Understanding Huntington’s Disease
We understand just how devastating a diagnosis of Huntington’s Disease can be. As human beings we have a tendency to catastrophise and see only the worst in a challenging scenario. There’s no denying that a diagnosis can be scary and troubling. However, if patients are to rid themselves of their fear of this disease they must first understand it better.
Gaining a greater understanding of this condition can also help a patient’s friends, family and loved ones make better informed decisions with them and on their behalf to ensure that they get the best care for their individual needs.
Huntington’s Disease damages certain nerve cells in the brain, affecting the wider central nervous system. In 97% of cases the condition is hereditary, caused by an inherited faulty gene that causes toxic proteins to develop in the brain. In approximately 3% of cases, however, there is no family history of the condition although this is commonly because the parents died at a young age. Men and women have an equal chance of being affected by the disease and while symptoms usually begin to surface in adulthood, between 5 – 10% of people with Huntington’s develop it before the age of 20. This is known as Juvenile Huntington’s Disease. In Australia over 1,800 people currently have Huntington’s Disease and a further 9,000 or so are at risk.
Huntington’s Disease can take a long time to diagnose, especially as it can take a very long time to develop. Early stage symptoms include personality changes such as mood swings, irritability and altered behaviour. These symptoms can be extremely distressing for sufferers and those closest to them. Other early symptoms can include slow or abnormal eye movements, impairment of voluntary movements and involuntary movements including twitching and jerking.
Huntington’s disease tends to get progressively worse over a span of 10 – 15 years. Like MND it can lead to a loss of motor function and inability to control muscle groups. However, unlike MND it can also affect behaviour and cognitive functions. It can alter perception and awareness and impair patients’ thinking and judgement. Many patients suffer from extreme involuntary muscle spasms, and in the advanced stages of the illness a person’s movement may become slow as their muscles grow rigid. This is why Huntington’s Disease is also referred to as Huntington’s chorea; this is in reference to the “dance” or writhing movements that can occur when patients lose control of their muscles.
Damage to the nerve cells in the brain gets progressively worse over time. As a result, symptoms can become more severe making the illness more debilitating. Eventually, patients may find moving, talking and swallowing increasingly difficult, and will need to become increasingly reliant on the assistance of friends, family and professional care assistants.
That’s where we come in!
We know just how difficult it can be when someone you care about is diagnosed with Huntington’s Disease. We understand that even with the best will in the world and all the love a human heart can hold, few of us have the time, energy or resources to be able to care for a loved one with Huntington’s alone.
Dealing with the progressive nature of the symptoms, as well as helping patients to overcome their physiological difficulties can be extremely challenging and place significant strain on even the strongest and healthiest relationships.
This is exactly why each member of our dedicated home care team is fully trained to help clients to manage all aspects of living with Huntington’s. They work collaboratively with loved ones, family and friends to help create a mutually supportive network and a personalised program of care that puts the patient first rather than the condition.
We will work with you to devise fully individualised support plans that enable patients to get the care they need in the comfort of their own home, allowing them the autonomy that they deserve so that they can live their lives with independence and dignity.
Because our care team are trained to provide support for every aspect of living with Huntington’s Disease their expertise transcends the patient’s medical needs. They are proficient in handling a range of duties and responsibilities from the administration of medication to all aspects of personal care. They can help with medication management and liaise with occupational therapists to help mitigate muscular discomfort or difficulty chewing or swallowing.
They understand that while home-based treatment is advantageous for patients with Huntington’s, the nature of the condition means that they may find it harder and harder to manage the various duties that come with running a household. Thus, they are happy with preparing delicious, nutritious meals which are easy to eat while also helping with more sensitive aspects of personal care such as dressing, bathing and going to the toilet.
Emotional support is also a crucial aspect of caring for patients with this condition. This includes emotional support for the patient and their loved ones. They understand that as the condition progresses some very complicated and emotionally difficult decisions need to be made. They also understand that patients with Huntington’s can often feel alone and isolated even when they are surrounded by loved ones. It’s not uncommon for those with Huntington’s to lapse into periods of depression or to experience extreme anxiety as their symptoms worsen. Part of our care team’s duty is to provide extensive emotional and psychological support to the patient and their network.
This is why we consider it essential to match each patient to a dedicated care assistant who is not only eminently qualified to attend to the patient’s medical needs but whose personality is compatible with the patient’s. We aim to provide effective care through great professional relationships with our clients and their families.
Our comprehensive Huntington’s Disease support includes:
- A full assessment which informs the individualised care plan for each patient.
- Personal care that is tailored to the unique needs of each individual patient.
- Visiting care that can be adapted as patients’ conditions progress and their needs change.
- Access to a specialist support team who are highly trained in administering care to patients with HD.
- A range of visit lengths from short visits to long visits, night care or even a full-time live-in carer to administer 24 hour support.
- Support with important social activities to allow patients to go about their lives with as much normalcy as their condition will allow.
- A dedicated and passionate care team with over 20 years’ experience in the care sector.
- Specialist support and expertise whenever you need it 24 hours a day, 7 days a week, 365 days a year.
We understand that when our clients or their loved ones entrust their health and wellbeing to us, this represents a huge leap of faith. That’s why we’ve dedicated over 20 years to earning the trust of our patients, their families and their loved ones. With over 20 years’ experience in the care industry we are perfectly placed to give patients with Huntington’s Disease the very best standard of care allowing them to lead their best lives.
Everything we do is founded on these simple values;
- Care: A client-focused approach which puts our patients first.
- Quality: We constantly strive to bring the highest quality to our service and build value for our clients.
- Innovation: Great care should never stand still. That’s why we’re committed to an innovative approach that is always striving to better meet patients’ needs.
- Excellence: Our goal is always to exceed clients’ expectations through exceptional care and customer service.
If you’d like to know more about how our extensive range of treatments can help you or someone you love with Huntington’s Disease, get in touch with us today!