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

“The Impatient Patient” is about how infuriating HD patients can be. This one was written to try and get acrosss the other side of how rewarding it can be looking after a loved one and how hard it is for the person affected.

Whilst the poems have been written having looked at many peoples’ tales of HD, this one is simply about me and my husband. He’s still able to read a little bit as of Nov 2009 but as every day passes his reading skills are diminishing and he tries his hardest to hide it.

Sometimes my husband is struggling so hard to read an item such as sport, where he really wants to know what’s happening, and I make some excuse to read the article aloud.I can see he is relieved but embarrassed.

I’m doing my best to help him retain his dignity as each layer of indepenence is taken from him but it’s only a matter of time…

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

There’s a book called “Hurry up and wait” wtritten by Jimmy Pollard. It’s a bible for all those caring for HD patients!

The title sums up one of the key characteristics of HD patients in that they psychologically do not understand how to wait anymore. This poem tries to convey how grinding it can be for the carer.

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

This is Part two of a scenario where the workplace has learnt of an employee facing HD. Employment rules have come a long way to guard against descrimination on the grounds of disablility but, it is still so hard when you feel you are not as valued as you were once.

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

This poem is Part one of a two parter. It’s clear that the workplace does not sit easy with those facing HD. The reference to HD being associated with “High Definition” television highlights the ignorance but, as with the genetic testing scenaro, once information is shared it cannot be taken back.

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

This is another one of my poems that could so easily be taken as applicable to caring in the generic sense.

This poem tries to convey the frustration held by many where society does not see "caring" of loved ones in the home as a job worthy of recognition. It’s sad that when our loved ones die and we no longer have a role, we not only have to cope with grief but have to start all over from scratch again.

It often means having given up careers and our own sense of identity. However, we have just had the toughest job in the world, somehow survived, but have nothing to show for it!

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!