Never Forgotten

Older man and woman couple smile at the camera holding drinks.

I usually write my blog on Monday for publication on Tuesday. Sometimes I write it on Sunday, planning and all that being an important thing. As is consistency. Every Tuesday. Without fail. Why Tuesday? Well, why not? It’s not Monday and it’s not Wednesday when you are thinking it’s nearly passed halfway through the week. It seems to work for us. Well. It has up to now. This week has been hard.

This weekend was ANZAC Day in New Zealand. Other countries have Remembrance Day or Veteran’s Day. 25th April is our day to remember. People all over the country attend dawn services and pay their respects. This year was no exception. As I left my house in my Scout uniform with my children I glanced at my mobile phone and saw a message from my step-sister in the UK asking me to call her. I instantly knew my day was about to get a whole lot worse.

My Step-Mother, who lives in the UK, had been in hospital for quite some time. Since October 2020. She’d suffered a stroke and was supposed to be having rehabilitation. It’s hard to arrange in a pandemic situation. The NHS was stretched to capacity even before Covid-19. It’s even worse now. Overworked, underpaid staff pushed to deal with as many people as they can. I guess it’s inevitable that some slip through the cracks.

family standing by a bridge in the sunshine.
Happier days. On a trip to the river near our home in New Zealand.

She didn’t just slip – it’s almost like she was pushed through the gaps in the health system. First sent to a ‘nursing’ home that was actually sheltered housing, where for some reason she took too many blood thinners. We never discovered how it happened. She was rushed back to hospital where my father and her daughter were called to say their goodbyes. Removal of medicine – and all food and drink too it seemed, encouraged her daughter to feed and water her Mother herself. They were in a side room that wasn’t regularly cleaned next to a Covid ward.

With the encouragement of family and friends, she began to significantly improve. She was smiling and laughing, was able to talk coherently and was determined to go home.

She was put back on a ward with other patients which the hospital said meant she could no longer receive visitors. Her health improved a little, then began to decline. She was again sent to a nursing home for rehabilitation, but rarely had opportunity to get out of bed. She was allowed one visitor, once a week. She was doing better. My Dad was even going to take her to a dentist to get her bottom false teeth replaced because hers had been lost by the hospital months earlier.

Then she fell whilst in the care of the home. She was sent back to hospital. My Dad was told she was too frail to use her mobile phone or tablet. He didn’t know what was wrong. He wasn’t sure why she’d gone back to hospital. Worse, nobody was allowed to visit.

Her daughter and my father were called at the weekend. This time there was nothing they could do. She had deteriorated so badly and it was thought she’d caught an infection. She died Saturday afternoon GMT, Sunday morning NZT.

mother, daughter and granddaughter stood on a driveway in the UK.
Three generations stand together at my childhood home.

An unwitting victim of Covid-19 and a litany of errors and issues with care. Not counted in official figures of course, yet still a victim of the pandemic and the stress it’s caused to the health system in the UK.

I am bereft. She was my Stepmother but had been kinder than my own birth mother, who was a narcissist and a bully. My Step-Mum showed me incredible kindness and love. In return I did what daughters do. I complained about her, I forgot her birthday often and didn’t call as much as I should. But I loved our conversations. She loved my children like her own grandchildren, and she taught me that family is more than having blood relations.

What does this have to do with Parkinson’s? Well I guess not much, but it reminds us all how very lucky we are, especially in New Zealand, to have (so far) missed the bullet that is Covid-19. I want to fly back to Yorkshire to comfort my father, yet I’d face isolation quarantine, and more importantly, the threat of Covid. I read that Parkinson’s may be one condition that may be exacerbated by Covid. Even if this is not true, I don’t plan on finding out.

Grieving via video-call is not quite the same thing. My children and I have talked at length about her and our grief and sadness is real, but we have no other family to share it with. I have a small family. I want to be with them, but I must stay away.

Because I have cried so much I have been exhausted, which means my sleep patterns are stuffed, which means I’ve not been exercising. I need to do that. I know it’s what she would want. I must try harder, do better at looking after myself. My symptoms have been worse this week.

She spent her life volunteering with the St John Ambulance, of which she was so very proud. She raised heaps for breast cancer care. She believed in helping others and doing the right thing. I will forever hold her close in my heart and can only hope that I can help as many people as she did. I will try my best to reach out and continue to encourage people to live life to the full.

ANZAC Day will forever hold more poignancy for my family. Lest we forget.

Until next time, Kitty.

Older man and woman couple smile at the camera holding drinks.
Mum and Dad.
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. 

Constant Evaluation

woman sat on a bean bag on the floor smiling.

It’s been about 13 years since I first noticed I was dragging my foot.

I can’t pinpoint the exact beginning, but I remember the first time I became consciously aware of it, and wondered if there was something wrong with me.

I was 30 years old, and my first baby Niko was somewhere between 6 months and a year old. We were staying with my Mum and Dad on their farm for a holiday. Niko was commando crawling around my parent’s living room when Dad asked me why I was limping.

Dad was the first to voice it, but as soon as the words left his mouth, I realised I had been vaguely aware of a slight non-responsiveness from my left foot. My husband Elia confessed he’d also noticed, and was also wondering what it was. If I concentrated my walking improved temporarily, but concentrating wore me out and I quickly got grumpy.

Being grumpy or anxious was pretty much just me as usual – given I’d hadn’t really slept much at all since Niko was born this isn’t really surprising.

A woman at a lookout in the bush smiling against a blue sky.
Young pre-baby Emma (at the look out at Bald Spur on a climb up Mt Te Aroha), 2003

It hadn’t always been that way. As a kid I was happy. I was really active – loved to play tennis and soccer and lots of other ball games, was a good runner, a bit of a dreamer, wrote poems, played the piano. I really loved learning and enjoyed school. I was a huge fan of nature and going into the bush.

Then puberty hit, and my motivation for physical stuff seemed to die. Running suddenly felt like a massive slog. I worked very hard to do well in school, but stopped writing and learning music. 

Obviously, I hated my body. I couldn’t decide anything – like what I wanted to do with my life. I had always wanted to write, but now I knew I was really bad at it, and what I actually needed was some way of earning money.

I didn’t think I would be able to handle the rigors of farming life. I was really keen on university but was told all my subject choices were awful. I ended up in law school, convinced I was going to fail.

Somehow though I managed to survive university and my 20s – although I didn’t end up with a law degree! But I graduated, I got married, and we (eventually) got reasonable jobs.

But I didn’t know if I was happy. I didn’t know if I was doing what I was supposed to be doing with my life. I was asking myself ‘is this it?’ I guess.

woman sat on a bean bag on the floor smiling.
Coping with being at work in 2015. Felt uncomfortable at my desk sometimes. On Sinemet by this stage, walked with a cane.

I had a lot of failures trying to fix this underlying malaise. I tried losing weight. It didn’t make me happy.

I worked hard to get promotions and pay rises. It didn’t make me happy.

We saved up money for an overseas trip, which was an incredible adventure, but over-all I felt much the same.

Got on the property ladder. Meh.

Maybe some anti-anxiety medication would help. Not really.

I know – lets have a baby! Yip having a baby was a wonderful adventure, and Niko the cutest baby in the history of babies. But being a parent added in new difficulties, and I still didn’t feel like I was fulfilling my purpose.

I started to drag my foot before Niko turned one. It took a long time to diagnose the problem, during which I worried that I had a brain tumour.

It wasn’t until my second baby Luka was about 18 months that I was diagnosed with segmental focal dystonia. Yay!! No brain tumour! No death!

 

I start taking Sinemet. Suddenly life is wonderful. I walk down the street amazed at my ability to walk and not trip up all the time. The doctors are sure about the dystonia thing, and are sure it is not Parkinson’s. It won’t get better I’m told, but it won’t get worse. Just keep taking the Sinemet. 

excerpt from letter in neurology dept
An except from a letter sent from Neurology to an insurer (who were trying to decide whether to insure my income or not)

As my “dystonia” got worse and worse over the years (answer take more Sinemet), I grew unhappier and unhappier. I struggled through life basically.

Skip forward a few years, and now I’m 42 years old. I don’t have a Dad anymore. I do have Parkinson’s. And three kids.

I’ve gone back to loving physical activity. The whole body and brain learning of karate is fascinating me. I write. I still work part time and largely from home. I am grateful to be able to use my skills. I get anxious sometimes. When I do I cry loudly and get very obnoxious to my family. I love philosophical conversations with my 13-year-old, snuggles and jokes with my 11-year-old, and singing and dancing to music from both Frozen soundtracks with my four-year-old.  I get mad sometimes and rage at things and people. Then I get over it and love people again. My marriage with Elia is now 22 years old (or is it 24? How old are we?), but we’re still learning new things about each other.

Life isn’t perfect. Life is fun sometimes, tiring sometimes. Sometimes it hurts.

It is awesome, it is shit. Life, and me, are constantly evolving.

a child and a woman playing football in a sunny garden.
Beginning to exercise, new to karate, post-Parkinson’s diagnosis
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. 

Laugh in the Face of Adversity

woman in a red dress talking into a microphone

It is currently World Parkinson’s Awareness Week. Or month, depending on how you look at it. It was World Parkinson’s Day on 11th April, James Parkinson’s birthday. But enough about him. Some of us sadly have to be only too aware of flaming Parkinson’s every single day. It’s a bit of a drag. (No pun intended.)

I was delighted to be asked to take part in a fundraiser to raise awareness about Parkinson’s, a comedy night held in Wellington, New Zealand. It was a great night, and I was lucky enough to meet some fabulous people from our community.

woman in a red dress talking into a microphone
Kitty has a microphone and is not afraid to use it!

It got me thinking about comedy regarding disabilities. When I first began doing stand-up everyone thought I would be doing the same, stale old stuff about ‘shaken not stirred’, wank-jokes and falling over. I was warned that making fun of people and Parkinson’s was a sure-fire way to disaster.

However, that’s not my style. Laughing at someone with an uncontrollable tremor isn’t something I personally find that amusing. There’s so much more rope in pointing the finger at the unafflicted, the able-bodied, the smug healthy people. My act is all about the reactions I have experienced and trust me, there’s heaps of material there. Even the dear people from Parkinson’s NZ copped it from me. Everyone (and I mean everyone) kept saying how they were huge Parkinson’s supporters. Check out my link below to see what I thought of that.

two women smiling at the camera.
I'll do anything for attention. That's Michele A'Court with me. Lucky woman.

For World Parkinson’s Day / Week / Month (in my case lifetime) I would like to share a little clip from Emma and myself. It’s short, funny and sad all at the same time. Oh – and another clip from the comedy night. I hope you enjoy it.

It’s a short one this week but hey – you get films! Keep smiling, keep moving, keep in touch.

Until next time, Kitty.

 

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. 

Jump!

emma jumping with arms outstretched in front of green door.

Learning to jump – both literally launching oneself into the air, and figuratively jumping right into the deep end, or doing something you’re afraid of – normally are equally impossible for me. More like learning to fly (“I’m learning to fly/ but I ain’t got wings/ Coming down/ Is the hardest thing”).

Unlike Tom Petty though, I’ve got the coming down part sorted.

Jumping is a thing with me partly due to a kata I’m learning called ‘Enpi’, which roughly translates from Japanese as ‘flying swallow’. It is one of four Sentei kata that karateka at brown belt level need to know. They are all much longer, more difficult kata than I’ve learnt for previously. Enpi, although apparently the shortest Sentei kata by numbers of moves, is famous for this spinning jump you have to do at the end.

I don’t actually need wings to do this jump. Stronger leg muscles on the other hand would be handy. I do work on building leg strength fairly consistently, but at the same time I am one those dopamine-deficient people who struggle to maintain body mass. Exercise, particularly strength building exercise, is the proverbial plug in the dam at this point.

emma jumping with arms outstretched in front of green door.
Is it a bird? Is it a plane? No! It's Emma!

To do the jump you have to pivot from a forward leaning position, jump off one foot, spin 360 degrees in the air (feet tucked up) and land in the back stance (with about 70% of your weight supported on your bent back leg).

(Kitty – “Good grief!”. Rolls eyes.)

Yes, this is difficult stuff. But I didn’t really realise the extent of it at first. I was too used to seeing kids (aged from about 8 to teenagers) do this jump before. They don’t seem to have a problem with it. They love it, and they look like more like flying squirrels than swallows though… maybe some kind of squirrel ninja.

I, however, am 42 years old. My joints are slightly dodgier, and I lack the spring of youth. To say the least. It is now making sense to me why Sensei has stopped making those over 35 do Enpi very often.

I think it was hearing that maybe I wouldn’t have to do it though that made me really dig my heels in and want to learn this jump. I had been in a bit of a slump before that. After passing the brown belt test I’d felt jubilant and victorious. I’ve done it! Then I glanced up at the size of the mountain left to climb, and at once started down-grading my expectations. The fear of thinking I can’t do anymore was stopping me from trying.

two women smiling at the camera.
Not sure which one is the strangest here....

Which brings me to the second part of the significance of learning to jump for me – it is really a metaphor for doing what terrifies me. I got inspiration to bust through the veil of terror partly from being told it was okay to not try. But a lot of the inspiration also comes from my friend Kitty. She thinks I am a hard worker, but she amazes me with her ability to do brave stuff. I went to support her at a comedy gig she did recently. I thought I was being brave by going out at night (I’m afraid of being tired and freezing up a long way from the safety of home). But Kitty is the one who bloody got on stage and performed her heart out.

She is my jump inspiration. Jump in and do what terrifies you. Don’t listen to any voices telling you can’t – they don’t know shit!

As for the Enpi jump, no I can’t do it yet. I am amassing an amusing training montage, which has launched me back into some of my favourite anthems to jumping from the 80s and 90s. Van Halen led to the Pointer Sisters (which then obviously led to me doing a spoof of Hugh Grant’s dancing PM from Love Actually), which then led to Kriss Kross (‘nuff said), and House of Pain (truly an inspired band name for this context).

I’m having fun, and so are other people who’ve seen my attempts. I’m going to keep trying, even if just for the music.

I certainly do not intend to be put off by the fact that all this shouldn’t be possible.

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. 

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.