The Ulster Gazette very kindly printed a story about my life with Hu
I would like to thank the Ulster Gazette for this opportunity for raising awareness and getting my story out there! The article that Ms Hammond wrote was perfect, she was able to tell my story better than i could have imagined!
Below i have added the story for any one to read!! As some of my readers would not be local to the Armagh area and could not access the paper.
This article was published in the newspaper for the week of Thursday 24th November 2016
A YOUNG Killylea woman is hoping to raise awareness of Huntington’s disease – a condition which currently affects hundreds of people across Northern Ireland.
Ashley Clarke knows only too well the difficulties often faced by families affected, having cared for her 50 year old father Dessie for the past 10 years.
In August this year, the 23-year-old Leisure and Events Management student at the Ulster University started a campaign to help raise awareness of Huntington’s disease.
Huntington’s disease is an incurable brain disease that slowly breaks down the centre of the brain causing a gradual loss of control over movement, speech, behaviour and thoughts.
Speaking to the Ulster Gazette, Ashley explained Huntington’s is a rare disease which is often unheard of unless it affects you personally.
“In the past 10 years, I have had to deal with more than any young adult; it has been difficult!” she explained.
“With the difficult days, there are great days and I cherish these! The young adults and patients of Huntington’s need a positive message and to know that everything will be ok.
“There are so many unanswered questions when it comes to Huntington’s disease and I hope to assist people in dealing with these.
“I also recently started the hashtag ‘I’m not drunk’ as very often people living with Huntington’s are mistaken for being drunk. I have been overwhelmed by how fast it has taken off as it was effortless and happened so quickly.
“I have spent the past 10 years caring for my father who was diagnosed when he was 40.
“Dad was diagnosed when I was about 14. I was still at high school and when I was 16,
I became his carer.
“Ever since, we have been dealing with social workers and doctor appointments and 22 tablets a day and the demands of looking after him.
“His illness made him very hard to deal with and put up with, but we had to keep reminding ourselves, ‘it’s Huntington’s’.
“It definitely has been difficult, but I wouldn’t have it any other way.
“Huntington’s is so unknown and there are so few clinics; a lot only run a couple of days per week.
“I think the lack of awareness on Huntington’s is hard as well and the lack of support for carers, as their voice is often pushed to one side.
“In September, I did a medical training event on Huntington’s and there were 80 people listening to me and hopefully when a young carer comes in, they will think about what I have said.
“Health professionals see daddy once a year and I see him every day, on his good days and bad days.
“On his good days, he’s my daddy and on bad days he can’t even talk.
With Ashley’s granny also having Huntington’s, it means she also has a 50 per cent chance of inheriting the disease, which usually takes a sufferers life between 10 and 25 years after symptoms start.
“My granny had Huntington’s disease and she passed away when I was quite young,” she explained.
“I can remember hearing granny was sick and can remember she couldn’t talk or walk, but there was nothing ever really said about it.
“Prior to his diagnosis, dad’s personality started changing and he was very mean in some of the things he would say, which was really not like him.
“Daddy was always well mannered, well presented and you would never have heard him swear, but he was snapping and swearing at people and just wasn’t himself.
“Following his positive diagnosis, he lost the licence straight away and because he was a lorry driver, he lost his job straight away.
“Going on to Google 10 years ago, it was total scaremongering and you were made to feel your life basically was over and you were going to die.
“Looking back now, I don’t think the support was there and I don’t know who let people down but there was somebody. I was lucky in that I had my family, but we were all struggling through together.
“Dad’s bank card was stolen in the early years and his account was cleared out, so he was put into debt and it was the Huntington’s charity who stepped in and tried to help.
“The charity has grown phenomenally since then and we now have youth workers and a volunteer youth counsellor, so others will not have to go through what my family had to do.
“Nobody ever tells you what is right or wrong and that was pretty hard on me and my brother as we were only 16 and 18 at the time.
“I’ve been involved with the Huntington’s charity since I was 16 and started fundraising. Two years ago, I asked if I could be on the Board and I was accepted.
“I am currently in my third year of leisure and events management and I’m doing my placement with the Huntington’s charity.
“We are currently working on a youth programme, funding, building up the charity and helping people.
“I spoke at the Huntington’s disease conference and if I could do a speaking event every month, I would as I love telling my story.”
Ashley revealed that while her father’s condition is continuing to deteriorate, the family was delighted he had been able to celebrate his 50th birthday recently with family and friends.
“We had a massive celebration and were overwhelmed by the amount of people and gifts and cards and he was so with it.
“The man doesn’t want for a thing and he has care assistants going in four times a day and my mum, my brother Ryan and myself all try to do our best for him.
“If he needs something we go and get if for him. It is about trying to make the best of a bad situation.
“I would just like to get the message out there that just because you get a positive diagnosis, it doesn’t mean your life is over.
“I have had some great memories with dad and it is all Huntington’s related. Daddy’s happiness has been key for the past eight years, but the last two years we have had to say no to some things due to safety implications.
“A wheelchair is not always useful and my body is not strong enough to withstand my 50 year old father.”
Ashley said her family would like to extend their thanks to residents living in the village of Killylea who often step in and help out when needed.
“It is just unreal how the community comes together and looks after each other. It’s so nice as he would be saying ‘I need wee sticks’ and on many occasions the owners of the village’s shop would leave them over for him.
“That is so nice, as it means I can go and sit and have a cup of tea with him, as very often we spend so much time doing things for him and we are always trying to juggle.”
Thank you again for reading my blog #imnotdrunk, please subscribe and leave any comments or questions and i will get back to you.
Below is a link to the #imnotdrunk Facebook page if anyone would like to login and give it a Like and Share i would appreciate it!
Remember i am not a medical professional and anything said on #imnotdrunk is my personal experience or opinion.