Join their esteemed and musky company.

The following poem was written by me when trying describe Huntington’s Disease (HD) and issues around it.

This poem didn’t make the final collection called “Curse in Verse” when being used as a fundraising/awareness tool for the Huntington’s Disease Association. This is because its subject matter is very controversal.

I have mixed feelings about animal testing. Whatever a person’s own views I felt it was worth including the poem within this particular media. The testing will go on whether I like it or not. I wanted to show respect for the poor little creatures being used for HD and other research and I hope it comes across here.

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

People with HD may burn 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).

“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.