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

https://www.justgiving.com/fundraising/janet-barnes10

 

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