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.
The disease attacks areas of the brain that help to control voluntary (intentional) movement, as well as other areas. People living with HD develop uncontrollable dance-like movements (chorea) and abnormal body postures, as well as problems with behavior, emotion, thinking, and personality.
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.”
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.
Huntington's disease impairs the functioning of the brain, which can result in apathy, trouble organizing, impulsivity, irritability and anger, unawareness, disinhibition, preservation, and other psychiatric symptoms. These emotional and behavioral symptoms can further complicate the caregiver's role.
during the time surrounding death. For the purpose of this fact sheet, the beginning of end-of-life in HD is determined as the stage when the person affected has little control over movement, is bedbound, unable to communicate, unable to eat and drink on his/her own and experiences severe chorea or extreme rigidity.
As the disease progresses, they'll need help with daily tasks like going to appointments, taking their medications and making meals. “As a caregiver, you need to make sure that they're able to get the help they need,” says Nicka.
Foods to avoid for Huntington's disease
These foods include: Raw fruits. Stringy vegetables. Tough, crusty breads.
memory lapses. depression – including low mood, a lack of interest in things, and feelings of hopelessness. stumbling and clumsiness. mood swings, such as irritability or aggressive behaviour.
Pneumonia and heart disease are the two leading causes of death for people with HD.
Conclusion The most primary cause of death in HD is aspiration pneumonia.
There is no cure for the disease, and there is a high rate of neuropsychiatric symptoms including depression, and aggressive behavior.
When alcohol becomes a coping mechanism for Huntington's disease, that's when it becomes a problem. “With any neurodegenerative or medical disease, drinking a lot can certainly affect your balance and your gait,” says Dr. Oguh.
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.
Nine patients have died, and seven have been lost to follow up. The range of disease duration was between 2 and 17 years, the oldest living to age 91.
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.
Stage IV: (9 - 21 years from illness onset)
Requires major assistance in financial affairs, domestic responsibilities, and most activities of daily living. For instance, comprehension of the nature and purpose of procedures may be intact, but major assistance is required to act on them.
Medicines can help reduce some of the problems caused by Huntington's disease, but they don't stop or slow down the condition. These include: antidepressants for depression. medicines to ease mood swings and irritability.
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.
It's possible to develop HD even if there are no known family members with the condition. Around 10% of people with HD don't have a family history.
Noticeable changes in personality. Involuntary movements (chorea) and unsteady gait. Slurred speech. Difficulty swallowing and significant weight loss.