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Living with Huntington’s Disease

Formerly known as Huntington’s Chorea, Huntington’s disease usually develops in adulthood and can affect both men and women.

What is Huntington’s Disease?
A hereditary disorder of the central nervous system; it damages certain nerve cells in the brain, getting progressively worse as the brain damage increases over time. It can affect movement, cognition, awareness, perception, judgment, thinking and behaviour.

Early symptoms can include:

  • Mood swings and personality changes
  • Abnormal, involuntary movements
  • Irritability and changed behaviour

As the disease progresses it can cause psychiatric issues, difficulties in feeding and communication problems.

Behavioural Changes
Changes in behaviour can be the most distressing. They can commonly include:

  • Mood swings alternating between excitement, aggression, irritability and depression
  • Antisocial behaviour and apathy
  • Lack of emotions and failing to recognise the needs of others
  • Inability to handle more than one task
  • Difficulty in dealing with complex situations
  • Impulsiveness

Someone who has Huntington’s disease may appear to be lazy, with a lack of drive and initiative. They may develop a lack of interest in self-care and personal hygiene – caused by the condition affecting the brain.

Over time, the uncontrollable movements will become more severe and in the advanced stages, reactions may become slower and muscles more rigid.

Who is Affected by Huntington’s Disease?
As Huntington’s disease is hereditary, there is a family history of the disease in 97% of cases.

How are People’s Lives Affected?
As the disease progresses, its effects are likely to put a strain on family life and relationships. Although treatments can improve any mood disturbance, they can only help to maintain skills used in day-to-day living and these will continue to deteriorate.

People with Huntington’s disease are likely to have trouble eating and swallowing, meaning they are likely to lose weight – in severe cases, they may need a feeding tube. They may have communication problems, finding it difficult to put their thoughts into words and slurring their speech – the effects of the disease are physical and mental.

Diagnosis and Treatment of Huntington’s Disease
If someone suspects they have Huntington’s disease, the GP will refer them to a specialist clinician – often a neurologist – for further investigation of the symptoms. The specialist will assess the symptoms to ascertain the likelihood it’s Huntington’s disease and rule out any other medical condition.

Physical functions such as balance, movements, walking, eye movements, speech and cognition will all be tested. Genetic testing can also be used to confirm a diagnosis.

There is no cure for Huntington’s disease and in the later stages, the person will need full nursing care.

How to Cope with Huntington’s Disease
Professional help to assist a sufferer with their day-to-day living might include occupational therapy, physiotherapy and speech therapy. Speech and language therapy is aimed at improving communication skills, memory and swallowing problems.

Occupational therapy can help with the everyday stuff, while a dietitian can help work out an appropriate eating plan as people with Huntington’s disease often require a high-calorie diet. Medication can help with symptoms such as excessive movement and irritability.

As the disease progresses and the person needs increased care, a specialist bed, like The Bearsnoozzze, provides a safe sleeping solution. With all the features of a cot bed, it has a four-part profiling mattress frame with an adjustable inclination to supply high-quality therapeutic support. The soft, yet sturdy safety sides surround the mattress and can be made to your required height.

The Huntington’s Disease Association is a UK charity. They are devoted to exploring the housing options that are available to sufferers when full-time care is required, including care homes.

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