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What Kind of Care Does the Individual with HD Need?
Although a psychologist or psychiatrist, a genetic counselor, and
other specialists may be needed at different stages of the illness,
usually the first step in diagnosis and in finding treatment is
to see a neurologist. While the family doctor may be able to diagnose
HD, and may continue to monitor the individuals status, it
is better to consult with a neurologist about management of the
varied symptoms.
Problems may arise when individuals try to express complex thoughts
in words they can no longer pronounce intelligibly. It can be helpful
to repeat words back to the person with HD so that he or she knows
that some thoughts are understood. Sometimes people mistakenly assume
that if individuals do not talk, they also do not understand. Never
isolate individuals by not talking, and try to keep their environment
as normal as possible. Speech therapy may improve the individuals
ability to communicate.
It is extremely important for the person with HD to maintain physical
fitness as much as his or her condition and the course of the disease
allows. Individuals who exercise and keep active tend to do better
than those who do not. A daily regimen of exercise can help the
person feel better physically and mentally. Although their coordination
may be poor, individuals should continue walking, with assistance
if necessary. Those who want to walk independently should be allowed
to do so as long as possible, and careful attention should be given
to keeping their environment free of hard, sharp objects. This will
help ensure maximal independence while minimizing the risk of injury
from a fall. Individuals can also wear special padding during walks
to help protect against injury from falls. Some people have found
that small weights around the ankles can help stability. Wearing
sturdy shoes that fit well can help too, especially shoes without
laces that can be slipped on or off easily.
Impaired coordination may make it difficult for people with HD
to feed themselves and to swallow. As the disease progresses, persons
with HD may even choke. In helping individuals to eat, caregivers
should allow plenty of time for meals. Food can be cut into small
pieces, softened, or pureed to ease swallowing and prevent choking.
While some foods may require the addition of thickeners, other foods
may need to be thinned. Dairy products, in particular, tend to increase
the secretion of mucus, which in turn increases the risk of choking.
Some individuals may benefit from swallowing therapy, which is especially
helpful if started before serious problems arise. Suction cups for
plates, special tableware designed for people with disabilities,
and plastic cups with tops can help prevent spilling. The individual's
physician can offer additional advice about diet and about how to
handle swallowing difficulties or gastrointestinal problems that
might arise, such as incontinence or constipation.
Caregivers should pay attention to proper nutrition so that the
individual with HD takes in enough calories to maintain his or her
body weight. Sometimes people with HD, who may burn as many as 5,000
calories a day without gaining weight, require five meals a day
to take in the necessary number of calories. Physicians may recommend
vitamins or other nutritional supplements. In a long-term care institution,
staff will need to assist with meals in order to ensure that the
individual's special caloric and nutritional requirements are met.
Some individuals and their families choose to use a feeding tube;
others choose not to.
Individuals with HD are at special risk for dehydration and therefore
require large quantities of fluids, especially during hot weather.
Bendable straws can make drinking easier for the person. In some
cases, water may have to be thickened with commercial additives
to give it the consistency of syrup or honey.
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