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 was written as one of three for the Huntington’s Disease Association (HDA) who were presenting at an international conference on HD. The focus of the talk was the quality of life for families with HD. Without such organisations, funded by charity and to whom all proceeds of my work are donated, many of us out there would go under!

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 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.

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

In this poem I’ve tried to outline the underlying fear that those with a positive result for HD must be feeling. No matter how brave they may try to appear for others’ sakes, it must be so hard having a black cloud placed over your head.

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

In this poem I’ve again approached the subject of the juvenile strain of the illness (JHD). Although rare, HD does affect children. Without the recognition of HD, even in their own familes, who knows how many Melindas there are out there?

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

This poem touches on the secrecy within families. There are still many people out there unaware of the potential timebomb ticking away in their bodies. With the advent of the internet, and wider recognition of the condition, there are fewer places to hide. Good or bad thing? You decide.

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

Under UK law the Driver & Vehicle Licensing Agency (DVLA) requires that holders of licenses with the HD gene inform them upon becoming symptomatic. This poem touches on the dilema facing families of those whose livelihood depends on driving, e.g a London “Black Cab” driver, even if just “at risk”.