Life with Huntington's Disease

I thought I'd do a little introductions post to kick-start this blog. 

I am Polly and I am 30 years old. I have been married to Jason for the past ten years and we have a little Chihuahua called Bea. I am also a Christian and have been since around the age of 19 years old. My first love in life is reading followed closely by writing. 

I wanted to share with you how I want to use this space. I got diagnosed with Huntington's Disease (HD) in 2012 and have been on a long journey of coming to terms with what this looks like for my life. I spent the best part of my twenties living in denial and fighting away my diagnosis but it was only when I fell into a dark depression that led me to counselling that I finally began this journey of accepting my diagnosis. It's been a really hard couple of years. 

So you may ask what is HD? It is a rare incurable neurodegenerative disease that is inherited causing progressive damage to the brain over time. Although HD is found in our genes symptoms do not appear until 30-50 years old. So many people can rotate through different stages of HD in their lifetime such as being 'at risk' when you have yet to test for HD, being 'premanifest or gene positive' when you have tested and found HD, and being 'symptomatic' when your HD symptoms have started. I will be using lots of these terms throughout the blog and will try to explain them as best as I can. 

We had no idea that HD was in our family. My father had been adopted as a baby and had had no desire to search for his biological parents. He had also no desire for children of his own so he was an absent father in my life. When I grew up I wanted to know his biological family so I started to search for them and that's when we found HD. At the time my grandmother was in a nursing home in the end stages of HD. It was a huge shock for our family. But both my father and I decided to get tested and we both tested positive. 

My whole world came crashing down on that day. I spent nearly all of my twenties defiantly pretending it did not exist and that I was still 'normal'. I was out to prove that HD had not stolen my life away but it haunted me and every turn and left me in constant torment. I was not living with HD, I was living against it. 

So that's what this blog is about - it's time for me to live with HD, not against it. I don't know how much time I have left and I don't want to waste it anymore. I want to use this space as a sort of diary to share my journey of coming to live with HD. Yes I don't have symptoms yet and perhaps people outside of the HD world might not understand why I would do this, might think it's morbid or strange but for me it is not - it is part of the journey. 

According to my genes, I was given a really rough onset age range between 40-43 years old. Of course, I have no idea where we will all be in ten years' time, none of us do. There could be a cure or a medical breakthrough but there also might not still be. So I have to prepare. I'll never be 'ready' to have HD but the day I chose to get tested was the day I chose to know and I cannot unknow what I know. Living premanifest is hard to get the balance between living in the present and also being grateful that we can prepare for the future. 

My father had no time to prepare for HD - it hit him and he had no idea what was wrong with himself until we found out HD was in the family. I, however, still have time and choices that can be made. This is now my life with Huntington's disease. 

My hubby Jason and I.