Wednesday, 13 April 2011

Movers and shakers

My dad is a mover and a shaker.

Or rather he's not.  He doesn't shake and he can't move.

He has Parkinson's Disease.

A little while ago, a friend of mine asked if my father was dead.  Apparently I don't talk about him much. And it made me realise that I tend to use the collective noun "my mum" when I really mean "my parents".

And, mostly, Parkinson's is why.

When he was diagnosed I was about twenty and he was fifty-five.  That's early-ish for a diagnosis, but not unheard of and doesn't put him in the Michael J Fox category of early-onset Parkinson's at all.  We are lucky.  To be honest it was a relief. I'd noticed things were wrong and although I'd never have said it out loud for fear of making it true, I thought it was Alzheimer's or a brain tumour, or something, I thought, truly debilitating and awful.

Something that was going to take away my dad.

Which is ironic.  Because that's precisely what Parkinson's is doing.  Slowly, yes, but inexorably nonetheless.

As I say, he's neither a mover nor a shaker.  If you think of Parkinson's you probably think of old men with wobbly hands.  He doesn't do that. He doesn't have a tremor, doesn't shake or shudder.  Instead he has a freeze.  The messages from his brain to his legs just don't get through and so, from time to time, three or four times a day, he can't move.  He's stuck,  for minutes rather than hours, but long, agonising, frustrating minutes while he counts, out loud, like a toddler with a new skill, willing his feet to carry him where he wants to go, his knees to bend, his legs to swing at the hip as they used to so thoughtlessly.

And it's not just his legs messages don't get to.  His hands don't really work either. His writing, never what you might call legible, is now spidery: weak and nearly as painful to read as it must be to write.  His mouth doesn't work, so he mumbles, and dribbles, and makes people shy away from him in the street, or look the other way, or just get cross and frustrated as he holds up an entire conversation trying to get the right words out at a level that can be heard.  In the night, when he stops taking the two-hourly drugs that make any movement possible, all movement ceases, and he is totally reliant on my mum, a carer rather than a wife.

He doesn't read this blog and I wouldn't be saying any of this if he did.  But he isn't, in so many ways, my dad any more.  He's my dad, so obviously he's always been annoying and frustrating and embarrassing.  But he was also charming and witty and sparky, given to random flights of fancy and appalling puns.  He's still the same, but he's lost the ability to communicate the spark that made him such great company.  His dad jokes are inaudible, his frolics of imagination unfollowable.  He's an unbelievably adoring grandfather, but one who can't pick them up for fear of dropping them.  

And if he's been taken from me and my children, how much more has he been taken from my mother, at a stage of their lives where they were looking forward to his retirement and freedom from children?  I asked her once, early on, how she felt.  She said, "I promised to love him for better or worse, in sickness and in health.   We didn't plan for this, we didn't want it, but I made a promise and I'm going to keep it". 

Parkinson's is not fatal. He could, and should, live a normal life span.  It is his seventieth birthday this year, his allotted three score years and ten, and we have a big party planned.  He will be brilliant, I know.  All his effort will go into hiding, as much as possible, the effects of this disease.  He will, insofar as possible, speak up, not mumble, stand straight, take the drugs that keep him moving, and this will, in the days that follow, take its toll.  And we will watch, and worry and try not to think about the Parkinson's related dementia that might, one day, add another symptom to his personal list.

I realise, even in writing this, that I am lucky.  It is just Parkinson's.  It won't kill him, and for the moment, it isn't taking his mind. But it is taking his body and his spirit, and it has already taken the dad I knew growing up.   

Apparently I don't talk about my dad much, but then if I don't, who will?



This week is Parkinson's awareness week.  One person in 500 in the UK has Parkinson's. Even if you or they don't know it, you will know someone with it. It may be more or less debilitating than it is for my dad, but it will, regardless, have changed their lives and the lives of everyone who knows them.  It will therefore come as no surprise to you that my charity for this month is the Cure Parkinson's Trust. You may well have heard of The Parkinson's Disease Society which does an amazing job of raising awareness and supporting my dad and others with the disease, but wouldn't it be amazing if their support wasn't needed ever again? 


  1. 1 in 500 is a lot. I'm really surprised by that. And thank you for sharing something that must have been very hard to write xx

  2. So was I but I got it from the Parkinson's Disease Society so I guess it must be right.

  3. A wondefully powerful post. Thank you for sharing it with us. x

  4. what a moving post. You have put into words so eloquently something so difficult to talk about. Awhile ago we wondered if my dad had parkinsons but the doctors think not which is obviously a relief. I'm not explaining what I'm trying to say very well so leave there but felt I couldn't read this post without commenting.
    Kerry x

  5. Oh sweetheart. I'm so sorry. You've said something so hard so beautifully. xx

  6. There's so much of this post I can relate to. My dad's diagnosis of Motor Neurone Disease came just when he and Mum were planning his early retirement. They wanted to travel and do so much together and instead my mum had 18 years of caring for him constantly. It was frustrating and agonising to watching his body fail bit by bit while his mind remained as lucid as ever.

    For once I can honestly say in a comment I really know how you feel. I'm with you every step of the way.

  7. You write about this painful subject so expressively. It's been a window for me into what it is like for you and others.

  8. Pants - thank you.

    Kerry - I think I know what you were trying to say, and thank you for saying it. Hope you find out what is wrong with your dad soon.

    Deer Baby - thank you. Especially from you. Your similar (ish) posts have made me feel guilty in the past for not writing something like this, and now I'm glad I have.

    Trish - Funny, isn't it? (In a totally not at all funny way, of course), but MND somehow seems to me so much worse, but then you say it's the same... I think it's one we're going to have to talk about sometime, I feel very guilty a lot of the time about how I feel. I want to be sympathetic and understanding, but most of the time I'm just cross and frustrated, with him, with the illness, with myself for not feeling how I think I *should*...

    Iota - thank you.

  9. What a moving and difficult post - thank you for having the courage to share it.

    (I found you because you were nominated by Emily from Pants with Names for some Blog Love this week - you can see it here if you should so wish to

  10. Thank you for coming over, and thanks to Emily too. What a lovely thing to do. (and eek! that I've just stuck up a begging post - the two are totally unconnected, I promise).

  11. In many ways this makes me thankful that my Dad died young and I didn't see him get old and ill for he will always be the strapping, capable and wonderful man in my mind. Yes I so miss that he never met my boys, but I am learning to live with it.

    It seems we all have our crosses to bear in this life and it isn't easy for many people

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  13. Mad Mummy - Funny (in a totally unfunny way) because of course my thing is "at least he's still alive"... But yes, it is hard (has been harder this week when they have been here and my mum has been ill and I have had to do lots of the stuff she does...or not (and then feel guilty for not doing so)), but whether one is worse than the other is a call I don't think I, or anyone else, could make.

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