 68, from Keighley, West Yorks, can’t pass a charity shop or car-boot sale without buying something.

Diagnosed in 1994, the former policy adviser to the Department of Health was initially prescribed with a levodopa, but was moved onto dopamine agonists nearly ten years ago because her consultant had heard they might slow the rate of her decline.

While she suspects this may have been the case for her, it’s a theory not now generally accepted by doctors.

Because the changes to her shopping habits were so subtle, she’s not sure when it turned into an obsession, and it took years before she and husband Eric realised she might have a problem.

“I always liked shopping for bargains, which is why it took such a long while to realise that I wasn’t behaving as normal.”

While a bargain-hunt addiction is more socially embarrassing than financially harmful, Liz has made more damaging decisions.

Five years ago, she persuaded Eric to buy a Tenerife apartment - a disastrous move as they recently sold it for half the price.

“I got fixated on having it, and my husband wanted to keep me happy because I was ill,” she says.

Then there was the decision to build a house, suited to her changing needs, in the garden of their old home.

As a consequence they have been unable to sell their old property, and Liz says she suspects the drugs made her irrational about the new house.

“I became obsessed with having a balcony,” she says. “But it cost a lot of money, the neighbours would be happier if it wasn’t there, and at some point I won’t be able to use the stairs to get to it.”

Liz and Nikki have their medication regularly reviewed and tweaked, but while it’s not fundamentally changed Liz’s behaviour, at last there may be a breakthrough for Nikki.

A few weeks ago, her medication was changed, and she says, finally, her compulsion to paint has dissipated, she is sleeping better and is less frenetic, though she is concerned her urge to paint has been replaced by an urge to swim every day.

But there may be another option. Research from the Institute of Psychiatry at King’s College London suggests a combination of cognitive behavioural therapy (CBT) to help modify thought patterns, a case-worker to monitor a patient’s situation closely and help them seek appropriate help, and traditional psychiatric treatment, such as antidepressants, can make a great difference.

As Professor Anthony David, who led the research, explains: “No one had tried CBT before for these issues and we felt results in this area were particularly significant in terms of improvement.

“We included antidepressants because low mood can be a trigger for these behaviours - it’s a person trying to give themselves a lift to get out of a low mood. The results are very promising.

“There’s no miracle cure, people will still need their Parkinson’s medication, but as well as benefiting their behaviour - the patients were more in control - we found when they were receiving the treatment we had devised they also felt better in terms of their Parkinson’s symptoms.”

For the immediate future, Professor David’s strategy may be Nikki’s and Liz’s best hope for a more normal life. - Daily Mail

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