Hello, I’m overwhelmed by all the shares and messages from last week! Thank you 🥹 Welcome to my new folks, I hope I don’t disappoint! (Performance anxiety, anyone?!). Also if you haven’t already, consider popping over to Tumbled - The internet’s only Parkinson’s rom-com. Serialised memoir. (The new season is out now!)

This week I wanted to give some time to pain. No! Not the pain of having to clean under a teenager’s bed, or that moment when you wake to realise you forgot to remove your contact lens. Parkinson’s pain.

Hearing your stories and reading widely across the web it seems that for most of us Parkinson’s folks that pain is an early symptom. Some weird mystery pain that is frequently misdiagnosed.

Shoulder pain is common and leg pain is too. Burning, pinching, stabbing and/or shooting. The whole gamut. The problem with pain is that many medical practitioners and commentators do not always consider it a symptom of PD. Assigning it to muscular aches from the rigidity we suffer, and that is part of the story…

But can someone tell me about the horrific burning!

Actually, I do have a partial answer. This discussion illuminated quite a lot for me: https://painconcern.org.uk/airing-pain-127-pain-management-taking-the-sting-out-the-tail-of-neuropathic-pain/

Realistically I’m not sure it matters about the why’s at this stage. I just want to lie-down-sit-stand-have-a-wee-walk without discomfort! So the BIG question is what works for you? Leave a comment below so I can steal all your techniques for dealing with pain.

I do get relief from red wine. But you know, I probably can’t remain inebriated all the time. I find spicy foods really work. I think that might be due to my inability to function at a temperature below 25℃. Yes, I do live in the north of Scotland where they have never had anything over -3℃. (If there was ever a better reason to emigrate to Italy - only joking, I need no excuse!)

I can function pretty well with my Parkinson’s but the pain is well, a fucking pain. If I could change only one thing…

With love

Emma xxx

P.S Slightly shorter missive this week…but if you are desperate for some more of my ramblings do pop over to Tumbled.

P.P.S For my sins, I am a Tottenham Hotspur fan…hence the punny title. Sorry.

If you love what I write consider funding my wine habit 🥹

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