Living with Parkinson’s: Not Selling Out, Not Giving In

image of hands reaching out to touch

I’ve been struggling with lots of things recently. My life kind of fell apart for a while last year (I know, we all had our problems) but I’m claiming extra issues. I realised just how bad it had been when I undertook a presentation at a networking group I was in. While researching the information I wanted to discuss, I realised something that shocked even me. I was looking at the various different stressors that occur to people in their life. I realised with not inconsiderable surprise that out of the ten most stressful events you can experience in your life, within twelve months I had encountered seven. I’d completed one of them twice, so you could count eight. For those that aren’t aware of these events, here’s the list.

  • Death of a loved one
  • Separation or divorce
  • Getting married
  • Starting a new job
  • Workplace stressors
  • Financial worries
  • Moving to a new home
  • Chronic illness or injury
  • Retirement
  • Transitioning to adulthood

I didn’t retire, get married or transition to adulthood (some might say I’m still waiting on that one), but I moved house twice. With four children. In a volatile market. That was fun. I certainly have everything else on that list.

image of hands reaching out to touch

I have been floundering for a few  months it’s true. Not properly focused on any one thing and it’s caused me additional stress. However I have come to realise that some things are constant. There it is. My old friend chronic illness. I also realise that writing about this really helps other people. We have received messages from people all  over the world that find solace in knowing they’re not alone. I find it a huge blessing to know that just sitting here writing these words might just help someone out there realise they’re not the only one struggling in all of this.

Because sometimes we all struggle. Some more than others. It may be invisible, it might be more obvious, but it’s there. So many people that know me just see a brazen, loud, confident woman bursting with joie de vivre. They don’t see me crying over nothing, lying awake worrying how I’m going to continue to pay for everything, or that inwardly I’m in fear that really everyone thinks I’m a bit stupid and wasting my time.

Yet I will refocus. I will redouble my efforts and get back on track. I’ve had my lull, my period of hopelessness and it’s time to find me again. Because I’m not one to give in, despite it looking like an incredibly easy path. 

On that note you will notice that we have added a button for a service called Patreon. Yes, it’s a request for support and assistance, but we honestly cannot continue to keep writing and consistently provide content without help. We considered adverts, but want to keep this advertisement free. The reality is that to ensure we can invest the time that Good Moves needs, we also need you. Please consider joining to help us continue in our fight to overcome negativity around this awful thing we call Parkinson’s.

Let’s do this together.

Until next time, Kitty.

First twenty signups will receive a handwritten postcard from Kitty and Emma. Get going now!  🙂  

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. 

Living With Parkinson’s – Stuff I Find Hard

woman reading a phillip pullman novel in a corner.

Stuff I’ve found hard and things that help.


Just like everyone, I go up and down in life and wellness. Good times come and go. Sometimes I’m doing well, sometimes I’m going through a rough time. I feel like I’m doing well at the moment, yet not that long ago I was feeling like I was approaching rock bottom at a fast pace (or maybe smashing through it to delve new lows).
Everyone has suffering in this world, and I hope everyone can experience at least a bit of joy. Maybe my highs and lows fluctuate more wildly than what is “normal”, or the peaks and troughs are higher and deeper. I really don’t know, and can’t assume what others are dealing with. I do know that when you live with something like Parkinson’s, maintaining a reasonable level of functioning can be a difficult balancing act.
Here’s a list of some things that I find challenging and stuff that has helped me deal with it:
1. Challenge number one for me is to stop losing weight. Yes, I got the message about exercise, and maybe I overtrained a bit (I honestly don’t have a sense of this). I also maybe wasn’t eating enough – but again I don’t know. Has anyone ever tried keeping a food diary for longer than a couple of days? It is very hard. Food messes with the absorption of the levodopa so balancing eating right with taking the right meds at the right time has been nigh on impossible (and exercise the right amount, and work, and raise children, and blah blah blah). What has helped has been prioritising eating well, exercising less (a small amount daily or every two days). At least I’ve managed to stop losing and I’ve even gained a small amount of weight.
2. My second challenge is handling stressful situations without complete meltdowns. I have
three children so there is a lot of crying in my household (mostly mine). What has helped has been breathing exercises to relax and not have a panic attack when things are hard. I also have invested in some home help and dialled back my work hours a bit, and I have also dialled back the self-flagellation about all the ways I’m “failing”. A bit of acceptance of my situation has helped me here. Acceptance that being present in the present with my kids is
enough.


3. Lastly (it’s a short list – I’m tired!) I have struggled with fitting in exercise around work commitments and family commitments. I love to exercise (see the above re: over training!). It makes me feel so amazing. I love the feeling of my body working, and it helps big time with pain and stiffness. It also relaxes me, chuffing out my stress. But I can easily put other stuff first and then a whole day goes by without my fix. I got some good advice to block out time
to exercise in my diary – prioritise the time and don’t let anyone or anything take it! And if all else fails and I only have 15 minutes then I prioritise dynamic stretching / yoga. Nothing feels as good as that does!

So there you have it! Life goals achieved. Time for bed.

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. 

Anniversary

kitty fitton dressed as a fairy.

It has been an odd time here.  Five years ago to the day I was told I had an incurable neurological condition. Immediately followed by the cheery phrase “you will be limited.” From the so-called support person. Five years ago I was in a state of shock.  Stunned.  Disbelief. Denial.

To create additional angst on the same date exactly, four years later, I left my husband of 17 years.  On paper it looks crazy. Why would a person with a one-way ticket to who-knows-where with their health leave financial stability, safety and a life of ease?

Because dear reader,  I had learned in the very worst way that life is indeed too short. My husband, not a bad man, but not one that wanted to seize life by the horns and just get out there. Well, not while there’s so much good stuff to watch on the telly.

But I want more. I’d had fun in my twenties, but spent most of it building my career. My children came along, the twins after a terrible late miscarriage I thought I would never recover from. It wasn’t hard to choose to be poor for a while and give up my well-paid job to change nappies and tend to my babies. I would work again when they were a little older. So I thought.

Yes. We make plans, so many plans for our lives. Only to have them brutally ripped away. How you respond is the key to it all. Five years ago I was a curled up mess in my room. Crying desperately. I didn’t understand what I had. I didn’t know who to turn to and I had no clue if I could help myself. All I knew was ‘incurable’ ‘degenerative’ and ‘disease’.

 

kitty looking exasperated with hands held up in despair.
Won't anyone give me a chance?!

On The Scrap Heap

Yet here I still am. Five years on, Not yet fifty, still a way off it. People still cannot tell I have this awful thing. I exercise. Nobody likes to exercise, but I cannot stress to you just how amazing it is to help your mobility. The only downside is the time it takes. It takes a lot of time.

 But I figure I get that time back in spades. It’s because i exercise I can still play with my children. I can climb rocks at the river and jump off them into deep plunge pools, screaming with fear, joy and exhilaration at life. In summer I leapt off my friend’s boat and struggled to pull myself back up. I managed a couple of times, but I felt fat, ungainly and weak. Nobody else thought that, they just helped me haul myself on board so I could do it all again. Which I did. With gusto. It was fun. My upper body strength is better now. I’m hoping I can pull myself up alone.

The job market is tough. It depresses me. I have tried many things but the lack of interest from employers is demoralising. Just this morning I was reading there’s a supposed lack of skilled and unskilled workers in New Zealand. Really? Only last week I was declined for a position as a writer for a company. I had been doing some training for a business school,  who upon being asked for better than minimum pay for my skilled IT training in web development and SEO instead gave my planned  training dates to an unqualified man. I’m a professional trainer and I’ve got a wealth of technical and IT skills. I’m a good writer, I’m careful, considerate, intelligent, loyal and thoughtful. I work hard.

 

kitty fitton dressed as a fairy.
Stuff them all, I'll magic up my own blue skies!

Still Here

But after so many applications, not one interview for anything other than menial work.

I have professional friends who after accidents / injuries have employers and payment protection companies falling over themselves to help them return to physical fitness and gainful employement.

Got a disability? Go home. Not interested. Can’t even get  physio or a gym pass. I pay for it all. On my meagre (and it really is) income.

This has turned into a rant, but really it’s to show that not all is rosy in my life. I’m not exactly living the dream, but I’m painting the best picture I can. Staying positive and appreciating what I do have is marvellous for the soul. Simply taking  pleasure in seeing my garden take shape, my children grow and making the most of each day is good.

Am I where I wanted to be six years ago? Certainly not. Am I pleased to be here? Of course. Things could always better, but ultimately we control our emotions, our attitude, and with it, our destiny.

Go forth, stop feeling sorry for yourself, and live life well.

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. 

Dopamine Crashing

emma kyriacou sat smiling on a sandy beach against a stunning blue sky.

After saying last blog that I would do the opposite of whatever I thought I should do, I then totally forgot about that and just carried on with business as usual.

I’m actually repeating circles within circles, learning and re-learning the same thing over and over again.

In the week just been I’ve had three instances where I’ve have just totally crashed. Fallen off a cliff from good dopamine levels into absolutely none and sobbing uncontrollably because of it. Feeling like I can’t manage my life anymore.

I’ve discovered some awkward combinations for me. For example, when I’m tired (sleeping bad), and worried about something (one of my kids has been sick and I was worried), and if I don’t get rid of my stress cortisol through exercise, and combine that with forgetting to eat, followed by stuffing my face with sugar, and taking an extra rapid Madopar or two to deal with hard times…then the result can be the floods of tears. 

 

emma kyriacou sat smiling on a sandy beach against a stunning blue sky.
It's easy to relax whilst building sandcastles on the beach.

The really awesome thing that has resulted out of this is that it is serving as a reminder that if I don’t look after myself, I can’t look after anyone else. It also has shone a light on what I need to do to look after myself – and the large role eating and stress management plays into that.

I really, really have to be gentle and kind to myself and relax. So that’s what I’m going to do!

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. 

Nothing Special

kitty fitton gazing off into space thinking

The last few weeks have been rather tough. In fact, rather tough doesn’t really even begin to cut it. Yet on we go. The world continues to turn for us, though sometimes it’s hard to understand how everyone else is out there living their lives like nothing has happened. Death has a strange way of making you look hard at your existing life. It left me wondering many things.  My life, how long I may expect and how much good quality of it I can reasonably expect.

You’ll be surprised to discover I don’t really like thinking about this. I have come to realise that Parkinson’s progresses in a strange way. One day you’re fine, the next you find yourself really struggling to bend down to perhaps dry yourself after a shower, or to pick up more of that endless stuff the children drop onto the floor. I caught myself thinking “oh that was difficult” then realising with horror that this was probably down to my condition and not age.

Some of my friends have slowed down / allowed themselves to relax a bit about exercise. In my ‘other’ life I perform stand-up comedy, (yes, really) and often hear lots of jokes about going to gym. Or rather, not going to the gym. It’s such a laugh, I bought a gym membership, one day I’ll visit it, hahahahahahaaaa. Whenever I hear these jokes I feel strange, empty and more often that not, angry.

Those of us with Parkinson’s don’t get a choice over doing exercise or not. Well. Clearly we do, but personally I like being able to walk, run and chase my children about. I have said this before, but I will say it again; I hate exercise. It’s annoying, takes up heaps of time up that I could have better spent reading / gardening / having fun, and I can’t do it well. Only this morning I attended a Pilates class (“Pilates is soooo good for Parkinson’s you know”) and had to blink back tears a couple of times as I struggled to contort my body into a strange shape and try to remain dignified.

 

kitty fitton gazing off into space thinking
What lies ahead? There's only one way to find out.

Yet still I go. At least once a week to Pilates and then twice more to some kind of rigorous class. Why? Because I can feel that despite my Parkinson’s I am making progress. I may even manage to roll like a ball sometime. I have a ‘hollow’ back and it curves the other way. Whilst everyone else (even the fat old ladies) rolls about laughing, smiling and having fun being silly, I jerk about maniacally, trying desparately to right myself.

I feel silly, I feel awkward. Ungainly and ugly. A stupid thing. What am I doing here? Look at that graceful beautiful creature next to me holding her feet with her hands as she does this roll-thing effortlessly. It’s hard. It’s so hard. I feel tears rising and I try to blink them back before anyone notices.

Yet. Afterward I feel wonderful. I keep going. Soon I can lift my taibone a little whilst everyone rocks. Perhaps… perhaps one day I will make it. But I won’t if I sit at home feeling sorry for myself.

Believe me. I have plenty to be sorrowful about. I am sad about the breakdown of my marriage. I ache for my children when they are not with me. I am financially unstable and try not to think about the future. Like so many others I was denied greiving with my family due to Covid-19 when my Mum died. I learned this week my friend’s husband has a cancer that is terminal. I took my children to a funeral of a classmate last week.

Then there’s this neurological disorder I have. It goads me. I realise sadly I do need more medication. This saddens me because I know it means things have got worse inside my body.

 

kitty fitton wearing glasses looking hopeful against a backdrop of clear blue sky and flowering jasmine.
Hope for more sunny days and nice flowers.

So I fight. I fight because I have no choice but to put myself through this daily if I am to survive this with quality of life. I fight because I want to dance with my children. I want to dance for myself. I sing, though my voice may be altered, I sing. It’s not always pretty but I refuse to be quieted.

On I go. I’m not special. I’m not a fighter or a warrior or anything particularly brave. In fact, I’m just a woman with a scary neurological issue that currently cannot be fixed. I just want more time, like we all do. Not a patient, not someone to be pitied. I’m still here. I want to be me.

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 Hurts, It Works

woman on a rock against a blue sky in dancer's pose.

Keep On Moving! Hello again, or as we say in New Zealand, Kia ora. I have been remiss with my usual updates. It’s been tough getting back into a routine. What has been especially tough has been forcing myself back into exercising. Nobody likes exercise, but those of us who are forced to endure this … Read more If It Hurts, It Works

Surprise!

man in black leathers riding a red motorcycle.

Wait… What? Surprise! Remember me? I know. It’s been a really long time. You know when people say they have good reasons to be absent? Oh my, I have the best. No really I do. I haven’t just been a bit busy, I’ve been wrangling with some serious stuff. I have it all. Drama, excitement, … Read more Surprise!