My story begins in 2008 when my Dad was diagnosed with Huntington's Disease, already showing symptoms.
My father inherited the Huntington's Gene from his mother, Granny Betty, and i have very few memories of my Granny. I can remember that she was in a nursing home and wasn't able to speak. When she passed i asked my mum why my aunt was crying so much, not understanding that she lost her mum to a horrible disease. Something i would understand in years to come. Sadness i would feel when Dad lost 14 years after diagnosis.
Dad was 41 years old when he was diagnosed the symptoms which he showed were uncontrollable movements and personality changes. You can get tested for HD in the UK from 18 years old. My dad and his brother took the test but never got their results, thankfully their sister tested negative, and i was glad for her support in the last few days of Dad's life. When you receive results, you aren't always symptomatic, dads symptoms were difficult to diagnose, Dad was in the Kegworth Air Disaster which happened January 8th 1989 and due to the injuries, he had minor movements, which we were used to. The damage he suffered to his legs always left him jerky, and twitching. I was used to Dad being like this. Looking back, the most noticeable symptom was probably the personality change, but it's easy to say that looking back.
When Dad was tested and received his results, our relationship was broken. He was angry, and taking a lot of his anger out on the people that were closest to him. I was 15 years old and didn't fully understand what was happening to my father, and why he was treating me a certain way. This is part of my story i don't like to dwell on let's just agree to say, it was an incredibly tough few years and eventually i got the support i needed to deal with the impact this time in my life had on me.
My brother and I cared for our dad for the 14 years he battled Huntington's Disease. My parents were separated/ divorced for most of my life but have done an incredible job raising my brother and me. There was never a school play, piano exam, or activity my parents weren't there in the crowd supporting me.
I hadn't heard of Huntington's Disease until my dad's diagnosis, yes, i knew my granny Betty had a disease, but that was all the information i had. In 2008 we still had dial-up internet, with a computer sitting in the living room. I still remember the dial-up tone that night i took to Google, to find out what was wrong with my dad. I wanted answers, and i wanted to understand what was happening to my family. I needed to know everything.
Horror stories met me on Google, mental asylums, hiding your loved one, and not a whole pile of support. The word hereditary was everywhere i read.
To cope with Dad's diagnosis, i jumped into fundraising to help the Huntington's Disease Association Northern Ireland, daddy had started attending their monthly support groups in our local town. Over the years i would get more and more involved. Joining their board and becoming a staff member once i graduated from university. It felt good to give back. I can remember applying to Universities, i was applying for mostly medical subjects, but had one wild card. Leisure and Events Management. With the experience i had gained from volunteering for the charity, i wanted to do more. I wanted to help people more. I'm getting a little ahead of myself, but let's just say in a world of upset, disease, and emotional distraught let's just say one dream did come true once i graduated.
Things were quiet for 2 years after diagnosis, as a family, we continued our 'normal' life, and Ryan and i progressed into further education. Ryan was training to be a joiner and i eventually attended a college to study Medical Science. When i was 17 i took on the caring responsibility of my dad.
Due to a mix-up in paperwork, i studied my A-Levels for 3 years, which was a year longer, but I managed to graduate with a DDM (AAB) in Medical Science. Over the 3 years, i somehow managed to juggle numerous jobs, including babysitting, Sales assistant, Water Ski Instructor and Subway I cared for Dad. Driving an hour from school back to Dad when he needed me. It was a struggle, and after around 9 months, i moved back home, but this was a financial strain as i was driving more petrol through my car than i was earning. I missed the life i had when i lived in the town my college was in, i had made friends there and wanted to move back. Over the next few years, my brother and i developed a system to ensure Dad had the care he needed with the help of the social worker and care assistants and we were able to live part of our lives.
One of my fondest memories was going to visit Dad to tell him i had gotten a summer job teaching water sports in the Adirondack mountains at the number one summer camp in the United States. I ended up doing this for three summers, 2012, 2013, and 2017. It was an amazing experience, and my dad was delighted for me. He loved the water, and more importantly, skiing. He passed his love for this sport onto my brother and me, and still to this day, we have the speed back he gifted us.
No matter what happened over the years, my brother, dad and i were a team, we just made it work. Looking back, i honestly have no idea how but we did.
In my final year of college, i applied to University and was accepted to Oxford Brooks to study primary education, an amazing opportunity i had to think long and hard about accepting. I can remember growing up, i had the most amazing teachers in primary school. I told our p1 and p2 teacher that i one day would take her job. I decided to decline and went for a career in the Armed forces, i went for interviews and decided i wanted to work in the hanger and planes. That dream was short-lived, as i was not tested for Huntington's Disease. The army did not want to enlist someone who may develop Huntington's Disease.
Jumping back to when i was 18 years old, i did start the testing process, it didn't exactly go to plan, and you can read more about it here. Let's just say the support wasn't there, and at the time i was so angry. How dare they not let me test and make me jump through hoops to find out my genetic fate? I wanted to know! Right away! At 30 years old, i can look back now and as much as i don't want to admit it, it wasn't the right time for me. Testing is such a personal thing to someone living at risk of Huntington's Disease. Each person needs to make a decision that works best for them and their situation. I was not in the right place, i was not mature enough and honestly, would question how i would have handled the results.
For anyone still reading, i still have not tested, and live at risk.
Dad lived at home, in his own home for 10 years, spending the last 4 years of his life in a nursing home.
The decision to place Dad in a home was incredibly difficult, i told myself i was doing the right thing for dad's care. He was no longer safe at home due to falls and eating risks. The Christmas i visited Dad in his 1st nursing home, i broke down. As my brother walked into the day room, i stopped at the door and looked across the room to my father. My big strong daddy who taught me how to drive a boat, who played with me in the garden and bought me my mini moto. As i stood in the door way i saw a man who broke my heart, he was still my daddy and always would be, but he was different. He was sick.
As always, my brother was there, and we got through that Christmas, shortly after moving dad into a different nursing home where he would stay for 4 years. The nursing home was incredible. I had worked there previously and so had my mum, so we knew the staff and it felt like the best place for Dad to get the care he needed. I knew this was the right place for Dad, because, it didn't upset me to see him in there. i knew he was safe and cared for and the staff adored my dad. When he first moved in he was still able to talk in his way and get about with a walking aid. Over the 4 years, this declined like the past 10 years.
It has been an absolute roller-coaster over the past 14 years, and one blog post would never be enough to tell you all about it. Although there were many difficult days and arguments, there are many cherished memories.
Dad lost his battle to Huntington's Disease in 2022, love by his family, with his son and daughter by his side. I was supported by family and friends through the 10 days we sat with him, and had the chance to say goodbye. We laid Daddy to rest on a Friday, and during a beautiful service, i cried for the man i had loved.
Huntington's Disease is a complex disease, and although my story is full of many avenues to navigate, not everyone will have the same journey. I hope reading this you will not feel as alone as i did in 2008 on Google.
The HD community has been incredibly welcoming over the past few years and always supported my family and me. They showed love and support to my family, and if you are reading this new to HD or an OG like myself, i beg that you get involved with the community, to feel the love and support. Take the first step and drop me a message on Instagram to say hi.
Thanks for reading, and welcome to the Huntington's Disease community.
