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NUTRITION AND EATING
Some Huntington’s disease patients need a lot of time for
meals because the loss of coordinated movement can make it difficult for
them to swallow or feed themselves. These difficulties put them at risk for choking.
Food can be cut into small pieces, softened, or pureed to
make swallowing easier. Swallowing therapy can help if started before there
is serious difficulty. Dairy products should be avoided because they tend to
increase the secretion of mucus, which can increase the risk of choking
It is important for the patient to consume enough
calories
to maintain adequate body weight. The number of daily meals may have to be
increased and vitamins and nutritional supplement may be recommended. If
eating and dietary problems become severe, families and caregivers may need
to consider the use of a feeding tube.
HD patients require large quantities of fluids,
especially during hot weather, to avoid dehydration. Bendable straws can
make drinking easier. In cases where the patient’s muscular capability is
severely weakened, water may have to be thickened with additives to the
consistency of syrup before drinking is possible.
Complications
such as constipation and
incontinence can develop as a result of diet and lack of physical activity.
A physician can provide dietary advice and information about how to cope
with these problems.
Physical Activity
It is important for Huntington’s disease patients to be as
physically fit as their condition permits. Daily exercise promotes physical
and mental well-being. Patients should walk as much as possible, even if
assistance is necessary.
Because falls are always a risk, caregivers should keep the
patient’s surrounding free of hard, sharp objects. Wearing special padding
during walks can help protect against injury from falls. Small weights worn
around the ankles and sturdy, well-fitting shoes that slip on and off easily
can help improve a patient‘s stability.
Social Activity
Unless and until the disease’s progression prohibits it,
people with HD should participate in outside activities, socialise, and
pursue hobbies and interests. These activities also give family members and
caregivers valuable time for themselves.
Support
Huntington’s disease confronts patients and their caregivers
with many complex problems that must be dealt with for years. While it may
be emotionally difficult, it is important for patients and caregivers to
make informed, carefully considered decisions regarding the future while the
patient is capable of making his or her contribution to a planned course of
action. Patients and their family members should discuss and consider issues
such as legal concerns, home care, assisted care and institutionalisation.
Legal affairs
If possible, draw up wills and other important document as
early as possible to avoid legal problems later on, when the patient may be
unable to present his or her own interests. Legal assistance may be
necessary if the patient encounters discrimination over insurance or
employment.
Home Care
Part-time help with housekeeping and physical care is often
necessary. Federal, state, and local government programs and private
agencies provide varying levels of domestic assistance, nutritional and
nursing care, occupational therapy and other home based services.
Housing
In some communities group housing facilities are available to
person who are alone and still independent, though not fully capable of
providing for all routine needs, such as cooking and house keeping. In these
group residences, a resident attendant takes care of meals, housekeeping
service, social activities and local transportation needs
The decision to institutionalise or place a family member in
a congregate care facility can be enormously difficult. Professional
counselling may be needed to help families deal with this important life
choice.
Prognosis
Huntington’s disease usually runs its full terminal course in
10 to 30 years. It has been observed that the earlier in life the symptoms
of HD appear, the faster the disease progresses. The bedridden patient in
the final stages of Huntington’s disease often dies from complications such
as heart failure or pneumonia.
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