There are three groups of symptoms in Huntington’s disease: physical, cognitive, and emotional and personality. Symptoms are expressed uniquely in each person with the disease – there is no common format for Huntington’s disease progression. These symptoms will present in different ways and at different times for each individual, and some symptoms may never appear. It is important to speak with your doctor about symptoms and changes you notice in yourself or loved ones at risk.
Perhaps the most physically recognisable symptom of HD is chorea. Chorea comes from the Latin for “dance”, and describes uncontrollable dance-like or jerking movements. These movements begin as twitches and gradually increase over a period of years to larger, more obvious movements. A small percentage of those with HD will not experience chorea. For this reason, the name of the condition was changed from “Huntington’s Chorea” to “Huntington’s disease”.
In the early stages of HD, a person is likely to experience some mild twitching of the fingers and toes, and perhaps the face or limbs. They may feel less co-ordinated, and are prone to fumbling or knocking things over. As the disease progresses, walking becomes more challenging and as coordination decreases, people affected by HD may begin to trip and bump into objects or people in their path. They will also experience increased difficulty swallowing and speaking, and choking can become a hazard.
For information on physical requirements, please view our Physical Requirements sectio on the What To Expect page.
The term “cognitive” refers to tasks of the brain concerned with knowing, thinking, planning, judging and remembering. In the early stages of HD there may be little evidence that these functions have been affected, but gradually some changes will be detected.
Cognitive function refers to a person’s ability to operate on a day-to-day basis. Cognitive function is required for everything from tying shoelaces to cooking dinner to doing a maths equation. In Huntington’s disease, you may find it difficult to focus, plan, recall or make decisions. Many people will also lack insight into their abilities, and so do not realise that they have less capacity for planning and completing tasks.
It may be difficult to focus, as distractions pull attention, or completing a task that was once simple becomes significantly more difficult. Things like cooking dinner or completing work can become require complex planning, and are much more difficult with HD. These symptoms also have an impact on their job, and many people with HD find they are eventually unable to continue working.
Short term memory may be affected: the person may forget to pass on a telephone message, turn on the kettle, or attend an appointment made yesterday. As cognitive ability decreases, tasks requiring intense concentration or planning and judgement become more difficult: planning a schedule or cooking a meal become quite difficult, and it will become increasingly difficult to do more than one activity at a time.
While HD impacts memory, planning and judgement, it does not affect a person’s orientation. In other words, someone who is symptomatic can still know and recognise the people about them, know where they are, and know what day it is.
For suggestions on supporting someone who is symptomatic, visit our Supporting Someone With HD section of the What To Expect page.
As with the physical and cognitive changes brought on by HD, changes to personality can begin subtly. In the early stages of HD, a person may be more irritable or moody than previously. Depression is common to about a third of all people affected by the condition, and can be treated with medication. Some people living with HD laugh or smile at inappropriate times or may feel like crying for no apparent reason.
Some people living with HD may also begin to respond differently to situations, signalling some form of personality change. It is important to remember that this is a symptom of a disease, but you should talk to someone if it is getting difficult to manage. Symptoms like depression can be treated with medication, so it is important to see your family doctor regularly to ensure they are managed appropriately.
For more information about psychiatric symptoms and treatments for people with HD, you can visit the American Journal of Psychiatry and search for ‘Huntington’s Disease’.