What kind of care does an individual with Huntington's disease 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 individual's 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 individual's 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.
Constipation is defined medically as fewer than three stools per week and severe constipation as less than one stool per week. Constipation usually is caused by the slow movement of stool through the colon. There are many causes of constipation including medications, poor bowel habits, low fiber diets, abuse of laxatives, hormonal disorders, and diseases primarily of other parts of the body that also affect the colon.
Dehydration is the excessive loss of body water. There are a number of causes of dehydration including heat exposure, prolonged vigorous exercise, and some diseases of the gastrointestinal tract. The best way to treat dehydration is to prevent it from occurring.
Dementia is a significant loss of intellectual abilities such as memory capacity, severe enough to interfere with social or occupational functioning. There are different criteria classification schemes for dementias such as cortical, subcortical, progressive, primary, and secondary dementias. Other conditions and medication reactions can also cause dementia. Dementia is diagnosed based on a certain set of criteria. Treatment for dementia is generally focused on the symptoms of the disease.
Depression is an illness that involves the body, mood, and thoughts and affects the way a person eats and sleeps, the way one feels about oneself, and the way one thinks about things. The principal types of depression are major depression, dysthymia, and bipolar disease (also called manic-depressive disease).
Epilepsy is a brain disorder in which the person has seizures. There are two kinds of seizures, focal and generalized. There are many causes of epilepsy. Treatment of epilepsy (seizures) depends upon the cause and type of seizures experienced.
Tremor is the involuntary movements of one or more parts of the body. Causes of tremor include neurological disorders, neurodegenerative diseases, drugs, mercury poisoning, overactive thyroid and liver failure. There are several types of tremor. Treatment depends upon the type of tremor and availability of medications for the condition.
Dysphagia or difficulty in swallowing, swallowing problems. Dysphagia is due to problems in nerve or muscle control. It is common, for example, after a stroke. Dysphagia compromises nutrition and hydration and may lead to aspiration pneumonia and dehydration.
Obsessive compulsive disorder (OCD) is an anxiety disorder that causes a person to suffer repeated obsessions and compulsions. Symptoms include irresistible impulses despite a person's realization that the thoughts are irrational, excessive hand washing, skin picking, lock checking, or repeatedly rearranging items. People with OCD are more likely to develop trichotillomania, muscle or vocal tics, or an eating disorder. Treatment for OCD includes psychotherapy, behavioral therapy, and medication.
Genetic disease is a disorder or condition caused by abnormalities in a person's genome. Types of genetic inheritance include single inheritance (for example, cystic fibrosis, sickle cell anemia, Marfan syndrome, and hemochromatosis), multifactoral inheritance, chromosome abnormalities (for example, Turner syndrome, and Klinefelter syndrome), and mitochondrial inheritance (for example, epilepsy and dementia).
There are many types of urinary incontinence (UI), which is the accidental leakage of urine. These types include stress incontinence, urge incontinence, and overflow incontinence. Urinary incontinence in men may be caused by prostate or nerve problems. Treatment depends upon the type and severity of the UI and the patient's lifestyle.
Dystonia disorders cause involuntary movements and prolonged muscle contraction, resulting in twisting body motions, tremor, and abnormal posture. There are many forms of dystonia. Some types of dystonia respond to dopamine, or can be controlled with dedative-type medications, or surgery.
Seizures are divided into two categories: generalized and partial. Generalized seizures are produced by electrical impulses from throughout the brain, while partial seizures are produced by electrical impulses in a small part of the brain. Seizure symptoms include unconsciousness, convulsions, and muscle rigidity.
Millions of women suffer from urinary incontinence (UI). UI occurs twice as often in women as in men. There are many types of urinary incontinence: stress incontinence, urge incontinence, overactive bladder, functional incontinence, overflow incontinence, transient incontinence, and mixed incontinence.
Urinary incontinence in children (enuresis) is twice as common in boys as in girls and may occur during the daytime or nighttime. Nighttime urinary incontinence is also called bedwetting and sleepwetting. The cause of nighttime incontinence in children is unknown. Daytime incontinence in children may be caused by an overactive bladder. Though many children overcome urinary incontinence naturally, it may be necessary to treat incontinence with medications, bladder training and moisture alarms, which wake the child when he or she begins to urinate.
Most often, caregivers take care of other adults who are ill or disabled. Less often, caregivers are grandparents raising their grandchildren. The majority of caregivers are middle-aged women. Caregiving can be very stressful, so it's important to recognize when it's putting to much strain on you and to take steps to prevent/relieve stress.
Depression in the elderly is very common. That doesn't mean, though, it's normal. Treatment may involve antidepressants, psychotherapy, or electroconvulsive therapy.
Your health care provider may refer you to a genetic professional. Universities and medical centers also often have affiliated genetic professionals, or can provide referrals to a genetic professional or genetics clinic. Genetic counseling provides patients and family members the tools to make the right choice in regard to test for a disease or condition.
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