Parkinson's pill shock

By admin
02 September 2009

For people with Parkinson’s disease the only effective treatment comes in the form of dopamine medication. But too much dopamine has a serious side effect: it causes impulsive behaviour such as uncontrollable shopping sprees or addictive gambling …

By Betina Louw and Marí Hudson (Health24)

No one could understand it. Almost overnight Manie Venter, then City Clerk of Johannesburg, would stop at nothing to feed a sudden and insatiable gambling habit. His family and friends watched helplessly as Manie lost his excellent reputation and squandered his money. As well as not understanding it, no one could stop him.

Only now – almost 20 years later – does his family know what was to blame. In short, his Parkinson’s medication.

The unexpected side effects of the drugs known as dopamine agonists are finally coming to light. In America there are almost daily warnings on TV aimed at increasing public awareness of the behavioural changes that can occur with overzealous dopamine doses. The victims’ sudden, impulsive behaviour is bizarre – an uncontrollable urge to gamble, shop to excess and sometimes even commit arson.

For Manie’s family, who suffered great humiliation until he died 12 years ago, this information has brought not only understanding but also great relief. They can finally understand and explain their father’s previously inexplicable behaviour.

At the peak of his career Manie, a brilliant chartered accountant, was Johannesburg’s City Clerk for eight years. He was a role model, a pillar of support for family and friends and a father to be proud of. In 1991 he was diagnosed with Parkinson’s disease. Manie was only 53 when he had to break the news to his wife and adult children, Marius, Deon and Amanda.

“He was a likeable man who was always friendly and found it easy to share with others,” his eldest son, Marius, recalls. But within a few years of his father’s diagnosis Marius would almost be wishing his father dead. If Manie’s physical decline was fast, his mental breakdown was even faster.

“Within months he started shaking,” Marius says. “He kept losing his balance and his sight deteriorated quickly. It wasn’t long before he was declared medically unfit to work and after that it seemed as if he suddenly lost his will to live.”

The family decided to buy a petrol station to help Manie feel useful. “My dad was reliable and conscientious. Working at the garage made him feel he meant something again.” Little did they know Manie had started gambling compulsively.

One day a pump attendant phoned to say “Oupa” hadn’t arrived at work. “He’d left the house hours earlier,” Marius says. “We even thought he’d been kidnapped because he had never let us down before. We phoned hospitals and morgues but there was no sign of him.” At 4 am the following Sunday Manie strolled into the house. “I’ve been gambling,” he announced.

“From that day on I never saw my father as the same man again,” Marius says. Everything fell apart. “The bank manager wanted to see us. He said our financial affairs weren’t looking good. I couldn’t understand it – the business was doing well.”

But the bank manager could see thousands of rands were being withdrawn from Manie’s personal account. All for the gambling. People began talking. “They’d stop us and we’d hear the same old things: ‘Shame, your dad looks bad. Aren’t you afraid he’ll cause an accident? He’s shaking so badly and battling to walk and see . . . looks like he wins a lot, though, because he’s over there so often. Or so we hear.’

“My father’s personality changed too. He became extremely aggressive with us and often disappeared to go gambling. I was furious with him. And my mother was at her wits’ end.”

They took him for counselling and begged him to stop. But nothing worked. Even when Manie could barely walk or see he still managed to get to casinos all over the country. “I prayed for him to die – he made life hell for my mother when he disappeared like that,” Marius recalls.

As hard as they tried the family just couldn’t make sense of this complete change of personality. Even more senseless was Manie’s clear lack of resistance against the grip of his compulsive need to gamble. He’d always been so skilful and sensible with money!

They would begin to understand only at the end of 2008 when Manie’s niece read the book The Decisive Moment: How the Brain Makes Up Its Mind by Jonah Lehrer. Lehrer writes about, among others, Ann Klinestiver, a teacher and Parkinson’s sufferer from West Virginia in America who descended into compulsive gambling after taking Requip, a dopamine agonist.

At first the medication worked miracles and she experienced a respite from her movement difficulties. But then Klinestiver discovered slot machines. She’d start gambling at 7 am and security guards would have to remove her during the early hours of the following morning. Klinestiver was gripped by the urge to gamble. Nothing could stop her – until she stopped taking the medication. She once again developed motor problems but the urge to gamble instantly disappeared.

Side effects and strange behaviour

Up to 13 per cent of people who take dopamine agonists develop a serious gambling addiction, Lehrer writes. According to Professor Jonathan Carr, head of the neurology department at Tygerberg Academic Hospital and Stellenbosch University, this behavioural change is called impulse control disorder.

In healthy people the substantia nigra, brain cells situated deep within the brain, secrete mostly dopamine, the neurotransmitter that controls voluntary movements such as stepping forward, sitting, standing and turning.

But Parkinson’s disease gradually destroys these specific dopamine-producing cells. As more cells are destroyed the dopamine levels drop even further and more symptoms become apparent. These symptoms worsen over time and to date no medication or treatment has been able to halt the process.

By the time motor symptoms such as shaking become visible, 50 to 80 per cent of the brain cells that secrete dopamine and other neurotransmitters such as serotonin are already destroyed. The condition is well on its way.

The only medications that can control the symptoms are those that normalise the dopamine levels. There are two kinds: dopamine agonists such as Requip and Pexola, which help remaining brain cells to secrete more dopamine, and medications that contain dopamine, including Carbilev, Madopar, Sinemet and Stalevo. These are called levodopas for short.

Both classes of drugs raise the level of dopamine in the brain and alleviate symptoms of Parkinson’s so the patient can function normally. Both, however, also have troubling side effects.

Dopamine is the body’s pleasure hormone; its secretion increases naturally with pleasant experiences such as being in love or receiving a desirable reward. If you win at gambling you’re easily transported to a seventh heaven of delight.

But if there could be negative consequences your brain usually tempers this chemical high with messages that tell you to slow down. In some people on dopamine medication these messages are never sent and they continue to pursue pleasure even at grave cost to themselves. These are the changes in behaviour that doctors are calling impulse control disorder (ICD).

What are the symptoms of ICD?

ICD is marked by an inability to resist an impulse or drive that can have negative consequences.

The most common ICDs that can affect patients who take too-high doses of dopamine agonists are chronic gambling, uncontrollable shopping sprees, poring over pornography, obsessively surfing the internet and compulsive overeating. Sudden outbursts of anger, kleptomania, arson and even pulling out your hair can also be symptoms.

“But the symptoms go as soon as the medication is stopped,” Professor Carr says. The key is constantly monitoring the patient. As soon as family or friends become aware of any change in the patient’s behaviour they need to bring this to the doctor’s attention so the treatment can be adjusted.

Early warning signs of Parkinson's

It’s usually associated with tremors but Parkinson’s disease can also show in other symptoms, which often appear seven to 10 years before the first motor symptoms.

Loss of smell:

“I can’t smell my roses any more.”

Change in colour perception:

“Colours look brighter than they did a year ago.”

Loss of the protective muscle paralysis that stops you hurting yourself when you dream:

“I’m full of bruises when I wake up.”

Pain, usually on one side of the body at first:

“My arm is really sore.”

Depression and/or anxiety:

“Everything’s getting too much for me. My moods change for no reason.”

Constipation:

“Suddenly I have to take something to keep me regular.”

Various studies are under way to determine if early treatment with dopamine agonists can delay the progression of the disease.

Why do people get Parkinson’s?

A study of French farmers has indicated DDT and other organochlorine pesticides could play a role but there are still many unanswered questions. An increasing bank of research indicates a genetic and therefore hereditary component: if your brother, sister, father or mother has Parkinson’s your chance of developing the disease is 17 per cent. It also seems inflammatory diseases such as rheumatoid arthritis and many trans and saturated fats in food can activate the genes involved, Professor Anthony Schapira says.

How Parkinson’s progresses

The first motor symptom is often shaky and jerky hands, followed by shakiness in the arms, legs and face.

Slow movements often lead to a shuffling gait.

Frozen facial muscles can lead to an emotionless mask-like expression.

Later the patient experiences increasing problems with balance, makes big swinging movements with his arms, legs and body, and struggles with movements such as turning over in bed.

Due to a speech-articulation problem called dysarthria, the tongue and other muscles associated with speech become uncoordinated. The patient struggles to form words properly and speak clearly. Speech becomes increasingly mumbling.

Dysphagia – the patient struggles to swallow.

Delaying the disease

Research has found certain proactive steps can delay the progress of Parkinson’s.

A healthy eating plan that includes at least five portions of fruit and vegetables a day, and limits saturated animal fats and trans fats (found in pies, store-bought biscuits and cakes).

Exercising at least three times a week can improve motor function and protect remaining brain cells from fast decay. An insightful new study at Cleveland Clinic in Ohio shows good results from tandem cycling. A single 40-minute tandem cycling session with a healthy partner in front can improve a Parkinson’s sufferer’s motor function by 35 per cent and improve brain activity just as much as treatment with dopamine medication.

Treatment for Parkinson's

Once a patient has been diagnosed with Parkinson’s, the doctor will consider three possible treatment tactics:

Are the symptoms serious enough for treatment to begin? Parkinson’s disease itself is complex but the medication often causes undesirable side effects. In addition to jerky movements the disease is also often associated with depression, anxiety disorder, mood swings, psychoses and delirium. These are probably also direct consequences of damage to the brain cells, says Professor Anthony Schapira of the neurology department at the National University College of London and London’s National Hospital and Royal Free Hospital.

Dopamine agonists or levodopas? Both types of medication can lead to a range of side effects. They can affect the blood pressure and heart as well as stimulate underlying psychoses, paranoia and delusions. Levodopas have to be prescribed in ever-greater doses to maintain the desired effect. This can also lead to jerky movements as a result of resistance to the medication; Michael J Fox’s movements as seen on an Oprah show earlier this year are a typical example. These drugs, however, rarely lead to impulse control disorder (ICD). Dopamine agonists have the above-mentioned negative effects to a lesser extent and remain good treatments for attendant depression – but they can lead to ICD.

Is deep-brain stimulation (DBS) an option? This surgical procedure is the only other possible treatment. The operation is performed by only a few neurosurgeons in South Africa and involves implanting electrodes in the brain to constantly stimulate the surviving dopamine-producing cells. For some patients under the age of 60 DBS offers the same measure of relief from symptoms as medication but without the side effects. DBS is not effective after all dopamine-producing cells have died.

Michael J Fox: smiling through the struggle

Hollywood actor and American sitcom star Michael J Fox is probably one of the world’s most famous Parkinson’s disease sufferers. He was 30 when diagnosed and has had several DBS procedures. He takes levodopas because American doctors prefer them to dopamine agonists (which is more popular in Europe). Fox’s positive outlook is inspiring and astonishing, precisely because Parkinson’s and depression so often go hand in hand. His new book, Always Looking Up: The Adventures of an Incurable Optimist, was published earlier this year.

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