“Oh no, she’s on again”

Most people I know have a personal battle to fight, whether it’s an injustice, ill health, or a change to their life that they neither wanted or expected. If you don’t, consider yourself very lucky.

People carry their burden in different ways. This doesn’t make them better, worse or more or less heroic than another person. We’re all individuals who bring their different personalities and physical and mental capabilities to the situation.

I feel the effects of Parkinson’s every day, but at the moment I feel strong enough to be loud and speak out about PD. I want to change opinions, educate and fight for better cures and treatments for those with and without a voice. I’m fully aware that my strength has a time limit, but I can only do what I can, whilst I still can.

So when you sigh and say, “she’s on the radio again!” or wonder why I bother to keep doing challenges etc. It’s because I have a voice and it’s a waste not to use it whilst I still can.

Listen to me (if you can bear it!) on BBC Radio 2, Zoe Ball’s Breakfast Show at 9am Thursday 1st July.

Day 2. 20 Days In 2020. My journal entry from a year ago.

I remember the quiet walk down to the post box. Just the sound of the wind and our foot steps. A real sense of isolation was setting in. Then the gale force winds came……………..

Hard copies of the journal are available from my Etsy shop: CanalSideArt, with profits going to Parkinson’s UK.

20 Days In 2020

It’s one year since I went on my 20 day painting retreat. I went off with my dog Pedro to Sue and Mark’s caravan perched on a remote hill in rural Wales. I cut myself off from the world, gave myself time to reflect on things and just painted. Due to COVID-19 I never did get the chance to hold the planned exhibition of the resulting work, so I thought I’d post the journal I wrote day-by-day. Hard copies of the journal are still available for £5.00 – profits go to Parkinson’s UK. Janetmbarnes@ntlworld.com

“The Time Is Now”

I’ve always loved the song by Moloko and it sums up my current state of mind. During the last two weeks of self-isolation I scribbled down a few thoughts on what it can feel like when you get diagnosed with a degenerative disease.

It might give an insight as to why myself and others like me take on crazy challenges, and sometimes seem to be endlessly pushing ourselves.  Lets be clear, once you get a diagnosis like Parkinsons your whole world changes, everything you do, think about, plan is through a Parkinson’s filter or tint.  I think I’m quite a positive person but It seeps into everything I do and there isn’t a moment that goes by that I don’t think about it.  I’m training hard for a 12 hour boxing challenge “Punching Through Parkinson’s” and this challenge is important to me on many levels:

1. Keeping fit is very important to help delay the progression of Parkinson’s, so why wouldn’t you?

2. My body image is more important than it’s ever been. It’s the one thing I can control at the moment and it helps me fool myself (and others) that everything is going to be okay.

3. I’m obsessed by raising awareness (and money for research) of Parkinson’s so others diagnosed after me can feel more informed, accepted and understood within our society.

4. As other things start to be taken from me, my chosen challenges are within my control and provide me with renewed confidence and a sense of worth.

But all this has a time span.  As my condition worsens, my ability to do the above will reduce. So there’s a massive sense of urgency to life.  I have so much I want to do and achieve and my desire to do these things is greater that at any previous point in my life.  When you don’t know how long you’ve got left to be able to do things there suddenly becomes an urgency about life.  The challenges and opportunities in life seem easy compared to the looming threat of Parkinson’s and therefore “fear makes you fierce!  I no longer fear the pain or potential failure to complete a challenge, there are much scarier things to fear. Sometimes I break down in tears and sob with despair, the raw emotion and hope that some better medicines, and ultimately a cure will be found soon enough to help me and my lovely new found PD comrades before time runs out: THE TIME IS NOW.

Please support the “Punching Through Parkinson’s” challenge by reading and sharing the link below. Thank you, Janet xx