Huntington's Awareness Month: Mindful of Huntington's

An image of a pink head with puzzle pieces and an image of an art armature holding one of the pieces. It reads Huntington's Disease Awareness Month


May is Huntington’s Disease Awareness Month. This year the Huntington’s Disease Association are bringing awareness to the cognitive and behavioural symptoms of the disease. Often, Huntington’s Disease is viewed as a movement disorder, but the disease is far more complex. Huntington’s Disease is a rare disease, affecting just 7 in 100,000 in the UK. It is a hereditary, degenerative brain disorder which significantly reduces life expectancy and is caused by a faulty gene in your DNA. The symptoms of Huntington’s vary widely between each individual; however, the three main symptoms are:

  • Movement (involuntary movements such as jerking of limbs, face and body)
  • Cognition (difficulties with speech, planning and thinking)
  • Behaviour (changes in personality, psychiatric behaviour and irritability)

During the early stages, cognitive and behavioural symptoms are harder to recognise and diagnose and it has been found that these changes can predate the physical symptoms by up to 15 years. 

Cognitive and behavioural symptoms and how they present 

Individuals with Huntington’s may start to experience executive dysfunction. Executive Dysfunction is when a person loses the ability to manage their own thoughts, actions and emotions, and struggle to pull lots of thoughts together at once. This means they also find it difficult to prioritise and forward think and they lose every day skills such as organisational skills. This has a significant impact on life at home and in the workplace, where individuals may come to the realisation they can’t preform their roles in the same way. Often, people with Huntington’s go through stages of depression and low mood as they experience frustration at not being able to perform day-to-day tasks.

Due to some individuals experiencing low self-esteem, deriving from not being able to process or perform tasks as they used to, they may lack initiation and interest in skills, activities and hobbies that they used to enjoy. Whilst it is important to maintain activities and skills, it is important to recognise that sometimes interests may change due to the psychological aspects of the disease. Whether it is maintaining old interests or cultivating new ones, it is important for the following reasons:

  • It gives a sense of purpose.
  • It helps with self-esteem.
  • Keeps the individual active.
  • The activity might be meaningful to them.

Huntington’s not only affects the individual, but it also affects the lives of their families and loved ones. Although there is no cure for it there are certain steps that can be taken to help manage day-to-day life. 

  • Speech and language therapy, and occupational therapy can help with communication and physical symptoms.
  • Attending counselling or support groups for Huntington’s can help support the individual and their family.
  • Regular exercise can improve mental well-being, but it can also help to delay some of the physical symptoms by maintaining muscle strength.
  • The use of organisation aids such as medication alarms and alarm clocks can be helpful in keeping the individual independent and act as reminders for daily tasks.
  • If physical symptoms are prominent, walking aids and wheelchairs can help to enable the individual to still be active and live their life fully.
  • Daily living aids such as shower stools, handrails and perching stools can help to combat balance problems.
  • Assistive furniture such as profiling beds and riser recliner chairs can help the individual to stand on their own from a lying or seated position, if they are having mobility issues.
An image of a rising arm chair, a medication watch alarm, and a shower stool 

We hope that you have found this article informative and helpful. 

If you wish to find out any more about the types of products mentioned in this article please click on the bold and underlined text, or take a look at some of the product categories listed below. 

If you are looking for more support or advice on living with Huntington’s Disease, please take a look at the links below. 

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