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Issue 99, December 2007

Striking a Chord

Every time I forget something, a name, a date or hesitate in a conversation and struggle to find a word, I think this is the start of the Huntington's disease. This kind of thinking is not positive; it's negative and in itself can make the symptoms worse. It can make my body and my brain believe I've got it. So I'm finding it a struggle to put this notion of me having the disease aside. And when I struggle, I think this is also an effect of the Disease.

"Invest in your brain it'll pay untold dividends"

From my reading, I understand that "what you think about most, is what you become". So, if I think about not remembering things, I will become a person who doesn't remember things. If I think about struggling, I will become a person that always struggles to find the right words. This is not me normally, I just allow words to come naturally, and they do. I am usually a great communicator. In a sense I could be in denial, but I have no confirmation that I have the disease, because I am not diagnosed. It's a no win situation. But I do know that there is no harm in becoming aware that when I struggle for words, when I can't remember a word or when I get lost in thought or a sentence then, to give in to thinking that it's Huntington's Disease is not good for me. The way to change this is to change my thinking.

At the end of last year I made a commitment to myself to improve my brain. It came from an audio program I was listening to for work and was an excerpt from an interview with Tony Buzan who is a memory champion. And he said, that if you ever want to invest in anything, from stocks, shares, business, or pleasure then the best thing you can do for yourself is invest in your brain. It will pay untold dividends. This grabbed my attention and I've been working on my brain a little most days ever since.

I came across a game on the Nintendo DS Lite called "Brain Age: Train Your Brain". When I read about the benefits of the game I was really surprised. Since then I've come across it in books and on Internet sites. There was a diagram shown on the brain of a person sitting in thought and the diagram showed the brain activity was small and concentrated in one particular area of the brain. The same was true for a person watching television. It also showed the brain activity of a person reading out loud and the activity was substantially higher and all over the brain. The same was true for a person doing lots of simple mathematical calculations at a fast pace. So I've taken to reading out loud and reading more to my children. This is good therapy because I'm concentrating on others and not turning inwards to my worries and concerns.

Recently while playing the guitar I found I couldn't quite get my fingers in the right position to play a chord, and I couldn't quite get the rhythm I usually used for the song. Again the first thing that struck me was - this is the start of it. But to be fair I hadn't been playing the guitar even half as often as I used to nor had I played that song in a long time. Every player has to practice.

For a long time now, every now and then, I stumble. I've no explanation for this. I just assumed it was nothing or something that happened to everyone. This is probably my biggest worry.

So you can see my worries can all be early symptoms of Huntington's disease. After saying all this I must recognise that this is how the brain works. If I think or believe something then my brain will automatically look for "references" to prove this belief to me. It will go back to my memory banks and remember the times that I've stumbled. I'll remember other times when I couldn't get a chord on the guitar, or when I forgot something or struggled for words to explain something.

"It's not a good idea for me to give in"

And it won't be looking for the times when I spoke freely and easily, communicated wonderfully using the perfect wording, walked without stumbling or played the guitar like an expert. So it's important not to think about these things because the more I think of them the more references my brain comes up with to compound the idea that I have the early symptoms of Huntington's Disease.

So, am I in denial or is it my brain making me think I have the disease? Either way keeping active, positive and working on my brain will do no harm. Whether it slows down the onslaught of the disease or it just gives me a good quality of life before I develop the disease. It's not a good idea for me to give in. I can't give in to having the disease because it's not healthy and it hasn't even been diagnosed yet.

The problem is that my brain doesn't process negatives. A simple demonstration is when I say to you "don't think of pink rabbits". Automatically you think of pink rabbits. You must think of something else to stop thinking about them, but before you think of something else you have already thought of pink rabbits.

"I believe that even if I have the disease,
my attitude will slow down the onslaught of HD
and I will have lived my life to the best of my ability"

So what I can do is replace the thoughts of having Huntington's disease with something else. So I'm keeping busy, studying, working on my brain, working on our home and reading. I read more about the disease so I can be prepared for my family, to have a good understanding, to be able to help them out, to prepare myself and not bury my head. But the more I read, the more I recognise symptoms or possible symptoms in me and my behaviour. It's a struggle to keep a balance to find out about the disease without jumping to conclusions.

So all I can do is walk in the middle of the road, not knowing whether I have the disease or not, but knowing that I need to keep my brain healthy. The more I think that my brain is perfectly healthy and functioning properly the more it will do that. I believe that even if I do have the disease that this attitude will slow down the onslaught of the disease and if it doesn't then I will have lived my life with the early effects of Huntington's disease to the very best of my ability.

Acknowledgement: Hope Annual June 2007 - The Huntington's Disease Association of Ireland

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