Nurse specialist - Huntington Disease - blog #1 'Bernards'

Huntington disease... one of the worst diagnosis someone can be give. People are knocked down, transformed, crippled, in the prime of their life. It can bring people and families together stronger than ever, or blast it apart. The guilt of those affected, the fear of those at risk of genetically acquiring the disease, rocks relationships and families to their core. In the following blog series you will be given an insight into the real world of experiences of those with Huntington Disease, their families, from the eyes of a HD nurse specialist.

One family, the Bernards (name replaced for privacy), had their lives turned upside down. A married couple in their late 30's with two young children. The father, a bank manager in a country town, the mother a lecturer at a local university. Both supported by local relatives, and enjoying a good life with their children thriving. But there was something that no one saw coming, the father was carrying something he inherited from a parent. Not the parents he knew, because he was adopted, but from a parent he knew nothing about, that had to give him up as a baby.

What was this pending impact... first he started to forget duties at work. His bank was robbed at gun point, it must have been the trauma from being held at gun point that caused his worsening memory and increasing irritability? His odd twitches? Domestic violence, seemingly from nowhere, started. His family left wondering where their gentle father had gone. He couldn't stay at the bank, he was a risk to everyone there, forgetting codes and yelling at people. He had to be moved to packing shelves in a local supermarket. This all happened in the space of two years...

Two years later he came to the mental health unit where I worked, having being deemed unsuitable to stay in either the aged care facility or a disability house. Unsuitable due to his aggressive reaction to anyone trying to care for him and inability to communicate his needs. Incontinent of faeces, not letting anyone touch him. This 7 foot tall man with a massive reach, lashing out at anyone who came near him. So vulnerable yet so intimidating. Family long moved interstate to avoid what they cannot face. A wife's guilt and a child's fear keeping them interested but unable to face the grim reality.

Follow this blog series for an in-depth look at the experiences faced by those with Huntington Disease.