[Stitcher]

People think I'm drunk ... but my Parkinson's symptoms are better if I have a drink

By ANGELLA JOHNSON -
Last updated at 00:29am on 17th February 2008
http://www.dailymail.co.uk/pages/liv...=1766&ito=1490

Artist Charlotte Johnson Wahl was swimming in a local pool during a visit to New York when she noticed her right foot dragging slowly through the water. It had no power and felt, she says, like a flipper that was coming off.

Assuming this to be just a mild form of cramp, she promptly dismissed the episode.

Even when, soon afterwards, she started falling down repeatedly in the streets of Manhattan, for no apparent reason, she told herself it was probably just a problem with her balance.

That, of course, did not explain the dull aching pain she had started to feel in her legs.

But it was not until 1989, some seven years later, that Charlotte, the shy and unassuming mother of exuberant London Mayoral candidate Boris Johnson, finally accepted that falling over and feeling fatigued were probably signs of something quite seriously wrong with her health.

She arranged to see a neurologist in London who, after running a battery of tests, told her, matter-of-factly, that she had Parkinson's disease.

"The news came as a terrible shock; I was filled with ignorance and terror. It was very scary," she says.

"I had a vague idea it was something terrible that old people got and that it made them shake uncontrollably.

"The specialist was a very dour little man, who said that above all I should not read any books about it or ask anyone about it.

"'Just live your life and don't think about it,' he advised.

"His words were, frankly, unhelpful. He made it all sound so awful and frightening," says Charlotte, who found herself a new neurologist.

"But the fact is that while Parkinson's is a progressive neurological condition, affecting movements such as walking, talking and writing - in my case, also painting - it's not terminal.

"Many people, like myself, continue to live a reasonable quality of life.

"The symptoms may take years to progress to a point where they cause major problems, and when they do, they can usually be treated.

"My current doctor put me on a daily cocktail of chemical drugs that have done a remarkable job slowing down the progression.

"Until recently, I regularly walked 107 steps up to my top-floor flat in West London. I can't run or dance any more, but I still have lots of things to be thankful for."

Despite her upbeat attitude, Charlotte reluctantly had to move home recently after falling badly down a flight of those stairs on her 65th birthday.

"I had lived in the apartment for more than 30 years," she says, "but my children felt it had become a bit of a deathtrap, especially after a hip replacement a couple of years ago.

"They insisted I find somewhere with a lift and porter service, which I now have. It was a wrench but I value my independence and it was becoming increasingly hard to maintain in my old place.

"The worst thing is the fatigue. When it hits me I've got to lie down.

"I can only compare it to the exhaustion one gets after having a baby.

"During those times my brain doesn't work and I get muddled.

"Simple things, such as lifting the phone and making a call, become arduous. I was supposed to call a friend last night but I could barely dial the number.

"My right hand is particularly affected and it takes so much longer to paint."

Charlotte made her name as a professional portrait painter - among the many famous names who have commissioned or collected her work are the green guru Crispin Tickell, actress Joanna Lumley and writers Jilly Cooper and Simon Jenkins - but she is also known for her vibrant and edgy urban landscapes.

And, of course, she is famous for being the mother of Boris, the colourful Conservative politician and former magazine editor, whom she calls by his first name, Alexander.

He is the eldest of her four children through her first marriage to the irascible Stanley Johnson, the former Tory MEP, writer, novelist and farmer.

Stanley lives on the family farm on Exmoor and has two grown-up children with his second wife Jennifer - Julia and Max.

With her mop of hair and a slight quirkiness that hints at a degree of eccentricity, there is little doubt that she is the mother of her larger-than-life son Boris.

Charlotte was born in Oxford where her father, Sir James Fawcett, was a fellow at All Souls. Her mother Beatrice also came from an academic family - her mother was the first to translate Thomas Mann.

While reading English at Oxford, Charlotte met and married Johnson.

Abandoning her studies at the end of her second year, she went with him to America, where Boris was born, although she returned to complete her degree.

Charlotte had four boisterous young children - Boris, now 43, Rachel 42, Leo, 40, and Joseph, 36.

But the marriage was an unhappy one, due largely to Stanley's chronic philandering.

"I suffered from depression and in 1974 ended up spending nine months at the Maudsley Hospital," says Charlotte.

"It was awful and I don't want to go into it, but it would be fair to say we did not make each other happy."

In 1978, after 16 years together, the couple divorced and Charlotte embarked on what promised to be a fulfilling professional and personal life.

She began painting in earnest and met her second husband, Nicholas Wahl, a brilliant professor of political science, who then pursued her relentlessly from his home in New York. Nicholas died in 1996.

She says of those years: "It was a very happy time. From 1979 to 1988 I was busy painting all over Europe and America.

"I charged £50 for a sitting then, but now, of course, it would be more like £5,000.

"I travelled back and forth to America to be with Nick and we eventually married in 1988."

A year later, she was diagnosed with Parkinson's disease.

"I prefer to think of it as a condition," she corrects sternly. "It sounds more cheerful. It also suggests that it's something one can live with.

"Nick didn't believe it. He didn't want it to be true, even after I had gone into a London hospital and tests proved positive.

"Actually, it was a very hard thing for us to accept, but Nick was incredibly loving and supportive.

"It depressed me. I became anxious. Then I started taking the drugs.

"It took a year to get them right, but my symptoms lessened and, with the wonderful support of the Parkinson's Society, my mood improved.

"My lack of knowledge made me so anxious. Even those people who suffer from Parkinson's don't want to talk about it.

"That's why I'm doing this interview. It is important to raise public awareness, because this is sadly becoming a common condition in our modern society."

It is estimated that four million people worldwide have Parkinson's. In the UK around 120,000 people - one in 500 - are sufferers, and about 10,000 are diagnosed each year.

Symptoms usually first appear in the over-50s, but not always.

One-in-20 of those diagnosed each year will be aged under 40, and statistically men are slightly more prone to it than women.

The disease is a result of a loss of nerve cells in the parts of the brain known as the substantia nigra that are responsible for producing a chemical known as dopamine, which allows messages to be sent to the parts of the brain that coordinate movement.

When about 80 per cent of dopamine has been lost, the symptoms of Parkinson's appear and the level of dopamine continues to fall slowly over many years.

While drugs and surgery are used to control the symptoms, there is no known cure.

Symptoms include freezing movement, anxiety, depression and fatigue.

Charlotte says: "People think Parkinson's is all about shaking, like the boxer Muhammad Ali or the American actor Michael J. Fox.

"But I don't shake very much. I never have.

"In my case, my balance is a huge problem.

"I'm stiff and when I walk I have something like a freeze moment. This means that without any warning my body seizes up and I'm stopped in my tracks, but my momentum keeps going and I fall.

"It's quite a shock for people when they see it."

With her impish sense of humour, Charlotte explains how she has even learned to break her fall like a stunt woman.

"I can be standing talking to someone and suddenly keel over. I can feel it coming and sort of fold myself into it.

"I had a terrific fall outside Notting Hill police station and hit my head," she says chuckling gleefully.

"Four strapping constables picked me up. They fussed over me; it was lovely. I go in now and then to say hello."

Yet it's not always easy for her to remain cheerful about the lack of control over her limbs.

"In restaurants, I can always be guaranteed to knock over someone's wine,"she says.

"I walk with a loose swinging gait and people usually think that I'm drunk, though ironically my symptoms are much better if I've been drinking."

The smile on her face is replaced by a wistful expression.

"Lately, I have some periods when I shake all over and can't stop. My head bobs back and forth and my arms writhe about.

"It's so embarrassing, especially when people stare. It appears as if I'm some crazy old bird.

"I hate seeing others with Parkinson's doing the same thing because I know how they are feeling.

"It sometimes gets me down, but not as often as I would have expected.

"I'm very keen on enjoying myself. I paint every day, if I can, though I find it rather slow-going.

"I can't travel very well. Planes and the Tube are out; too much risk of injury. I get about town in taxis.

"I moved back to London in 1996, after Nick died of cancer. I miss not having his support.

"But it's important to grasp what joys one can.

"I enjoy spending time with my friends and family, including my 11 wonderful grandchildren - though, sadly, I've not been able to be as active with them as I would have liked.

She says: "Alexander has been wonderful, as have all my children. We speak often, even though he is busy campaigning.

"I would love to get involved because I believe he would be very good for London and the people.

"But I would be more of a liability. Can you imagine how it would go down if I fell over or something awful like that?"

At one point Charlotte considered surgery to improve her balance and walk, but decided against it.

"The specialist warned that depression was a possible side-effect. Because of my history I didn't want to risk it."

She is, however, about to start using a patch - a new treatment, similar to nicotine patches, that dispenses the dopamine replacement drugs she needs.

Despite future uncertainty, Charlotte remains unstintingly optimistic that a cure will be found in her lifetime.

"My biggest fear is being bound to a wheelchair which is, I regret, an inevitability - things remaining as they are.

"But I strongly believe they will one day come up with something that, if not a complete cure, will allow me to get about independently."

•Parkinson's Disease Society: www.parkinsons.org.uk, 0808 800 0303

What is Parkinson's Disease?

Dr James Parkinson first identified the condition, which he called "shaky palsy", in 1817.

It is a chronic (long-term), non-fatal, degenerative neurological disorder that impairs movement and speech. Though it is most common in the over-50s, one in 20 of those diagnosed is under 40.

Juvenile Parkinson's - affecting those under 18 - is extremely rare.

Men are slightly more likely to develop Parkinson's than women, but no one knows why.

What causes it?

Characterised by muscle rigidity, tremors - commonly referred to as "the shakes" - fatigue and, in extreme cases, total loss of mobility, the primary symptoms are due to a loss of nerve cells in the substantia nigra, part of the brain producing dopamine to aid movement co-ordination.

With depletion of dopamine-producing cells, parts of the brain can't function normally.

Parkinson's symptoms appear when about 80 per cent of dopamine has been lost.

Dopamine levels continue to fall for years. Researchers believe it is caused by genetics - nine genes linked to Parkinson's have been identified - plus environmental factors.

What are the symptoms?

"They vary greatly - a third of patients don't experience tremors," says Professor Ray Chaudhuri, of the Movement Disorders Unit at King's College Hospital, London.

"Other early warnings can include difficulty in writing, performing simple manual tasks such as tying shoelaces and holding cutlery, or the dragging of a limb.

"There is a feeling of stiffness, accompanied by numbness. One almost universal symptom is a loss of sense of smell - sufferers can't smell oregano."

Slowness or difficulty in initiating movement - bradykinesia - is common, as is muscle rigidity.

Disturbed sleep, bowel problems, incontinence, memory problems and depression are common "non-motor" symptoms, all linked to depleted levels of dopamine.

"The progression of the disease is usually slow for the first 15 years, after which decline can be rapid.

"As the disease advances the bottom half of the body can freeze. It's distressing, but not usually painful," says Professor Chaudhuri.

The symptoms of Parkinson's develop gradually.

There are no specific tests to prove if someone has the condition. Patients are diagnosed on medical history and a clinical examination.

The symptoms can have other causes and tests and scans may be needed to rule these out.

Is there a cure?

"There is no cure," says Professor Chaudhuri. "But it is treatable and manageable.

In the early stages, many rely on a healthy lifestyle - diet, exercise and relaxation. Later, drugs can also be used."

A new treatment, licensed for UK use in 2006, is the Neupro patch, made by Schwarz Pharma.

The patch contains a dopamine agonist - an agent that acts directly on the dopamine receptors in the brain - called rotigotine, and delivers a continuous dose of the drug over 24 hours, so patients have to change the patch only once a day.

Medications increase the level of dopamine reaching the brain, stimulate the areas where dopamine works, and block the action of other chemicals that reduce dopamine's effect.

Surgery is also available, depending on symptoms.

Deep-brain stimulation involves implanting a wire, with four electrodes at its tip, into the thalamus, the globus pallidus or the subthalamic nucleus - all parts of the brain connected to movement and co-ordination.

The wire is connected to a small implantable pulse generator (IPG) inserted under the skin, often in the chest, like a pacemaker.

The IPG sends electrical signals to the brain to stop or reduce Parkinson's symptoms.

Lesioning is another option. An electrode is inserted into the brain, causing selective damage to certain cells in the thalamus (thalamotomy) or globus pallidus (pallidotomy).

Unlike deep-brain stimulation, this is irreversible and less common.

There have been promising developments in coaxing human stem cells - premature cells that can become any of a number of mature cells in the body under the right conditions - to form dopamine-producing brain cells in rats, but treatment in humans is still a long way off.

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[rd42]

I'm the same when I have a drink, I don't know if it's because alcohol does help increase the release of our friend dopamine or it relaxes me. Probably both.

Cheers

[toob]

definitely feel a lot better after a drink or two! But i notice that the PD drugs are much effective if I don't drink as much generally...

Off to the pub...

Originally Posted by rd42

I'm the same when I have a drink, I don't know if it's because alcohol does help increase the release of our friend dopamine or it relaxes me. Probably both.

Cheers

[aftermathman]

acting as a relaxant and this helps the symptoms.

Following morning though things are much worse than normal.

Interesting, when I was going through the dx process it was claimed that the symptoms of PD should get worse with drink.

Guess there is no benefit to the Balti chicken Indian curry though.

Neil.