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

People with HD may take on as many as 5,000 calories a day without gaining weight. Maintaining a healthy weight is key but can be an uphilll struggle especially when swallowing difficulties and risk of choking is high.

Loading foods with calories by adding cream, butter and high fat produce may sound like a dream to some people but it is harder to keep on the weight than you might think!

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

Big Brother (UK) is to end but I dare say it will be back one day and the producers will be looking for other ideas. Wouldn’t surprise me if they used a vulnerable section of society. Not that it could be argued all the contestants have been mentally stable already but with the motor function problems and social awareness problems already strained…

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

Some of the symptoms of HIV/AIDS incude weight loss; lack of energy; short term memory loss; siezures and lack of coordination and confusion. They happen to be similar to the symptoms of HD.

I’ve heard of at least one gay couple where one of the partners started to show symptoms of HD but he wasn’t aware of his family history. Despite both knowing they were not sleeping around the automatic assumption was HIV and they got tested for it. As you can imagine, before HD was finally diagnosed, there had been a whole layer of issues to be dealt with by them both.

This poem also notes HD affects people regardless of their gender, age, race or sexual orientation.

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

In October 2000 Britain became the first country to approve the commercial use of gene technology to allow insurers to refuse cover or to push up premiums for those born with genes that could lead to fatal conditions. HD was singled out as the only case allowed immediate discrimination because of the reliability of the test. This meant for a person having tested “positive” insurers gained the right to refuse to insure or legally load the premium to extortionate levels (300% has been cited).

If, for example, a person took the test at 18 yet did not go on to develop the symptoms until 60 (late onset), they would face 42 years of unnecessary discrimination. There seems to have been no acceptance of the fact until symptoms start showing… the person with the gene does not have HD!

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

At the time of submitting this poem (Nov 2009) I have some paperwork to look at. It’s an application for consideration for “Extra Care Sheltered Housing”.

Basically it’s the equivalent of a retirement home with a warden and carers. Sounds great but the normal criteria is you have to be aged over 60 and that will be the age of the average residents. Because of our circumstances, people think we might be better placed there. We are both 48.

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

Dr Edmond Chiu, Senior Lecturer – University of Melbourne, gave a presentation on HD and noted “Our experience is that the Huntington”s patient retains the ability to appreciate music right to the end. It may be that the part of the brain controlling music ability and music appreciation is not affected by Huntington’s Disease. We don’t know where that part of the brain is, but where ever it is they appreciate music. That is a very important part of their quality of life.’

This poem tries to reflect my own husband’s continued love of rock music which seems to stimulate his brain.

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).

"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).

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?