Issue 90, September 2005
Huntington’s Disease has been part of my life for a very long time.
Caring for my wife who had HD, raising two young sons and running a farm was never going to be easy.
Support was hard to find, not many people had ever heard of Huntington’s Disease. With the help of extended family, a good GP and some home help we coped, just!
Early on in my “HD journey” I heard of a group of people in similar circumstances to mine that were meeting in Wellington. This was a life saver for me as suddenly I was not alone ... there were others out there who knew exactly what I was going through.
There are now strong HD Associations in Auckland, Wellington and Christchurch and other support people throughout New Zealand.
I have been going to meetings in Wellington (2 hours drive away from where I live) for nearly thirty years, been a committee member of the Wellington Association for most of that time, and latterly the chairperson.
With the quarterly newsletter, conferences, support groups and Social Workers/Field Officers, Huntington’s Disease has become much more widely known. A lot of people have now heard of it even if they don’t know a lot about it. There is a much wider understanding of behavioural problems, speech and dietary requirements. Carers are encouraged to have “time out” and let their HD family member go into intermittent care.
A lot of good things have happened in the HD world over these years, the highlight for me was the opening of Amaryllis House in Lower Hutt last year. This was something I put a lot of time and effort into, and I think it is a really valuable asset to the HD community.
Other milestones over the years were firstly of course “finding the gene” followed by genetic testing; camps for young people from Huntington families – so important; support groups being formed; three books published by the Wellington Association, more Social Workers/Field Officers to help and support families; conferences where we could all learn more and of course meet with other HD families.
With four experienced Social Workers working part time; and with another successful youth camp this year and the Conference in October I think our Association is really making a difference to our Huntington families. But all this requires funds and fund raising is now almost a full time job. As we are a voluntary organisation it is very hard to find people who can spare the time for this important job.
With volunteers doing more and more work in communities, it would be nice to think that we could receive more government funding for our Social Workers wages and travel.
It is now time for me to step down from the Wellington HD committee and let others come forward with fresh ideas as to the direction the Association goes. I would like to wish the new committee all the very best as they move forward into an exciting future.