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Living with Huntington’s Disease

Learning to Live with Huntington's. Published 2007

We have a contract with Jessica Kingsley Publishers to produce a family book on Learning To Live With Huntington’s Disease.

The book was published in 2007.

Huntington’s Disease (HD) is a progressive, ultimately terminal illness. Think of Parkinson’s plus Alzheimer’s and you’re in the right kind of territory.

It used to be dubbed, scarily “The cruellest disease known to man”. So, you can imagine how thrilled my wife was to discover she had inherited it from her father.

HD is a hereditary illness, caused by a faulty gene, whose symptoms usually come on in middle age. Sandy was diagnosed about seven years ago. Our two boys each have a 50% chance of inheriting it.

If you want to know more, the book summary is on this link:

Living with HD book summary

Each family member has written their own chapter. Sandy is the overall author of the book.

Visit the book’s website here

Buy the book here from Amazon UK or here for Amazon US


Here are some chapter previews:

  1. Introduction
  2. The eye of the storm: Sandy’s story
  3. The lucky one? The sister’s story.
  4. Lost and found: The older son’s story
  5. ‘Is everyone alright?’ The younger son’s story
  6. Eyes wide open: The daughter-in-law’s story.
  7. Mopping the ceiling: The husband’s story.
  8. A cruel inheritance: Brian’s story
  9. Tips for living with Huntington’s Disease

They found the faulty gene a few years ago. The race is on now to use that knowledge to find a cure. A number of treatments are under development that look promising. In June of 2006 mice with Huntington’s Disease were cured of HD using a new technique. This is bigger news than it might first appear, since it is the first time the word ‘cure’ has ever been usable for this incurable disease. The news was reported in Cell journal.

You can find out more about Huntington’s Disease and donate to help with the medical research, if you have a mind to, via the Huntington’s Disease Association, whose UK branch is on this link:


Sandy is keen to raise awareness of the illness, which used to be known in the Middle Ages as St. Vitas’ Dance and, later, as Huntington’s Chorea. A film production company, ZKK, who have produced some interesting films for Channel 4, came to see us recently to do some test filming. They are interested in possibly making a documentary about how Sandy and the rest of the family live with HD. They have proposals out with a couple of terrestrial TV networks at the moment. Danny (our teenager) says the Osbournes better watch out…