March 26, 2019

Jane, 42. HD+

We found out HD was in our family a few years ago when my Mum’s brother was unwell with what we first thought was severe depression. My Mum’s parents had known it was in the family but decided not to tell anyone, however it was on my great Grandad’s death certificate. My uncle got tested and had a positive result in his fifties. 

I felt shock - like a bomb had gone off as we hadn’t a clue. My Mum decided to get tested and found out she was gene positive too in her sixties. She is one of 3 siblings and my other uncle got tested and found out he was gene positive too. So, all 3 have HD and are affected in different ways. 

As soon as I found out my Mum had the gene, I knew I wanted to find out either way. I hate not knowing and would rather know so I can plan my future. I was referred to genetics counselling and found the wait very hard. I had my counselling appointments followed by 2 blood tests. These came back positive two years ago. Even though you try to prepare mentally for either option, it is such a shock. Immeasurable.

I have had great support from most friends and family. 

My kids don’t know yet about it. 

I’m one of four siblings and one of them tested negative; one was going to but decided not to, and the other has not decided so far. I have some cousins at risk, one of which has been tested and also tested positive. 

Day to day is usually ok. Cognitively I have noticed a change in terms of how organised I was and how organised I am now, which can be frustrating. Movements that I have are finger tapping, lots of leg movements - toes tapping and legs twitching and kicking out. My work retired me on ill-health, but I am keeping busy. My mood is good after a few tries at getting the antidepressant that works for me. I am trying to be positive as much as possible.

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