Physiotherapy for Huntington’s disease
What is Huntington’s disease?
Huntington’s disease (sometimes also known as Huntington disease) is a progressive degenerative neurological condition.
It is named after a physician called George Huntington, who first described the condition in 1872i.
Symptoms usually start between the ages of 35 and 45 years, although they can begin anytime from childhood to old age. Huntington’s disease (HD) leads to changes in various parts of the brain. This results in:
The most common movement disorder seen in people with HD is called chorea – a term that comes from the Greek word meaning ‘to dance’. In the early stages, people with HD may appear to be restless or fidgety. In later stages, they may experience uncontrollable flailing or writhing of their limbs, which can significantly interfere with function.
HD can also cause altered muscle tone, loss of coordination, and symptoms like those of Parkinson’s disease, such as slowed movement and instability. In the late stage of HD, chorea may be replaced by a marked loss of movement, along with rigidity (stiffness).
Other movement-related problems associated with HD include speech and swallowing difficulties, abnormal eye movements and tics.
HD is also associated with a loss of cognitive function, causing symptoms like those of dementia. This can include behaviour changes such as irritability and loss of interest in usual activities, along with memory problems.
People with HD can experience mental health issues such as depression, and occasionally manic episodes like those of bipolar disorder. Some people with HD can also develop personality changes, sleep and sexual problems, and symptoms like those of schizophrenia or obsessive-compulsive disorder.
HD affects everyone differently and people can have one or all of these issues to varying degrees. The rate of progression also varies from one person to another.
What causes Huntington’s disease?
Huntington’s disease is caused by a mutation in a gene called huntingtin, which was discovered in 1993ii. Everyone has this gene, but only people who inherit the mutation will develop HD. Each person with the mutation will eventually develop the condition. Their children have a 50% chance of developing HD.
Physiotherapy treatment for Huntington’s disease: an overviewHuntington’s disease is a progressive disorder which can’t be stopped or reversed, and there is no cure. However, allied health therapeutic supports like physiotherapy can support people with HD to continue participating in everyday activities like self-care, work, family and community life. Physiotherapy assessment of Huntington’s disease will typically look at your ability to move around within your home, maintain your balance, and perform functional tasks such as climbing stairs and getting in and out of a car. Your physiotherapist will ask you about your medical history, current concerns, and goals.
Huntington’s disease physiotherapy might include education about staying physically active
- Mobility, transfer and balance training – to help maintain your ability to get around at home and in the community
- Prescription of assistive devices such as walking aids
- Postural training and positioning – to support joint health and help prevent problems like pain and stiffness
- Education about maintaining physical activity and exercising safely
- Falls prevention training.
Physiotherapy and Huntington’s disease: What the evidence shows
Research into physiotherapy for Huntington’s disease has increased over the last decade or so. Recently, several researchers have analysed results from various smaller studies into physiotherapy and exercise interventions for Huntington’s disease.
For example, a 2017 systematic review looked at the results from 20 studies that met specific research criteriaiii. The authors noted their findings provide early support for the benefits of exercise and physical activity in Huntington’s disease in terms of movement, walking speed and balance. Patients also reported a range of physical and social benefits.
Similarly, a review of six studies published in 2019 found that exercise training had beneficial effects on cardiovascular and cell energy production in people with HDiv.
Physiotherapy for Huntington’s disease can help to maintain movement and cardiovascular health
Huntington’s disease physiotherapy guidelines
Evidence from studies like these has led to the development of Huntington’s disease physiotherapy guidelines. Published in 2020, the guidelines are based on a review of 26 studies of physiotherapy interventions for people with Huntington’s disease. The results showed there is strong evidence to support physiotherapy interventions to improve fitness, movement, and walking in people with HD.
These guidelines advise the following Huntington’s disease physiotherapy exercises and strategies.
Moderate intensity aerobic exercise can improve endurance and the ability to move. Types of aerobic exercise include fast walking, running, and riding a stationary bike. The activity should get you breathing faster but shouldn’t be so hard that you can’t talk. The guidelines advise aiming for 20 to 30 minutes of aerobic exercise at least three times per week. Your physiotherapist can help you find a suitable type of exercise that you enjoy.
In addition to moderate intensity exercise, aim to move more and sit less throughout the day.
Activities that build muscle strength can help to improve or maintain your movement. Examples include exercises using resistance bands, weights, or body weight (such as squats, lunges and push ups).
Walking and transfer practice
Regular walking and practice of transfers (such as getting in and out of chairs or bed) may improve your ability to move and get around. You might do this on your own or with help from your physiotherapist.
If you need assistance to walk, your physio might prescribe an aid such as a four-wheeled walker to help you move around safely and independently.
These help to keep your joints moving freely and prevent stiffness. You might do stretching exercises yourself or with help from your physio or support person.
If you have difficulty maintaining good posture while sitting or lying down, your physiotherapist might recommend a special chair or other positioning devices, such as wedges, pillows or bed rails.
Your physiotherapist might recommend these to improve your breathing function and help keep your lungs clear.
A physiotherapist may be involved in supporting people in the late stage of HD to have the best possible wellbeing and quality of life. For example, they may recommend assistive devices to help you continue to participate in your family and community, or modifications that enable you to remain at home.
Training support people
Formal and informal supports often play a crucial role in supporting people with HD, especially as the condition progresses. Well trained support people can help someone living with Huntington’s disease to remain more independent and active at home and in the community.
Your physiotherapist might train you to support your loved one with activities like mobility, transfers, positioning and doing their exercises.
It’s important to remember that these are guidelines. There’s no one-size-fits-all-approach to physiotherapy for Huntington’s disease. As experts in movement and function, physiotherapists design evidence-based programs tailored to each person’s needs and goals.
Huntington’s disease physiotherapy with Active AbilityAt Active Ability, our NDIS registered physiotherapists have significant experience working with people with HD and their families. We take the time to listen to your needs and design a personalised plan to help you achieve your goals. As well as NDIS physio, Active Ability has NDIS registered clinical dietitians and accredited exercise physiologists. This means we can provide multidisciplinary support to help you maintain or improve your independence, health and quality of life. With no waiting list or travel charges, you can start physiotherapy as soon as you’re ready and make the best use of your NDIS funding. To learn more about how we might be able to help you, contact our friendly team on (02) 8678 7874, firstname.lastname@example.org or via our contact form.
[i] – Annals Indian Academy of Neurology (2016). The story of George Huntington and his disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4782548/. Accessed online 2.12.2022.
[ii] – Huntington’s Disease Society of America (n.d.). Overview of Huntington’s Disease. https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/. Accessed online 2.12.2022.
[iii] – Journal of Huntington’s Disease (2017). Physical Therapy and Exercise Interventions in Huntington’s Disease: A Mixed Methods Systematic Review. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5676854/. Accessed online 2.12.2022.
[iv] – Tremor and other hyperkinetic movements New York (2019). Exercise in Huntington’s Disease: Current State and Clinical Significance. https://pubmed.ncbi.nlm.nih.gov/30783551/. Accessed online 2.12.2022.