It’s not that bad after all

I’m tucked up in bed, late at night

Feeling exhausted, looking a fright.

My left foot keeps on twisting and cramping,

I feel like shouting and kicking and stamping.

And I try to remember a time back a few years

When I was fit and healthy and not prone to tears.

A time when I could keep going right through to dawn

And then work all the next day without even one yawn.

A time when I thought nothing of performing on stage

Then straight to a party and with people engage.

When I wasn’t afraid of crowds and tight, cramped places

And I could do up my buttons and zippers and laces.

A time when I played tennis and netball and loved reading

And I could do things easily; trying and succeeding.

And as I remember, a tear trickles down my cheek

I try to stop it falling, I don’t want to appear weak.

But then my mind fixes on the last three days

When I was truely blessed in so many ways.

I reached a milestone birthday, was showered with love and good wishes

I received cards and flowers and many hugs and kisses.

I spent time with loved ones and ate too much cake

And talked and laughed until my sides they did ache.

My new walking poles will be fantastic as I stride down the track

And at Officeworks my trolley with goodies I’ll stack.

And my finger will wear my special opal with pride

And I”ll remember how lucky I am and feel happy inside.

So now I must stop thinking of things I CAN’T do anymore

And focus on the positives..that’ll help me I’m sure

So I’ll stop here and post this cos it’s  stupid o’clock again

And if I don’t get some sleep soon, I’ll wear out my poor brain………

Thanks for reading my 2am ramblings….if nothing else, they may have cured YOUR insomnia!

Have a great week and I’ll catch you next time…

cheers and goodnight x

 

 

 

 

 

 

 

 

 

 

 

 

We’re not in Kansas anymore!

Awake since ‘stupid oclock’ , I’m lying here, listening to the wind howling outside while all warm and snuggled under my doona. It’s been so windy and rainy that I fully expect to look out of my window when the sun finally comes up and see bright, technicolor flowers and little munchkins dancing and hear them singing “. Ding dong the witch is dead!!!”
….and for those of you who have no idea what I’m talking about….WHAT? ….Were you living in a bubble growing up? 🙈🙈
And I get to thinking…. hmm dangerous….and then I write….
That movie is a bit like life for PWP……
One day you’re living life quite nicely……you’ve got a good job, normal health, normal everyday chores take a normal amount of effort, your relationships are strong, you enjoy going out at night and you enjoy your job. Everything is going well . The thought that your life might change suddenly never enters your head …. you are taking your expected path…you are invincible.
Then, ever so slowly ( no pun intended ) strange  things start happening. You can’t brush your teeth, sprinkle sugar in your cereal, stir your tea. You can’t seem to make the  fingers on your right hand play the right notes on the piano…your once beautiful handwriting turns into tiny chicken scratches on the page, when you’re tired at work your right side of your mouth droops and saliva starts to leak out of the side… Between your shoulder blades is so stiff and sore that , at times , you can hardly breathe…your right shoulder is so sore that the specialist wants to cut into it and poke a camera into the joint to see why it’s not working. Your right arm stops swinging when you walk and bends upwards, hand drooping, when you’re tired. Your feet start ‘plopping’ instead of going heel-toe and your toes are starting to curl up and cause you to trip as you walk. You start getting “inner shakes” where , on the outside you appear normal, but on the inside you’re trembling like you’re in the snow without a jumper. You start getting panic attacks and feel depressed. Visits to the Dr with these weird things get more prevelent. Test after test is administered,…. For thyroid problems, diabetes, heart attack, MS, stroke, brain tumour… Less sympathetic doctors tell you that it’s “all in your head” ( lol well they were half right!!!). These tests and these symptoms gather momentum …starting like a soft breeze and growing in intensity to tornado proportions. You’re caught up in a twister of tests, pain, confusion, disbelief, accusations of being a hypochondriac , lectures about ‘getting over it’, insomnia and thoughts that just maybe that doctor was right….maybe you are going a tad crazy!
Your life is whirling around and around spinning out of control….until one day, a new doctor has an idea and sends you off to a neurologist…..and then, the whirling stops, and the diagnosis of PD lands on you and knocks you flat as the Wicked Witch of the East!
Then the Neurologist  .. Like the Good Witch of the North..gives you some magic medication and hope (in the form of Madopar not ruby slippers) and sends you up the yellow brick road to search for the Great Cure …… to travel dangerous paths and fight the Black Knight. To battle killer rabbits and shrubbery-challenged Knights. To ride on a horse using just coconuts. And to argue with rude Frenchmen… OH WAIT A MINUTE…WRONG MOVIE!!!! 😂😂😂😂🙈🙈🙈🙈😂😂😂😂
*smack in the wrist for digressing in a blog yet again*
On the way to the Great Cure you meet ‘yourself’ looking for a brain….one that’s not broken, one that’s fully functioning and has a dopermine producing part that still works.
You meet ‘yourself’ looking for courage….courage to face this diagnosis, to accept it and work with it. Courage to face the challenges that PD presents to everyday living. Courage to tell people that you have a debilitating, incurable disease that is NOT just for old frail people that shuffle and shake a lot. Courage to face an uncertain future. Courage to undertake a radical new route through life…full of good nutrition,lots of exercise and lots of frustration and pain. Courage to be positive and ” Always look on the bright side of life ..Dee dum Dee dum Dee dum Dee dum ” …..WHAT IS IT WITH ME AND MONTY PYTHON THIS MORNING.??? Get back on the yellow bricks!
And then there’s ‘yourself’ who is needing a strong heart to still love yourself and your life, even though it’s turning out differently from what you’d planned and indeed intended.
You start to travel more smoothly as your magic meds begin to work but just as you become complacent , Mr P sends in his flying monkeys to mess it all up again..
And so we keep travelling this new and unknown road ..searching for the Great Cure and hoping that we can stay positive and courageous …and wish with every fibre of our being that eradicating Mr P from our lives was as easy as throwing a bucket of water over it.

Cheers everyone..have a great day and remember …..”it’s only a flesh wound…it could have been worse.”  🙈🙈🙈😂🤣🙈🙈

Sent from my iPad

Tweaking Time

Hi all, I can’t believe that it’s been nearly a whole month since my last post. I don’t know where the time has gone. The initial obsessiveness that I experienced with my painting ( caused by my ‘patch’ ) has settled down and the production of pieces has slowed down..thankfully, as my home was becoming overrun by framed pieces and canvases. There is still paint appearing on surfaces where it shouldn’t and I still don’t have a dining room or table though!

The past month has seen me step out of my comfort zone and put my paintings on display at The Niche…the headquarters of Parkinsons’s WA. I have been very surprised amd truly humbled by the response they have generated. Thank you to anyone reading this who has been to have a look and been kind with their comments. I have been asked to extend the exhibition until the end of August, which is awesome because although many have sold , there are too many left to have a home in my house!

I was going to talk about ‘tweaking the meds’, but as usual got sidetracked. Not to be confused with ‘twerking’ ..sorry people…thought you were going to be able to laugh at my dancing didn’t you?!?..

The annoying thing about PD ( well one of the many annoying things) is that although you initially respond really well to the synthetic dopamine ( levodopa) , your body soon get used to it so the gap between meds has to shorten and /or the strength of the dose has to increase. Then other problems start to occur and other meds are prescribed to counteract the side effects that appear….and the tweaking begins its cycle. Some months ( or if you’re really lucky, years) roll by and your body gets used to THAT dose , tweaking time again…. and so the cycle continues.  Constant research is happening and new meds and devices are developed…. but the mainstay of treatment seems to be the same as it has been since the beginning discovery of the effects of dopamine and the development of the synthetic dopamine. Wouldn’t it be amazing for someone to actually come up with a cure instead of a treatment that needs to keep changing? But thinking positively….at least we can get some respite. There are many PD sufferers who don’t respond favourably to the meds available ….getting awful side effects, or very little relief,  and I’m thankful …oh so thankful that I’m not in that group, yet.

At the moment I’m in the ‘needing to tweak” phase….so don’t be surprised if one minute I’m chatting and bouncy and literally the next minute I come to a complete stop. It’s a bit disconcerting for someone to experience if they’ve never seen it before… but if it’s me or someone else it’s happening to, don’t suddenly change your attitude or way of speaking to us. Help, but don’t fuss…try to be empathetic not sympathetic…..and be prepared to suddenly walk with us at the pace of a Snail! ( a steadying arm and a cuppa also does wonders 😄😊😄)

Well my meds have suddenly worn off now and I’m in an ‘off’ period so I can’t type any more Thank goodness for my microphone dictation ability of this iPad  it’s a pity it doesn’t do punctuation but it’s better than leaving abruptly good night  and have a great week