Optical Delusion👀

Where Emma sees...things

Hello, my darling readers. Lots of you have become paid subscribers and I am tremendously grateful, thank you. In keeping with everything in this letter, upgrading tends to result in even more erratic writing! But it is a wonderful way to encourage me to keep filling your inboxes with questionable material. I also LOVE getting emails from you all, I am touched you share your stories, pictures of your pets and more with me 🙏🏻

I don’t need to tell you that Parkinson’s is a bizarre and unpredictable beast.

But dammmnnn what a few days I have had - even for me, this has been off the scale.

It all started with a nightmare - one of those where your real-life experience actively influences the dream. I was suffering from dystonia in my arm but in my dream, it was manifesting as a disgusting grub-like creature eating its way out of my arm. Yum.

I have had nightmares most of my life but some are vivid and visceral enough for the atmosphere of them to hang around. My day was tainted by this dream. On top of that, I was tired from dystonic pain and this always leads to a low-grade feeling of unwellness. By the evening came round I was feeling slightly feverish, and out of sorts and that’s when it got a bit loopy.

The walls down the stairwell began to move as if there was a giant snake under the plaster - writhing and twisting. I’m unstable enough on stairs without that as another threat. The dog didn’t seem to notice the exciting new extra so I assumed pretty quickly that my dopamine-addled brain was having a moment.

Annoyingly it got worse with the floor and bedroom walls all getting in on the act of rippling, heaving and playing let’s-go-back-to normal if I looked hard. If you have experienced visual hallucinations you may have found that a good hard stare (Paddington Bear style) makes it all behave for a spell. But let your attention slip for a second and mwahaha all the ‘beasties’ come out to play again. Often these play out at the edge of my vision, a peripheral hallucinatory game. Thanks, Brain.

Anyway, there is always a darker more triggering aspect to these and that is the presence of maggots. Not real, of course. My psyche loves a good maggot. Makes cooking, or handling things uncomfortable as I have to tell myself in a continuous mantra that it’s all bollox. The battle with a fake vision ‘truth’ versus a non-visual but real rational truth is umm…hard!

The visual disturbances aspect is one thing but the emotion they stirs up is intense. I know it’s not real but I feel just as if it were. And I don’t want to feel maggots, scarab beetles or any other death cult shit.

Eventually, by using music, family support, low lighting, and pretending the walls weren’t there and/or out to kill me, I managed a fitful sleep. I am fortunate to have had hallucinations before and am conscious of how to find a zone where I don’t deny they are happening, but also know they can’t hurt me. It doesn’t make them any less frightening, and mine are fairly simple… always with the maggots. Having a support system helps, my family know this can happen and is gentle with me when it occurs.

The next day was slightly easier and it was only happening in my peripheral vision, more easily ignored. I also was feeling less feverish. It is entirely possible I had a low-grade infection but Parkinson’s always has to be extra dramatic, take something simple and make it an utter shitshow.

Anyway, I am always interested in your experiences with these exciting symptoms…drop me a message or comment below :)

Here is some extra reading on Hallucinations in Parkinson's. (Mine aren’t because of medication.)

with love

E xxx

P.S. On a more normal note, I was a guest on the podcast Parky Conversations with the brilliant Andi Brown…you can listen here.