In Huntington’s disease (HD), problems with voluntary movement and posture become progressively worse, until eventually many people are confined to wheelchairs.
Physiotherapy can play an important role in maintaining muscle function and mobility for as long as possible, and in reducing complications. There’s also evidence that physiotherapy can slow cognitive decline.
The aims of physiotherapy are broadly to:
• Improve strength and fitness
• Improve respiration
• Correct balance, gait and posture
• Improve mobility and co-ordination
• Help prevent falls
• Teach wheelchair use
• Improve grasp and fine motor co-ordination
Each individual’s exercise regime will be different, depending on their needs and deficits. Various exercises focus on different muscles, or are designed to improve stability and flexibility. Treatments may include limb manipulation, stretching, massage, electrotherapy, hydrotherapy, treadmills, exercise bicycles and weights.
The nature of the therapy will change as the patient moves through the different stages of the disease.
In the initial stages:
• The neck and trunk muscles often weaken, affecting posture and gait. The physiotherapist will assess and alleviate this.
• Exercise at this stage combats the depression that commonly accompanies a diagnosis of HD. It’s important for patients to get into the habit of exercising as much as possible. The physiotherapist can suggest suitable exercises for a particular patient, such as outdoor walks.
• Deep breathing exercises are useful for maintaining lung capacity.
• Exercises to maintain hand movement and grip should also be begun.
In the middle stages:
• Involuntary movements usually get worse. Walking is affected, falls are frequent, and fitness declines. Nonetheless, people need to stay active. The physiotherapist can ensure this happens safely, and suggest specific exercises to aid mobility.
• The physiotherapist can also recommend walking aids and protective clothing.
• As the person with HD will be sitting much more in this stage, it’s important that they maintain good posture. Slouching will result in poor lung function and changes to musculature. Trunk-stabilising exercises can help the person support themselves in their seat.
• At this stage, people with HD and their carers should learn ways to safely transfer from wheelchair to seat or bed.
• Fine hand movements become very difficult, and these exercises should continue. Exercises for the feet can also improve balance.
In the later stages:
• Many people with HD eventually become confined to wheelchairs, and physiotherapy will focus on sitting posture, increasing comfort and minimising complications like pressure sores and chest infections. Specialised wheelchairs may be necessary.
• People spend more and more time in bed, where good body position is also important.
• If the person can stand, using a stick or walking frame, they should do so periodically to maintain muscle tone and bone density. This will also reduce complications.
• Muscle contractions and rigidity can become painful, and patients should stretch regularly. Stretching and exercising may be easier if done supported by water in a pool.
• Chest infections are common. A physiotherapist can monitor the chest, and work with a speech therapist to reduce the danger of choking and breathing in fluid, which leads to infection.
Stubbs, B. The Role of the Physiotherapist in HD, Newsletter, June 2007, HD Association, UK. Pipathsouk, A. Physical Therapy and HD Treatment and Management, HOPES. Caring for People with HD; Searle, J. Communication Strategies for those with HD; and Dubinsky, R. Home Safety in HD, Kansas University Medical Center. National institute of Neurological Disorders and Stroke, www.ninds.nih.gov. Huntington’s New South Wales, www.huntingtonsnsw.org.au. HD Society of America, www.hdsa.org