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Symptoms of Huntington's disease
Some people start to show symptoms of Huntington’s between the ages of 20 and 30, but normally it starts between the ages of 30 and 50. Generally, it progresses and worsens for ten to twenty years until the person eventually dies. Symptoms vary between people, there is no typical pattern.
People who know that Huntington’s disease runs in their family may worry a lot about developing the disease and be constantly looking for signs of Huntington’s such as forgetfulness.
Often, people with Huntington’s start to experience symptoms for about 10 years before Huntington’s is actually diagnosed. This is especially true when people are not aware that Huntington’s disease runs in their family. Early symptoms such as personality changes, mood swings and bizarre behaviour are often overlooked at first and attributed to something else.
Movement:
Huntington’s affects movement, and early symptoms include slight uncontrollable movements of the face, and jerking, flicking or fidgety movements of the limbs and body. These move from one area of the body to another and can cause the person to lurch and stumble. Eye movement can also be affected, causing difficulty looking up, down or sideways.
Later in the disease the uncontrollable movements are more frequent and extreme.
People with Huntington’s can find eating tiring, frustrating and messy because the mouth muscles and the diaphragm muscles do not work properly due to the loss of control. Loss of coordination can lead to spilling or dropping food. Swallowing is a problem, so choking on food and drink, particularly thin drinks like water, can be a common problem.
Because of the extra calories used up by the constant movement, and because of the problems with eating, people with Huntington’s disease are often underweight. This can make them prone to infection, illness, muscle wasting and slower wound healing.
Behaviour:
Huntington’s disease also affects behaviour; behavioural changes are often the first symptoms to appear. Symptoms often include alternating periods of aggression, excitement, depression, apathy, anti-social behaviour and anger. People with Huntington’s find they have a lack of concentration, short-term memory lapses and problems with orientation. These symptoms may appear before or after their movement is affected.
A person with Huntington’s may seem stubborn, irritable, and depressed, and get easily frustrated. They may display a lack of drive, initiative and concentration that may make them appear lazy. This is not that case; it is just the way the disease affects personality.
People with Huntington’s have a higher than average number of psychiatric (mental health) problems such as obsessive compulsive disorder (OCD), mania and schizophrenia. Loss of inhibitions can bring about a lack of interest in hygiene and self-care. Some people with Huntington’s may appear to refuse to accept their illness, or the seriousness of their illness; this could be due to the damage happening in the brain.
Communication:
Communication, cognition (perception, awareness, thinking and judgement) and speech are all affected by Huntington’s disease. Impaired breathing can make speech and articulation difficult. People with Huntington’s often have difficulty putting thoughts into words and slur their speech. They can understand what is being said but cannot necessarily communicate that they understand, or respond.
Huntington’s disease puts a great strain on relationships and is very stressful and upsetting to the family. It is distressing to see a family member’s state of mind deteriorate so much that they may not be like their former self at all. Daily routines such as getting dressed and eating meals can be frustrating and exhausting.
In the later stages of Huntington’s, the person will be totally dependent and require full nursing care. Death is usually from a secondary cause such as heart failure, pneumonia or another infection.
