I read so many stories about people’s lives, with details given on specific dates and even times, sadly I have the world’sworst memory and would struggle to tell you what I ate for lunch yesterday. I can't remember the exact day, time, or month Huntington’s Disease entered my life but let me share with you the funny story about finding out dad had tested positive for HD.
What I do remember is being 14 years old, in the local pub (not drinking obviously) with my uncle who was home from America. As we stood at the bar and my Uncle ordered me a Coca-Cola, he proceeded to tell me it was such a shame about dad. At this time, dad and I weren’t talking, I was getting the brunt of dads anger due to the symptoms of Huntington's Disease, and as you can imagine at 14 years old, I wasn’t exactly taking it very well. This led to Uncle R in a roundabout way telling me that dad had the same disease as Granny. My grandmother who also had Huntington's Disease several years before this. I have very little memory of her, and the memories I do have, are not pleasant as she was in the later stages
I didn’t think too much about this on that night because to be quite honest, I had no clue what I was being told. For all Iknew, dad had a cold... but the next day I asked mum what was happening and what was wrong with dad? She explained what she knew at this point, but honestly, 14 years ago there wasn't a lot of information. To use the internet, you still had to unplug the house phone to 'dial in' and google was filled with horror stories, therefore I am so passionate about positively sharing my story! After getting sucked down a rabbit hole of google stories, I was scared, alone and worried for not only my dad’s future but also mine.
It doesn’t bother me how I found out about HD, I don’t dwell on the little things, mum thought dad was going to tell me, considering it was his news, and dad thought mum would tell me… I guess Uncle R done it for them. Over the past 14 years, I have met many people who have known about Huntington's Disease from a young age, others who find out later in life, and some people who find out in the most horrific ways. It is not easy telling a loved one about a condition that will eventually bring a lot of pain and suffering to your family. It's not easy telling your children there is a genetic fate hanging over their head. In 1993 when I was born, there was very little science around Huntington's Disease. The gene had just been discovered. Even in 2006, there was still very little, smartphones were a new thing (and very expensive), HDYO had not been created yet, Facebook was something business people used (the cool kids used BeBbo) and connecting with people or finding out information was hard!
I believe it is what we do with the information we are presented with that makes a difference, it is how we handle this information. I have had my ups and downs over the years but feel like I’m in a good place now. I don't want to give up, Idon't want to let HD win! I will not let it. IF I am diagnosed positive and will one day begin to show symptoms, I was my friends and family today - 'Didn't Ashley have a good life' 'Didn't she do it all' 'Didn't she fight to the bitter end'. I don't want to give up and waste the good years I have left. This is a big IF, remember, there is a 50% chance I will have Huntington's Disease, but there is equally a 50% chance Iwon't inherit the disease. That's the 50% chance I want to focus on.
I have shared my story many times over the past ten years, and it has changed over those years. New experiences, challenging times and different emotions and feelings can bring on different life challenges. I have cried, laughed, shouted, worried, and wanted to run away from it all. Every time I get these feeling I try my hardest to deal with them, Ifirmly believe that we need to acknowledge our feelings but not dwell on them. It is what we do with the challenges that life throws at us that make us the people we are. I recently read Tuesdays with Morrie by Mitch Albom and Make you Bed by William H. McRaven and honestly, I can't recommend them enough. I won't pretend that I have always had this outlook on life, for many years I was angry! I was mad at the world; I was mad at God and I was mad at my dad. Why did he have to get sick? Why did I have to look after him? Why couldn't I have a normal life like my friends? Why did everything I do have to be affected by Huntington's Disease?
I never did get the answers to these questions, but I learnt to live with them.
How? I accepted the fate I had been given and rose to the challenge! I turned a negative experience into a positive. I have built a career and hobby out of this negative experience and I have had a lot of fun along the way!
I am incredibly blessed and honoured to have been awarded Champion of HD 2020 by Champions for HD. I have had blogs featured on Find A Cure, The Patient and Client Council, I have spoken at many public events and medical training events and also been interviewed by many people including the BBC, Discovery Channel and other bloggers. It isn't always easy sharing my story, in 2019 I was asked to speak in front of 600 people. The topic of my talk was what Ihad been doing for the last year working for the Huntington’sDisease Association Northern Ireland and sadly a week before the talk, I was given some bad news about dad.
I took to the stage, microphone in hand and began my presentation, a line in my talk was 'My daddy has Huntington's Disease'. Well, I could barely get the words out before the tears came! Someday soon, that line will be - My daddy had Huntington's Disease! I continued my talk, finished it, and continued to cry (I obviously tried to hide it). We all have emotions, and we all must let our body and mind feel these emotions! Later that day, a lot of the audience came up to me and thanked me for sharing my story, they said they could see what it had meant to me to get the opportunity to work for the organisation that had provided me for the support over the years and how must I loved my dad.
For anyone who has heard or read my story before, you will know that my parents are divorced! They separated when Iwas around 4 years old and honestly my brother and I haven't known any different. The fact that my parents are no longer together has not impacted my life! Growing up we spent every Christmas together, Mum, Dad, Ryan, Uncle R, and me... We spent every other weekend with my dad and always lived within a few miles from him. We were and still are a happy family. I am incredibly lucky to say our family has grown, several years ago my mum met my stepdad, I now have two stepsisters and I love our family. We support each other and have great fun together! Just don't play Trivial Pursuit with them!!
My family and I have a great relationship, I had a childhood and I always remember my mum and dad there for me, Christmas, piano exams, school plays, Brownie stuff (cause I've no idea what I did there – but yes I did get all my badges :D). Families are all different, a family can be big or small, have two mums, or two dads, or like me, blended with another family. I wouldn't change my family for the world, and Icouldn't have gotten through the past 14 years without them.
So there I am, 14 years old, and my dad has an illness I know nothing about, I remember my Granny and how she ended up, but I’m pretty sure I was about 4 years old when she passed.
I did the only thing I could think about when I found out about dad, I ran to my cousins, it was the summer holidays. I spent a week with her, hanging out and going to the funfair, the day I was due to leave I cried and told her about dad. She knew something was wrong with me and was just waiting for me to tell her. I bottled my emotions up for the entire week, Icontinued to bottle up emotions over the years. (See, I told you I wasn't always so wise :D) Let me tell you all something, it is never a good idea to bottle up your feelings. It is hard to talk about our feelings and it is even harder to talk to those we love about our feelings. There is a fear that our feelings might hurt or upset others, we don’t want to be vulnerable or seem weak. Sometimes it's hard to talk to my brother or mum because I want to seem strong for them. I don't want them to worry about me, but by talking, it can bring us closer together.
At the age of 23, I had bottled up my feelings so much, that Iwas ready to explode with a wealth of emotions. The Dr was vising my dad at home one day, and my brother had called her to say, 'My sisters broken' (his words). When the Dr was leaving my dad’s house, she told me she wanted to see me in her office in 10 minutes! I had no idea Ryan had spoken to her, after a lengthy conversation with her, it was decided Iwould be placed on Anti-Depressants. I was done, I didn't want to look after dad anymore, I didn't want to volunteer for the HD charity anymore and I quite frankly didn't want to ever hear the words Huntington’s Disease. There was a lot more to this story, and sadly I was let down by people who should have been supporting not only my dad but me. The past ten years of my life as a young carer was being questioned and belittled, and I couldn't handle it. I was questioning every decision I had ever made!
I wasn't on the pills very long, and in a couple of months, Iwas back to my normal self again. I took a much-needed break from looking after dad and the HD world, and recharged my batteries! I realised that I had done my best over the years! My dad wouldn't have wanted me to give up my life to look after him, he would have wanted me to try balance school, work, and his needs. He pushed me to go to America, he pushed me to go to University and he pushed me to live my life.
I came back fighting after this little HD Holiday because that was the summer #ImNotDrunk was born!
If you need an HD holiday, reach out for help, it does not mean you are weak! It means you are smart! Talk to someone whether it is a family member, Dr or HD organisation! There are people to help, and if you don't ask, you won't get!
One of my struggles was missing school to take dad to appointments such as the OT, Dietician or Speech and Language! Turned out, these appointments could take place at his day centre. The manager of the day centre would sit in on them to make sure dad was okay and the social worker would email me any updates from the appointment! It wasn't ideal, and I would have preferred to be there, but sometimes it just wasn't possible. Juggling full-time education, part times jobs (yes, I had more than one) and dad wasn't always easy.
Over the years my brother and I fought like cat and dog growing up, like most siblings I’m sure, but were the complete opposite now, and have been for some years. As a family (me, mum, and Ryan) we looked after dad for 11 years at home, we do his shopping, cared for him, and ensured he had everything he needed. We had help from care assistants who came into the house at different times, and over the years the number of times a day they called was increased with das caring needs. I honestly don't know how we would have managed without them.
Ryan and I came up with a plan, he would look after the day to day-care, such as calling with him to make sure he was okay, paying bills and fixing the many things dad broke around the house. My job would be looked after the social workers, manage dads’ appointments, shopping and social calendar which was quite extensive ill have you know! This meant that I had the freedom to attend school. Ryan went to the local tech and trained to be a joiner, being two years older than me, he was two years ahead in education, so when dad was diagnosed and in very early symptoms he was already started in his training. By the time I got to my A levels dad needed more help with daily tasks, but I wanted to study medical science and that was an hour away at college. This made things a little more difficult, but not impossible. Ryan and I just needed to be more organised! It wasn't easy balancing the care of dad, Ryan and I didn't always agree, or see eye to eye but we made it through all the struggles and thankfully had a lot of help from our local community.
From the age of 14 to 17 years old, it was a bit of a blur, I became obsessed with HD, I googled everything, keeping in mind it was the Summer of 2007. There was very little out there, very little a young person would understand. I went back to school and finished high school with 2 GCSE’s, I was a good kid in school, always handed my homework in and never really rocked the boat, but I was bullied for almost the first three years of high school, the worst being my third year. It was the start of social media, Bubo if anyone can remember and sadly social media bullying wasn't really known about nor handled well in schools. Pupils took it upon themselves to make a Bubo page about me, placing my mobile number on it and offering inappropriate services for a 14-year-old girl! There were lies and stories posted about my mum and dad and their personal lives and sadly it got into my school. The school did the best they could to handle it, it got to the point where I had to leave school one day. My last two years of high school were a mess, I finished with 2 GCSEs for those of you reading this outside the UK, ill break it down.
I had 9 exams my final year of high school, a mixture of core subjects and then others such as music, I passed two, English and Music. In my last two years of high school, I was rude, spoke out, got detention and even isolation (I was made sit in a room on my own for an entire day doing homework). I was a nightmare. The tried to help me, I was put in counselling which after I got over my teenage attitude, I enjoyed going to. After a ‘Fight’ which never actually happened, I got put into anger management. Pretty much a girl called me a name, and I tried to flatten her. I guess you could say I was angry with the world, but I was 15 and my world felt like it was crumbling.
My amazing best friend saved me, I remember sitting at the local hangout spot one day, and she pretty much gave me a reality check! She gave me the kick up the ass I needed! I got myself back on track and went to the local college to fix the lack of GCSE’s I had obtained, I was then accepted into a college an hour away to study Medical Science with the hopes of attending University. Everything was starting to work out, everything was starting to settle down.
It was hard living an hour away and looking after dad, people sometimes think that washing a person, feeding them, and putting them to bed is all it takes. What about their shopping, food, clothes, taking them out, entertaining them, fixing broken things in the house and other days to day activities?Think about what you do in a day, now do it all again, for a second person.
At the start of dad’s illness, he was very hard on me, when Iwas sitting my exams in high school, he told me I would never amount to anything. I didn't go to the right school; Ishould have gone to the grammar school for better education and a lot of other mean comments about my lack of brains... This went on for some time, it did start to sink in and was hard to listen to for several years. The ongoing abuse that dad gave me emotionally was brutal, to be honest. Let's be fair we all know it was the Huntington’s Disease, but try telling a 14-year-old teenager that.
Honestly, this is a side of my story I don't feel I have shared, it been hard to write this, as I hope it comes across how it sounds in my head! I suppose my point is, no matter how to mark things may seem or how much you are struggling! Never Give Up! You will get through it, there is a light at the end of the tunnel and you just need to figure out what works for you to keep your head above water. Please do not venture through this journey on your own, there are plenty of people out there to help, you just need to ask for it. As I have said, it is not a sign of weakness, but a sign of strength!
My blog is my baby, and my only regret is that I didn't start it sooner. I started #ImNotDrunk Lifestyle blog as I said in 2016 after daddy was publicly humiliated on a day out. I was fed up with people thinking he was drunk, and their lack of knowledge on Huntington's Disease. Mostly I was afraid of no one knowing what it was like, what Huntington's Disease was. There were so many Facebook groups I was a member of, and the same questions were popping up, the same problems and the same stories. I wanted to help, I wanted to try to answer some of these questions, and share my experiences so people knew they were not alone.
#ImNotDrunk is my side game, you'll find the Instagram page at @imnotdrunklifestylebloga and the Facebook page at @imnotdrunkblog. I currently work full time for the HD charity in Northern Ireland and blog in my free time. When Istarted the blog, I wanted to share my HD story, some tips and tricks I found along the way, ideas which I have found work and just anything along the way that I might encounter. The good, the bad and the ugly.
At the minute we're in the middle of the second wave of Covid- 19 and I can’t see dad, so it has been kind of hard to blog about HD when I haven't left my house in about 8 months! #ImNotDrunk is not just about Huntington's Disease, it is about many aspects of my life. I share my weight loss journey and the lack of it! I share what it is like being single again and living at risk of HD, and I share my day to day life. There are cooking recipes for those who like me, could burn water and ideas, stories, and trips down memory lane.
I have taken the pandemic off to regroup and concentrate on myself, I worked from home the entire way through the pandemic and continue to do so. 8 hours a day on a laptop and the pandemic rolled into one little fun bundle, left me with no motivation, or very little.
BUT
I have some ideas for content and can’t wait to share them with you, keep an eye out on Insta stories and www.imnotdrunklifestyleblog.co.uk
So, at 27 here I am, living back at home with my family and 10 minutes away from dads nursing home. I work for a Huntington’s Disease charity and I blog about my experiences with Huntington's Disease, I know what you’re thinking, that’s a lot of HD! I know, but I try to look after my mental health and enjoy life.
It's scary living at risk of Huntington's Disease, it's scary to think that in ten years I might start to show signs. It's scary to think if I have children, I could pass it on.
If life was supposed to be easy, it would be very boring. What would we have to complain about (bad joke)?
At 27, I have experienced a lot, I have loved and had my heartbroken, I have been in an abusive relationship, let down or betrayed by friends and family, cared for dad, and probably faced some big conversations and decisions many adults haven't had to face. Note I reference adults as if I’m, not one! 27 and I still don’t feel like an adult **Laughing**
I will get tested one day before I settle down and have kids (if that's on the cards for me) but until then, I will continue to share my story with the world and hope that people continue to read it.
To find out more about Ashley and her blog please visit: