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.
Sources:
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