Coping with Huntington’s

The condition is a disorder of the central nervous system. In some way – not yet understood – a faulty gene leads to a damage of the nerve cells in areas of the brain.

Early symptoms include slight, uncontrollable muscular movements, stumbling and clumsiness, lack of concentration, short-term memory lapses, depression and changes of mood – sometimes including aggressive or antisocial behaviour.

Later symptoms include difficulty in speech and swallowing, weight loss and emotional changes, resulting in stubbornness, frustration, mood swings and depression.

For carers, often the hardest thing is seeing the loss or change in former personality. The time before a diagnosis can be very confusing and frightening because people do not understand what is happening and why.

One of the most important things for carers is to learn how to manage their stress. Relaxation techniques or deep breathing can help.

Medication can be used to treat symptoms such as involuntary movements, depression and mood swings. Social services can help with adaptations to your home or respite care.