Job spec of the person with Huntington’s Disease.(HD)
- You will be responsible for screening, training, monitoring, supervising and supporting a large team dedicated to the pursuit of health and well being over a long period and under difficult circumstances.
- Will have developed emotional muscle following a lifelong experience of the illness and the misunderstandings it is subject to.
- Will be a self starter with courage beyond their years.
- Will develop effective working relationships with other individuals and agencies.
- Will be willing to lean on and learn form anyone available.
- Will learn to engage with hundreds starting by explaining the disorder and finishing by learning to live with their various reactions.
- Will need to manage downtime effectively as they will never again be off duty.
- Will need to be savvy about the people to trust. Some want something in return. That may not always be fair.
- To be negotiated but likely to be less than you deserve.
- Further information available for others in similar positions via extended family and/or lay group.
- Every nurse, doctor etc you come into contact with.
- Part of a worldwide club of exceptional people who will one day be recognised for their strengths instead of judged on their weaknesses.
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