For years now, Natalia Rossiter has provided 24-hour care for her husband who has Huntington's disease, but she wonders how she can continue without psychological support.
Huntington's disease is often described as like having motor neurone disease, Parkinson's and Alzheimer's all at once.That is the situation confronting Natalia Rossiter, who is caring for her HD-affected husband."Because of the mental aspects of this condition, it is like someone with dementia and Alzheimer's," Ms Rossiter said.There is currently no cure or treatment for the illness, which has a 50 per cent chance of being passed down through generations.
Ms Rossiter said she was afraid of her "inability to cope", and considered moving her husband to an aged-care facility due to the overwhelming nature of the assistance needed for his condition. "It is not uncommon for children to care for their parents before they develop symptoms themselves, or a parent to care for a partner and then for a child," she said.
"Access to counselling and other services is a national issue and that is regardless of location … but the inequalities are certainly felt in regional and remote areas."In an effort to bridge the gaps in access to support services, HD-affected families in Central West NSW have organised peer support sessions to talk about their experience.
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