Just by eating right and exercising regularly, you can help to delay the onset or progression of symptoms. Keeping your brain active may also help, so do lots of puzzles like Sudoku. There may be medications your doctor can prescribe to assist with chorea – discuss this with them to see what may work for you.
There is currently no cure for Huntington's disease and no way to slow or stop the brain changes it causes. Treatments focus on managing symptoms.
“Aerobic exercise helps protect your brain and may slow the progression of nerve deterioration in Huntington's disease.”
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.
While maintaining a well-balanced diet is important, adapting food choices can also make a big difference for people with Huntington's disease. “Changing the consistency of the diet may help in light of that dysphagia,” recommends Hopsecger.
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.
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.
Huntington's disease treatment research
“A recently concluded trial demonstrated a once-a-day medication, valbenazine, can improve chorea symptoms in Huntington's disease and is currently awaiting FDA approval,” noted Forbes.
Aerobic exercise has been shown to improve cardiovascular fitness and motor function in people with Huntington's. Aerobic exercise requires continuous movement of large muscles to increase the heart rate. This can include activities such as stationary cycling, walking at a brisk pace or uphill, and swimming.
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.
Research studies have suggested that exercise is beneficial for reducing symptoms and maximizing function in persons with HD. Maintaining a healthy heart is important to the health of all persons, no matter their disability. Persons with HD should engage in aerobic activities ideally for at least 150 minutes a week.
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.
Promising New Advances in Huntington's Disease Research
Huntington's Disease Reprogrammed iPSCs allows robust and scalable generation of human glutamatergic neurons in wild type and CRISPR-Cas9 engineered disease lines carrying 50CAG mutation in the HTT gene.
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.
A research team has linked the mutation that causes Huntington's disease to developmental deficits in the brain's oligodendrocyte cells that are caused by changes in metabolism. They found that high doses of thiamine and biotin can restore normal processes.
HD is caused by a mutation in the gene for a protein called huntingtin. The defect causes the building blocks of DNA called cytosine, adenine, and guanine (CAG) to repeat many more times than they normally do. Most people have fewer than 27 CAG repeats in their HD gene, so they are not at risk for the disease.
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.
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.
A study found caffeine to be associated with earlier age of onset of Huntington's disease (HD) at intakes >190 mg/d, but studies in animal models have found equivocal results. Caffeine is protective in AD and PD at dosages equivalent to 3-5 mg/kg.
After Huntington's disease starts, a person's functional abilities gradually worsen over time. The rate of disease progression and duration varies. The time from the first symptoms to death is often about 10 to 30 years. Juvenile Huntington's disease usually results in death within 10 years after symptoms develop.
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.
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.
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.”