Live, Laugh, Love

kitty fitton gazing off into space thinking

I was going to write about how great it is to be five years on and still appearing to the outside world as though I’m fine. Parkinson’s is a strange thing. Every day you think “this is the healthiest my brain will ever be” as you know that tomorrow and the next and the next there is something inside you working to bring you down. The days turn into months, then years. We don’t know where we’re going, what our future is like, or how many more days we have left to run, jump and think fast.

Then I was asked to contact someone who had been newly diagnosed and had reached out for help. They were younger than me, with a family and were clearly distressed and worried about the diagnosis. It got me thinking about those first few days of knowledge, and the fear – no – the genuine terror of the unknown.

So perhaps my original idea isn’t actually that bad. Because here I am, five years on, and I am doing well. Paradoxically, I’m fitter and healthier because I have Parkinson’s. I sometimes catch myself. I feel stiff and unwieldy on a morning. But is that because I’m 46 or because I’m dopamine deficient?

kitty fitton gazing off into space thinking
What's ahead? Hopefully another glass of wine?

I work very hard at staying mobile and strong. If I’m honest, I don’t work nearly as hard as Emma, (pfft – show off) but I do give it everything I’ve got. I was at a Pilates class this morning. I can tell it’s doing what it should and I’m starting to feel less like a fat whale at the back. Yet a couple of times, whilst working on my left side, (the side affected) it felt difficult. More difficult. My morale began to drop. I felt worried. I felt a little scared. Words from people ran through my head,

“they were like you, pretended it wasn’t happening,”

“They were so fit and healthy, but oh, it really took hold hard in their fifties.”

“They went to the gym every day but they are in a home now.”

I don’t mind admitting I felt a tear in my eye. I felt that utter desolation and helplessness begin to wash over me.

Why bother? I can’t stop this. It’s said it can be slowed, but does that mean I will decline faster if I stop exercising? What if I want a holiday? What if I’m just too damn lazy to exercise?

What if I get hit by a bus tomorrow?

kitty fitton holding a glass of white wine up to the camera.
Cheers! Here's to all of you living your best life.

Truth is, none of us know what’s around the corner. Nobody has any clue about their future. I suppose if we knew, we’d go stark staring mad. One year ago I was a married woman, living in a huge house in a highly desirable suburb. I had no need of paid employment, and my days were to be filled with baking, gardening and tending to the needs of my husband and children.

One year later I’m living in a small house in a less desirable suburb and I share custody of my children. Yet my ex-husband and I are much happier. Our children are doing well and I’m scraping a meagre living doing what I love.

Parkinson’s is my constant unwelcome companion, yet even that gave me a focus that I had somehow lacked. I often joke that everyone needs an incurable degenerative condition. What I mean is everyone says things like ‘life’s too short’ or ‘live every day to the full,’ but they don’t.

Which kind of brings me back to where I began and the fact that this awful thing has, in fact, made me focus on what really counts in my life. I don’t know anything about how this may or may not affect me in the coming years. I don’t know if my life is limited or it will go on for many years and I’ll become the little old lady I dream of in the little cottage with lots of grandchildren. I don’t know if I’ll be independent, or need assistance.

What I do know is I will not apologise for not fitting the stereotypical image of a person with Parkinson’s. Perhaps one day I will look visibly affected, but I hope that day is either a very, very long way off, or will never happen at all. In the interim, I will continue to exercise, fight, enjoy the odd glass of wine, chase every dream and live my life to the max.

To those of you newly diagnosed, seek help, take your meds and exercise. We know you don’t like it, neither do we, but it’s so important. Keep smiling. This is not the end.

Until next time, Kitty.

If you feel similar, if you need help or feel unhappy:

Reach out to your health professional, doctor, friend or family member. Please don’t allow yourself to feel alone and unhappy. There are people out there to help you.

kitty laughing into camera
Kiity Fitton - usually up to mischief.

Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.

Find out more at her personal site below. 

emma_k
Emma Kyriacou. Quite good at hitting things.

Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)

Find out more at her personal site below. 

If It’s Not Fun, What’s The Point? – Emma

woman in dress looking doubtfully at a pink iced doughnut.

My good friend Kitty asked us in her latest blog post to write down three words you think of when you hear the word ‘disease’.

Here’s mine – sickness, broken, unwell.

For me, what it means to have “Parkinson’s Disease” has changed over time. For a large part of that time though, I have not felt sick. I don’t feel like I am ill.

I understand that the term ‘disease’ covers a range of things. But if I have “Parkinson’s Disease” that means I am sick for the rest of my life. It locks me out of wellness, forever.

Like Kitty, I’ve played around with ideas about how to refer to this thing that I live with. It may not seem like an important thing to be worried about, but actually what you believe about your reality is very powerful. And words affect that.

the word wellness crossed out and an arrow pointing to disease.
Nope, feeling good is not for the likes of us.

I too prefer “Dopamine Deficiency Disorder’. It refers to the fact that something doesn’t function the way it should, and names that thing – I lack dopamine. My brain doesn’t make it the way its supposed to. But it doesn’t condemn me to a future of being ill. It still allows me the possibility of being well, despite living with the fact that part of my system does not function quite right. I can live, and live well, with it.

Those of us who have Dopamine Deficiency Disorder ARE living with it.

Yes, yes I know – we are all dying of something. But before we die, there is life. I want to make the most of mine. I don’t want to have to go around telling people I am diseased, and believing that I am diseased.

How you focus your attention throughout life, plays an important role in shaping the growth of your brain. For the longest time humans thought that our brains are set and unchangeable once we’re adults. It turns out though that our brains can grow and change throughout life. Our brains are plastic – changeable through experience. It is possible, even with a brain dysfunction, to learn new things. At any age.

woman in dress looking doubtfully at a pink iced doughnut.
Will this make Emma happier? Who knows.

Playfulness and humour come out of learning new things, out of creative exploration. This is essential for feeling alive! Seeking novelty is fun! And if you’re not having fun, what really is the point?

I believe that learning about how the brain works is an important part of this. When we understand the brain, we can make positive choices and constructive changes to the way we live.

On that note, I recently discovered by pure chance, that March is Brain Awareness Month! I had no idea that this was a thing! I stumbled onto it while researching ways to better care for my brain.

Brain Awareness month is actually a global campaign to raise awareness of neurological conditions and bring to public attention the importance of brain research.

No one is talking about it though. It’s a pretty quiet brain awareness promotion if I’m really honest. 

(It’s because this only affects old people, right?! – Kitty.)

So I’m off to come up with some fun ideas to promote understanding your brain. Coffee please!

Emma.

If you feel similar, if you need help or feel unhappy:

Reach out to your health professional, doctor, friend or family member. Please don’t allow yourself to feel alone and unhappy. There are people out there to help you.

kitty laughing into camera
Kiity Fitton - usually up to mischief.

Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.

Find out more at her personal site below. 

emma_k
Emma Kyriacou. Quite good at hitting things.

Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)

Find out more at her personal site below. 

Paradigm Shift Please!

words reading disease or disorder, which would you choose?

Let’s open a can of worms. It’s something that’s been bothering me for some time now and I believe it’s the right time to call it out. It’s one word. Seven letters. Not that large, but the consternation and discussions I have had around it astound me.

I’m going to write the word out for you and I want you – yes you – yes really – to write down the first thing you think of. Actually, write three words associated with this little, ickle, harmless word.

D I S E A S E

I know. It’s just a word. I’ll admit that personally I don’t actually care what one chooses to call this thing, this awful unwelcome companion. Yet many people are deeply unhappy with the word’s use when discussing The Shaking Palsy.

Now I must point out that I’m not ungrateful to James Parkinson. He was clearly an intelligent man, calling for improvement of many things, including the protection of the mentally ill and universal suffrage. However, his name was given to lots of stuff, including quite a few fossils. He was very into palaeontology. Yet he himself named this thing ‘The Shaking Palsy’ or paralysis agitans. Now. It feels like a bit of a gobful when you look at it, but it’s no worse that ‘Parkinson’s Disease’.

The person responsible for naming it after the good doctor was in fact Jean-Marie Charcot, often thought of as the founder of modern neurology. He studied paralysis agitans for over a decade, and his works were groundbreaking. I guess it was pretty nice of him to rename it after James Parkinson, especially as the latter studied just three of his own patients and three other people he observed in the street.

man pulling silly face behind woman smiling into camera.
One of us needs help... but who?

So why Parkinson’s Disease? I guess back then people weren’t too fussed about patient sensibilities. Besides, if one was diagnosed with this, your chances of being physically able and motivated enough to complain were quite limited. We are indeed lucky to be living in the modern age of medicine. However. Lots of us much prefer to simply call this ‘Parkinson’s’. Why not? People still know what it means. Must we really stick the extra ‘disease’ on the end? What does it add, aside from a feeling of foreboding, disgust and fear?

Yes. I really think that. I looked up the definition of disease. It’s clear that Parkinson’s fits the description. But so do many other things. Illness falls into this same vague categorisation. I also looked up the word ‘Disorder’. This too fits the same definition of disease, but without the same connotations. Why then, can’t we call this ‘Parkinson’s Disorder’, or my own personal favourite, ‘Dopamine Deficiency Disorder’ or ‘DDD’.  

I note with interest that many Parkinson’s Charities have dropped the word ‘disease’ from their literature and signage. Along with it they lose the fetid, foul, depressing assumptions that are linked with this word.

words reading disease or disorder, which would you choose?
Pretty simple really.

Yet others still throw it around with abandon. Whilst writing a media release for an upcoming show about Parkinson’s that I was in, I decided to remove the word ‘disease’. The reason was that so many people with paralysis agitans have complained bitterly about its use. They feel it labels them as dirty, somehow unclean, and makes them feel depressed. Yet when I explained this, the response I received from someone in a large Parkinson’s organisation was, but haven’t you seen how much it’s used overseas? In the famous words of Rhett Butler, “Frankly my dear, I don’t give a damn.” Lots of things are done overseas. This is New Zealand. Why do we have to follow what everyone else does? It’s hardly the way one would go about discovering new things.

Furthermore, doesn’t anyone care about what the very people that must live with this awful thing, day after day, think about it? It’s bad enough to deal with it constantly, but to hear that the very people that are supposed to be there to support you label you diseased simply adds insult to injury.

Personally I don’t care if you call me diseased or not. But I have a sick mind, so what would I know? However I strongly feel that those that place themselves in the positions of authority on this subject ought to show more compassion and empathy to those that they claim to serve. Without it, they themselves expose themselves as uncaring and unkind. It displays a basic lack of understanding around patient care and support. The system needs to be challenged in order to continue to improve.

I myself will continue to deal with my DDD the best way I know how. With a cheery smile, a dose of dopamine-inducing tablets and a positive can-do attitude.

Until next time. Kitty. 

If you feel similar, if you need help or feel unhappy:

Reach out to your health professional, doctor, friend or family member. Please don’t allow yourself to feel alone and unhappy. There are people out there to help you.

kitty laughing into camera
Kiity Fitton - usually up to mischief.

Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.

Find out more at her personal site below. 

emma_k
Emma Kyriacou. Quite good at hitting things.

Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)

Find out more at her personal site below. 

Spiralling, Spiralling

close up of emma kyriacou

This may surprise you, but I frequently feel like I just can’t do it anymore. Its like this blackness washes over me, and I struggle to recognize what is happening, and where to find the light switch.

This is familiar scenario. I’ve put a lot of time, effort, work and research over the last few years building my toolkit for dealing with this shit. And yet it still surprises me to find myself feeling trapped in the pit of despair, unable to see the way out I’d signposted on a previous trip down there.

I lose my connection to the things I’ve learned; I start to feel hopeless, and I lose my drive and motivation. I start to feel angry too, and spend a bit of time in the pit raging at the inequity of it all.

I stop going to karate. I stop writing. I decide all that is screaming into void. No-one is listening. No-one cares. What is the point of fighting? To resist is like endlessly pouring energy into a black hole; let up, even a fraction, and you are sucked in.

It is hard to pin point what starts me spiraling down, there being a lot of balls I have to juggle to keep me operational! The latest gloom session ended when I took my monthly vitamin D supplement. Things that make you go hmmm right!

 

woman reading a phillip pullman novel in a corner.
Finding a moment of calm.

At the time though I’d also slowed my exercise down a bit (frequency and intensity of work out) in an attempt to get more paid work done (money, money, money!) and have more time with my kids and partner. After taking the vitamin D though, the next day (instead of sitting at the computer for hours at a time), I decided to get up every 30 minutes or so and blast out one set of an exercise, or run down to the mail box and back, or practice the kata I’m working on.

I felt great at the end of that day. As quickly as it came the black pit around me had vanished, and I went back to karate and even helped with a bit of teaching others (which the week before had terrified me greatly).

close up of emma kyriacou
Smiling again.

I quite often feel that there is no real ‘me’ anymore. No solidly real ‘Emma Kyriacou’, recognizable in a range of circumstances. I change so much I feel more like Dr Jekyll and Mr Hyde. Or rather a multitude of characters, who pop in and out as if this was some kind of WandaVision version of reality.

Is it the real me when I’m despairing and spend a lot of time weeping? Or am I the calm competent one who doesn’t get angry at the kids and goes to karate training three times a week? How much of me is due to my decisions, and how much to the amount of dopamine that manages to fight its way to my brain?

I doubt if I’ll ever find out. Maybe I just need to accept that it is what it is. Contradictions are the stuff of life after all.

I’m going to sit here and contemplate this for a while. Be quite and still and breath deep.

As the earth continues to hurtle through space at a million miles per hour.

If you feel similar, if you need help or feel unhappy:

Reach out to your health professional, doctor, friend or family member. Please don’t allow yourself to feel alone and unhappy. There are people out there to help you.

kitty laughing into camera
Kiity Fitton - usually up to mischief.

Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.

Find out more at her personal site below. 

emma_k
Emma Kyriacou. Quite good at hitting things.

Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)

Find out more at her personal site below.