Prepare to Dye 🌈

Where Emma ponders preparation

Hello! Welcome, and happy Halloween 🎃.

Now the truth of the matter is our Parkinson’s (or whatever diagnosis you have) is unlikely to be in isolation.

‘Ok, Emma, we need clarity’

I hear you, dearest reader, I hear you.

What I mean to say is - it is pretty unlikely that PD is your ONLY health thingy. Even us Young Onset folks are far enough along the road to have a few other twitches and ailments.

I, for example, have a form of arthritis where calcium deposits on the outside of my bones, mainly the spine. It looks like melted wax on a candle in the X-rays…kinda cool. Whenever I break a bone, which is fairly frequent (thanks to crap balance) it heals with a big lump instead of knitting internally, making it vulnerable to further cracks and chips. Just, please, wrap me in bubble wrap!

This can mean that I am unsure what thing is causing my pain…Parkinson’s or arthritis? Both? Or something else like a cold? It makes treatment hard. And that’s just the physical, then there is mental health.

We all get ill and most of us will become so with something long-term, degenerative or terminal. It is part of being human. But no one prepares you for the multi-tasking multi-symptom juggling act that this can bring.

And I suppose what I am wondering is should we prepare for inevitable illness when we are younger?

I am in the UK and currently, we still have a vaguely functioning national health system. Something we have been fortunate to have, but that is moving ever closer to an insurance-style model. We have been a little guilty of taking it for granted, and perhaps, therefore, taking the fact that we will be cared for in our illness and retirement. But I don’t think even in places where you operate a different system people necessarily pre-plan for illness.

I don’t know what illness preparation would look like but I think I am really pondering mental and emotional preparation. Humans are odd - we know we are mortal and yet, certainly, in the Western approach, make few or no plans for decline and death.

I know from speaking to some of you that the idea of planning our funerals and death wishes is too painful. I understand completely. It is hard and I would love to see a supportive conversation around this topic. Gently but habitually talking to family and friends about your wants, wishes and making it ok for them to speak openly about their fears for the future.

It was incredibly hard to talk to my children when I was first diagnosed about the future as they were 11 and 16 at the time. But we have all reached a position and age where we have a fairly clear picture of what I want and might need. Also what they need.

One day I will require hospice care and probably need intense care before that and I don’t want my children to feel they have to provide - they deserve to know that I do not expect hands-on care from them. But it has taken lots of gentle conversations about this topic, tears and denials that they would ever put me in a home etc…to reach the acceptance that that course of action may well be the perfect one.

To be honest I’m trying to convince them I need to live in a nice luxury hotel now…No housework and room service wine would suit me nicely!

It has taken, as it does most of us, for me to get critically ill before putting this stuff in place. I would love there to be a less stressed and more emotionally calm time to have organised these things. Early preparation isn’t bringing mortality closer, it is being in control of what we can, now, and allowing space for the inevitable.

If we are prepared it allows time for the grieving and all the other small but important bits to have space. My mother-in-law is on a mission to ‘die tidy’ - she has everything organised, decluttered and tidy. This means when she dies her sons will have all the paperwork and arrangements catered for and they can get on with the grieving instead of wrangling an unsympathetic system of lawyers and bureaucrats.

I would love your thoughts on these ideas. As ever drop me a message, comment below and share with anyone you think might benefit from my rambling :)

Finally, if you’d like a copy of The A-Z of Parkinson’s, you can buy one here or get it free when you become a paying subscriber.

with love

E xxx

P.S. On a lighter note here are our Halloween efforts…