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Huntington's Disease: A Caregiver's Guide /
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Huntington's Disease: A Caregiver's
By Frances Maguire Paist, Staff
Because Huntington’s disease is
progressive, the symptoms exacerbate as the disease
advances. Late stage symptoms of the disease include
dystonia, sustained abnormal postures that include
facial grimaces, twisted neck and arched back; chorea or
choreoathetosis, a condition in which involuntary
movements like jerking, twisting and writhing become
more pronounced; a slowness of voluntary movements to
include abnormal eye movements and gait disturbances; an
inability to regulate the speed or force of movements;
an inability to initiate movement; slowed reactions;
difficulty speaking and swallowing due to involvement of
the throat muscles; localized or generalized weakness
and impaired balance ability; and rigidity. In most
patients, chorea peaks and then declines while rigidity
and slowness in movement may become more significant.
Rigidity and spasticity are late stage problems that can
affect gait, lead to falls and eventually lead to the
need for a wheelchair. While an enumeration of these
complications paints a bleak picture and must illustrate
the feeling of helplessness faced by caregivers, it is
important for others to understand not only what the
patient is living but what their caregivers face daily.
There is great reason for hope in
combating Huntington’s, however. Since 1991, Columbia
University’s HDSA Center for Excellence has been working
tirelessly to provide help to those who have the disease
(www.hdny.org). And recently, Sirna Therapeutics and the
University of Iowa announced groundbreaking results in a
preclinical study for the treatment of Huntington’s
disease through RNA Interference Therapy. One day at a
time, with the help of people who care and want to find
answers, through the courage of those living with the
disease and because of the 24/7 dedication of
caregivers, there will be answers. Those who live it
know that Huntington’s disease does not have to have the
last word. It can be a statement of victory from those
who learn in each moment to overcome overwhelming odds.
Helpful Hints for CaregiversThe diet for
people living with Huntington’s disease should be high
in protein and carbohydrates. If the person is
underweight, a minimum of 3000 calories a day might be
required and is best administered in smaller, more
frequent meals instead of three large meals. Constant
movements burn many calories and the resulting increased
hunger can be met with eggnog, Carnation Instant
Breakfast or milk.
Multivitamins are important as are
vitamins B complex, C and E.
People with Huntington's should avoid
junk foods, highly fried foods and alcoholic beverages.
Plastic dishes and large, plastic
utensils are helpful – the dishes help prevent breakage,
and the utensils are easier for patients to hold.
Fill cups of liquid only halfway full to
prevent spillage. Flexible straws are helpful.
Let your loved one dress him - or herself. Choose easy
to wear clothing, replacing buttons and zippers with
snaps and Velcro fasteners. Replacing the small, flat
tabs of zippers with a large plastic ring will help the
patient when dressing. Avoid belts, choosing suspenders
instead, and avoid ties. Slip-on loafers with rubber
soles are great shoe choices.
Don’t let your loved one withdraw. Keep
him or her occupied to help prevent depression and
Stay positive with your communication.
Let the patient know if you don’t understand something.
Learn the patient’s vocabulary. Encourage your loved one
to use word or picture cards. Before speech
deteriorates, establish a definite yes/no response like
the blinking of an eye or the nodding of a head.
Accept the person as he or she is. Be understanding and