Huntington's Disease Support Information


Index~HD Search
Section 1 General Information
Section 2 HD Specific
Section 3 State Info
Section 4 Misc
Hunt-Dis Scholarship Fund
Advanced Stages of Huntington's Disease
Caregivers Handbook
Preventing Swallowing Problems

Swallowing is a very complex activity. It involves coordinating the opening and closing of the mouth and lips and chewing while inhaling and exhaling. Food needs to be mixed with saliva, moved to the back of the tongue, and sent on its way down the
esophagus by the swallow reflex. Those with HD are at serious risk of choking, aspirating, and even suffocating.

Preventing these problems in advanced HD is an ongoing challenge to a caregiver. Stuffing too much food into the mouth; gasping for air; gulping liquids; and poorly coordinating the complex movements
needed to bite, chew, move, and swallow food increase the likelihood that food will unintentionally be aspirated. A speech therapist can make recommendations regarding positioning the patient, texture of food, and other issues that will make swallowing easier.

Proper positioning assures that the person is comfortable, reduces involuntary movements, inhibits reflexes, and accommodates any postural changes caused by dystonia.
A "chin-tuck" manoeuvre can help to direct food toward the esophagus. Sitting upright with support for the head and neck can help to avoid the hyperextension of the neck that increases the risk of choking.

As a general rule, thicker and colder liquids are easier to swallow. Thin liquids are the most difficult because they are virtually impossible to control within the mouth. Water may be particularly dangerous!
However, liquids from coffee to orange juice to soft drinks can be combined with commercially available thickeners, which change the texture without significantly changing the taste.

Drinking through a straw nearly always makes it easier to swallow liquids, especially thin ones, by limiting the amount taken at a time and by directing it to the back of the mouth. Check the length of the straw; one that is too long can injure the back of the throat or cause choking.

There are many different styles of "sport" bottles, cups, and mugs available today. Many of them are insulated to keep drinks hot or cold and have flexible straws attached. Since they have been designed to facilitate drinking liquids in a moving car or while engaged in outdoor athletic activity, many of them have grips that
make them easier to hold, straws or "sippy" spouts that guide the liquid to the mouth, and covers that prevent spills. They are widely available throughout North America. Many people with HD find one that is particularly effective and comfortable and carry it with them
throughout the day. Cups with spout style covers are also available in medical supply stores or catalogues.

It's a common safety practice to ask the person you're helping to do a "dry swallow" (that is, a swallow with no food or liquid in the mouth), after each time food is swallowed.
Pay close attention to food temperature; many people with HD have an altered sense of temperature and may burn their tongue or mouth on hot foods.

Some people with HD tend to "stuff" food; that is, place more food than they can possibly chew and swallow into their mouth as quickly as possible. This behaviour greatly increases the risk of choking and aspiration and should be discouraged. Providing or feeding them with a teaspoon will encourage small amounts per mouthful.

It's a difficult period when chorea progresses to a degree that the person with HD isn't regularly getting enough food into his mouth for adequate nutrition, and a large amount of food is wasted in the
struggle to feed himself.
Unaware of how nutritionally inefficient his eating has become, he may see your intervening to feed him most of his meal as a final loss and a symbol of his dependence on others for his sustenance.

By assisting him with small parts of the meal earlier than he really needs your help, he may become accustomed to your help and be more willing to accept it when it is absolutely necessary for his safety and nutrition.
For example, spooning a thick shake into his mouth at the end of a tiresome meal or placing a few pieces of a snack into his mouth at various intervals throughout the day may gradually help him to accept this degree of assistance.

A final thought: Since this person may be hungry, tired, irritable, and unable to wait, it may be wise to help him eat first if you have several people to assist at the same meal, even though he may take longer to assist than others in your care. If you can provide the person with HD with a comfortable experience eating, meal after
meal, then you are an excellent caregiver!


If you've helped someone with a swallow-ing disorder to eat, you know that it is often a difficult task for both of you. You might recall him coughing after swallowing a mouthful of food and waiting through that tense moment for him to stop and take his next breath
to assure you that he is not choking.

Never consider coughing during a meal as a routine part of eating. Coughing is a defensive reflex to prevent choking. Consider it Mother Nature's alarm that there is a serious problem to be addressed
immediately. Report coughing while eating to your supervisory nurse
immediately for assessment.

Choking, indeed, is a very serious risk factor. Be aware of this every time you help someone with HD to eat a meal.
Most people with HD develop a swallowing disorder, or "dysphagia", at some point in the course of their disease. Often the first sign is a serious unanticipated choking episode. Choking and aspiration pneumonia are not uncommon causes of death in people with HD.
Individuals with swallowing problems need to have their temperature and lung sounds monitored regularly for signs of pneumonia.

Learn the Heimlich manoeuvre so you'll be prepared to respond to a choking incident. Make sure everyone who assists this person to eat is practiced in the manoeuvre. It may be reassuring to explain or demonstrate it to him if he has previously had a serious choking incident.

Listen very carefully to the instructions you are given on how to help this person eat his meal. Take no shortcuts; take your time. Check for proper positioning every time you put food in his mouth.
Eliminate as many possible distractions in the room as you can. Double-check the
texture of the food that's been specially prepared for him. Be certain liquids are thickened!

Remember, this person may be very hungry and very tired and want to
race through the meal. Take your time for safety's sake. If helping him eat takes too long or is too tiring for him, arrange to have him eat less food more often throughout the day.


Physicians or speech/language therapists may recommend that people with serious swallowing problems and an increased risk of choking eat a diet of puree consistency. At home or in long-term care facilities this is typically done by placing each item of a meal into a food processor and blending it beyond recognition, except for its basic colour.

As if the anxiety of choking were not enough, looking forward to a daily menu of mush that looks like commercial baby food only adds further insult to injury.
However, there is an alternative. You can plan and prepare an entire menu cycle of moulded dishes, casseroles and loaves that taste, smell and look appetizing, but are the consistency of puree.
During the holiday season, department and specialty stores sell plastic candy moulds to make lollipops or chocolates in your kitchen. Like those moulds of bunnies, Santas, and ghosts, moulds of chicken
legs, pork chops, broccoli florets, pear halves, and fish filets are also available. A selection of these will make your meals much more attractive.

For example, cook a chicken, remove its meat, place it in a food processor, and blend it to puree consistency. Add bread crumbs, egg whites, or a commercially available thickening product. Then
place this chicken mixture on a plastic sheet with the multiple chicken legs moulded into it and freeze it. When chicken is on the menu, pop one leg from the mould, baste it, and heat it in a convection oven. It maintains its moulded shape and your kitchen smells like you're cooking... chicken!

With gravy and garnish, it looks and smells just like the unaltered chicken the rest of the family is having for dinner. It has the consistency of a chicken pate. It looks so real, it's not uncommon for nurses' aides to return moulded food to the kitchen because it looks like kitchen staff forgot to puree it!

By planning a menu of these moulded dishes and loaves (meat loaf, for example) and casseroles (tuna casserole, for example) and paying close attention to its required consistency, you can serve this pureed
cuisine as an alternative to "baby food" in a three-section plate, originally designed for infants.
Nearly every major institutional food
supplier in North America distributes these moulds to long-term care facilities, hospitals and other health care settings. Depending on the size of the facility, it rarely incurs additional costs or labour hours in the dietary department to prepare these pureed foods in moulds. At home, one Saturday of cooking and moulding can produce enough moulded dishes to last many weeks.


As swallowing becomes increasingly impaired, eating by mouth compromises
adequate nutrition. At this point some people with HD may choose to receive their nutrition through a gastrostomy tube.
Although it is a relatively minor surgical procedure, placement of a feeding tube has
greater implications than simply enhancing nutrition. Deciding whether
or not to have a feeding tube forces the individual and his family to confront difficult emotional or spiritual issues about extending life, the quality of life, and providing basic sustenance to prevent starvation. These are very personal decisions, and your understanding and support are needed.

Placement of a gastrostomy tube (commonly called a "g-tube"), a peri-
epigastric tube (commonly called a "PEG"), or a jejunostomy tube (commonly called a "j-tube") may not mean that it is no longer possible to eat by mouth. It is often good practice to continue to take some favourite foods orally. Remember, too, that placement of a feeding tube can be a short-term intervention to help build body weight so that the individual can resume eating primarily by mouth.

If he has a feeding tube, the spot where the tube is placed is particularly prone to infection. Look at this area closely whenever you feed or change
Pay close attention to washing, rinsing, and drying the skin around the tube when you assist him with bathing. Remember to wash your own hands. Follow any special instructions you may be given to keep the tube and the area around it clean.
Be sure to report any signs of infection to
your supervisory nurse so they may be assessed. Be sure that he is always
positioned so that his head is above the level of his stomach to prevent regurgi-tation or aspiration.

People with severe chorea may find that the area around the tube becomes sore or tender from the repeated involuntary movements of the arms and legs touching or pushing against the area around the tube. Some may find the site so irritating that they tug at the tube, which loosens it. They may injure themselves or even remove the tube.
To protect them from accidentally
irritating the area or to prevent having to replace the tube, a doctor may order a binder to wear over the site. It's important to put the binder on correctly. If the binder does not fit snugly and smoothly, it will further irritate the skin rather than soothe the discomfort.

When Considering a Feeding Tube

Many people with HD and their families struggle with the decision of whether or not to use a feeding tube. It is never an easy decision, and it is best made well in advance of a crisis.

Here are some considerations about feeding tubes.

A feeding tube may be called for if:
.. there is a nutritional crisis.
.. there is a hydration crisis.
.. there is repeated aspiration pneumonia.
.. there is a severe swallowing problem.
.. there is great fear of choking or aspirating.
.. it makes continuing an active life easier.
.. there are other conditions, disorders, or complications.

Placement of a feeding tube may be appropriate if previous attempts at continuing to eat by mouth have included:

.. changes in position.
.. changes in the consistency of the food.
.. a speech therapist's swallowing evaluation.

Placement of a feeding tube may be appropriate after the following inter-ventions have been tried without success:
.. medication to make swallowing easier.
.. interaction between the person and those helping him to eat.
.. adjustments to the environment in which he's eating.
.. achievement of a greater degree of relaxation while eating.
.. consideration of any other psychological factors.

In some cases placement of a feeding tube may be detrimental. The "right" decision requires that everyone involved make every effort to make their contribution as informed as possible.

Caregiver Tips
a.. Eating should be slow and deliberate.
b.. Be sure the person is positioned properly.
 c.. Choose food of appropriate texture and temperature.
 d.. Learn the Heimlich manoeuvre.
e.. Report any coughing or choking incident to your supervisor.
f.. Make sure he takes small bites and sips.
g.. Alternate solids and liquids.
h.. Have him "dry swallow" or "double swallow" between bites.
 i.. Have him sit up after eating.
Some Warning Signs of Swallowing Problems
Any one of these signs could indicate a serious problem with swallowing. Consult your physician or nursing supervisor immediately.

a.. Clearing the throat frequently.

b.. A voice that sounds wet or "gurgly".
c.. Spoken or nonverbal expressions about fear of eating,swallowing, or choking.
d.. A delay in swallowing after food has been chewed.
 e.. Holding food or liquid in the mouth without swallowing it.
 f.. Exaggerated movements of the jaw, lips, or tongue.
g.. Tilling the head back to eat or drink.
h.. Swallowing several times on one bite.
i.. Food or liquid falling out of the mouth.
j.. Food left in the mouth after swallowing it or finishing a meal.
k.. Coughing during or after the meal.
l.. Fatigue or exhaustion after or during the meal.
m.. Significant weight loss over time.