One in a melon 🍉❤️

Where Emma wonders what next

Well I’ve suddenly got popular! Hi newbies 👋🏻

Well, here we are approaching that ridiculous time where portions of the world lose their collective minds. No I don’t mean world politics but Valentine’s Day.

I’m not a fan of the rampant commercialisation and nonsense. BUT I am for sending out extra love to our loved ones, friends, neighbours and most importantly, the nasties. Cos’ you know, love trumps hate any day.

Anyway.

As you know things have been active in Emma world and activity has a cost. So needless to say my particular version of Parkinson’s demands a sacrifice when I get over excited. Cue cognitive jelly and especially those internal tremors. I don’t rightly know how to describe them but I imagine under my skin it’s all whizzed up like a smoothie. I always find the tremors give me dyspepsia type feelings and a sense my muscles have run a marathon - leaving me feeble and weak.

On top of that I have a cold.

‘Do be quiet, Emma. We told you this would happen’

Yes, dearest readers, you did.

I must heed your wisdom in future - she says with fingers crossed behind her back. Promise.

All this does lead to some positive action. As I have been so Organised and Productive I have cut a lot of superfluous shit out of the way. Which is a long way of saying I’m not going to write the Who Stole My Dopamine or Tumbled books.

I believe I witter enough here without adding to the overstuffed airwaves by adding more memoirs about PD. As I have begun collating Handshake, I have realised there are so many good stories and memoirs¹ out there that mine is just adding to the noise.

That leaves me lots of time to devote to my other projects that frankly, are more life enhancing than my moaning about an inexplicably annoying incurable disease.

I shall continue to swear profusely about the crapness of PD here and I welcome your suggestions on any area you’d like me to write about… (hit reply or comment)

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I wanted to touch on money. I know, taboo central here. But stick with me kid, I’ll see you ok.

Many of us PD folks are affected fiscally by our disease - unable to work, medical bills, all the extras that people with chronic illness need² and so on.

Personally, I get no support from the state and can’t easily work in normal jobs. I make a little money from this letter and from other writing, art - a smattering. I am incredibly fortunate to be supported by a partner. We live frugally on one wage (a Scottish social worker £43000/USD53000) and have 1 and 1/2 dependant kids. One of whom is about to embark on university. We don’t have holidays and have a very battered old car. And yet I think we have a rich, abundant life…it’s not all about the money.

But it might about to be - it’s getting harder. Like everyone we have noticed the bills ramp up beyond our comfort zone.

But there is another issue facing the chronically ill and disabled. Regimes across the planet are scapegoating us and cutting health services and social welfare benefits like Danny Trejo on speed. Why? Because we are easy targets and they don’t give a shit.

But we can use our voices, stamp our sticks and run over their toes with our chairs…

We can get activist about it; start by sharing our stories through social media, blogs, or speaking opportunities to raise awareness. Connect with disability advocacy groups that fight for financial security and offer ways to get involved. Contact politicians through letters, petitions, or town halls to push for policy change. Engage in direct action, whether through online campaigns, protests, or mutual aid efforts. Use media and public pressure by working with journalists, amplifying petitions, and joining larger movements.

With PD especially popular³at the moment, there’s a hell of a lot of us… so let’s get out there, after the apathy has subsided :)

Anyway, as we approach the university scenario I will have to find a way of working with a more sustainable wage. Preferably from home, preferably doing something writer-y, internet-y, art-y. If anyone has any ideas or jobs or anything that you’d like me to perform do get in touch.

with love

E xxx

1. My writing mentor

Kamin Mohammadi

runs the most amazing and transformative memoir writing course - I highly recommend.

2. https://www.bristol.ac.uk/media-library/sites/geography/pfrc/documents/fwb-of-disabled-people-extra%20costs.pdf

3. 8.5 - 10 million people worldwide.