Carers Program
Carers Program

Caring For People With Neurological Disorders

What Are Neurological Disorders?
A neurological disease is any disease of the body's nervous system. There are many different kinds of neurological disorders; some disorders, such as migraines and epilepsy, are common and treatable. Others can be much more severe and complex, and cause significant physical and mental changes.

Most major neurological diseases get worse over time, and at the later stages of most of the diseases, the person will need support from a Carer or outside services.

Links to information about some common neurological diseases are provided at the bottom of these pages.

The services discussed in these pages have been set up to help raise awareness of the needs and interests of sufferers and Carers, and to help them find information.

Huntington's Disease:
What is Huntington's Disease?
Huntington's Disease (HD) is caused by a defective gene, and results in gradual damage to brain cells. This gene can be passed on – if one parent has the gene, there is a 50/50 chance that it may be passed on to their child.

In most cases, the disease symptoms appear when a person reaches their mid thirties or forties. In rare cases, HD may develop in childhood or as late as seventy years of age.

In HD, a person may experience uncontrolled movement and intellectual, emotional and behavioural problems. Some symptoms may result in a change to personality.

Early signs of HD can include:

  • nervous activity like fidgeting and minor twitching in fingers and toes;
  • slight alterations in handwriting;
  • minor difficulty with normal daily physical skills like driving;
  • short-term memory loss;
  • periods of depression, apathy and irritability and;
  • Impulsiveness.

The Huntington's disease Association (HDA) of NSW offers a range of services and support programs for people with the disease, their families and Carers.
Phone: 9874 9777 or 1800 244 735 or email infor@huntingtonsnsw.org.au.
See Important Links for more information.

Multiple Sclerosis:
What Is Multiple Sclerosis?
Multiple Sclerosis (MS) is a disease with no known cause or cure. "Sclerosis" is a Greek word meaning "hardened tissue" or scars.This "scarring" of the central nervous system can, to varying degrees, interfere with the communication of nerve impulses in the brain, spinal cord and optic nerves. The overall cause of MS is still unknown, but it's thought that factors such as the body's immune system, a family history, and a person's environment may play a part in getting the disease.

MS can be benign - in rare cases it may appear to go away altogether, but the disease is still present. In many cases, it progresses steadily over many years, and causes a slow decline in a person's day to day functioning.

How Is the Body Affected By MS?
MS can affect multiple functions in the body, such as muscle control, sight, hearing, balance, speaking, swallowing, breathing, the skeletal structure, the nervous system, bladder and bowel function, reproductive system, circulatory system, and limb movement. Different people can be affected in different ways and in greater or lesser amounts.

Brain function in MS sufferers may also be affected. This can cause changes to moods and emotions, and sometimes lead to depression. Other common symptoms are fatigue, headache and numbness.

If a person is severely affected, or near the end stage of MS, they will need help with personal care and daily living activities, such as showering, feeding, toileting and walking.

MS Australia provides information and support for people with MS, their families and Carers. See Important Links for more information, or phone the telephone information and support line, MS Connect, on 1800 042 138 or email msconnect@msaustralia.org.au

Parkinson's Disease:
What Is Parkinson's Disease?
The cause of Parkinson's Disease is still unknown. Research has shown that it is probably triggered when the neurones in a particular area of the brain known as the substantia nigra are damaged or lost. This reduces dopamine in the brain; dopamine is a chemical that helps in coordinating movement. Parkinson's Disease usually gets worse over time.

Symptoms can include:

  • slowness of movement;
  • muscle stiffness,
  • balance problems;
  • tremors;
  • a softer voice, and;
  • Possibly anxiety and depression.

However, no two people will experience the disease in exactly the same way or at the same time, as the nature, severity and effect of symptoms can vary greatly. Most people, however, will eventually have trouble completing day to day activities, such as showering, dressing and toileting, and it's likely that at some stage in the disease, a person will need support from a Carer or from formal services.

Parkinson's NSW provides information on the causes and treatments of the disease. It also offers education, free information sheets and support groups for people with the disease and their Carers. Call the info line on 1800 644 189 or email pnsw@parkinsonsnsw.org.au.
See Important Links for further information.

Motor Neurone Disease:
What Is Motor Neuron Disease?
Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that let us move, speak, breathe and swallow begin to degenerate and die. This affects motor skills, which are functions involving the precise movement of muscles with the intent to perform a specific act.

Symptoms and the rate of progression of motor neurone disease (MND) vary a lot from person to person. Early symptoms may be mild and may include:

  • stumbling due to weakness of the leg muscles;
  • difficulty holding objects because of hand muscle weakness
  • slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles
  • cramps and muscle twitching

As the disease worsens, symptoms could include:

  • breathing difficulties from decreased lung power, caused by muscle weakness
  • tiredness caused by muscle exhaustion, weight loss and reduced food intake,
  • some pain or discomfort
  • being unable to sleep, due to discomfort caused by, for example, pain from stiff joints and muscles, too much  saliva, dry mouth or breathing problems
  • mild changes in cognitive skills and processes and/or behavioural change
  • a type of dementia, which affects 5-10% of MND sufferers;
  • too much laughing or crying due to damage to the upper motor neurones;

For most people with MND, their senses of sight, hearing, taste and smell and touch are not affected. The bladder isn't usually directly affected by MND, but some people may have changes to bladder control.

Some people with MND could experience a change in how they understand information, and changes in their language, behaviour and personality. This is caused by a change in the part of the brain called the frontal and temporal lobes. Most people's changes will be fairly mild - however, a small number of people will develop motor neurone disease with frontotemporal dementia.

Symptoms of MND, progression of the disease, and survival time after diagnosis, will vary greatly from person to person.

Most people with MND will eventually need a Carer or help from outside services. MND NSW provides information, support and education about the disease for both people living with it and their families, friends and Carers. Support groups are open to sufferers and Carers. Services include:

  • MND Info Line Ph. 8877 0999 local call Sydney metropolitan area or freecall 1800 777 175.
  • Care for Carers program, which looks at the physical and emotional aspects of caring for someone with MND. Go to MND NSW Info  to book.
  • Support groups;
  • Education, information and resources.

See Important Links for more information.

Important Links:

This link will link you to the Family Matters Information Series, with booklets on "Learning to Live with MS: An Introduction"; "Living Well with MS" and "Caring for a Person with MS." A Carer's Directory also provides links to a range of websites which help Carers to understand a recent diagnosis and suggests practical ways of managing MS symptoms and treatment.

Information about neurological disorders on these pages is drawn from the websites of the relevant state or national peak organisations or from the websites of the organisations actually named.