Parkinson’s Disease: To understand

I do not remember a time where my grandfather, my dad’s father, was not sick.

He has, for as long as I have been alive, had this hunch in his back and a shake in his hands.

He would move slower than me and my brother at the park and he couldn’t drive us anywhere. But that was the normal.

I do only vaguely remember him walking to collect his Tattslotto tickets from the post office down the hill from his house, holding hot chips from Jim’s Fish and Chips, the local Greek hangout.

He would wait at the lights for my Nona to pick him up, my brother and I waving madly in the back seat with our eyes glued to hot chips.

His remote-control chair in the sunroom once was a playground for my brother and I, but now sits collecting dust in the garage. He only uses a bed now.

That’s because his legs did not move anymore and they brought a hospital bed to my grandparents’ house and everything changed.

Dad said I was too young to understand, but I was just hesitant.

I used to be so scared of him, because he would shake his hands and stutter on words and I thought he was going to choke on his food.

Maybe I didn’t understand.

I didn’t know anything more than Papou’s walking sticks, turned walking frame and then the wheelchair they moved him out of his old house in.

And then he moved into the nursing home and he became less and less himself. Now he can barely talk anymore. But I know through it all, that he still understands.

With his Parkinson’s Disease has also come Lewy Body Dementia. The deterioration of the mind is far more sickening than any of the body and to watch him lay there, attempting to get the words out is just so unfair.

Some days he won’t remember, but you cannot force what is already diminishing from his mind.

And now my grandmother, my mum’s mother, has been cursed with this evil Parkinson’s disease, completely out of the blue.

She’s 83 and throughout my whole life she’s been active, energetic and made our visits unforgettable, which makes this diagnosis a lot more painful.

She taught me to sew, she drove me to classes for two years straight every week. She’d cook for us, come over to clean, look after us when we were sick. She’d take us on great adventures, to the museums, the pool and the parks.

My fondest memory is when Grandma used to play Old Maid cards at her house in Balwyn. She’d play a fair game, if she won, she won. That was a good lesson I learnt from her; to always work and play fair.

And she would make a mean egg salad sandwich.

You never expect the healthiest and most positive people to be brought down by something so disgusting and so life changing.

Mum says it’s the card Grandma has been dealt but it’s just not fair. Grandma doesn’t deserve this.

I think I’ll struggle most with knowing who she was before Parkinson’s; before a disease was attached to the end of her name.

I can’t imagine what she’ll be like soon and seeing the disintegration of my Papou mentally and physically on the other side of the family scares me.

That’s not my grandma.

That disease doesn’t define her and I will make sure that it never will.

It will get harder, as many things do, but even at her lowest, I know she will understand us.

And while I may not understand what is happening in the minds of two people I adore, I know they will always understand the love we have for them.

 

 

About Anna Pavlou

Anna 'Pav' Pavlou is a current Year 11 student and a born and bred Melburnian who has a passion for sport and sharing people's stories. She is an intern journalist for YourLifeChoices and writes for The Roar, the Victorian Amateur Football Association (VAFA Media) and is a Melbourne Cricket Club contributor. Most winter weekends you'll find her down at the Ross Gregory Oval in St Kilda, supporting Power House FC, who play in Division 2 in the VAFA. She works as the Division 2 writer for the VAFA. She completed work experience with 3AW Radio and has been published in The Age as well as with Carlton FC and Geelong Cats. Check out her website below for more sport pieces!

Comments

  1. Yvette Wroby says:

    Hi Anna,
    my old partner has Parkinson’s and the dementia that comes with it. It is a slow, awful waste of a disease while the person themselves (before the dementia sets in) is who they have always been. My thoughts are with you and your family. Love is the only answer, and will sustain the rest of you through all of this.

    Writing helps too. Thanks for sharing. I doubt that there’s many of us out here who haven’t been touched by a disease like this in our circle of friends and relatives.

  2. Anna,
    I completely understand how you feel.
    My grandmother suffers from Parkinson’s and Alzheimer’s.
    It’s the weirdest thing when someone so active and alert suddenly over night becomes the complete opposite.

    Moving her to the nursing home was extremely hard on everyone. And as sad as this sounds I don’t visit much because I want to keep remembering her like she used to be not how she has become.

    It’s absolutely heartbreaking when you aren’t recognized anymore by people who made you so loved and important.

    Like your nonna mine was also extremely fond of sewing. I still have the dresses she hand made for me when I was little. It also made shopping for my wedding dress very emotional for my mum who wasnt able to get through any of our early wedding dress shopping trips without crying about my grandmother not being able to be there to share the experience.

    Memories we have are precious and you are completely right about them always knowing that we love them.
    ?

  3. Very moving stuff, Anna.
    My thoughts are with you and your family.
    Thanks for sharing.

  4. Beautifully written Anna.

    Hopefully your grandmother will respond well with her meds and not progress too quickly. And allow for many more years of living life to the fullest m, as far as possible.

  5. E.regnans says:

    Lovely sentiments, Anna.
    We never know the cards we will be dealt.
    And new cards arrive every day.

    It’s a powerful thing.

    All the best to you & your family.

  6. The Avenging Eagle’s wonderful father died 6 years ago of the same lingering cruel Parkinsons with Lewy body dementia as your Papou. With her Croatian family they were able to keep him home until the final months. Early on AE struggled with wanting to “do something” and then came to understand that she could only love him. Take cappucinos and feed him the froth with chocolate sprinkles. I remember in the final weeks taking him out into the lounge area to watch an Eagles/Richmond game at the MCG on TV. We were all in our beanies and scarves just like when he used to come to Subi or Bassendean with us. He had a big smile for the whole second half.
    Yesterday we went to visit a former high school principal that AE worked with – a clever and generous man in his early 70’s – now in a retirement village in the middle stages of Alzheimers. We took him out to lunch and had a good time. It was tricky having a conversation when much of our common past is now lost to him. Knowing when to help him and knowing when to let him keep the last of his independence.
    I found it sad and difficult, but he enjoyed the time out with us. It took a much greater emotional toll of AE because of how much it reminded her of her dad.
    My belief is that there is a “knowing” beyond words and conscious memory. Knowing you are loved and valued is beyond words, and I know both your grandparents will sense that from you Anna to the end.
    Thanks for sharing.

  7. Hi Anna,

    I am sorry to hear about your grandparents. My thoughts go to your family and I pray for them.

    Good on you sharing the story here.

    Yoshi

  8. Add Billy Connolly to the list of similarly affected. Michael Parkinson says he no longer recognises him despite 40 years of friendship. So sad.

  9. And Neil Diamond.. cancelled his Aust tour earlier this year for same

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