Chorea and dysphagia can both increase choking hazards for those with Huntington's, too, whether causing a person to swallow too soon or inducing a spasm in the diaphragm (chest), which could lead to aspiration (when food or drink ends up in the lungs instead of the stomach).
Many symptoms of HD can interfere with eating: reduced voluntary motor control, involuntary movements, problems with chewing and choking, as well as changes to cognition that may cause the individual to become distracted and overwhelmed by mealtime activity.
Choose soft, easy-to-chew and easy-to-swallow foods (aim for the consistency of porridge). Use plenty of sauces and gravies to help make main meals easier to swallow. Add plenty of custards, ice-cream and cream to desserts. Avoid hard foods such as nuts and lollies.
Pneumonia and heart disease are the two leading causes of death for people with HD.
[7, 8] It has been suggested that weight loss in HD may be influenced by metabolic and mitochondrial disturbances[9–11] and a recent study has also suggested that mutant huntingtin in peripheral tissues may be sufficient to cause metabolic abnormalities independent of neurodegeneration.
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.
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.”
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.
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.
Foods to avoid for Huntington's disease
These foods include: Raw fruits. Stringy vegetables. Tough, crusty breads.
Other changes may include trouble with driving, prioritizing (deciding which things are more important to do and which are less important), and difficulty organizing, learning new things, remembering a fact, putting thoughts into words, or answering a question.
A trusted advisor can help with important decisions and in monitoring changes in your behavior. People with Huntington's disease usually die within 15 to 20 years of their diagnosis. The most common causes of death are infections (such as pneumonia) and injuries related to falls.
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.
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.
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.
Stage 4: Early Advanced Stage
The time it takes for an individual with Huntington's to reach this stage will vary by case; however, it generally begins about ten years after the onset of the disease but can range between nine and twenty-one years.
The time from the first symptoms to death is often about 10 to 30 years.
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.
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.
Hospice referrals for Huntington's can be challenging because it's difficult to predict decline. Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia, and uncontrolled pain.
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.
Caffeine boosts a neuroprotective protein in the brain that is lost in neurodegenerative conditions such as Huntington's disease, according to a study. Researchers identified 23 other compounds that also act on the protein, known as NMNAT2.