Someone with Huntington's disease needs comprehensive, evolving support for physical (movement, swallowing, nutrition), cognitive (memory, problem-solving, organization), and emotional (mood swings, depression, irritability) challenges, requiring coordinated therapies (PT, OT, speech), home modifications, routine management, financial planning, and strong family/social support to maintain safety, independence, and quality of life as the progressive disease advances.
Supportive care for Huntington's disease
Huntington's disease (HD) is a genetic condition with a 50/50 chance of passing it on from a parent with the mutated gene. As the condition progresses, it stops parts of the brain from working properly, leading to issues with movement, cognitive and behavioral changes, and mood volatility.
Huntington's Disease Association branches and support groups are run by volunteers. Groups meet up and down the country for a mixture of social activities, information sessions, fundraising and awareness raising – and always a good chat. The groups are informal and are run to meet the needs of the people who attend.
While drug and alcohol abuse cannot cause Huntington's disease (HD), drugs and alcohol can worsen HD symptoms.
The loss of muscle control and coordination means that spilling food from the mouth and choking are possible. Other associated symptoms, such as dementia, may prevent the person from choosing appropriate foods or eating at a manageable speed.
The 1-2-3 drinking rule is a guideline for moderation: 1 drink per hour, no more than 2 drinks per occasion, and at least 3 alcohol-free days each week, helping to pace consumption and stay within safer limits. It emphasizes pacing alcohol intake with water and food, knowing standard drink sizes (12oz beer, 5oz wine, 1.5oz spirits), and avoiding daily drinking to reduce health risks, though some health guidance suggests even lower limits.
Persons with HD should engage in aerobic activities ideally for at least 150 minutes a week. Walking is a good aerobic exercise and still possible for the person in the middle stage of HD to perform. If available, stationary bikes are an excellent means of providing aerobic activity.
Disability is often an important part of an individual's Huntington's disease journey. There are many components to the disability process, including: Social Security, private/employer benefits, legal planning, financial planning, health insurance, other insurance, and long-term care planning.
Balanced & Nutritious Diet
It means that along with eating your vegetables, meat and pastas, you can also have some chocolate and snacks along the way.
Speech changes are typically mild initially but can get worse over time. Speech can become slurred (if muscles in the face and tongue become weak) or lose its natural rhythm and sound 'jerky' (if you have difficulty coordinating your breathing with speech).
Care at this advanced stage can be provided in a range of settings, including your own home or a hospital (some have palliative care units), hospice or care home. Many people are able to stay at home with a care package provided by social care, the NHS or a local hospice until the end of their life.
Having structure can help things feel less chaotic. It builds comfort in knowing what's coming next. You could choose a few daily habits such as wake-up time, healthy meals and exercise. Then add small grounding techniques such a breathing techniques, journaling or a walk in nature.
A new gene therapy to treat Huntington's disease has shown positive data from the study of AMT-130 which is being run at UCLH and other sites. The phase I/II study demonstrates a statistically significant slowing (75 per cent) of disease progression measured at 36 months compared to the control.
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.
HD is an inherited disorder. It is passed from parent to child through a mutation (a change) in a particular gene. When a parent has HD, each child has a 50% chance of inheriting the copy of chromosome 4 that carries the HD mutation.
5 Things Not to Say in a Disability Interview
Mental fatigue and cognitive impairments are very real disabilities that deserve to be taken seriously. If these symptoms are preventing you from working, don't suffer in silence.
How can we help the person affected?
Regular physical activity can help keep your thinking, learning, and judgment skills sharp as you age. It can also reduce your risk of depression and anxiety and help you sleep better.
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.
Two fingers means a single pour. Three fingers means a double pour. Served neat in a rocks glass. It's old school.
A note on drinking level terms used in this Core article: The 2020-2025 U.S. Dietary Guidelines states that for adults who choose to drink alcohol, women should have 1 drink or less in a day and men should have 2 drinks or less in a day.
These ingredients are “highly regulated” and, because they are used in small quantities, do not have any harmful health effects, Ramesh said. Among “the biggest concerns” about 3-in-1 coffee, however, is the fat and sugar content. The creamers used tend to be “very high in hydrogenated fat”, said Ramesh.