Coping up with HD:
HD 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 you 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 an HD patient to have a dignified.
- Keep the person as engaged as possible. Talk to them frequently, deal with them with the 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 an 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 a 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 reinforce 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 for HD:
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 the lesser incidence of degenerative diseases. Tulsi, neem extracts are valued traditionally. These dietary measures are not specific to HD but to protect the 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 the 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.
Food habits for at Risk individuals & Early Stage HD patients:
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 a 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 in 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 butter, and avocados.
Therapy – Early and Mid-stage HD: This is the best phase to act and keep the individual’s functional as they are still amenable to therapies
Speech & Language Therapy: 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
Later Stage Therapy:
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 mealtimes 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)
Importance of Yoga and Meditation:
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 the patient to keep attention (which is impaired in HD) and Asanas may help all the systems of the body to function like Digestive system, Respiratory system, and the overall metabolism which is impaired in HD.