Each individual with Huntington's Disease will often have a unique set of symptoms which will progress in different ways, no two cases are exactly the same. However, there are a number of common symptoms.
Common Symptoms (may vary as the disease progresses)
- Involuntary ‘choreiform’ movements.
- Difficulty swallowing, with resultant choking problems
- Difficulty with speech.
- Weight Loss
- Irritability and aggression
- Impaired mental judgement, insight and processing abilities.
- Risk of suicide (significantly greater than the national average)
OnsetAlthough people can exhibit signs of HD at any age, most people first show them when they are in their 30s and 40s. Thus, HD is described as an "adult-onset disease".
As a progressive disease, HD begins very subtly and only the person with HD, close friends or relatives, or the trained eye of a physician can detect its earliest signs. It progresses in stages, generally advancing slowly over many years although 'Juvenile HD' tends to be more virulent and aggressive.
Early YearsThe early symptoms of Huntington's disease can be very subtle and it is not always easy to know for sure whether the problem you are worrying about is caused by the illness. For example, you may be having a stressful time and notice that your memory does not seem to work as well.... or that you feel tired more often than usual. The problem is that stress can also cause these symptoms so it may not be possible to tell which is which. It is also very common to watch for symptoms and this may make you worry that you have symptoms even if you do not.
Affected individuals may present different symptoms of Huntington's disease. Although there are often common symptoms there is no set pattern of progression which can be predicted with accuracy.
Some people with the illness first have problems with their motor control. This leads to problems with swallowing and other involuntary movements, which may be noticeable as jerks or twitches or exaggerated gestures. Sometimes slight changes in balance and coordination occur, which lead to clumsiness or difficulty carrying out tasks that need fine movement control. Others may first experience changes in mood, e.g. sudden mood swings or irritability. Depression and anxiety can also occur.
Many people with early symptoms also say that they have more difficulty concentrating or planning... or may feel more fatigued and find it harder to get motivated. The milder ways in which this might affect daily life are varied but can include finding it harder to concentrate when driving, confusion when processing information, feeling less motivated at work, feeling less tolerant of people, getting angry with a partner over trivial things and suffering from impaired judgement.
It usually takes at least 15 years for the disease to run its course, sometimes longer. Particularly in the latter years, the affected individual will need help with household chores and personal care.
If you are a caregiver, you can help by anticipating changes in function that may trigger new concerns and preparing in advance for each new set of challenges that you and the person for whom you are caring will encounter.
Advanced SymptomsAs HD progresses, the early physical, intellectual and emotional symptoms become more marked. In many cases the person with HD will develop involuntary movements like jerks and twitches of the head, neck, arms and legs. Some of these 'choreiform' movements may be quite extreme.
Sometimes, people with HD will develop rigid muscles instead of involuntary movement. All of these physical symptoms can make walking, speech, swallowing and other basic tasks more difficult as the disease progresses.
Behavioural difficulties sometimes develop as the disease progresses. Individuals may exhibit very challenging behaviour which can cause additional problems for both sufferers and carers.
It is extremely difficult at times for loved ones to cope with varying degrees of verbal and physical aggression but is very important to remember that this behaviour, if exhibited, is a symptom of the disease and not the fault of the person.