When most people think of Parkinson’s disease, they think of dyskinesia which is the involuntary movements, tremors and tics that are symptomatic of the disease. Anthony’s version (called ‘Parkinsonism’) is not like this. Instead, his disease is characterized by bradykinesia – the chronic slowing down of movement.
Big words to match small, sometimes unnoticeable, symptoms. To begin with, many years ago now, I deliberately tripped over these words and many, many more – like ‘idiopathic’, ‘hypokinesia’, ‘ataxia’, ‘dysphasia’, ‘mirographia’, ‘akinesia’, ‘palilalia’ – just as Anthony was undeliberately tripping, literally, over his own feet. I didn’t want to know what those words meant back then; I didn’t want to know what was coming. The glossary below is for those who are curious:
http://www.webmd.com/parkinsons-disease/parkinsons-glossary
The first signs were subtle like Anthony’s inability to open the vegemite jar, and his reluctance to drive the car. But then the signs became more dramatic: Anthony’s increasing stoop, strange gait, the drooling, getting stuck in the back yard and being unable to walk back to the house, the hallucinations, me coming home from the local shop to find him face-down in the vegetable patch, Silver chain home assistance, hospitalisations, drug experiments, nightly toiletting shifts with Ming, Anthony’s apologies, his gradual loss of control over his body, his shame and frustration….
All of these things jigsawed into each other crookedly, violently sometimes; we could not get the jigsaw back together again no matter how hard we tried, because already there were too many pieces missing. A simpler jigsaw needed to be built and learning what those many big words meant has helped frame the centre of this new jigsaw, the centre being Anthony himself of course, and his incredible resilience and acceptance.
One of the most wonderful things that has happened lately is that just when I thought Ants had become totally immobile, the staff told me that his nephew, P, visited on the weekend and Ants was able to use his walker to go outside into the sunshine with P. This nephew visits Ants every weekend, but he doesn’t do this out of duty, he does it because he loves Anthony (and I have yet to meet anyone who doesn’t).
Another wonderful thing is that just when I thought Ants had completely lost his ability to speak coherently, I arrived and rushed to give him a kiss yesterday and he smiled his newfound smile and this was our conversation:
Anthony: You are a wonderful person!
Me: Why?
Anthony: Well, you always find yourself in the most extraordinary places!
Me: What – like here?
Anthony: Yes! You always find me, Jules!
The fact that Anthony’s eloquence, mobility and ability to smile all seem to have come back to some extent, after a long period of struggling with all of these things, is quite strange. I write down all of his extraordinary sentences and am thrilled when he can actually walk; as for the smile, it is almost as if my determination to get that brilliant smile back via any means – including slapstick antics, banter, his favourite comedy series, and just laughing my raucous laugh – has somehow tickled his facial muscles into action again. And, like any exercise of any muscle, the more Anthony smiles, the more able he is to smile. Ming has noticed this and so have the staff and everyone is surprised and delighted.
Does this mean Anthony is getting better? Of course not, but it’s a very interesting turn of events made even more interesting by a conversation I had with a resident whose room is two doors away from Anthony’s. She beckoned me over to where she was sitting in her wheelchair and whispered loudly, “I’ve heard a rumour that Anthony is getting most of the attention these days and is the most popular, but don’t let it bother you because we are all treated well.” Then she guffawed enigmatically and I have yet to decode what she meant.
The other day I told Anthony about Gutsy being killed and he kept reaching out his hand to put it on top of mine.
Over and over and over again – his hand, found underneath the blanket that is always on his knees, and my hand bringing his out into the cold air of a heated room, and his hand finding my hand – a jigsaw of interlaced fingers, a smile, a repeated hand tap.
But, when I was telling Ming about this tonight he said he’d seen Anthony earlier today and Anthony was so confused and blah that he almost didn’t recognise Ming!
Ming: I get it with the smile thing, Mum, but Dad was pretty bad this afternoon.
Me: So should we give up then?
Ming: No!
Me: No?
Ming: I don’t know.
Me: I don’t know either.
The above is not an exact rendition of our conversation but, rather, a compression of many conversations over many months/years. Ming, at 21, is always going to be the vital jigsaw piece that has the elasticity to fit right back in and complete the puzzle, or else wing to and fro.
Par
kins
on
ism
saw
jig
jmgoyder 
what an excellent post, jules. you’ve helped many people with this today.
Thanks very much!
my heart goes out to you
Thank you xx
Now this was a most enlightening post?. Little do we know really what Parkies is all about till someone like you writes about it and that is why I feel it important you write a book about it…. I’m sure no two cases are exactly the same, and maybe something you write will help another understand the nuances of Parkies
Thanks for the encouragement Bulldog.
I would suppose the key phrase here is “Should we give up”? …………”not” ! Love never gives up and that you and Ming have an abundance of… Diane
We are in a good place now.
You are so wise and thoughtful, you make such an effort to understand the problems, I admire you tremendously an example to us all.
Now that I am not caring for Anthony at home, it is easier to see things more objectively – well, sort of!
The best part of what you wrote was his hand squeezes to acknowledge the loss of Gutsy. That brought tears to my eyes. You are grieving and what a gift. He loved her, too. It was just what you needed, wasn’t it? Thinking of you.
He is still sympathizing with me – amazing!
Your bond with Gutsy was so obvious and deep; he had it, too. It transcends his illness – his compassion is amazing. Just what you needed. I didn’t meet Gutsy, but I felt terribly sad!
I loved the conversation with Anthony yesterday. What a treasure that was.
He is a beautiful man.
Ming is 21? Julie that means I’ve been with you on this journey for 3 years, as I believe Ming was turning 18 when I first met you here. I love that Ants has been able, at times, to smile, talk and walk Jules, I hope he has many more moments like that. ❤
Diana xo
Yes, the boy is a man now!
It is a nasty disease as far as no stability in what we think will happen next. Sorry you have to go through it along with Ming
The fact that you care about us when you have the rotten disease too makes you a very special person. Btw, I just re-read Dahlia and loved it again.
I read this first and then about Gutsy and now am back to write on this post. “Ants” is right about you–you are always there for him. I’m so glad he has some good times with his nephew (although he then has bad days, too) and so so sorry about Gutsy.
Thanks Luanne.
I don’t know if you can download the BBC podcasts but on Monday 20th April there was an article on the Kaye Adams show on BBC Scotland about a man who has Parkinsons.
The link is at
http://www.bbc.co.uk/programmes/b05rc3b3
The article starts at 2hours 23 minutes and is about a man from Stirling discussing his problems. It is very interesting. See if you can listen to it.
Yes, I listened to the interview – thank you Jane – very interesting.
Yes it was interesting. I thought you would like to hear it.
You are a wonderful person!
Ah you don’t see me first thing in the morning!
Hello…..have you seen me? 😉 We would take a look at each other and burst out laughing. 🙂 And still believe you are a wonderful person. 🙂
Treasure these good moments. You deserve them.
I’m much more positive these days.
Oh Julie, Anthonys’s comment ‘you always find me’. It’s so lovely in so many ways.
Helen xx
Thanks Helen – he’s said this a few times now xxx
moving, helpful, well written. your heart shows through these words.
Thank you Elle!
Until I found your blog I had not heard of parkinsonisms and find all your posts so interesting along with happy and sadness, I was upset about Gutsy I feel good when I read that Anthony is able to smile and speak a little to you, it really makes me feel good and I know some people would think how could these things affect me when I don’t know you as we have never meet but in some ways I do feel like I know you if that makes any sense if not, I’m sorry
I feel as if I know you too – almost like we are next-door neighbours, Jo-Anne! xxx
I am so glad that Anthony’s facial muscles remembered how to smile again, there is something so beautiful about seeing a smile on a loved one’s face, it triggers all sorts of endorphins in your brain that it’s like getting Christmas all over again. Hugs Jules 😀
Yes, his smile is like a daily gift!
😀
Oh, Julie — you are such an inspiration to me. Often, when I’m having a particularly hard time, I think of you and your courage, and openness in admitting how hard it is, and I’m able to suck it up my anxieties and frustrations and get on with living and loving.
I’m so sorry about Gutsy. And happy for the sweet surprise of Anthony’s smiles — a gift for the moment. Life is bittersweet.
Should we give up? No. I don’t know. No.
We never know which sweet surprise might be waiting for us around the next corner.
Your courage in the face of pain is astounding.
Thanks, dear. Some days I don’t feel so much courageous, as mulish.
Beautifully expressed. The complexity of terminology contrasted with the reality, and then the glimmers of Anthony’s spirit shining through it all. You are all so brave. 🙂
Thanks Lisa – yeah, the terminology does my head in!
I had been wondering how Anthony would take the news of “Gutsy 9” He took it with kindness and concern for you.Your stories make me realize how precious all the “little things” are.Thank you for sharing.I agree with Joanne, I feel like we are friends and found myself trying to describe to another friend the relationships that we develop on the blogshere. I still think of Robyn often.
We ARE friends. I think of Robyn too. What has happened?
You are such a wonderful caring person
You always seem to fit the words together just right.
I agree with Anthony, you are a wonderful person! And your love story is so inspiring.
My dad’s was like Anthony’s, but my uncle’s case was more the shaking kind. Both rotten.
You are all so resilient and positive. I admire you so much.
i can feel the confusion. for you to see the golden smile and ming to doubt is opposite ends of the same man. the same man that you both love. when i think of ming i wonder how difficult it is for him to love his mother and want to protect you then seeing the dad he loves becoming someone he has trouble relating to.
i send you my big warm hugs and love:)