Sunday, 6 September 2015

A bit about Dad

Today I would like to share with you some details about my Dad, Colin.

There is a lot I could say but the key points are, he is a strong, proud man. Not to mention stubborn. This is a key attribute that comes up often.

Having worked in numerous jobs his whole life (at one point helping to make the DeLorean (something I was immensely excited by)) he was forced to retire because of his illness not too long ago. Just before he should have retired naturally any way.

His job was a dangerous one and not something I will go in to too much detail of, but suffice to say, I thought the job would be his biggest issue in life; not this.

The trickiest job he had however was most probably raising me. I was a difficult kid. I had a knack for getting myself into trouble and my Dad would make sure I bloody well learned from it. He was a Belfast man and I was never in any doubt of that when I'd cocked up.

Despite my insistence on getting into all sorts of shenanigans, he still ensured (forced) I worked on my education. For 2 years prior to my school entrance exams (11+) he had me working on practice papers. Funny old thing, I did well. Really well. Academic Boy 1996 I'll have you know. My teacher Mrs McClurgh however almost took the thing off me when I asked what Academic meant. I'm still asking stupid questions to this day.

The teen years came around and with my new found intelligence I found even more innovative ways of getting in to trouble. My Dad's way of dealing with this however, had not. Grounding, pocket-money, extra work etc, etc. Great.

The point of that drivel? He never stopped working to put me on the right path. He kept me going in the right direction and he is one of the main reasons I am where I am today. I have a pretty decent job and a beautiful wife, who he finally got to meet last month. Bizarrely I think he actually likes her too.

But it was all of the little things about him, that made him brilliant. When he went to work each morning, I had cheesy toast and tea beside my bed. On the weekends, I had to dodge an ever expanding array of water based traps to watch the TV. The motorbike I was given at 16 to give me independence (though I think that was more because he was getting sick of me). He always had a plan. Some controversial at times and certainly pushing my limits but it was always done for a reason. 9 times out of 10 it was as a vital lesson for me.

Back to the present. I said that my Dad is a stubborn man. He is. Very. Coupled with him being proud he has gotten himself into more shenanigans and trouble in the recent months than I can remember. With MSA as the systems start to shut down, it can be hard to stay standing due to low blood-pressure. My Dad being my Dad, he did not want to let this go and as a result he would fall. Subsequently he would then visit the hospital, normally due to banging his head. With someone there with him this could be managed but as he is on his own, this presented numerous issues. With this, he is now assisted everywhere by his care team in an attempt to keep him safe.

This has presented its own issues. In his garden is a Koi pond with some beautiful fish. The only way he can currently see them is through an outdoor camera. At this point he is not allowed the use of a wheelchair in case he passes out. That said, my Dad doesn't care what they think and he is trying to find his own, much to the frustration of the care team. They are just about to reach an agreement were they will put him in the chair during the morning and back out again in the afternoon. He always gets his way.

Right now it is the simple pleasures in life my Dad craves, but he also doesn't want to let go of what he had. He still has his car. He had a motorbike until recently even though it wasn't used and he refused to move in to a downstairs bedroom despite the safety concerns on the team. I told you he was stubborn.

Thank God he's stubborn (other Deities are available). I know because of this he has more time left. He could easily have given up and accepted what this brings, but he hasn't. As is being championed across the U.S. right now, he has said Fuck MSA! And I'm with him on this one. Fuck you MSA!

Saturday, 5 September 2015

The Start

With this sort of thing, the question is always, "where do I start?"

To be honest I am not really sure. My Dad (the man who raised me) Colin has MSA (with Parkinson's to add a bit of salt to the wound). "What's that?" is the common response. The answer however is not a simple one.

I myself am still trying to fully realise the effects of this illness and most probably will be after my Dad has passed on. That's the thing with this, there is no cure. My Dad is going to die. Hard to write, harder to say and something I am still struggling even harder with to come to terms with.

Hence the writing.

I've never been good at expressing myself (something I take after my Dad with) but I have always been able to write. Being of Irish descent, I might not be able to pronounce a word, but I can bloody well spell it. Hence I took Literature rather than Drama as a teenager.

The point of my scribblings on here is to work as a vent for me, not the sufferer, not the patient, but the other person. The one to carry on afterwards. It is also for everyone else out there that is a part of this damn thing. To highlight MSA.

Multiple System Atrophy is a degenerative disease. It attacks the brain and slowly wears away the affected person's movement, balance, blood-pressure and bladder control. Not to mention everything else. It affects about 5 in 100000 people, meaning there are 3000ish sufferers in the UK. There are around 20 times as many sufferers of Parkinson's. My Dad has both. Cheers life! And it works fast. To put it into perspective, I was with my Dad last year and he was walking around looking after himself at home in Northern Ireland. A bit shaky and unsteady but not far off the man I knew of old. I saw him 2 weeks ago and he is now fully dependent on his carers. They visit throughout the day. They wash, feed and clothe him when necessary and act as a pretty good outlet for him.

What I haven't touched on yet, is that I now live in England with my wife Katie and my Dad is separated from my Mum. My family history is actually an entire book I should imagine in its own right. But I digress. He is on his own. A lot.

Thankfully, I am in a position now to see him a lot more often than I have, but it will never be enough.

One of the best things to happen to us recently was getting FaceTime sorted for him on his iPad (other video conferencing apps are available). Why hadn't I thought of that sooner!!!! The reason this is such a good thing for us is because his speech is very hard to understand. He knows what he wants to say but it can take 3 or 4 attempts for anyone to get it. Coupled with that, I have tinnitus because of my job which makes the to and fro all the more comical. FaceTime however has been a God send.

I must mention Marie at this point. My old (she is not old - Marie in case you read this (a very glamorous lady might I add)) next door neighbour and a phenomenal woman. She is still my Dad's neighbour. She pops in on most days and helps us FaceTime when she can. I cannot stress how important she is to us. She is one of those unsung heroes/heroines that simply does things because they can. A saint if you will.

I will leave it there for today and pick up tomorrow. There is much more to say.