When I was 15 my father was diagnosed with Huntington’s disease. This disease has made its way through my family and finally hit my father, I remember my grandmother having the disease although I was very young. The memories I have aren’t the best.
It was extremely tough finding out dad had this disease; I knew nothing about it and didn’t know what to expect. How I found out wasn’t exactly the best way either. I don’t blame anyone for how I found out; I find it rather funny now looking back. I knew dad was getting tested for the disease and My brother thought my mum had told me and he thought she had told me, I’m not too sure but I found out from my uncle one evening when we were in the local pub at a function. It was a shock and hard to come to terms with. At this time I was 15 and don’t think I realised how serious it really was.
I wasn’t exactly speaking to my father when he got his results; he had a horrid girlfriend who drove my brother and me away. And due to the symptoms of the disease my dad had changed, he wasn’t himself anymore. He was saying and doing nasty things to the family and I didn’t have the understanding to think “this isn’t my dad it’s the disease” so when he lashed out I lashed out at home as well.
The next few years were difficult and i will not get into all the details, as it would leave this blog extremely long and probably boring! Not to mention let’s keep some things personal.
My brother and I have cared for dad once his girlfriend left, it’s been difficult adjusting but Ryan and I work together as a team, without my brother I wouldn’t have been able to go to U.S.A for two summers to teach water skiing and wakeboarding, I would not have been able to move to Enniskillen to study medical science and I would not be in Ulster University. And for this I thank my brother!
I’m not going to lie there was many arguments with dad, Ryan and I. Times were difficult and dad was angry with what was going on I don’t no weather it was a case of he didn’t understand or he understood full well and was angry. Maybe it was a bit of both. Either way it caused allot of arguments. I remember one time I was in cleaning dad’s house, one thing I hated to do as he was impossible to please and always had been when it came t cleaning! He started shouting at me that I wasn’t doing something the correct way, the argument ended up with me throwing the hover on the floor and telling him to do it himself. It was times like this that it upset me and I ended up driving to my mum’s in tears, this would result in her calling my brother and then my brother shouting at dad. He was fully able at this stage to clean his own house or even hover and do simple jobs; dad was just being lazy and feeling sorry for himself.
I remember taking dad for lunch and days away, it was fun and I enjoyed spending time with him. Know it is more difficult to do this, it normally takes Ryan and I to look after him, and even if we can manage with just one of us, people stare.
It’s not an unknown thing for me to have to defend dad and his condition on a regular basis when we go out and as his condition gets worse it is more frequent.
That is the main reason for this blog, to bring awareness to conditions and make people see that not all disabilities are visible. When I bring dad out for the day, he may look drunk but he is far from it. Huntington’s affects your movements; it leaves you unable to control your body and the movements it makes. You may be sitting and all of a sudden your leaping up to your feet, unable to keep your body still when you are sitting. Other side effects may be your brain telling your body how to perform certain movements, such as moving your feet, when it’s time to move along and walk your legs just may not get the message. This is also made worse in my father as he was in the Kegworth plane crash almost 30 years ago. The accident left him with a broken leg and a crushed ankle, not to mention the fear of flying! Dad’s leg and ankle healed but he was always left with a bad limp, I always remember my father walking and running with a bad limp. This was normal for us, but when you throw in the side effects of Huntington’s disease and dads already damaged legs his movements are even worse. His ability to walk is even worse.
As well as the movements and walking abilities, it’s difficult to eat as swallowing becomes a challenge, so when we bring dad out for the day public eating can be hard on all of us, it results in me and Ryan telling dad to “eat slow” or “slow down” etc and me cutting up his food or maybe even feeding him his food. He tries his best himself but sometimes he just can’t manage.
This causes people to stare more and talk about us, at least at this point they realise something is wrong but they are still staring, and sometimes they look at him like he has some sort of mental challenges or something I’m not quite sure, but whatever they are thinking about him they shouldn’t be!
To be honest this has to be one of the hardest blogs to sit and write as its difficult to remember everything that has happened, there’s been issues with dads temper and attitude. There’s been issues with his medical condition and the deterioration and what it leads to in the future. His weight loss has been up and down we have to buy new cloths on a regular basis, simple tasks and daily jobs are difficult and demanding.
Ask me a question anything that comes to mind and I will answer it. But to sit and write about the past ten years I really don’t know where to begin and how much is enough and what is too much.
But I hope this blog post gives you an understanding to what my family go trough and what we am dealing with.