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.