Because of the energy expended in involuntary movement, most patients will need a large amount of calories to maintain their weight – as much as 5,000 calories a day. They may require several (4 – 6) meals a day, as well as vitamin supplements. It’s better for someone with HD to eat smaller meals throughout the day, rather than a few big ones.
HD patients are prone to constipation, incontinence and other gastrointestinal problems, which can be partly combated with diet. It’s helpful to consult a dietician about a balanced eating plan that provides sufficient nutrients.
Unfortunately, with increasing muscle weakness and loss of co-ordination, it becomes more difficult for people with HD to feed themselves and to swallow. Choking is a danger (and all carers should learn the Heimlich manoeuvre). “Swallowing therapy”, taught by a speech therapist, can be helpful.
People with HD also need to drink a lot of fluids as dehydration is very common. Make sure they always have access to plenty of fresh water. If their swallowing muscles are very weak, it might be a good idea to thicken water and other fluids to a syrupy or milkshake consistency to aid swallowing – commercial thickening additives are available. Bendable straws also make drinking easier.
Further tips for mealtimes:
– Allow plenty of time for meals. Make sure the patient eats slowly and methodically.
– Some foods can be thickened or thinned for easier swallowing.
– Encourage small bites and sips – half a teaspoon or less – and cut solid food into small pieces.
– Soft, blended or pureed foods are easier to swallow. Avoid anything dry, hard or tough.
– Steer clear of food that’s acidic or spicy: these foods are more likely to cause pneumonia if fragments are breathed in by accident.
– Dairy products encourage mucus production, increasing the risk of choking.
– Make use of special plates, mugs and tableware to aid eating and drinking.
– Eat in a quiet, relaxed atmosphere, without noisy distractions. It’s best for the patient not to try to talk while eating.
– The patient should sit upright when eating or drinking, and for half an hour afterwards.
– Stabilise the head and keep it as immobile as possible when eating. Aim to swallow with the head tilted, chin pointing down – it might help to support the head with a pillow or a rolled-up towel.
Eventually, manual feeding may not be enough to provide sufficient calories, or swallowing may become too difficult. In these cases, tube feeding may be required. A tube is led into the stomach or the small intestine, often temporarily via the nose, or more permanently straight into the gut. Nutritional formula is then fed through the tube. A person with a feeding tube may continue to eat and drink if they choose, for the pleasurable taste.
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