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Huntington's Disease and Diet

Why do I need to eat well?

People with HD can find it difficult to maintain their body weight, or they can be underweight. People who are very underweight are prone to infection, have slower wound healing and progressive muscle wasting and lethargy. People with HD usually need a much higher calorie intake than normal.

I am hungry but find eating difficult

You do not have to eat large meals. Small frequent snacks, high in calories (little and often) can be just as helpful. Do not drink large amounts of fluids with meals as these will make you feel full quickly but do try to drink plenty of fluids in between meals. Take your time over meals. Sit comfortably.

Add extra calories

MILK is a good source of protein. Try to drink at least one pint of full cream milk a day. YOGHURT or similar desserts can be used on fruit and puddings. Those with added cream or the thick ‘n' creamy ones are ideal. Avoid low fat or diet yoghurts.

CHEESE is a good source of both protein and calories. Full fat cheeses such as cheddar and Lancashire are the best. It can be sprinkled on creamed potatoes, soft vegetables, soups, and fish in sauce, minced meats and baked beans. Add cheese to omelettes and scrambled eggs. Cheese in a sandwich, on biscuits or on toast is an excellent snack.

MEAT AND FISH in any form is useful. Cook well and serve with plenty of gravy or sauce. Tinned fish in oil or mayonnaise rather than brine or tomato sauce has more calories.

LENTILS AND BEANS are also a good protein source. They can be added to soups, casseroles, and stews, or used just as a vegetable. Baked beans on toast are a useful snack.

Foods you may find difficult to swallow

Raw or hard cooked vegetables, salads, peas, sweetcorn, broad beans, tomato skins; hard fruits such as apples, pears, grapes, pineapples, fruit skins or fruit peel; crusty bread, pre-sliced bread, granary bread, high fibre white bread, bread crusts, toast, crackers and crisp breads; sponge cakes; crisps; hard chips; flaky and puff pastry; hard pastry crusts; nuts and food containing nuts; dried fruit and foods containing dried fruit; shredded wheat.

Trouble Shooting

Dry mouth

If you find you have a dry mouth you may find the following suggestions helpful:

  • Small sips of drinks frequently - a small flask with a lid and straw like a cycling flask can be carried around easily.
  • Sucking ice cubes is useful unless you are likely to swallow or choke on them. You can make these with lemonade or fruit juice as well as plain water.
  • Sorbet

Ask your Doctor about the possibility of prescribing one of the artificial saliva preparations available.

Care of the mouth

To keep your mouth in a healthy condition:

  • Use mouthwashes regularly. Ask your nurse or Doctor about the best one for you to use
  • If your lips are dry, apply a lip salve e.g. Vaseline.
  • Clean your teeth frequently. Use dental floss.
  • Visit your dentist for regular check-ups.
  • If you wear dentures, keep them clean and make sure they fit correctly. Ask your dentist for advice. Dentures are one of the first things to become loose when people lose weight.
  • Sometimes foods may not taste the same or seem to have no taste - good mouth care can minimise this.

Keeping food down

  • Sit upright to eat your meals. Try not to lie flat immediately after a meal.
  • Eat your meals in a well ventilated room and wear comfortable clothing.
  • Try to ensure there is a calm, relaxed environment.
  • Minimise what is going on around you so you can concentrate on eating.
  • Discuss with your doctor, speech pathologist or a dietician any problems regarding eating you may be having.

Changing your diet to suit your needs

At times it may be necessary to avoid foods that you know cause you problems, actually identifying these can sometimes resolve the problem. Sometimes you may need to change the consistency of the food i.e. eat softer or puréed food. If you find you are having difficulty swallowing thin liquids, try thickening them slightly, this often helps and prevents coughing.
There are many thickening agents on the market; your GP can prescribe one for you.

How to get the texture right if you need soft or puréed food

There are three different ways to try:

  • Using a liquidizer. A liquidizer is the quickest and most efficient way giving the best results.

The following tips may help you: Try not to liquidize all of the meal together, liquidize the meat and vegetables separately. You can add sauces to give flavour.

Meat and Fish
Remove all skin, bone and gristle from cooked meat and fish, cut into small pieces add stock or gravy or sauce to get the right consistency.
Cook them to soften before liquidizing, again add stock, gravy or sauce to get the right consistency. Steaming them will maintain their nutrients.
It is easier to blend fruit that is soft, or thawed if frozen. Tinned fruit in syrup is a good choice. Stewed fruit can also be liquidized.

  • Using a Hand Blender. These are cheaper than liquidizers but take longer and some foods may not cooperate.
  • Using a sieve and spoon. After cooking, some food can be forced through a sieve. This may need to be done more than once.

Whichever method you use it is important to remember:

  • Meals need to look attractive
  • All utensils should be kept clean
  • Meals may need warming during serving if feeding takes time.
  • Remember a calm relaxed environment will help!
  • Nutritional supplements which can help to add calories to your diet are available.
  • A dietician can advise you on your individual needs. Referral can be arranged by your GP.
  • A referral to a speech pathologist can be helpful in resolving some of your swallowing problems.