Hello lovelies, I thought I’d try a new thing today. A mini podcast/audio thingy.
“Somedays I wish I was a unicorn and could stab people with my head…”
If you enjoyed this nonsense you can always buy me a glass of wine 🍷
Here are the links to the stuff I mention:
Andi’s blog post about pain.
Jessica Krauser’s podcast where she talks about new pain symptoms
Later edit Here’s the transcript:
Hello and welcome to who stole my dopamine? Where I, Emma, witter on about living with Parkinsons and coping with a normal life, not ever having enough wine and resisting the urge to choke my kids. Oh did I mention it’s bloody half term here??? It feel like the kids never go to school or even have a full week…blerugh. Somedays I wish I was a unicorn and could stab people with my head….
Anyway I thought I’d follow some good advice today. I know I am as shocked as you are! We all know that pwp can have vocal problems and we should be doing exercises (I mean seriously… more bloody exercising doe sit ever stop???) ahem…to strengthen vocal chords and all the good stuff, right? Yeah so mostly singing is suggested which is why I am going to present this is musical form…..ahhhhhh
OK I’m not that cruel. I think my singing was once described as ‘please don’t. If I sang this you’d be running for the hills…and maybe screaming. Hey! Now that would be an excellent parky work out…only the best for my darling readers.
So I shan’t be singing. but I figured chatting isn’t too bad?
Bit of a disclosure I ermm didn’t actually do this for the benefit of my voice, I’m in pain so typing and sitting too much for this body. I am also recording the as dictating with my swearing and accent results in so many mistakes that it sort of defeats the purpose of making life easier!
It’s been a WEEK! Imagine that in big capitals. I woke up after having dreamt I’d broken my wrist…like proper bones sticking out…the whole caboodle. My dystonia in full rock and roll mode that the pain woke me. To be honest it’s still so sore not unlike when I broke it a few years back. OK so. That was fun.
Then the next night I dreamt both wrists were being knawd on by giant spiders with appropriately giant fangs….again I woke with my hands so tightly bunched with the dystonia. I want to point out I am one of those odd folks who actually likes spiders so who teh hell knows why that seeped into my subconscious!!
Then I was out shopping and my left leg near as collapsed under weakness, ridigity and extreme dystonic pain…I seriously wasn’t sure I was going to get home…thankfully I had my daughters with me so I had to be brave and not break down in a sobbing mess.
These are quite new levels of fresh pain and in new places…I am wrung out dearests.wrung out.
However I am not alone. Andi’s blog landed in my email and she talks about a strange phantom pain which stems from pressure on the nerve, which sends an abnormal signal to the brain. Which is suggested to be “a sign that the spirit realm is trying to communicate with you.”
Well I can tell you if the spirit realm is trying to communicate via broken bones & spiders it can just fuck off.
Some one directed me to the podcast ‘The secret ;life of Parkinson’s’ where in the latest episode Jessica talks about coping when a new parky pain pops up. She comments that we have forgotten about the pains that often lead to our diagnosis…we have adapted to it but to get a new pain in a new area is another mountain to climb.
It’s also a ramming home of the progressive nature of this damned disease. You know what? I’m not wild about it.
Quick break: This is brought to by the mating seagulls of Aberdeen…we live in the city centre and they nest on our flats. Currently they are at flirty matey stage its the hatchling stage that kills us…constant demands for food from fluff balls yelling at a million decibels does not make for restful days or nights. Much like my own DNA spill.
I know I should be questioning why such a sudden glob of pain and sleeplessness and extra weird dreams…I mean even for my warped pschye these have been odd.
But you know what I can’t be arsed. That isn’t fatigue talking (well it might be but) it’s more that really am sick of Parkinson’s this week. The relentlessness is boring.
I’m going to overload on lemon chicken noodle soup and curl up with a movie. At least for 5 mins until I get stuck and dystonic again…grrrrowl.
Your Parkinson’s Tarot Card of the week…yes I just created a fictional tarot deck about Parkinson’s…
The Fool or Mr Parky - Our hero. First steps, new journey, hasty choices: Less spring in your step more a stumbling shamble. You are bound to make plenty of mistakes on your new journey but your shiny enthusiasm will keep you going. Be wary of difficult symptoms ahead.
With love until next time…
So lovely to hear your voice again!
If I could wave a magic wand... *hugs"
So sorry it’s been such a rough week ... and those dreams sound horrible. I hope tucking up that yummy soup and a movie helps to put Mr P in his place. Great to hear you ... big hugs 💖