This week’s blog is written by Ashley Clarke.
Ashley takes us back to when her dad was first diagnosed with Huntington’s Disease (HD), and reflects on her journey from daughter and carer to HD activist and lifestyle blogger.
See how she’s living life in HD below.
What is Huntington’s Disease (HD)?
Huntington’s Disease (HD) is a rare genetic neuro-degenerative brain disease, which gradually causes a person to lose control of their thoughts, feelings, behaviour, movement, communication and the ability to swallow.
HD is caused by a faulty gene. It affects both men and women, and there are over 150 people who are currently diagnosed and living with symptoms in Northern Ireland in addition to approximately 5 times more people who are at risk of developing it.
Symptoms most commonly start between 30-50 years of age, but it can also affect children. If you have HD, there is a 50% chance that each of your children will get it. If you want to find out more, I recommend checking out Huntington’s Disease Association Northern Ireland, which is a charity in Northern Ireland that’s providing services to families affected by HD.
My Father’s Keeper
Huntington’s Disease first entered my life when I was 14 years old. My dad was diagnosed after family and friends noticed symptoms. He had changed a lot in his mannerisms and personality, and had small, uncontrollable movements.
After his diagnosis, things happened quite quickly. Three years later, I became his carer, and two years after that, my brother and I both cared for him, splitting up the job roles.
As my parents were separated, all of the responsibility fell on my brother and I. Mum helped when she could, and as a family, we got through the past 13 years. It definitely brought us closer together.
When dad was diagnosed, my relationship with him was extremely broken; he was taking a lot of his anger out on my mum and me. Once we got the diagnosis, it did explain a lot, but it was still difficult at 14 years old to put the hurt behind me.
I think for the two years following his diagnosis not a lot changed; dad was still able to do a lot for himself, and his temper continued to be taken out on me.
When I was 17, dad’s partner left. This was when I became involved in his care and things started to get complicated, as he needed more support. It started with small things like cooking and cleaning, but it quickly developed into shopping, personal care and most of his daily needs.
Enter in HDANI
The Huntington’s Disease Association Northern Ireland (HDANI) is the only charity in Northern Ireland which supports those with HD. Their support worker stepped in and supported me through this time, and although my support worker has changed over the years, I have always had one.
I had built a relationship with the support worker, and when I was 16, I decided to organise a fundraiser that raised around £1,500. I had a lot of support from family, friends and my local area. This was the first time that I had ever done anything like this, and I think it was where my passion for events came from.
To Be Tested or Not to Be Tested?
After the fundraiser was over, I felt lost. I had been concentrating on it for months, and it was almost like a distraction before all of a sudden it was over. That feeling of being lost stayed with me for a few years until I was 18 and went for the Huntington’s Disease test.
The process was long and emotionally draining, and in the end, I didn’t receive test results. I believe (at the time) it was the best decision for me. Getting tested for HD is something I definitely plan on doing, but it is also something which you need to be prepared for and do for the right reasons.
You Know What HD is too?
As time went on, I got more and more involved with HDANI. I attended my first conference at 17, and it was an extremely overwhelming experience – I do believe I cried in my room at one point. Dad had been engaging with support groups and other events through the charity, which meant that some people attending the conference knew him; which was a comfort, I guess? I couldn’t believe that all these people sitting in one room were affected by this rare disease. I had not met anyone who knew what HD was, let alone had it in their family – which can be pretty isolating for a 17-year-old I’d like to mention.
Ten years later, I was hoping to celebrate my 10th conference with the charity, but sadly due to Covid-19, it’s been cancelled. We do have a few things up our sleeve though.
Becoming the Youngest HDANI Board Member
At the age of 21, I joined the board of governors for HDANI. I was the youngest ever board member I believe (or at least at that time I definitely was). Sitting on the board for four years taught me a lot. It made me even more passionate about raising awareness and funds for HDANI and the work that they do. I left the position in 2018, as I was entering my final year of university and wanted to concentrate on my studies.
University was a challenge. I was assisting as a volunteer when I could at different HDANI events, and had to juggle my personal life, course work, exams, a job and the caring responsibilities for dad. On top of it all, I was doing an events degree, which meant that there were always opportunities to volunteer at events. I had also completed extra modules, which lead to me being awarded the EDGE Award at graduation.
Coincidence or Fate?
Originally when I applied for University, I applied to do primary education, but as I got accepted into Oxford Brooks, I couldn’t leave dad and go to England. So, I waited and applied again. This time, I applied for medical-based courses, as my A-Levels were in medical science. I did have one wild card though: Leisure and Events Management at Ulster University. Funnily enough, the first offer I got was an unconditional offer to Leisure and Events Management. I couldn’t believe it and took it as a sign. I accepted their offer.
I loved telling dad that I got into University because he pushed me in education. I had to work hard, and I did struggle. Part of his anger was taken out on me due to my abilities in school. It was a very proud moment for me telling him that I had made it to University. Of course, I got a big hug.
Many times in the past 13 years, I have wanted to share an event or experience with my dad. Sadly, you don’t get the response you would hope for. I tell myself he is proud of me, and I remember what he would have said before Huntington’s Disease; which is rather difficult since he was symptomatic when I was just 14. I feel like I have had longer with dad having Huntington’s Disease than with him not having it.
Life Happens When You’re Busy Living
Over the years, I have organised fundraisers, helped out at HDANI conferences, attended a European summer camp, joined the youth committee, completed 9 months voluntary placement through university and assisted at summer camps.
When I graduated university, I took a job in a local department store. With the pressure of caring for dad and finishing up university, I wanted to take some pressure off myself to find that perfect big girl job, so I accepted a maternity cover contract with the department store. I worked in that department store through the summer, and around November (I think), the CEO of HDANI asked me if I would attend an interview in Belfast with her and a support worker. This was right around the time that HDANI was awarded funding for the Rank Foundation Time to Shine leadership programme. From January 2019 for the duration of 1 year, I would be employed as HDANI’s Events and Fundraising officer. I would be supported by the Rank Foundation and work closely with a support worker to fulfil the job role.
Becoming HDANI’s Events and Fundraising Officer
During the year, I attended many conferences and events in England, built on my skills and met some truly amazing people. I assisted in organising HDANI’s youth events (including the 3-day summer camp), assisted various fundraising events organised by members of the public and service users, and even worked on awareness campaigns, such as the global #LightItUp4HD campaign. I have also organised three teams to run the Belfast Relay marathon, organised a fundraiser to celebrate 30 (ish) years of HDANI after their annual conference, assisted at the conference on a high level, and many other things. Safe to say I had an amazing year with the charity. I met wonderful service users, built my skills and will always remember the experience that I had.
Where I Am Today
I am incredibly lucky to say that I am still employed by HDANI and was offered a second year with them. I had so many amazing plans for this year, as I had learnt from last year and wanted to do things bigger and better. Unfortunately, COVID-19 has affected that, but all is not lost. I have been able to continue my work with the charity, keep busy and keep things moving along. It is more important to me than ever to continue to put my heart and soul into the HD world, speak out about HD and give back to the charity that has helped me over the years. It is an extremely tough time for all charities, so I don’t plan on giving up on the one that has supported me and my family.
Yes, it is a bonus that I get paid for the work that I do with HDANI, but I still put 110% of my heart and soul into the work that I do. Why? Because I understand what it is like to grow up with HD in my family, be a young carer and live at risk of inheriting the same genetic condition that continues to take my father from me.
It isn’t always easy living the HD life I have found myself in. I do get upset and have days where it all gets on top of me. Working with the HD charity and watching my father decline can get to be a lot to handle, and I have had my dark days where I can’t cope. That is why every day I feel blessed to have the life that I do. Huntington’s Disease has opened many doors for me, which is how I’ve been able to meet so many amazing people, including medical professionals, attend events and grow as a person. HD has made me who I am today, and whether I am HD positive or not, I will continue to speak out about HD.
Looking for More?
In 2016, I started blogging about my HD journey – my only regret is that I didn’t start it sooner. You can check out my blog at www.imnotdrunklifestyleblog.co.uk. I love sharing my story with others simply because the comments and messages that I get after posting on my website or social media warm my heart. I started this blog before my employment with HDANI and it is completely separate to the work that I do with them.
I felt so alone for years and thought to myself that ‘no one understands what this rare disease is like’. I was wrong. I have a global family of people who are all going through a similar or identical HD journey. I have the ability and confidence to speak out and I love sharing my story to help others. I hope I can continue to do so for a very long time.
Many times over the years when I would have dad out and about for the day, in town or at events, he would get stared at and comments would be made. Due to HD, dad looked drunk, and staggered when he walked. This used to anger me. I would get so mad at people for their ignorance. I soon learnt though that you can’t be mad at people because of their lack of knowledge. That’s when I decided that when dad was out in public, I would use it as an opportunity to educate people; whether they asked me what was wrong or made a nasty comment. Trust me, there were a lot of nasty comments. A lady made one toward dad in an incredibly public setting, and that was the reason I started my lifestyle blog #ImNotDrunk. I wanted to educate people.
I believe I was given this life to make a difference. If I can make one 14-year-old feel a little less alone, then I will be happy. If I can reach anyone who is struggling through their HD journey, then I will be happy.
The work I do with HDANI is not just a job, I LOVE what I do. I love that I can help those here in Northern Ireland through their HD journey. It’s a complete bonus that I get to spend my days working in my dream job for a charity that is so incredibly close to my heart. The youth days are amazing, as I get to be a teenager again and take part in the activities!
Many years ago, I was complaining about the lack of awareness, and just HD in general, to a friend.
She told me – ‘Stop complaining and do something about it’
So… I think I have and I will continue to try.
Thank you all so much for taking the time to read my story. It’s so hard to fit 13 years into one blog post and not ramble on for days. If you would like to find out more, please head to my website or social media pages (linked on the website). I have lots of stories from over the years and I not only share the happy days but the sad days too.
“The greatest discovery of all time is that a person can change his/her future by merely changing his/her attitude.”– Oprah Winfrey