The most painful conditions in Huntington's, said Achterberg, are limb pain, headache, abdominal pain and fractures. “I think we should do more work in validation of pain tools, including observational pain instruments,” he said. “And for clinicians, I suggest you be especially aware of abdominal pain.”
Due to the areas of the brain affected in Huntington's, patients may sense and respond to pain abnormally, which could explain why pain poses a lower burden to them.
Huntington's disease also causes a decline in thinking and reasoning skills, including memory, concentration, judgment, and ability to plan and organize. Huntington's disease brain changes lead to alterations in mood, especially depression, anxiety, and uncharacteristic anger and irritability.
Some of the suggestions I have for living with HD are: Keep life simple - Rest, Exercise, Nutrition, A daily laugh Carry earplugs with you when you are out (Some people with HD are sensitive to noise) Carry calendars with you to write down everything you must do for the day and any information you get from other people.
They may lack inhibition, and do or say things that one would normally find embarrassing. People with Huntington's may also be less able to control their emotions, possibly leading to outbursts of screaming, swearing, slamming doors, hitting walls, or the like. Patterns of behavior can change as the disease progresses.
The time from the first symptoms to death is often about 10 to 30 years.
Stage 5: Advanced Stage
The fifth and final stage is when the disease will be more severe, and it's likely that the individual will require care 24/7. They will likely be immobile, unable to communicate and find it extremely difficult to perform basic motor functions such as swallowing.
Weight loss can make symptoms worse and weaken the patient's immune system, making them more vulnerable to infections and other complications. Huntington's disease itself is not usually fatal, but it can lead to choking, pneumonia, or other infections that can lead to death.
This disease often affects a person's ability to plan, make decisions, and process complex topics. But patients usually retain past memories, and are able to recognize people, objects, letters, numbers, and colors. They are often able to continue carrying out jobs that they have previously been doing for many years.
The bottom line. Being physically and mentally active in life is good for everyone, and particularly for those at risk of developing HD, because it might affect symptom onset.
Huntington's disease (HD) is an inherited disorder that causes nerve cells (neurons) in parts of the brain to gradually break down and die. The disease attacks areas of the brain that help to control voluntary (intentional) movement, as well as other areas.
Foods to avoid for Huntington's disease
These foods include: Raw fruits. Stringy vegetables. Tough, crusty breads.
The most painful conditions in Huntington's, said Achterberg, are limb pain, headache, abdominal pain and fractures.
Many people with Huntington's disease report that their sleep patterns are affected and sometimes are awake most of the night, then continually catnap or doze throughout the day. Many find themselves experiencing long periods being awake or asleep.
Stage 5: Advanced stage
Patients with Huntington's at this late stage will need total support in daily activities from professional nursing care. Chorea lessens at this stage, but parkinsonism — which includes slowness, stiffness, teeth grinding, and abnormal limb postures — increases.
Huntington's disease is a condition that stops parts of the brain working properly over time. It's passed on (inherited) from a person's parents. It gets gradually worse over time and is usually fatal after a period of up to 20 years.
Huntington's Disease (HD) is not fatal in itself. People with HD have a shorter life expectancy and die of other life-threatening complications related to this disease. Pneumonia and heart disease are the two leading causes of death for people with HD.
People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.
People can start to show the symptoms of Huntington's disease at almost any age. Most will develop problems between the ages of 30 and 50. The condition gradually gets worse for around 10-25 years, until the person dies.
The overall presentation of HD was considered to be initially mild by most families in this study, but progression in motor and/or behavior symptoms eventually occurred in all 30 subjects evaluated more than once.
No treatments can alter the course of Huntington's disease. But medications can lessen some symptoms of movement and psychiatric disorders. And multiple interventions can help a person adapt to changes in abilities for a certain amount of time.
Stage V: (11 - 26 years from illness onset)
Requires major assistance in financial affairs, domestic responsibilities, and all activities of daily living. Full-time skilled nursing care is required.
While the cause of the disease is known — a single mutated gene — there is no cure. “Our plan is to conduct human clinical trials that deliver stem cells to replace damaged brain cells, reducing levels of harmful proteins that build up in the brains of Huntington's disease patients.”