Because of the deterioration in large and fine motor skills in people with Huntington’s disease (HD), many ordinary life occupations become very hard for them to perform. Problems with cognition, such as memory failure, can also make certain activities difficult.
Occupational therapy (OT) focuses on maintaining and enhancing disabled people’s ability to engage in daily occupations. An occupational therapist can identify problem areas and work with the patient and their family to find practical solutions.
This can be done by teaching new skills and techniques, by modifying tasks, or by adapting the environment. Often this involves the use of special adaptive equipment. This can go a long way towards improving a person’s quality of life, comfort and safety, and helping them maintain independence for as long as possible.
Occupational therapy is particularly useful in the areas of:
– Grooming and dressing
– Eating and drinking
– Improving memory and concentration
– Safe mobility
– Personal hygiene and bathing
Each person with HD will require a different programme of OT, according to their specific situation. For example, if the patient is still quite functional, an occupational therapist can help to assess whether they’re safe to drive, and if their work environment can be adapted to accommodate their disability.
An occupational therapist will also look at the home environment and assess where potential dangers or inconveniences lie, and what can be done to modify them. It’s a good idea to get this done as early in the course of the disease as possible.
Recommended modifications may include:
– Grab-bars in the shower stall, next to the toilet, and in hallways and stairwells
– A shower bench to allow seated showering, with a hand-held shower-head
– Non-slip strips in the shower stall or bath, and non-slip bathmats
– Elevated toilet seats
– Rails on beds to stop someone falling out at night; or raised beds to allow for easy wheelchair transfer. (Some people prefer hammocks.)
Other tips for making the home safe and easy to use:
– Make rooms and living spaces wheelchair accessible. This may involve widening doorways or installing ramps.
– Keep possibly dangerous items (like cleaning chemicals, hot cooking pots or weapons) well out of reach. Make sure the stove cannot be mistakenly switched on.
– Minimise the amount of furniture, which can create obstacles to movement; favour sturdy furniture that can be used as a support or to stop a fall.
– Try to arrange your living space so that the person with HD doesn’t need to use stairs.
– Make sure your phone has important numbers pre-programmed, so that a call can be made with just a press of a button in a crisis.
– Some people with HD become paranoid or delusional, and may tend to wander from home: make sure your security measures take this into account.
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