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Tuesday, September 22, 2015

The bits we don't share - Parkinson's awareness week 20-26 April 2015

I just found this post that i had drafted in April 2015 for Parkinson's awareness week. I have no idea why I didn't publish it. Maybe I decided it was too personal? But in reading it again i have thought i would. It's about awareness, about my little journey with my daddy. And about an illness from a relative's perspective and that's what awareness weeks are about. It's not all an easy read. But it's true and from my heart.  Love you daddy xxx

It's been so long since I posted here - too much to catch up on really, but this week is Parkinson's awareness week so i wanted to share a little of our lives.

Most of you who read this follow me on twitter or on Facebook, or know me through forums or ravelry or some such. You generally all know that life changed for us as a family in December 2012 when Mum had a brain haemorrhage, and generally you know that my Dad has Parkinson's. This post is hoping to be an insight into a relative's perspective.

Dad was diagnosed in 2002. He was 60 years old. It was the year my baby sister got married, the year  we went to Mauritius as a large family for a holiday. The year my Mum and Dad retired. We said at the time "It could be worse" "It's not terminal" etc, etc.... Tried - and mostly succeeded to put a positive spin on it (it must be said in varying degrees - as a family we deal with things differently - from head in the sand, to unrealistic optimism, to realism..... generally we don't do a lot of pessimism, but we all took it a little differently) We all went off to our own corners of the internet to research what we could, and came back with our own interpretations of what might happen. At least I think that's what we did - because I realise now that we didn't talk about it all that much. Dad was lucky, he was pretty healthy, quite physically fit in every other way. And to begin with really it just affected his gait slightly, and little things like I remember noticing how he struggled to get money out of his pocket in shops, But generally he was quite well for quite a long time.

Mum and Dad bought their dream home - an acre of garden and a beautiful 4 bedroom home. They knew it would be unlikely that they would live there forever...... it would become unmanageable. But they wanted to enjoy what they could. And I admire them for that - and in hindsight, I'm eternally happy that they did!

Years went by, Dad got a little worse year on year - but not hugely.... and again we didn't much discuss Parkinson's. His meds were altered a little here and a little there to give him the best balance they could - a balance between being able to move freely, and not displaying too overbearing an amount of dyskinesia.

Dyskinesia - that's something they don't tell you a lot about.  Remember the video ad by Michael J Fox, the actor who has Parkinson's disease, in support of Democrat Claire McCaskell and stem cell research, which was also seen online, and caused controversy when talk-show host Rush Limbaugh said Mr Fox had exaggerated his symptoms to get more sympathy?  Well I can't definitively say he didn't exaggerate, but i can say with no doubt or uncertainty whatsoever that he and many Parkinson's sufferers have symptoms that bad on many many days. - And it's the drugs that cause them. I think Mr Fox commented later that he was probably over medicated. But often that's choice you have to make to get through a day - over medicate and look like you have ants in your pants or don't and run the possibility that you will freeze or tremor so violently you will fall over or spill food and drink? Either way you look like a looney to the outside world. - What a choice? Dad spends most days with that level of dyskinesia now. It's the safer alternative for him, because he falls much more if he is freezing. When freezing his feet refuse to move, but the tops of his legs, almost do - and his torso does! Before long he has literally gone head over heels. And as he gets older that's not something we want to be happening too often, the dyskinesia is the better option.

So, (I digressed didn't i?!) As time went on, dad regulated his meds mostly based on what he wanted to achieve in a day, maybe under-doing them if he wanted to sit in a chair or work at a computer, and upping them if he needed to be outside or was socialising. He had a suggested amount and he played about to live the best life he could - and by and large I think he succeeded.

In the summer of 2012 Mum told me and my sis that they had put the house on the market, that it had become just a tiny bit unmanageable for them both, and Dad was struggling to keep up the maintenance. Given the size of the garden and house, and the fact that they had no help I'm surprised that they managed as long as they did, but stubbornness and a desire to succeed will take you a long way in this life. But they had clearly reached a point - 10 years after diagnosis, when Dad was beginning to realise that he couldn't manage everything, and was struggling round this large garden.

of course at the end of 2012 Mum herself became so very ill, and my sister and i became part of the story of our parents' lives in much more of a way than we could ever have expected. I moved in to Mum and Dad's house to take Dad to visit every day. It became clear immediately, that the trauma and shock of what had happened had taken a massive toll on dad, and it has continued to do so. When Mum came home, I took care of them both.

The things they tell you about Parkinson's are that the sufferer may have tremors or freezing, may shuffle and walk with a slow gait, may struggle with buttons and zips and tight clothing, may become quiet in voice and articulate less clearly, may not show expression on their face so may be easy to mis-read their emotion or feeling, may struggle with delicate tasks as their dexterity declines and they may develop addictive personality traits.

What they don't tell you is that Parkinson's and the meds that treat it cause severe confusion and lack of focus and concentration. I can have a conversation with Dad and when he replies it is clear he has only taken in a tiny part of what I have said (and it's usually not the relevant part!). He gets confused using tech that he has used for years - even using a tv remote is now beyond him on some days.

They have little understanding of time passing so something you said 3 weeks ago may take precedence over the thing you said yesterday. 

They have little or no insight, either into their own situation or other's. So they may endanger themselves more than you would expect because they don't understand their own limitations or see the bigger picture around the safety of a particular situation. Or they may endanger others because of the inability to appraise the entire situation. For many many months Dad thought it would be ok to take Mum on holiday. (it never would have been - but it was so hard to keep saying it)

They often suffer from double vision due to muscle rigidity, and their eyes not focussing at the same speed.  Reading/signing papers/watching tv can all be affected. 

They suffer from depression and social exclusion. As Dad's speech has become quiet I have realised he doesn't bother trying to be heard very often, so he can retreat into his own little world. 

Nobody tells you that you will have to be rudely blunt and at times downright cruel to make them understand how dangerous or daft something is. Nobody tells you that you should sort a power of attorney out as soon as they are diagnosed, because at some point they will be too confused to run their household, and you might not have seen it coming until it's too late. Nobody tells you that you will be so very very frustrated at the total inability to see that walking down the middle of a country lane with a walker and a bad case of dyskinesia is dangerous - in so.many.ways! Nobody tells you that you will have to remind your father to talk to you and not to his feet, and how very very much that hurts. Nobody tells you that when you go out and people stare, how badly you will want to stand up and tell them "Our excuse is Parkinson's, what's yours?"

But what I can tell you, is that despite these little inconveniences, our daddy is still such a gentleman. That he still loves our Mum with every fibre of his being, and he shows it day after day. That although this illness is a nasty beast, we still have him with us and that is something to be truly grateful for. That he managed to fight it so very very well for the first 10 years, and they did indeed live in their dream home and milk every last bit out of it. I can tell you that you should talk about Parkinson's with all your family for now and for the future. I can tell you that no one person should take sole responsibility for care - even with a new diagnosis, because it's hard and it could destroy you and leave that person alone. That plans should be made and thoughts discussed..... in the hope and maybe belief that they will never be needed, but they should be talked about. That worst case and best case plans are in place.

And most of all, that no 2 cases of this illness will run the same course. So take the book of your life and treat every page as a new adventure, some will be crappy adventures and some will be good ones..... but live every page

Too long

It's been too long since I wrote here. And truth be told it's not good for me not to write (so it turns out).  I stopped writing because life got personal and I couldn't see past that. But then, life is personal isn't it? And of course you don't all have to read about it if you don't want..... but maybe i do need to write sometimes.

Anyway there is no point going over the last year as there is way too much to talk about.  Mum and Dad are now in a wonderful little residential care home in Guildford. And slowly... very, very slowly, i am beginning to get some form of a hold on our new lives.  Such a massive and sudden illness has had such an effect on us all and it takes a long while (and a bit of counselling, apparently!) to come to terms with the changes and implications for all of us.  Learning to support each other in different ways to anything that has gone before. Learning to deal with disability and the complications that throws up (people's ideas of having disabled access vary wildly!) Changes in relationships. Changes in our own needs, which, certainly for me, have surprised me.  I thought i was coping, but I wasn't. I was just treading water whilst i needed to. And as soon as I no longer needed to, i began to drown.

That's all behind me now. I am stronger (on some days) and more aware of the days i'm not.  Sometimes it is still too much and it hurts so bad. Not just because Mum got ill - that happens to millions (maybe billions?) of families every day. But it hurts because I wanted to look after them, and couldn't. It's taken me a long time to accept that it's ok that I couldn't. And maybe that's where writing what actually happened day on day might have helped. To have read back and realised what i was trying to achieve might have made it easier to accept that it would have been pretty impossible for any one person. But I didn't write - on some days I probably barely spoke!

So, anyway. Here i am! Mum and Dad have been in their new forever home for a year and a fortnight! and it feels like it's time for me to get back to doing those things that make me feel normal. (whatever normal is! LOL)

Miss Spot is still with me - although older and slower and with many old lady lumps and bumps. But can still hear her dinner biscuits being poured at a 20 yd radius!  We don't walk as much as we used to, so we've both got a bit old and fat! But now the temperature is easing off a bit, walking for an old lady is a more acceptable past time.

I'm still knitting and crocheting (no shock there really) and occasionally sewing too.

So, let's see what happens. I hope i will write here often again. It feels like a strange and hard thing to do at the moment. But writing is quite cathartic, and it's good to document the good things i get up to, so the crap doesn't overwhelm. It's very easy to slip on to self pity, and from there - certainly for me, it's hard to get back up off the floor again.

T'il soon