The challenges faced by regional carers in Australia are often overlooked, but for those dealing with the complexities of Huntington's disease (HD), the situation is particularly dire.

HD is a devastating genetic disorder that combines the symptoms of motor neurone disease, Parkinson's, and Alzheimer's, leading to a progressive decline in a person's physical and mental abilities.

This relentless disease not only affects those diagnosed but also places an immense burden on their carers, who frequently find themselves on the brink of ‘stress and exhaustion’.

Natalia Rossiter, a resident of Orange in Central West NSW, is one such carer who has been looking after her husband, who is affected by HD, for six years.

The toll it has taken on her is evident as she grapples with the relentless demands of the disease.

‘Because of the mental aspects of this condition, it is like someone with dementia and Alzheimer's,’ Ms Rossiter explained.

‘Their ability to emotionally connect with someone, their ability to reason, goes away.’

Natalia Rossiter emphasised the challenge of accessing specialised psychological aid for HD-affected families in regional areas. Credits: Shutterstock

HD typically manifests when patients are in their 30s to 50s, and as the nerve cells in the brain deteriorate over time, there is no escaping the reality that there is currently no cure or treatment.

The genetic nature of the disease means that there is a 50 per cent chance of it being passed down to the next generation, adding an extra layer of concern for families.

In Australia, specialist care for HD is scarce and predominantly located in capital cities, with each unit only having a few professionals trained to manage the disease.

This presents a significant challenge for regional families like the Rossiters, who are often left without access to the necessary psychological support from such health professionals.

‘I can pay for a private psychologist but it is very expensive and they have little to no knowledge or understanding of Huntington's and what it is and what it means to a family or carer,’ Ms Rossiter lamented.

The fear of having the ‘inability to cope’ led Ms Rossiter to consider moving her husband to an aged-care facility due to the immense level of assistance required for his condition—a decision that no doubt weighs heavily on her heart.

She believes that government support to increase the number of HD-trained psychologists would be a significant step in helping her and others like her manage the daily struggles they face.

‘I deal with Huntington's every hour of every day, it doesn't go away at any time, I cannot leave it at home,’ Ms Rossiter shared.

‘To have support, someone to talk to who understands what I am going through, would be invaluable.’

The issue is a national one, with approximately 2,600 Australians living with HD and another 9,000 at risk.

Lenni Duffield, the Chief Executive of Huntington's Australia, emphasised the hereditary nature of the illness and the profound impact it has on carers, who often find themselves in a cycle of caring for multiple family members over time.

‘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.

‘It is such a chronic and widespread role of care in families. It deepens isolation, there are feelings of loss, guilt, anger, burden and helplessness.’

Ms Duffield highlighted the widespread absence of assistance for caregivers, particularly evident in regional parts of Australia.

‘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,’ she explained.

To combat this isolation, HD-affected families in Central West NSW took matters into their own hands by organising peer support sessions and discussing their experiences.

Rachael Brooking, the founder of HD Awareness Orange & Central West, facilitated the first meetings six years ago.

‘Unless you have lived experience with the situation it is very hard to relate,’ she pointed out.

‘Being able to be in contact with families that have experience with HD is a really great comfort.’

‘We have made some great connections,’ Ms Brooking added.

For Ms Rossiter, these gatherings offer rare opportunities to converse with individuals who comprehend the challenges she faces.

‘We have had coffee and a chat and shared our stories, provided understanding and support to each other,’ she said.

‘That is the way we survive really, where we get our support.’

As discussions surrounding the challenges faced by carers of individuals with Huntington's disease continue to unfold, attention is drawn to the broader landscape of healthcare and support services for ageing populations.

In regional Australia, where access to specialised care can be limited, caregivers like Ms Rossiter navigate the complexities of providing assistance to loved ones with neurodegenerative conditions.

However, amidst these struggles, there are also stories of hope and resilience emerging within the healthcare sector.

Across the globe, patients seek out countries renowned for their exceptional dementia care, recognising the importance of quality support for those living with cognitive decline.

This juxtaposition highlights the ongoing efforts to improve care standards for seniors and individuals with complex medical needs, both locally and internationally.

Key Takeaways

• Huntington's disease (HD) is described as similar to having motor neurone disease, Parkinson's, and Alzheimer's simultaneously, causing immense stress and exhaustion for carers.
• Natalia Rossiter, who cares for her HD-affected husband in Central West NSW, highlighted the difficulty in accessing specialised psychological support for families dealing with HD outside of capital cities.
• There is no cure for HD, which affects approximately 2,600 people in Australia, with a further 9,000 at risk, and support is particularly needed in regional and remote areas.
• Families and carers affected by HD in Central West NSW created peer support sessions to share their experiences and provide mutual understanding and support.

Have you or someone you know been affected by Huntington's disease? How do you think we can better support regional carers facing such overwhelming challenges? We invite you to share your stories and suggestions in the comments below.

 

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One of my aunts married a chap who developed Huntingtons Disease.

Back in the 1950s and ‘60s the disease was apparently referred to as Huntingtons Chorea. ‘Chorea’ is a primary symptom of Huntington’s Disease - one that causes involuntary, irregular or unpredictable muscle movements, affecting arms, legs and facial muscles. Chorea comes from the Greek word that means “to dance.” It can make you look like you’re dancing, restless or fidgety. While Chorea itself isn’t life-threatening, the most common symptoms are these body movements that can’t be controlled, including:
* Involuntary muscle movements: fidgeting, twisting or jerking - arms, legs and/or facial muscles. Walking, swallowing and talking can all be affected.
* Grip changes: Extending a hand or trying to shake someone else’s hand may result in the repeated gripping and releasing of fingers. This motion may be referred to as ‘milkmaid’s grip’ because it’s akin to milking a cow.
* Tongue movements: known as a jack-in-the-box tongue, the tongue may move in and out of the mouth, or in other directions as well.

Huntington disease cannot be cured or its progression slowed, but these days, certain medications can be especially helpful for controlling the unusual movements.

Having met and married during WWII, Aunt and Uncle thought, at first, that his early symptoms were post-war related, following some pretty brutal active service. Prior to diagnosis, my aunt and her husband moved often, as he couldn’t seem to settle to anything. But finally, after about 15yrs of marriage, came the news of this awful Huntington’s Disease. My aunt was told by their small-town doctor that she would have to become the bread-winner.

Aunt had a naturally sunny disposition, and wherever they had lived, she turned the dingiest of dwellings into a happy, lovely home. Adjusting to these new and distasteful directives, Aunt found work with the Far West Home. As her Darling’s condition worsened, she could not work and care for him, so in time, he went to live with his sister - many hours of travel away from his Sweetheart.

Many within the family felt it was a godsend that their marriage produced no children. Uncle, who I never met, passed away just a few short years after I was born. Aunt, who returned to her home town when she retired, came to live next door to my family. I was naturally quite the inquisitor as a child, and periodically asked her about her Darling. Her natural smiles would slowly fade, and while she would answer my questions, the change in her demeanour usually caused me to change the topic sooner than I might have otherwise.

From my very shielded perspective, it was only after Aunt passed away that the enormity of all that she and her Darling had been through truly impacted my heart. Only one of many nieces and nephews, I was astounded to inherit her little cottage.

My husband, baby daughter and I attended Aunt’s funeral at only 6wks post partum for me. Then began the long and emotional journey of sorting her belongings. In a suitcase filled with treasures, telegrams and letters from or about her husband, I discovered the communication that impacted me so deeply. It was a letter from Aunt’s sister-in-law - the same sister of Uncle’s who had cared for him until his passing.

She spoke of Uncle, and I learned that he had committed suicide, unable to cope with the changes afflicting him without his Sweetheart nearby to help him cope.

She spoke of her own sons. One whose marriage had not been able to withstand the strain of HD symptoms he was afraid to investigate. The other, whose marriage was stronger, she knew, also had the disease. The second son had children, and she was afraid for them.

She finished the letter with an order. “If you are still in touch with any of them, my dear, YOU MUST NEVER TELL.”

Aunt’s s-i-l had never told her own boys that they, too, might develop the same awful disease they, as (likely) young teens, had watched their Uncle suffer. Older than me by well over a decade, her sons had never been given the opportunity to make informed choices regarding their own lives or procreation. She had withheld this mind-blowing information from her daughters-in-law, too. I had no way of contacting them.

My mother was still alive, back then. She said that secrecy was how many families of that era dealt with the uncomfortable, the shameful, and the difficult. Thankfully, she and my father had taken a different approach, opting for gentle, considered honesty.

In our little family unit, we have faced many difficult things over the years. Most families do, in one way or other. We have done our best to face it all. Together. Talking. Doing our best to hear, understand, and be gracious with one another.

For my aunt and uncle - I’m so glad they had some wonderful, long and happy years together. For Uncle’s nephews, their wives and children, with all my heart I hope they are now at peace, whether living or deceased. For those still living, I pray they are well-informed, able to make wise choices, and live well.