The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

There are many good hospitals and nursing homes, and there are many bad hospitals and nursing homes. I shall leave it at that.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

"Perseveration" is described as "the tendency of an idea, impression, experience, etc. to persist or recur, or of an individual to continue a particular mental activity without the ability to shift easily to another at a change in stimulus". In Psychiatry terms it is ,the persistent and pathological repetition of a verbal or motor response, often seen in organic brain disease.’ http://www.yourdictionary.com/perseveration

Here is just one example of perseveration. I have deliberately cut this to three parts as "What"s that thing?’ gets annoying to read after a while. In real life though that question could have gone on for hours!

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

Obsessive Compulsive Disorder is now a relatively well known illness. It can form a big part of HD and can be infuriating when there is no rational explanation for why things are done and the world seems to revolve around trivial things.

However, challenging makes life distressing for the sufferer and, from my own personal experience, sometimes it is best not to question…just accept.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

Lack of social awareness is one of the symptoms of HD. In this poem I have demonstrated by the use of innappropriate behaviour in a public place. However, I wanted also to highlight the sweet side of HD. Is the sufferer just being mischievous me thinks?

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

Iin this poem I have tried to bring out how lonely the sufferers must be when their families and friends block them out from social interaction. It’s true that communication is difficult but it must be so lonely shut within your shell watching others live as though nothng has changed.

The Sunday lunch setting then reminded me how torturous it must be to have your senses stimulated by food and yet, because of swallowing difficulties, all you will be fed is a tasteless milk protein drink!

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

Because of the constant drains on sufferers and carers the need for respite care is very important. However, there are very few places for families with HD to go to where the special equipment and knowledge of the illness is available.

Here I have tried to imagine a family actually being able to find such a place that will take them as a family unit. Even then, I can’t imagine the wife in this case will have been funded or accepted without a fight to get there.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

This poem tries to emphasise the need to look at the affect of illness on the whole family group. It’s fair to say any illness one person has will have a knock on effect for those close. However, with its hereditary issues and the complexity of the illness (physical, psychological and emotional), by treating poeple’s needs in isolation the health service would be wasting resources.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

Here I have broached the hard subject of us carers really knowing what our charges want. There’s a fine line between what the person themselves want, and what the carer thinks is best for them. That is true of any carer situation but, with HD, there is even more danger in dismissing the person’s real wishes and needs.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

In this poem I have tried to touch on loss of family. The “cruel to be kind” line conveys not only trying to protect the grandchildren from seeing their grandarent so ill,but protecting them from seeing how they themselves may end up.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

In the 2007 film “The Bucket List” two terminally ill men go on a road trip to do the things they want to do before they “kick the bucket”. Whilst learning you have the HD gene is never an easy thing to cope with… sometimes being faced with an early end makes you want to appreciate the here and now more.