positive HD result may change your life in many different aspects, e.g. deciding whether
to have children, planning for the future,
priorities, negotiating appropriate housing, etc. It may also make mortgages, health and life insurances difficult. Therefore, individuals
at risk of HD are advised to make decisions on long-term care insurance before
definitive diagnosis and development of symptoms.
HD will gradually
affect your ability to live an independent life. Working, social activities and
general daily activities will become increasingly difficult to perform. As the
disease progresses, you may become more dependent on help and support from
relatives, health and social care professionals.
This can be a very sensitive issue. In some countries
you may have to inform the driver licensing authority if you have a medical condition which affects your ability to drive. People
who are in the early stages of the disease
are sometimes given licenses which can be reviewed on a regular basis.
Most HD patients and their
carers perceive behavioural symptoms as more distressing than motor and
cognitive impairments. This comprises particularly depression, apathy,
anxiety, irritability and obsessive-compulsive
behaviours. In addition, cognitive impairments may change
daily life to a great extent. HD affects certain regions of the brain which are
normally responsible for planning ahead (executive functions) and concentrating on more than one task at the same time (cognitive flexibility). Consequently, HD patients may become overloaded with tasks or have difficulty dividing
attention and adapting to changing situations. Moreover, altered sleep patterns may affect family life, either due to
sleeplessness during the night or sleepiness during the day.
strategies to cope with HD have to be drawn individually, depending on the
affected person, the stage of the disease and the family context. HD develops
very gradually, so that in general there is time to adapt to the changes caused
by the disease. A better understanding of the behavioural and cognitive
impairments may help developing strategies to accommodate these changes and to
maintain a warm relationship with people suffering from HD. You can also get
important information and valuable advices from both HD specialists and lay
organisations from your respective country.