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 Inside Out - East Midlands: Monday June 9, 2003

MOTOR NEURONE DISEASE

Cathy Burgess and her family
This crippling illness is still incurable

Cathy Burgess was diagnosed with Motor Neurone Disease two years ago. She died earlier this month, tragically young.

Cathy Burgess used to be a nurse, caring for patients nearing the end of their lives.

At the end of her life she was nursed by others after being diagnosed with Motor Neurone Disease.

Cathy died earlier this month. She was one of around 5,000 people diagnosed with Motor Neurone Disease (MND) in the UK.

At present there is no cure for the disease. On average, the life expectancy for sufferers is between two-five years.

A chilling diagnosis

Cathy Burgess
Cathy was an inspiration to fellow MND sufferers

Cathy faced up to her illness with great resolve. She described the initial diagnosis as being like an icy hand grabbing her heart.

The disease changed her life completely. "I am in a different place now - I am getting on with life," she says without any self-pity.

Cathy was determined to make the most of life, and to keep on looking good, with a weekly beauty therapy regime.

But she was also keen to give something back to society in the time she has left.

Cathy helped to mentor new managers in the NHS, and was actively involved in fund raising for the Motor Neurone Disease Association.

Motor Neurone Disease

Motor Neurone Disease (MND) affects the nerve cells in the brain and the spine which control our ability to walk and talk.

Cathy on a tall ship
Cathy Burgess made the most of her remaining months

Degeneration of the motor neurones leads to weakness and wasting of muscles - this often occurs in arms or legs initially.

Some people can develop weakness and wasting in the muscles supplying the face and throat, causing problems with speech and difficulty chewing and swallowing.

MND does not affect touch, taste, sight, smell or hearing, nor directly bladder, bowel, or sexual function. In the vast majority of cases, the intellect remains unaffected.

A mystery illness

It can affect any adult at any age but most people who have MND are over the age of 40 and the highest incidence is in the 50-70 age range.

MOTOR NEURONE DISEASE - THE FACTS

Symptoms include:

* stumbling

* problems of balance and wobbliness

* difficulty holding objects

* twitchy or stiff muscles and painful cramps

* problems with speech including slurring of words

* difficulty chewing and swallowing

* progressive muscle weakness and wasting

* increasing mobility problems

* weakened neck muscles resulting in head falling forwards

* breathing difficulties

These symptoms vary from patient to patient, and may be different at various stages of the disease

Men are affected slightly more often than women.

The effects of MND vary from one person to another as does its rate of progression.

Towards the end of her life Cathy Burgess couldn't walk and her speech was increasingly affected by the illness.

The causes of the disease remain a mystery. MND can run in families and some scientists believe that it may be genetic.

About 10% of cases show a family genetic predisposition to MND - termed 'familial MND'.

Another theory is that the nerve cells have become damaged by free radicals and environmental factors.

More recently some medical experts have suggested that an excess of glutmate - a nervous system chemical messenger - may be responsible.

Keeping dignity

Cathy lives on as a great inspiration to other sufferers of the disease.

She was adamant that she was going to make the best use of her remaining time.

As husband Rob said earlier this year, "It's a cruel disease - obviously it's very hard to cope but you get on with your life."

Cathy wanted to die with dignity, and she spent most of her last dayswith her husband and her two sons.

Cathy's wedding day
Happier times - Cathy's joyous wedding day

The future

What is the future for Motor Neurone Disease?

A great deal of research is being carried out into MND, and there have been some encouraging advances in understanding the disease in recent years.

Sadly, these advances are too late for Cathy Burgess, but they offer hope for sufferers of MND in the future.

So what can patients do to have a decent quality of life?

Being well informed can help to give both the patient and family peace of mind. The Motor Neurone Disease Assocaitiona dn its Regional Care Advisers can help.

Planning the best use of the patient's remainaing time can also help people with MND to achieve a better quality of life.

This is one of the legacies of Cathy Burgess - a courageous woman who continues to give hope to others. She also gave back a great deal of help to fellow sufferers during the last days of her own life.

See also ...

On bbc.co.uk
Motor Neurone Disease
Motor Neurone Disease

On the rest of the web
Motor Neurone Disease Association
Motor Neurone Disease Association - Notts
Patient UK

The BBC is not responsible for the content of external websites

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