Parkinson’s Awareness Week in the UK – #incontrol – Day 4 – the world remains my oyster

T_2ParkinsonAwareness

 

On Day 4 of the 2014 Parkinson’s Awareness Week in the UK I just want to share with you why I believe the world remains my oyster!

Feeling #incontrol gives one a sense of dignity and self-worth and for those of us still living independently with Parkinson’s, finding ways to maintain that sense of self-worth, in spite of the erosions of disease, is important.

I have always worked in organisations that were global in mission, in both the public and private sectors, and most of my working life brought me into contact with people around the world.  So for me to be happy I need to feel engaged with the wider world.

These days my life is mostly housebound and for anyone looking at the drastic and radical change in  my circumstances, and comparing how I lived BP (Before Parkinson’s) with AP (After Parkinson’s), might easily lead people to be shocked or saddened for me.  I can’t pretend that I am not sometimes shocked and saddened for me too – it is all so very different.

The reality, however, thanks to my access to the internet, is that no-one needs to feel this way for me for too long.  I appreciate sympathy and support and welcome offers of help, of course I do, and there is no doubt that I’d really rather not have any chronic, progressive and incurable disease …BUT I have chosen to accept what has to be accepted and find a way of living that allows me to battle my symptoms, have fun, remain engaged in things that are important to me and allow me to remain (mostly) #incontrol.

The world remains my oyster and it is all thanks to my access to the internet.

With the internet, not only am I sail-racing (virtually) with Sailonline and also helping run the site as one of the volunteer admins, I am Tweeting with astronauts and watching rocket launches, keeping up with chums around the world via Facebook and email, watching TV online, learning how to create graphics with GIMP and sharing them online (see this blog, Jubilant’s blog and my website), finding recipients for knitting projects (hello Battersea Dogs and Cats Home!), keeping up to date with developments in Parkinson’s research, engaging with wildlife and environmental campaigns that matter to me (protecting tigers, protecting the world’s oceans), keeping an eye on weather situations around the world… my world is still full of endless possibilities and I am kept busy!

Without the internet I believe my life would feel much diminished.

It would undoubtedly be preferable to be actively and physically engaged out in the world, but the raft of gastro and parkinson’s symptoms that hold me hostage makes that very difficult and oftentimes impossible, so the internet permits me to get involved/remain engaged as much as possible, while enabling me to create a calm and appropriate environment at home which helps to keep my symptoms under control.

I feel very lucky and wish that one day everyone with Parkinson’s/parkinsonism may feel as #incontrol as I do right this moment!

@joannekarma
#RCtheParrot

 

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jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

2 thoughts on “Parkinson’s Awareness Week in the UK – #incontrol – Day 4 – the world remains my oyster”

  1. It is people like you who inspire others to get on and have a life in spite of the cards dealt them. Whilst understanding how it is that some people feel that life is over when they get dealt the duff hand, like you (I think) I believe we all need to concentrate, not only on each day as it comes but, moreso, on the things we can do as opposed to the things we can’t

    1. We’re with you!!! Well, I guess you are with us. Shock here is seeming to get worse every day trremos worse, rigidity worse, voice weak, breath hard to find at times, smile so unnatural, slow and slower ( when he heads for the car THEN, I begin to get dressed to go!). But his spirit is strong and he really believes he will be healed! And to work he goes slowly! Grateful for what we used to take for granted

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