Facing the future by being positive about Parkinson's (From Worcester News)

Facing the future by being positive about Parkinson's

11:42am Wednesday 22nd April 2009 in

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PARKINSON’S Disease ended Marian Thomas’s job as a carer and left her facing the prospect of one day needing round-theclock care herself.

It is hard to imagine a more bitter blow but mercifully the progress of the disease has been very slow and she has a close, loving and supportive family around her.

Mrs Thomas, aged 56, of Eliot Road, Perdiswell, Worcester, was diagnosed 11 years ago following a brain scan and other tests at Queen Elizabeth Hospital in Birmingham after she initially raised concerns with her GP in Warndon Villages, Worcester.

She was just 45 years old at the time, which goes some way to exploding one of the myths about the disease – that it only affects older people.

Mrs Thomas suffers more from muscle rigidity than shakes, sinking another popular misconception – that people with Parkinson’s always suffer from tremors.

Mrs Thomas said: “I was a carer myself and I discovered while I was doing some ironing that I could not grip the shirt sleeve. I thought it was a brain tumour. I was quite frightened for me and my husband.”

She was caring for the elderly in their own homes on behalf of Worcestershire County Council when she was diagnosed but managed to work for another three years in the job she loved before taking early retirement.

She said: “I got to a stage where I couldn’t manage myself, let alone care for the elderly. They had to pension me off. I loved my job and I loved going to see all the people I cared for.”

Parkinson’s is a degenerative disorder of the central nervous system caused by loss of the neurons that make dopamine, a vital brain signalling chemical.

To counteract this Mrs Thomas takes dopamine agonists – a class of drug that mimic the effects of the brain chemical, stimulating nerve cells and producing similar effects to the natural dopamine.

She must take two tablets five times a day.

Since the diagnosis Mrs Thomas and her husband Clive have made several modifications to their home including an armchair with a motor that helps raise her to a standing position, a seat which rises up and down to help her get in and out of the bath, a frame to help her get out of bed, a walking stick and a specially adapted car.

Her condition is also exacerbated by her arthritis and Crohn’s disease. The loss of mobility she has suffered so far means the couple have had to reconsider certain holiday destinations, including flying out to their favourite resort in Minorca.

Mrs Thomas is fortunate because she has a lot of support from her husband of 13 years, 64-year-old Clive, who does much of the driving, performs many of the household tasks and sometimes helps his wife to dress.

Mrs Thomas did not realise just how important her husband was until he broke his arm, which was in plaster for six weeks and limited his ability to help her “I realised then how much he did for me. I have been so lucky with Clive. Sometimes I can’t even put my underwear on and I can’t put tights on at all,” she said.

The disease primarily affects her left side and has now caused some loss of mobility in her face as well as her limbs, making it more difficult for her to smile.

She tries to exercise as much as she can but her confidence took a knock when she fell on the pavement in January while walking the family dog, a black labrador called Suzy.

Because of her Parkinson’s she was not able to get up off the ground and she had to be rushed to Worcestershire Royal Hospital in Worcester by ambulance suffering from bruising and a torn muscle in her arm.

Mrs Thomas, now a grandmother, said she was upset that she could not smile as much as before but still tries her best to remain positive.

One of the most frightening things for many people with Parkinson’s is that the disease is progressive – it will get worse and there is no known cure. However, research continues and hopes for the future remain high, particularly in light of the Human Fertilisation and Embryology Bill, cleared by the Commons in October last year which allows experiments on hybrid humananimal embryos for research. The Bill was passed despite a Labour rebellion which saw Catholic MP Ruth Kelly quit the Cabinet.

Some people with Parkinson’s back the use of these embryos for research which could one day help people with the condition.

Jean Howling of the Worcester and district branch of the Parkinson’s Society was one of those who backed the research in your Worcester News last year.

Mrs Thomas and her husband remain undecided about whether this is the way forward.

However, Mr Thomas said critics of this research may feel differently about the moral implications if they or someone they know suffers from a condition lsuch as Parkinson’s.

Mrs Thomas still refuses to attend meetings of the local society because she finds the experience too depressing.

She added: “I try not to think about the consequences. I don’t want to go to the meetings where you see people a lot worse than yourself. Why torture yourself?

Considering how long I have had it, I’m not that bad.

“The doctor has said I could go on as I am for 30 years. You have got to enjoy life while you can.”

● Mrs Thomas has organised a coffee morning and Parkinson’s awareness drive between 10.30am and 8pm today at her home at 13 Eliot Road, Perdiswell, Worcester.

With a raffle, tombola, games, cake stall, book sale and bric-abrac, she hopes to raise £600 for the Parkinson’s Disease Society.

The society provides support to people with the disease, advice and up-to-date information on symptoms, and backs research and fund-raising.

There is a Worcester and district branch which meets at 7.30pm on the third Tuesday of each month at St Richard’s Hospice, Wildwood Drive, Worcester. For more information call Jean Howling on 01684 591194.

FACTS ABOUT PARKINSON’S DISEASE

What is Parkinson’s?
Parkinson's is a progressive neurological condition affecting movements such as walking, talking, and writing. It is named after Dr James Parkinson (1755- 1824), the London doctor who first identified it.

Parkinson’s occurs as result of a loss of nerve cells in the part of the brain known as the substantial nigra. These cells are responsible for producing a chemical known as dopamine, which allows messages to be sent to the parts of the brain that coordinate movement.

What causes Parkinson’s?
When about 80 per cent of the dopamine has been lost, the symptoms of Parkinson’s appear and the level of dopamine will continue to fall over many years.

Most researchers believe it is likely that many factors play a role in causing Parkinson’s, including genetics and environmental factors.

Genetic research
Scientists have, to date, identified nine genes linked to Parkinson’s, of which the parkin gene is most commonly associated with the familial form of Parkinson's.

Abnormalities in this gene are particularly prevalent with youngonset Parkinson’s disease.

How many people have it?
One in 500 people. Around 120,000 individuals have Parkinson’s in the UK and about 10,000 people in the UK are diagnosed each year.

Symptoms first appear, on average, when a patient is older than 50. One in 20 of those diagnosed each year will be aged under 40 years. Statistically, men are slightly more likely to develop Parkinson’s than women.