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Life’s beauty & the legacy of David Mackenzie

Not many people can consider a diagnosis of Motor Neuron Disease to be anything other than a death sentence.

The ability to do so marks David Mackenzie as an extraordinary person.

Faced with a frightening diagnosis that gave him two to five years to live, he has drawn on a deep well of positivity that he didn't previously know he possessed and written a book that that shines with raw emotion and illustrates the capacity of the human spirit to cope with the darkest adversity.

It was a sudden bout of muscular weakness during a hit-and-run cricket game that prompted the otherwise healthy 39-year-old father of three to visit a doctor.

A few months and several tests later he was coming to terms with having a terminal illness and wondering how to tell a ten-year-old boy, an eight-year-old girl and a three-year-old boy that their father is going to die.

That was five long years, almost another lifetime, ago.

Mackenzie refers to the day he was told he had Motor Neuron Disease (MND) as his Watershed Day. There had been other watershed days in his life, his first day at work, his wedding day, the days that his children were born, but this one was different.

He describes it as the beginning of a journey into the unknown, on a physical, emotional and spiritual level.

MND results in the death of the motor neurons, the nerve cells that transmit messages from the brain to the muscles. As the neurons die, messages to the voluntary muscles cease and the muscles stop working. Unused, the muscles gradually waste away and die. Eventually the muscles associated with the lungs are effected and death comes. The cause of the affliction is unknown and there is no known cure.

While MND has gradually claimed more of his body Mackenzie feels that he has been learning, and growing in leaps and bounds on the other levels, hence the title of his book ‘Coming to Life.’

The evening before his diagnosis he considered the task of bathing his two youngest children to be a chore. The evening after it was precious privilege.

A chartered accountant by trade Mackenzie has charted his emotional journey in detail.

Before his Watershed Day he says he was a typical Aussie bloke. As a child crying over a disappointing golf shot he was told: “Swear at son. Don’t cry.” He learnt that emotions were unmanly, something to be suppressed.

The horror of terminal illness changed that though and he took on the challenge of understanding and living with himself, emotions and all.

Writing a book was part of his process of exploration and the end result is a how-to-have-emotions-handbook with relevance to everyone, with illnesses and without. His smile and enthusiasm for life stand in themselves as a challenge to anyone feeling burdened by ordinary misfortune.

Five years into his illness Mackenzie is doing better than most MND sufferers. He needs a walking frame to get around his house and uses a wheelchair to travel distances.
He can still speak and swallow, but he is aware that he could lose these abilities at any time.

Five years after diagnosis 80% of MND sufferers are dead, and 20% are in a worse condition that Mackenzie is now. Hope exists though. Shining particularly brightly in the form of physicist Stephen Hawkins who was diagnosed in his 20s and is now in his 60s.

During his frenzied search for information on MND that followed his watershed day Mackenzie came across Hawking’s website and read about how he has overcome the terrible limitations imposed by the disease. He was so inspired that he sent the physicist an email, and was delighted when he received acknowledgement and best wishes in return.

Mackenzie is convinced that remaining positive about life has made an enormous contribution to his powers of resistance. He gives credit to the family and friends who support him and to the process of writing and facing his big questions, such as how can this have happened if God exists and is not a bastard?

Death and religion are old friends. Terminal illnesses almost always raise spiritual questions. As a churchgoer Mackenzie was forced to question his faith. It was restored though by a gentle reminder from a wise friend who said that just because we don’t understand something doesn’t mean that there is an absence of meaning, just that there is more meaning than we can handle.

Other milestones on the journey include his contemplation of euthanasia. A reasonable issue given that MND has been called the “worst possible way to die”.

Another issue that the disease drew out was the question we all ponder about the meaning of life, on a personal level, the question of what will I leave behind?

The question, followed fastidiously through thoughts about children and faith as legacies, eventually led to the realisation that it is the shift in priorities that the illness brought about that is worth sharing and leaving behind as a message for those who follow. Inspired by this, Mackenzie is speaking out and sharing his belief that life is beautiful and well worth cherishing.

Having let go and grieved for his plans to have an active retirement travelling with his wife Jill around Australia in a campervan, Mackenzie now sees himself as a writer and an important source of support to others battling to come to terms with terminal illnesses, particularly with MND.

Mackenzie is a regular on the Ozpals website, which is one of the places people with, and people supporting people with, MND gather.

Having survived as long as he has Mackenzie has become a beacon of hope to others, as Hawking was to him in the early days of his journey.

The launch of the book in August this year marked another new beginning. Mackenzie is now receiving mail and being asked to share his wisdom. No longer an accountant, he is now a survivor, a man of extraordinary courage and wisdom, a teacher and a source of inspiration. He didn’t choose MND, but the choices he has made since his Watershed Day have made him a hero in the eyes of many.

His book, with its remarkable ability to draw out emotion, is in itself an important legacy to leave a world that struggles to understand its feelings. As HarperCollins publicist Louisa Dear said about its launch: “There wasn’t a dry eye in the room.”

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What is Motor Neurone Disease? Motor Neurone Disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move around, speak, breathe and swallow fail to work normally.

With no nerves to activate them, muscles gradually weaken and waste. The patterns of weakness vary from person to person.

What are the Symptoms?
Early symptoms are mild, and include stumbling due to weakness of the leg muscles, difficulty of holding objects due to weakness of hand muscles, slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles. The effects of MND vary enormously in respect of initial symptoms, rate and pattern of progression, and survival time after diagnosis.

How is it diagnosed?
The diagnosis of MND is often clinically difficult, and it sometimes is necessary to review patients for some time before the diagnosis becomes relatively certain. The family doctor may suspect the neurological problem, and confirmation of the diagnosis by a Neurologist is desirable. The diagnosis can be assisted through a range of tests, including some which eliminate other conditions. Often an electromyograph (EMG) is used, in which a needle is inserted into various muscles to measure their electrical activity.

What remains unaffected?
In the majority of cases the intellect and memory are not affected, nor are the senses of sight, hearing, taste, smell and sensation.

The bowels and bladder are not affected by the disease, although diet and exercise should be carefully monitored.
Support people include the family, friends, GP's, Neurologists, Occupational Therapists, Speech Pathologists, Psychologists, Home Care Nurses and Social Workers.

What can be done?
Information about the support group available in your State can be obtained from the Motor Neurone Disease Association web pages.

Some Associations, as well as the National Association (MNDAA), employ professionals to provide advice about resources and equipment as well as psychological support, all of which can maximise the quality of life for people living with MND and for their families and other carers.

These professionals work together with those who have personal experience of living with MND and their carers, including those who have cared for their loved ones in the past, to provide support and advice based on a wide understanding of the nature of the issues associated with each stage of the disease.

Sourced from Motor Neuron Disease Association of NSW. For more information visit or call 1800 640 144 or 02 9743 587

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