Overview of Huntington’s Disease
Huntington's disease is a progressive brain disorder that significantly impacts an individual's physical, cognitive, and emotional functions. It was named after Dr. George Huntington, who first described it in 1872. This genetic condition gradually worsens over time and, for many, becomes fatal after a period of up to 20 years.
In this article, we will explore Huntington’s disease in more detail. We will discuss the symptoms and how to help people live with the condition, including the use of profiling care beds to make them more comfortable and safer for users and their carers.
At Opera Beds, we’ve helped thousands of people with medical conditions get a better night’s sleep and improve their comfort and quality of life by guiding them to the perfect bed for their needs. Get in touch with our team today if you’d like help choosing a bed for Huntington’s disease.
What is Huntington's Disease?
Huntington's disease (HD) is an inherited disorder that results in the progressive deterioration of nerve cells in the brain. This condition significantly impacts a person's ability to function, causing movement, cognitive, and psychiatric issues. While symptoms can manifest at any age, they typically begin between a person's 30s and 50s and worsen over time, ultimately resulting in considerable disability.
Causes of Huntington’s disease
Huntington's disease (HD) is caused by a genetic defect in a single gene on chromosome 4. This defect involves a specific sequence of DNA called a CAG repeat. In people with HD, this CAG segment is repeated more than normal, leading to the production of an abnormal protein called huntingtin. This abnormal protein gradually damages specific brain cells, although the exact mechanism of this damage is not fully understood.
Who is affected by it?
As mentioned previously, Huntington’s disease is hereditary and passed down from a parent. For those with the condition, symptoms can show at almost any age, however, most develop problems between ages 30 and 50. HD affects both men and women and an estimated 7,000 people are living in the UK with it.
A parent with the Huntington’s disease gene has one good copy of the gene and one faulty copy. This means there's a 50:50 chance that each of their children will inherit the faulty gene and develop Huntington’s disease. In turn, affected children can pass the gene to their own children. There's also a 50:50 chance that each of their children won’t inherit the faulty gene and therefore won't develop Huntington’s disease. Unaffected children cannot pass the gene to their children. Sometimes, Huntington's disease can occur without a family history if one parent was never diagnosed although this is very rare.
Since the discovery of the affected gene in 1993, it’s now possible to confirm the presence of the mutated gene through a blood test, allowing identification of the potential disease long before any symptoms are present. This process is called predictive testing and is available to the children of parents diagnosed with Huntington’s disease if they so wish.
Symptoms of Huntington’s Disease
Classified as a hereditary neurodegenerative disease, Huntington’s has a deep and widespread impact on all areas of a person’s life, and the symptoms gradually worsen over time. The average life expectancy after the initial diagnosis is around 20 years, and in the latter stages of the condition, full-time nursing care is often required.
Physical symptoms can include:
- Involuntary jerking or writhing movements (chorea)
- Stumbling and clumsiness
- Problems swallowing, speaking and breathing
- Difficulty moving
- Muscle problems, such as rigidity or muscle contracture (dystonia)
Behavioural symptoms can include:
- Depression, which includes feelings of sadness, apathy, or irritability
- Social withdrawal
- Insomnia
- Fatigue and loss of energy
- Frequent thoughts of death, dying, or suicide
- Obsessive-compulsive disorder (OCD), is a condition marked by recurrent, intrusive thoughts and repetitive behaviours
Managing Huntington’s Disease
As a degenerative disease, individuals with Huntington’s progressively worsen over time. The disease is broken into three stages:
Early Stage – diagnosed individuals can mostly continue to live uninterrupted, including working and driving. Involuntary movements and dementia symptoms are mild if at all present.
Middle Stage – individuals need assistance with basic daily activities. Symptoms such as weight loss, swallowing difficulties and more severe involuntary movements are often present.
Late Stage – in the late stage of Huntington’s disease individuals require around-the-clock care, often in a hospital or nursing home. Symptoms are very severe and it’s possible that walking and speaking are no longer possible.
As the disease progresses, individuals find it more difficult to look after themselves and the level of care required increases. As such, a profiling care bed can be a great investment for helping manage HD with care and comfort.
Profiling Beds Explained
Profiling beds, also commonly referred to as hospital beds are designed to facilitate care for those with a disability, health condition or limited mobility. Unlike a traditional bed at home, these beds have several features to make life easier for someone with care needs. These include:
- Height adjustment – where the whole bed raises and lowers to find the perfect access height. Raising the bed also gives a safer working height for carers without hurting their backs.
- Backrest adjustment – allows the user to sit up properly without needing pillows, it also can help with feeding and administering medication in bed.
- Leg rest adjustment – lets the user lift their legs easily which helps improve circulation and blood flow.
How Profiling Beds Help with Huntington’s Disease
Living with Huntington's disease poses many challenges, especially as the condition advances and affects mobility, cognitive function, and overall well-being. For individuals dealing with these difficulties, investing in a profiling bed not only provides a comfortable space for users but also assists with their care needs, keeps them safe and can be an invaluable asset.
Let’s explore how they can help you or a loved one with Huntington’s disease:
Enhanced Comfort and Positioning
Profiling care beds are designed with multiple adjustable sections that allow users to change the bed’s configuration easily. This feature is particularly beneficial for people with Huntington's disease, as it helps in:
- Relieving pressure points: Adjustments can reduce the risk of pressure sores and enhance overall comfort.
- Improving sleep quality: Customizable positions can help users find a comfortable sleeping posture, crucial for those experiencing muscle rigidity or dystonia.
Improved Safety and Independence
Safety is a paramount concern for individuals with Huntington's disease due to involuntary movements and balance issues. This can lead to serious injuries from striking hard surfaces. However, profiling beds can offer several safety benefits, these are:
- Height adjustment: Allows the bed to be lowered for easy entry and exit, reducing the risk of falls and fostering a degree of independence.
- Side rails: Prevent falls and provide a sense of security.
Assists Carer Givers
Caring for someone with Huntington's disease can be physically demanding. Profiling care beds ease this burden by:
- Provide a safe working height: the height adjustment feature reduces the strain on caregivers during tasks like bathing, dressing, and repositioning, making caregiving more ergonomic.
- Ease of access: Facilitates medical examinations and treatments, improving the overall efficiency of care.
Better Management of Symptoms
Specific symptoms of Huntington's disease, such as difficulty swallowing and respiratory issues, can be managed more effectively with profiling care beds:
- Head elevation: helps in reducing the risk of aspiration during meals and improves breathing by elevating the head and upper body.
- Customisable support: allows for optimal body positioning, which can alleviate some of the physical discomfort associated with the disease.
Opera Sleep Safety System for Huntington’s Disease
As a designer and manufacturer of profiling care beds, we’ve created a care bed package to meet the care requirements for individuals with Huntington’s disease.
Our Sleep Safety System is made up of our Signature Profiling Bed and padded surrounds. The Signature Profiling bed is built from one of our most durable frames, which has been constructed to ensure longevity in challenging environments whilst maintaining a visually appealing design.
The hard surfaces of the bed are covered by a padded cocoon surround, greatly reducing the risk of impact injuries whilst in the bed. The bed also features full profiling capability, with both height and position adjustments meaning it’s ideal for nursing care and ease of access. The cocoon itself is attached by adjustable fixing clips around various points of the bed, meaning it can be easily removed and reattached as and when required.
How to purchase our Sleep Safety System
If you or a loved one have Huntington's disease, we’re here to help you find the right solution. Our dedicated team of advisors are on hand to guide you through the process, starting with a no-obligation consultation.
Our friendly advisors will ask a series of questions to better understand your exact needs, budget, and timeframe, before providing suitable recommendations. Your consultation can be by phone, video or by visiting our showroom.
Contact our team to learn more about the Huntington’s bed package and speak to our helpful advisors.
