Some common end-of-life symptoms include significant weight loss, episodes of fever, respiratory distress and sleeping or deep unresponsiveness for most of the day.
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.
Stage 5: Advanced stage
The advanced stage lasts between 11 and 26 years from disease onset. Patients with Huntington's at this late stage will need total support in daily activities from professional nursing care.
Pneumonia and heart disease are the two leading causes of death for people with HD.
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.
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.
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.”
Agitation can occur at any time during the course of the disease. Agitation is defined as inappropriate behavior in a particular context characterized by excessive motor or verbal activity that may include physically aggressive behavior, restlessness, or pacing [1].
It is important to remember that these outbursts of anger are commonly the result of the brain changes in HD, and the person with HD may not understand that you are trying to help them. These brain changes can make it difficult or impossible for someone with HD to view situations from the perspectives of others.
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.
When involuntary movements become more frequent, there is a chance the patient can get hurt. Also memory and speech may be affected more and lead to other problems. At this point an assisted living facility or memory care facility may be needed.
The range of disease duration was between 2 and 17 years, the oldest living to age 91.
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 clinical characteristics of HD include involuntary movement, behavioral abnormalities, personality changes, and dementia. In addition to motor and cognitive impairments, some patients show micturition symptoms, especially urinary incontinence.
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.
The mutant protein huntingtin causes neurodegeneration in the brain, particularly in the caudate nucleus and putamen. The mean age at onset is in the third and fourth decade of life and the disease duration about 15-20 years. Death usually results from respiratory complications.
Huntington's disease (HD) is an autosomal dominant neurodegenerative disorder that usually starts in mid-adult life. The clinical disease progresses to death over an average of 20 years.
There have been reports that juvenile onset Huntington's chorea is almost always inherited from the father, and that late-onset Huntington's chorea is inherited more often from the mother than from the father.
Genetic Factors
The faulty gene can only be passed on at point of conception. You cannot “catch” Huntington's disease (it is not communicable), and it cannot skip a generation.
For some HD sufferers, the disease first manifests as small tics or involuntary movements, Perlman says. "A lot of patients aren't even aware of them," she says. "Friends or family will notice fingers always tapping or a twitch in the face." Unsteady walking, slurred speech, and uncoordinated movements are all common.
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.
Foods to avoid for Huntington's disease
These foods include: Raw fruits. Stringy vegetables. Tough, crusty breads.
Pneumonia: Difficulty swallowing and decreased mobility can increase the risk of pneumonia, including aspiration pneumonia. Infections: Infections can develop as a result of the overall decline in health and as a result of diminished self-care.