Updated: Mar 20
How can I introduce the wonderful lady Amy Spence!! She has been a friend and a shoulder to cry on for several years now!! Amy and I met through HDANI (Huntington’s Disease Association Northern Ireland). We have worked together on many things and even had the most amazing trip to England for the HDYO European camp!!
I was honoured that Amy agreed to do a #mymaymessage and I must give her credit for the # because my brain is slowly starting to fail me, it is so full of HD information, events and ideas!!
So please PUASE !! Stop reading and go make yourself a cuppa, grab your favourite packet of chocolate biscuits and enjoy Amy’s HD story!!
Unfortunately, I know Huntington’s Disease all too well. I first heard the words in 2013 and have hated them ever since. For a few years before, my family knew there was something wrong with my Grandfather’s health. We had guessed it was Parkinson’s due to the frequent jerky movements and my grandparents went along with this. It wasn’t until his illness had gotten too hard to hide that we found out it wasn’t Parkinson’s, that it was Huntington’s Disease. Unsure of what this was or meant, I remember being relieved at the start. I assumed because I had never heard of it that it couldn’t be that bad and at least it wasn’t cancer. This relief quickly began to disappear as I learnt more about the disease and what was happening in the mind and body of my favourite man in the world. My Granda had tested positive for the gene in 1994 (I was 3 years old) and both him and my Nanny hid it from the world until 2013. They too didn’t know much about it and thought it was better to keep it a secret than break their family’s heart. Unfortunately our hearts were still to break as this was only the beginning.
My Granda was a father figure to me and I lived with my grandparents for many years. This meant I seen first-hand the deterioration that Huntington’s Disease was inflicting on my Granda and what it was hell-bent on taking from him; his memory, his speech, his body and his independence. As a result of this, I became one of his main carers and I only wish I was able to do more. Unfortunately we lost my Granda. He passed away on Saturday the 17th of June 2017 in the Macmillan Unit of Antrim Area Hospital with me and my family by his side. Although I have great memories from conferences and youth events, this is what I will remember most. The moment we lost him and how hard it was to watch. I will never forgive Huntington’s Disease for this and although it was nearly two years ago, I still cry writing this.
Thinking about the famous saying “every cloud has a silver lining”, people probably think that my silver lining is that I am not at risk. My Mum tested negative for developing the gene so myself and my two brothers are risk-free. But that doesn’t comfort me. It fills me with guilt and dread that I will have to watch it again, which I don’t think is any easier. My Uncle is the other father figure to me and he is still at risk of developing HD. I can’t even describe the thought of knowing that but it makes me shake, cry, vomit and be consumed with panic and fear. Why does it have to threaten more members of my family? Wasn’t one more than enough? I suppose if I had to pick, my “silver lining” is 2019’s Belfast City Marathon. A few days ago my Uncle and 16 year old Brother took part in the relay team for HDANI and have helped to raise both money and awareness for the charity and disease. Despite Huntington’s Disease taking my Granda and not letting him get the chance to fight back, I can only hope that his death is not in vain and because of him, we are able to do EVERYTHING WE CAN to prevent this happening to more families.
They say it’s “a family thing” because yes one person gets it, but it doesn’t stop there and every child of that person is still at risk and everyone else has to watch it. Knowing there is NO CURE and there is NOTHING you can do for the people you love the most is EXCRUCIATING and makes you struggle to breathe. Every member of the family has to deal with HD and it is the hardest thing I am yet to experience. Watching sufferers lose independence while watching ourselves lose control is AGONISING and it needs to stop NOW.
May is the set awareness month for Huntington’s Disease but that doesn’t mean it should start on the 1st and end on the 31st, it means it should be at its most POWERFUL during these weeks and continue the whole year through. I can only pray that more is done for HD in the very near future and in time to stop MY family and other families losing another hero. That’s my dream.
Did I warn you to get the tissues?!
Amy is a beautiful writer and has her own blog, so PLEASE go check it out !! Write to Reid is all about Amy’s life!! Travel, lifestyle and wedding planning.
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Thank you Amy for sharing your HD story with me and the #ImNotDrunk readers!!