We all feel sad or down sometimes, but there’s evidence that people with terminal illnesses such as motor-neurone disease (MND) are more prone to feelings of depression and suicidal thoughts.

Living with a disease that has no cure, a disease that attacks the brain cells that assist in involuntary yet very important bodily functions, is incredibly tough.

When motor neurones (specialist nerve cells found in the spinal cord and the brain) stop working properly, a person with MND will find the following bodily functions increasingly difficult and, later, impossible to perform:

– Walking
– Speaking
– Swallowing
– Breathing
– Gripping

An estimated 1,200 Australians are currently diagnosed with MND and about 400 new cases are reported each year. While depression affects more than one million Australians every year, researchers are only now starting to explore the link between MND and depression. As a result, little is known about the prevalence of depression among people with MND in this country.

However, in 2007, professors John McLeod and David Clarke of Melbourne’s Monash University investigated available literature from 1966 and 2006 on the psychosocial aspects of MND. They looked at quality of life, depression, social support, life-sustaining treatment, coping, spirituality and current practice.

What they discovered flies in the face of early assumptions that depression was not a major side effect of terminal illnesses and, more relevantly, of MND.

The research showed that:

– Depression is relatively common among MND sufferers (a 50% prevalence rate).
– MND-related depression strongly correlates with quality of life.
– Limited social support influences quality of life and depression.
– Hope and hopelessness are important issues for MND patients.
– Hopelessness contributes significantly to a desire for hastened death.

Get care and support

Feelings of shock, fear, anger, denial, sadness, helplessness, frustration and resentment are normal in people with terminal illnesses such as MND. However, some people may feel that they’re not able to cope or that these feelings simply don’t go away.

If this is the case, it’s best to talk to a doctor about support and other forms of treatment, and to take things one step at a time. Cognitive behavioural therapy, counselling and treatment with anti-depressants can make a world of difference in terms of easing the depression.

Patients who feel overwhelmed by their condition and what it means for their future can benefit from sessions with a counsellor, who will help them to break the problem down into smaller, digestible chunks.

It’s also important for them to understand that they shouldn’t be afraid of talking to family and friends about their fears and concerns. And it’s a good idea to find other people with MND and to talk to them, as this could help the person feel less isolated.

Social interaction for MND sufferers

People with MND are often significantly limited in terms of social interaction, especially as the disease progresses. If you’re a caregiver, friend or family member of someone with MND, make a point of integrating them into daily social activities – at least for as long as they’re able and willing to participate.

A few ideas:
– Use gardening as a good way to spend time outdoors.
– Enjoy a day at the beach or near the pool.
– Visit a park and have a picnic. The good news is that many parks now have wheelchair access.
– Play cards and/or board games (many can be enjoyed with movement).
– Sports can be enjoyed by maintaining links with local clubs and events. Depending on mobility, people with MND can participate or be spectators.
– Massage, aromatherapy and other relaxing spa treatments can also help to ease tension and stress.

For more ideas about social activities, get in touch with local support groups and speak to the patient’s doctor or specialist. Visit www.mndaust.asn.au for more information about support from state MND associations.

REMEMBER: The psychological effects of any terminal illness are not just a burden on the patient. It’s common for family and caregivers to also feel its impact. Learn to also look after yourself.

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