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Where Emma forgets to make pancakes
Welcome to all my new subscribers 👋🏻 Thank you for my birthday wishes and I’m so glad to know that many of you prefer low-key celebrations yourselves!
As many of you know I am writing a memoir. It’s a sort of Parkinson’s rom-com. I have decided to serialise a version of it - in an email and you can read it every Tuesday. ☟
The internet’s only Parkinson’s rom-com. Serialised memoir.
Yup, it’s official, I’m crap. Missed pancake day. Even though I had retweeted it that very morning! (Thanks Matt)
Never mind, the kids forgot as well so I reckon I got away with it!
I was wondering at 3 am, as you do, why people with Parkinson’s get nightmares so badly.
Now nightmares are something I have had on and off all my life, possibly a signal that Mr P was always lurking. But they are certainly more umm…VIBRANT with Parkinson’s.
I read this quote on the sleep foundations site:
Nightmare disorder: Everyone has unpleasant dreams every now and then. Nightmare disorder is limited to those who experience recurrent, vivid dreams defined by threats to survival or security that result in fatigue, distress, reduced cognition, and other daytime impairments. Nightmare disorder is a common component of Post-Traumatic Stress Disorder (PTSD).
OK, so there’s that. But I’m not sure it explains all the ‘action’ that happens. C'mon Parky buddies, you know what I’m talking about. For those that don’t, and no! It’s not that kind of action, dirty buggers.
This is Parkinson’s Adventure Mode where you act out your nightmares - thrashing, fighting, talking occasional screaming. Much to the discomfort of your bedfellows. Apparently, it’s properly called REM behavioural disorder (RBD).
These nightmares are just another thing in the long list of stuff which needs to be accounted for in living with Parkinson’s.
Living with Mr P is like having a part-time job - on top of all your usual shit. But I suppose one of the biggest challenges is not to us as the sufferers but to the people around us. It is flippant say it’s easy for us but spending time and energy learning, advocating, experiencing this disease. But what if you are on the outside?
Our partner, children, caregivers and friends all have a bewildering array of different ‘us’s’ to deal with. One day I’m unable to climb the stairs, the next I can leap lamb like down them (sort of 😅) Some days I’m sharp as a tack, others despondent and fatigued. We just don’t know what we are going to get. And that’s where the strain impacts our relationships.
I think communication is the key. Finding new ways of being intimate, new ways of being a friend, parent, colleague. Managing expectations and generating teamwork with everyone in our lives. That might mean separate beds so you don’t punch your partner during a particularly violent dream. Or at least that’s what I tell them is happening…😂
And realising that if we want a day off from this bastarding disease, (even though we can’t have one) those around us absolutely deserve one!
Things that helped my Parkinson's this week...
Tiger balm (the red hot one)
The bravery of the Ukrainian people.
My electric blanket.
Stanley Tucci’s In Search of Italy program.