|Articles taken from the Dec. 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand|
I am one of a large whanau identified as carriers of the Huntington gene. I would like to share with you some of the trials and triumphs in our lives since diagnosis was made. The news itself was shattering in every way imaginable. You think you are prepared and then you find out differently. Denial, fear, anger and frustration hit us head on at a force 10. There must be some mistake. Whats to become of us? How come no one knew of its presence? Many questions raced through our minds. The need for all of us to talk continued to mount like a cylinder under pressure, building with each thought of what might lie ahead.
We arranged a couple of whanau hui to korero and share our fears and worries. We found that the more we talked the less power HD seemed to have over us. I would liken our conversations as talking it to death. Understanding the nature of the beast makes it seem less formidable and more manageable. We set about to identify how the gene came into our whanau and began piecing together behaviours and symptoms of other whanau members that GPs had missed or worse, put down to dementia or alcoholism. A generalisation held by GPs in Nelson at the time (mid 90s) was that Maori dont suffer from HD. They now know differently. We struggled as individuals and then again as a collective of family members. We shed tears together and in our collective grief we found some comfort and solace. We also knew that Dorothy was only a phone call away and that in itself was reassuring. Watching our relatives declining independence caused much heartache and anguish. Practical measures involving support agencies and whanau involvement were put in place in an attempt for them to remain within the community, for as long as possible. This worked for about a year. Eventually safety concerns resulted in the decision to relocate into a long- term care facility. Although not a dedicated unit as such, it provided a safe environment with capable staff on hand to meet the ever increasing needs of our relatives. None of these decisions were taken lightly, but rather the realities of the disease demanded action.
There is only so much one can do. There are only so many waking hours in a day. HD is a reality for a number of our extended whanau members but we dont dwell on its presence. We accept who we are and in knowing that no one is perfect, we accept our imperfection. We are grateful that there are more options today for HD sufferers than there has been in the past and continue day by day in the hope that researchers will eventually find a cure.
No reira, ka nui te mihi ki a koutou ngd whanau ngd kaitautoko e pa ana te ahua o te mate nei.
Mehemea, he patai ka tuhutuhi ki a Josephine, pouaka 274, Nelson.
Maori Disability Services
Ph. 03 5468018