Marion's story was so different from mine. She had met Peter* when he was twenty five. His mother had HD and his two sisters and his elder brother had been tested. His brother was positive and one of his sisters. Peter had found this confronting and chose not to be tested. Marion went along with his decision. Peter's siblings who were HD positive paid off their homes, watched their diets and took exercise seriously. They volunteered for research programs, some of which they felt were helpful. Peter and Marion travelled, spent their money and avoided any discussion about HD. He was not able to take out life or income insurance due to his risk of HD. Peter reached fifty and Marion noticed he was letting things slip, bills were unpaid, his job was at risk. Peter refused to listen to her. Only a few years later he refused to go out socially and found fault with everything. She couldn't take anymore and took a break. She stayed with her sister in Queensland for six months. When she returned she insisted Peter see his GP who referred him to a specialist. He was tested for HD. The test returned positive. Marion wasn't surprised but they were both devastated. Peter's siblings encouraged and supported them. Suddenly their lives were filled with medical appointments, service providers, OT's and the like. Marion said they were both frightened and overwhelmed.
Marion asked herself why they had let this happen. She told me if she had her time again she would have asked Peter to have the test before they married. No matter the outcome they would work together to have a brilliant life together. She thought about the preparation and support they had missed out on. If only they had trusted each other enough. If only she had realised their love for each other would have been their support. Marion went on to say she was felt so defeated she went back to Queensland for twelve months while Peter moved in with his eldest sister and her husband. Marion returned to Perth only a few months ago. She said she stills feels cheated of a life which could have been so different. Peter's fear and avoidance had been their worst enemy. She had been afraid to suggest Peter be tested and support him all those years ago.
Marion doesn't know if they will ever live together again, she imagines Peter will need to go into a home before long as his sister also has HD and her husband is finding it difficult to cope with the extra work.
All I could do was hug her and listen to her story. I had no wise words to share with her. I know there are many in the same dilemma. Big, Bad Harry is back on the prowl.
* Names have been changed
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