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Huntington Disease impacts entire family members one way or the other.
Whether it is a person who has inherited the faulty gene that causes
Huntington’s disease or a family member/caregiver, this section has
information that will enable the patients/caregivers to improve their
quality of life.
Caring for a person with Huntington’s disease is a challenging task. Caregivers
have to interact with a variety of professionals: doctors, nurses, social workers,
psychologists, Genetic counsellors, physiotherapists, speech therapists and
other specialists. The better your understand how HD progresses and how it
affects a person’s mood, thinking and movement, the better you can help the
patient.
Caregivers play a very crucial role in any HD patient’s life. Every HD
affected person have special needs and require special attention. Below
are some points to help HD affected person to have better living.
=> Keep the person as engaged as possible. Talk to them frequently,
deal with them with highest patience.
=> Give them nutritious food and keep a watch on weight. Rapid weight
loss is not a good sign.
=> See your neurologist/psychiatrist on a regular basis and follow the
medication strictly.
Caregivers too undergo a lot of stress while managing the affected person.
It is always good to remember that a HD patient’s needs are very different
than that of a normal person. One should have empathy towards the person and
try to put yourself in the patient’s shoes. Most often people may consider
it as mental illness or some sort of nervous disorder. Of course HD is a combination
of both and hence It can be severely disabling though not all patients with
HD have both psychiatric and movement disorder. In India there is a huge lack
of awareness regarding HD. In general showing adequate care to HD affected
person will re-inforce confidence in them to be active and to face social situations.
A massive awareness campaign will reduce the social stigma and it is one of
the goals of HDSI.
Nutrition can play a major role in neuroprotection. India until recently
has a very low incidence of dementia disease (where brain shrinks) for our
healthy diet habits. Fresh vegetables, fruits, grains, medicinal add-ons
in our recipes like turmeric, ginger, garlic etc. are unique to Indian
diet probably the reason for lesser incidence of degenerative diseases.
Tulsi, neem extracts are valued traditionally. These dietary measures are
not specific to HD but to protect brain in general. Many symptoms of HD
can interfere with eating: reduced voluntary motor control, involuntary
movements, problems with chewing and choking, as well as changes to
cognition that may cause the individual to become distracted and
overwhelmed by mealtime activity. People tend to eat fast and also the
types of food that do not suit the patient. One has to understand that one
should change the type of consistency of the food (semi solid is better)
and method of eating (slow). Overcoming these challenges is an important
part of maintaining good nutrition for the person with HD. As the disease
progresses and other activities become limited, food and eating will take
on even greater importance. The introduction of special utensils, dishes
and modified seating, will help the person with HD continue to feed
themselves as long as possible.
When it is no longer possible for the person with HD to meet his or her nutritional
needs with an oral diet, enteral feedings (tube feeding) may be considered.
Tube feedings may be given as a supplement to an oral diet, to provide extra
fluids in case of swallowing difficulty, or as a sole means of nutritional
support.
Based on research literature for the general population, and other common
neurological conditions, such as dementia, there are some dietary factors
considered to be “brain healthy”.
Three of the most important dietary factors in a brain-healthy diet are vitamin
B-12, anti-oxidants and anti-inflammatory agents. There are many foods that
provide these substances, so you can take your pick among these foods to incorporate
them into your diet. Try to include at least one at every meal.
Vitamin B12 is found in animal foods (meat, dairy, eggs, poultry, etc.). B12
keeps the body’s nerve and blood cells healthy and helps make DNA. Studies
have shown that prolonged deficiency of this vitamin may have neurological
defects of the brain and spinal cord, although these effects are not specific
to HD. Vitamin B12 pills are usually recommended by doctor in case of deficiency.
Antioxidants protect your cells from free radicals (damaging molecules) in
the body. Colour (pigment) is important when choosing foods with antioxidant
properties – foods with deep, rich colour tend to be higher in antioxidants.
Choose a variety of fruits and vegetables to get the most benefit. These nutrients
are good for everyone, not just someone with HD. Fruits which are sour are
rich in Vitamin C an important antioxidant. Citrus fruits like lemon, orange,
guava, Amla are few examples. More research is required to determine whether
there is a specific increase of antioxidants needed for people with HD
Omega 3 fatty acids are helpful in reducing inflammation throughout the body.
Fish is a rich source of Omega 3 fatty acids. They also can reduce triglycerides
(and have a blood thinning effect so check with your doctor before taking a
supplement). Other healthy fats include olive oil, nut butters, and avocados
Early referral to speech and language therapy is important. In early-stage
HD, a person may have no issues swallowing, but speech and language
therapists may still have a role in evaluating an individual’s baseline
state, subtle changes and providing information for the future.
HD affects individuals differently, so regular assessment is required to help
an individual maintain function. There is significant overlap in feeding and
swallowing issues in the mid and late stages. As the disease progresses the
challenge of maintaining adequate nutrition and hydration becomes greater.
Click here to find a speech therapist in your area
Feeding tubes are usually recommended when a person is no longer able to take in adequate amounts of nutrients by mouth to maintain their weight at a healthy point. Ideally this should be decided while the person is still able to consider the pros and cons for him/herself, and well in advance of the need for tube feeding. Often, having liquids and formula feedings via tube the pressure of meeting an individual’s calorie needs.
There are several ways tube feeding is administered:
=> Continuous: Running twenty four hours a day, every day
=> Intermittent / Cycled: Running only part of the day (cycled overnight
or running for 12 hours for example)
=> Bolus: Bolus is given either via syringe or gravity (drip without a pump)
— at meal times typically
=> Supplemental: This could be bolus or intermittent — this might be given
in addition to eating if unable to eat adequate calories (but it could be
done by any of the above methods)
Unlike the modern medicine which relies on pharmacological therapy with
tangible, consistent, immediate results, yoga and meditation are the
traditional ways of keeping one’s body, mind in harmony which enables a
better quality of life.
There are several kinds of yoga and meditation and there is no information
on which is the best in HD. But mindfulness practices help patient to keep
attention (which is impaired in HD) and Asanas may help all the systems of
body to function like Digestive system, Respiratory system, and the overall
metabolism which is impaired in HD.