Currently there is no cure for Huntington disease, but there are many ways of helping to improve quality of life and coping with the symptoms.
COUNSELLING AND SUPPORT
The Australian Huntington Disease Association (Vic) Inc. has a team of case workers who understand the problems facing a family with HD. They know about the stresses facing a carer who may also be at risk of HD, or has already cared for other family members, or has children or grandchildren also at risk.
A case worker can provide individuals with support, help, or simply someone to talk to at any stage and over many years. The support worker will also be able to put people affected by HD in contact with other support systems within their own community.
MEDICAL TREATMENT
ALLIED HEALTH SERVICES
Most people with HD will see a specialist in HD (either a neurologist or a psychiatrist) periodically, while the general practitioner will look after their day-to-day medical care. The AHDA (Vic) Inc. can help you to make contact with a specialist or clinic.
A good relationship with the general practitioner is invaluable. It is best if the person can build this relationship in the early stages when communication is easy and symptoms are minor. The GP can help in many practical ways. HD tends to weaken the immune system, so the person with HD may be more likely to get a range of minor illnesses that need treatment.
Doctors - both general practitioners and specialists - may not know a great deal about Huntington disease because it is a relatively rare condition. The AHDA (Vic) Inc. can provide an information kit including a copy of a Physician's Guide to doctors to explain more about the illness, and are happy tp make contact with the doctor if they have the permission of the person with HD. The information kit provides information about commonly associated conditions (such as depression - which is common in HD) and recommended medications to assist with the management of involuntary movements.
There are a range of allied health professionals that can assist people affected by HD to maintain independence and quality of life:
- Physiotherapists - can assist the individual to maintain physical skills or learn new ways of doing things. Occupational Therapists - can help to make the home environment safe and easier to manage for the person with HD. They can also provide assistance with a range of practical problems with daily living tasks.
- Speech Pathologist - can assist with eating and swallowing problems and can recommend devices and strategies to help speech and communication, as these become more difficult.
- Dietitians - can help by devising meal programs that a person with HD can enjoy and manage, and that provide enough calories.
- Neuropsychologists - can assist with assessment of cognitive function and strategies to cope with deficits as well as behaviour management strategies.
STAYING ACTIVE
From the start, the person can help to slow down the progression of HD by staying physically, mentally and socially active for as long as possible. Encourage the person to do things such as walking, reading, listening to the news and current affairs, visiting friends, going to the football or out for coffee, joining a gym or continuing anything that they have enjoyed in the past.
People with HD often have difficulty organising themselves and getting started. Carers may need to help to initiate activities and support activity engagement.
EATING WELL
Good nutrition is important for the person with HD. Weight loss is a common problem, and eating well will help the person to stay as fit as possible. A high calorie diet is usually best.
