Issue 103, December 2008
This is a personal story presented by Kimberley Dark
at the New Zealand National Huntington's Disease Conference
held in Christchurch 20/21 September 2008
Hello my name is Kimberley Dark and I'm an alcoholic.
Oops wrong meeting.
I am 28 years old, and when I was 20, I had the predictive testing done to see if I carried the HD gene.
My result was positive and I have a repeat count of 52. Even though I knew about HD, I did not know what to expect, and I had never seen anyone with HD. So it is hard to explain how I reacted. I did not cry, get angry or anything. These results did give me the opportunity to look at how I was going to live my life.
I realized that drinking and smoking would never be a problem again. They weren't going to kill me!
I played sport when I was younger, and made Canterbury Rep teams for both Netball and Softball.
I also made the New Zealand Bronze Squad for Softball, and was named in the South Island Under 15 team two years running. I loved playing sport, and was usually 4th batter up in softball, because I could never resist hitting those high balls, and would usually get a home run bringing all the other runners home with me. As I got older, I played Soccer and Indoor Netball but gave up when injuries were increasing, and I would quite often have to go via A & E to get home. When I played Indoor Netball, the cognitive side of the game I was fine with. But the weekly injuries that I sometimes got, were more than likely related to my movements. A rolled ankle or falling over during a game were not unusual for me.
I have worked out at Templeton Centre, and now for Brackenridge Estate, when Templeton Centre closed down 10 years ago. I am a support worker, working with Intellectually Disabled people, supporting them with their daily living needs. The house that I work in, has six people who have varying degrees of intellectual disabilities and behavioural issues. I am one of usually two staff on a shift.
I enjoy this work, and over the last year or so, have noticed that things for me are changing at work, even though others had noticed well before then. I was dropping and spilling things and forgetting to do some tasks. I was finding it hard to write in the daily dairies for each of the clients, this has to be done each shift. This is something that I struggle with even more now. I was getting so tired sometimes, that at the end of my shift, I would quite often have to ring for Justin, or one of my family to come and drive me home. I have stopped driving the works manual van to take the clients to their day placements, but am able to borrow another house's van, that is an automatic, sometimes when I need to take someone to an appointment. I drive myself to and from work most of the time.
I think that I still do a good days work and think that I am bloody wonderful, even though I know that things are changing for me. My work mates are really good to me now. Previously they thought that I was being lazy and just 'skiving' off work. This was until my parents came out and did education with management and staff on several occasions and this has explained a lot (even though I was just being lazy and skiving off)!! My work mates are not scared to bring things up with me, as they are aware that it does not worry me, nothing worries me these days.
There is also constant communication between my work and my mum to keep the channels open, and to keep me in the work force for as long as possible. I use up my sick leave quite quickly with chest infections, and there are days that I am really tired. I just can not go to work, my movements are usually quite bad and my speech is very hard to understand. Workbridge has assessed me and are prepared to subsidise more sick leave when I run out of it this time.
Three years ago I met Justin, who, despite finding out about the HD and what it would mean further along in my life, wanted to marry me and be part of it. So 10 months later we were married, why wait, time is important to those of us with HD.
Justin is wonderful to me; he encourages me to do things for myself. He comes home from work and cooks tea for us, when I am too tired to do it. He has even saved me from choking. I get in bad moods and he rings my mum, to tell on me. Mum always takes his side, because he is the favourite.
I am so lucky to have found Justin and that he wants to share my life with me.