I want to explain what #imnotdrunk is, every week and every interview i do i am asked
“what is #imnotdrunk about?” I hope this helps.
This August I was able to attend the Euro Camp for Huntington’s disease, it was the most overwhelming experience and i truly loved it. I was able to attend the camp with four very good friends from here in Northern Ireland. We all traveled the Kent in England and had the chance to work out some of our own demons, meet new people affected by Huntington’s disease and bring information home for our own youth programme.
At the beginning of August just before I left for camp I decided after an incident in July that the stigma around Huntington’s and how people reacted to patients was disgusting and it needed to be changed, this is something I plan to do.
Spending the last ten years around Huntington’s I feel like I have experienced more than a normal young adult. I grew up extremely quickly caring for dad and ensuring he had everything he needed. I also had the chance to watch Huntington’s form into what it is now.
When I was younger I had scaremongrel stories on Google, literally scaring the life out of me, I would sit at my computer crying reading about Huntington’s. At this time Huntington’s disease Association Northern Ireland had one support worker for the entire patients suffering from Huntington’s and their families in Northern Ireland
Let’s just say he was stretched a little thin! But done an amazing job!!
There were no drugs and I believe no hope! There certainly wasn’t anything to back up the idea of hope! For many years I wouldn’t agree that I had hope and for some reason it made me slightly angry when people would wish for hope so much. I believe I am a person who needs facts, I need to see a thing or have some sort of evidence.
In 2016 and soon to be 2017 we have around 14 drug trials worldwide, we have HDYO, HD Buzz, Enroll HD and i feel like thousands of Huntington’s groups worldwide, England, Scotland, Wales, Northern Ireland, Ireland, all across America and many more countries in Europe! It is truly amazing and a great time to be involved with Huntington’s.
When you find out you are at risk from Huntington’s or your loved one has Huntington’s etc it can be difficult and you can struggle to know what to do, think or say.
When my father was diagnosed there was no one apart from my mum and bother and we were all thinking and feeling the same, honestly doctors didn’t really help, dads social worker was only concerned about him and still is. Not one person in the past ten years stopped to ask how my brother and I was coping with caring responsibilities and being at risk ourselves.
#imnotdrunk means the world to be, I was once told if you don’t like something change it from the inside. I do not like the idea around Huntington’s disease and the fear people have when you mention it, it brought tears and despair to families, the unknowing of what the future held.
With #imnotdrunk I hope to break this idea of fear and despair, #imnotdrunk is not only for people living with Huntington’s Disease it is for people who have never heard of it, politicians and media personnel will know what it is like to live with such a disease and hopefully assist in making it better.
In a short space of time (four months) to be exact, I have had a full page spread in a local newspaper to Armagh called the Ulster Gazette, I have had an online article with Armagh I and I have had a radio interview with Help4HD. The posts I put on my Facebook page reach thousands and my blog is read all over. I have t-shirts have sold out in a week and have orders coming in from Scotland and all over Northern Ireland.
Huntington’s is not as doom and gloom as people may think, I will honestly admit that I have hope. I have hope for the future and for my children; I have hope that the gene silencing drug will be on the market. I have hope that my children will never suffer the way I have fearing for my life, as I continue to do so not knowing if I carry the gene. I can protect my children through PGD, and the advances being made in science.
I hope that others will read my stories and some may be scary or not what you want to hear, if you caught my interview on Help4HD you may agree with me that it was a disgusting experience, but it doesn’t need to be know, times are changing and continuing to change, let’s move with them and make the world a better place for Huntington’s patients and carers.
I have many plans and ideas for the future, fundraising and awareness are key to beating this. Knowledge is everything!
I hope that through my Facebook page and blog posts that people will gain a better understanding of Huntington’s disease and that my stories of life events will help people when they are going through these things.
My life is an open book and I will tell you anything and discuss anything to do with Huntington’s disease.
HD patient and loved one no longer the person you knew
Testing and what that means for you future and your families future. How hard making that decision can be.
PGD and the choices you have around children weather you are at risk or tested
Finding out your loved one is sick
Growing up with HD
Awareness to those who have never heard about Huntington’s disease
Law enforcement and what understanding they have
Nursing homes and the lack of knowledge around HD,
THE LACK OF AWARENESS IN GENERAL
This is the topics I hope to discuss and shed light on, as well as tell my story on how I dealt with certain situations, I ask the readers of my blog to understand, in order to tell my story I need to tell the truth and that does not always shed people in a good light. I do not want to offend anyone or upset anyone, I am simply telling the truth in my opinion.
Like always remember to like my Facebook page and share any content you found useful. I am not a medical professional this is my opinion on life experiences.