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 death of brain cells in certain areas of the brain results in a gradual loss of cognitive (thinking), physical and emotional function. Huntington's disease is a complex and severely debilitating disease, for which there is no cure. The most common symptom is jerky movements of the arms and legs, known as 'chorea'.
During the first stage, they might need help adjusting to their new normal. This can include talking about their fears and concerns. As the disease progresses, they'll need help with daily tasks like going to appointments, taking their medications and making meals.
Mood and behavioral changes
Agitation, irritability, and aggression are other possible personality changes. Some patients may experience hallucinations and delusions that can severely affect their day-to-day interactions. Living with Huntington's can induce feelings of anxiety, depression, apathy, and frustration.
Impaired social functioning is a key feature of Huntington's disease (HD). In addition to motor limitations that prevent social participation (e.g., fall risk, driving cessation), personality changes caused by cognitive and psychiatric decline alter social functioning capacity in people with HD.
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.
During the middle stage of Huntington's Disease, a person will need more help with basic personal care, such as bathing, dressing, and brushing their teeth. They may experience more difficulty thinking clearly, and display more behavioral changes, such as inhibition, impulsiveness, or aggression.
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.
If your symptoms primarily affect the way you move, you can likely still work. “We do have medications that are able to control movements,” says Dr. Oguh. “I have patients who have mild chorea and are still able to maintain their job, with some adjustments to the job environment.”
Early symptoms
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.
If you hold a driving licence and have symptoms caused by Huntington's disease, you're legally required to contact the DVLA. The DVLA will ask you for details of your doctor to seek further information. Many people are still allowed to drive, but this will be reviewed regularly.
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.”
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 is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington's disease has a wide impact on a person's functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.
Although not directly related to HD, stress is nevertheless related to the progression of the disease because it adds to the neurodegeneration that is already taking place. Chronic stress can alter nerve cells, brain structure, and brain function.
There is no cure for the disease, and there is a high rate of neuropsychiatric symptoms including depression, and aggressive behavior.
These patients often display a range of psychiatric symptoms, for example hallucinations or low mood, which coexist with behavioural change and symptoms such as apathy, irritability and aggression.
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.
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.
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.
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 (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.
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.