Excerpted from A Caregiver's Handbook for Advanced-Stage Huntington's Disease by Jim Pollard.
Some people have difficulty sleeping. A change in one's sleep pattern, much more of it or much less of it, is a classic sign of depression. Little sleep and a very high activity level while awake could be a sign of mania. If you see this, report it to the appropriate health care professional so a complete evaluation can be made.
Due to daytime fatigue in advanced HD, some folks accidentally fall into a cycle of napping during the day and then being unable to fall asleep at night. You can usually find the right balance between conserving energy during the day and being tired enough to sleep through the night. Try to help them maintain their "rhythm of life."
People with HD may be more comfortable in surroundings that are cooler than typical. This may be related to some aspect of the disease that affects metabolism. They may also have episodes of excessive sweating. In some cases this may be related to certain medications. Others may have a compelling thirst. Those who drink an excessive amount of liquid per day should consult their physican regarding potential problems with electrolyte imbalance and kidney function.
He will have more and more difficulty thoroughly emptying his bladder, as his muscles become progressively uncoordinated. Increased thirst may lead to increased fluid consumption. This often causes him to sense the need to urinate more often than usual. Problems controlling impulses, coupled with the increased urges to urinate, often lead to him demanding to go to the bathroom over and over, often after just having urinated. Do not remind him that he just went to the bathroom. Do not ask him to wait. He may have an accident or only be further antagonized.
Constipation is a common problem in the more advanced stages of HD. Filling up on high-calorie, low-fiber foods to keep weight on, the loss of some fiber in altered texture diets, and an increasingly sedentary lifestyle can all add to the problem. After a thorough assessment, constipation is often treated with increased fluids, more frequent position changes, and a regimen of stool softeners.
Late in the progression of the disease, a very small number of people experience recurring high fevers. As in other times of high fever, the person's level of activity will decline. These high fevers occur despite physicians' best efforts to identify infectious causes. Consult your physician immediately. As you work together, pay close attention to room temperature and how much fluid he is drinking. It may be medications that interfere with sweating and the regulation of body temperature that are the cause.
Most physicians and physiotherapists familiar with HD tend not to treat chorea. Many people with HD who have taken medication to suppress their chorea feel that it is easier to live with their chorea than with the side effects of the medication used to suppress it. There are, however, people whose chorea is so severe that it actually causes them bodily harm. In these cases medication is most helpful. In addition, carefully selected padding of the environment is required. It may even become necessary to pad parts of the body if they are being repeatedly injured. Padded mitts as well as knee and elbow pads for athletes can be used.
Created and maintained by Renette Davis. Send comments to her by clicking here.
Created: Jan. 2, 2001
Last updated: Dec. 5, 2010