Hi I’m Damon! I’m 27 and HD POSITIVE!
I am the campaign for my brain HD ambassador and south east lead liaison for service users engaging with our services!
Follow me on my journey at thehdblogger.Wordpress.com
I guess I should probably start with me, I’m Damon... I’m 26 and I have Huntington’s disease. I hate writing these.... I need to make that very clear! I always get confused about where to start, and then when I think about where to start, I start to think about the Sound of Music and I then sing let’s start at the very beginning because it’s a very good place to start!
But at the beginning isn’t overly important.
What is important is after the beginning...
Whether it be my first understanding of what Huntington’s was?
Whether it was the first time I really saw the symptoms in someone I loved?
Whether it was the time I decided to get tested?
Only to decide against it after three months. And then decide to get tested again and then choose not to again......
Or whether to start at the hospital when I was receiving the results and my heart sank into my stomach as I looked at my fiancée Ian and realised that 99% of everything that we planned together didn’t matter any more because we weren’t going to have those years.
I could’ve also started when we lost mum, all my aunts and uncles… I could’ve started when my sister got really sick.
but I think before you get to know about me and who I am it would be beneficial for you to know about how Huntington’s has been the family cares for generations.
When you have a parent that carries the Huntington Jane you have a 5050% chance statistically a flip of a coin decides whether or not you have it. Which is bad enough I feel however for some reason in my family that’s never been the case that hasn’t been one generation in the last four generations at least that hasn’t had Huntington’s disease. And when I think back to a very distant cousin who didn’t have a Huntington’s disease but was still a carrier!
there’s never been any escape and I think because of that my family is had to just accept that our existence and our experience throughout life would be somewhat different.
Ours was a family full of young carers, as was the family that never really discussed the disease. Not unlike I’ve just found family member, Huntington’s may have Never had a place at our dining table but it was always there. Hovering like a never clearing fog.
I use fog as a metaphor here for one reason and that’s because when I think about what Huntington’s does and what it has done and what it is doing to me my family and other people who suffer,It explains a lot while saying very little. When I was younger the Huntington’s cloud was in the corner of my garden I always saw it I knew it was there but I didn’t really mean anything It didn’t really do anything it just was.
When I got to the age of 10 the fog consume the garden I was more aware of its presence and I knew that it could kill. I knew that it was because of it I had to start taking responsibility of the household and care of my mum. Why my aunts were always so poorly and why no one in my family could stand still.
It was why most of them had developed a drinking habit. I still didn’t understand completely but I had lost the sunshine
Time passed we lost family we lost mum, We never lost the fog by the time all this past the fog had swallowed everything that was.
It slowly and to every part of everybody it was relentless and the more It ate the less you could see the less you could see the less you could grab, by the time it came to say goodbye there was nothing but smoke, and me clinging on to air hoping I might catch hold of something.
I lived The best life I could, it wasn’t always easy. There were a lot of challenges. I suffered with mental health for obvious reasons. But I lived and I loved and I listened.
When I met the love of my life Ian I was 19. He saved me insane many ways and continues to do so even today. We get married in August 2020
We have two dogs Max and Theo who I simply adore. We live by the sea which I find really healing I love being able to see a starry sky!
I have a job that I simply love I work for the NHS!
So yes I do have Huntington’s disease and Yes everything I eat has to be pureed and yes everything I drink has to be thickened but that’s not going to stop me living! Be in terminal doesn’t mean you have to stop living!
Now I get to the point where I’m really happy because I get to talk about campaign for my brain. I was approached by Emma in regards to a Facebook page she made about PIP and I explained the issues that I’d had and there were many! With her assistance I’ve not only been able to make it into a newspaper publication I’ve also been able to go on the radio and share my story and raise awareness we continue to talking and speak most days she has a really good understanding of Huntington’s disease And an amazing overall clinical knowledge in general being a paramedic! I feel as though I’m blessed to have met them both Emma and Catrine ( who I also have had the pleasure of talking to for a little while but is fabulous!) Has invited me to be a Huntington’s disease ambassador for CFMB and I’m so honoured!
So that’s it! I’ve done it! I refuse to write further than this:
If you aren’t willing to fight for what you believe in, and what you know is right…
you might as well be painting in the rain