My experience of having the Predictive Test for HD was one of the hardest decisions I have ever had to make for myself.

Visiting my mother on a regular basis in a rest home always made me wonder.... am I carrying the gene...what would happen to me....who would look after me etc. The more time I spent with my mother the more it was eating away at me. It took me months before I made my decision to go ahead with the Prdictive test. One of the most important things was, I had great support from a couple of friends who were willing to be there if and when I needed them.

I was given a verse in which made me stronger everytime I read it, this is very special to me. This is what it read.

**DON’T QUIT**

When things go wrong as

they sometime will

when the road you’re

trudging seems all uphill

when the funds are low

and the debts are high

and you want to smile

but you have to sigh

when care is pressing you

down a bit_________

Rest if you must but

don’t you quit

success is failure

turned inside out

the silver tint of

the clouds of doubt

and you never can tell

how close you are

it may be near

when it seems afar

So stick to the fight when

you’re hardest hit______

it’s when things go wrong

that you musn’t QUIT.

After visiting a genetic counsellor and a psychiatrist the ball was starting to roll. I had to sign a consent form, so I was able to give blood and let the process begin. This was a huge step taken in one day and one that I will always remember. Whilst waiting for the result life was a real mixture for me, because I chose to do this on my own it meant that I had good days and bad days, sometimes it was like hitting a brick wall and not really knowing how I was going to get over it but with a bit of determination I got there in the end.

When my result arrived I decided to put it on hold until a later date. That was fine to start off with but something was telling me that the longer that I left it, the harder it was going to be to get the result.

December 7th 1997 I took another drive to Wellington to receive my result. A very nervous start to the day. Lots of things were going through my mind and knowing there was one word that was going to mean a lot to me and that was the word ‘NOT’ I never knew that such a little word could mean so much to one person. The envelope was given to me and it took me a while before I could actually open it. When I did it was the news and Christmas present I could ever wish for. I read the letter several times to make sure that I was reading it correctly and that the word NOT kept on appearing. It took a while for it to sink in. It was a very bizarre feeling, I can’t really explain it.

And you’d think that would be the end of it, but it was just the beginning. It was time to share the news with my family and friends. How was I going to go about it. It was not as easy as I thought it would be. There were some emotional times while sharing my result but that comes with the joy it gave me as well. Today it can still be a battle for me.

Support was one of the key factors for me, without that I would not have been able to get where I am today.

Humtington’s is still part of my family history and I will always be there if I am needed in any way. And now I know that I have the strength to support my mother through her journey......

I am glad that I made the decision to go ahead with the predictive test and knowing that sometimes things are not always a breeze. If anybody would like any support I will be there if I can. Please do not hesitate to get in touch with me.

Just remember ‘BE STRONG’ ‘BE POSITIVE’ and most of all ‘DON’T QUIT’.........

Kathryn Paul 128 Harrison St Wanganui.

Well it’s almost a year since I received my reult for the predictive test, just to remind people I’m one of the lucky ones and I am NOT carrying the Huntington’s gene. How has my life changed? It has certainly opened many new doors for me. Today it can still feel like a bit of a dream. My life has not changed dramatically but time seems to be flying by just as fast. Personally I can not see a lot of changes in myself, but I am sure that other people have noticed it more so.

Now when I look at my options Iam inclined to step up and give it a go rather than sit back and make excuses. I enjoy the activities that I’m involved in, and I don’t think of the what ifs and maybe’s............

Not every day is a happy day and I can still have my down times, I know that this is normal as we must remember that this is a family disease and that I have my mother and two brothers who mean a lot to me and I still give them as much time as what I use to.

One of the best phone calls that I received was recently when I was asked if it was possible for my letter to be put on the website. This was an absolute BUZZ for me. If there was any possibility that my letter could help someone then I am more than willing to help in the best possible way.

So if anyone would like just to talk or ask any questions, I am more than willing to listen or help in some way. Just remember you are not always alone and there is always someone out there that will listen, so don’t hesitate to contact me.

CHEERS

Kathryn Paul

128 Harrison Street