I've just had a week of exactly this. Spending a few days with five very dear and precious friends I couldn't stop talking about every symptom I was sitting with and found myself saying it is time I left this group of women because I do not want to inflict this upon them. We've only been meeting twice a year for 12 years! Inclusion matters but what happens when Parkinson's takes my personality and turns everything round to be all about it. Boring for me too!
Exactly. My wife, the saint, still puts up with me but needs to put up the boundary reminder at times. I guess I fascinate the physicians - but only in the office. I live near a community for disabled people, luckily. They seem to get it - though, I can't seem to feel well enough to spend much time there.
Emma - you are of course right about the general tendency but you of all people I’d say are way more than the sum of your Parkie pains….That you have kept me and so many others entertained (in my case captivated..to the extent I wanted to come up and steal you away from your man.) surely counts for something in your self appraisal?
I try so hard to engage with other people without "going on" about my symptoms, and just delivering a monologue about them. But it's hard when that's the main thing on my mind! I keep trying. I don’t always succeed, but <shrug> nobody's perfect.
My mum doesn’t have PD, but she suffers from chronic pain. And It’s difficult being the only around her 24-7. It’s not her, it’s not you, Em. It’s the blasted pain.
I've just had a week of exactly this. Spending a few days with five very dear and precious friends I couldn't stop talking about every symptom I was sitting with and found myself saying it is time I left this group of women because I do not want to inflict this upon them. We've only been meeting twice a year for 12 years! Inclusion matters but what happens when Parkinson's takes my personality and turns everything round to be all about it. Boring for me too!
Ha, yep I get so fed up thinking and talking about it!
Thank you. I'm there. I'm with you.
🥰
Exactly. My wife, the saint, still puts up with me but needs to put up the boundary reminder at times. I guess I fascinate the physicians - but only in the office. I live near a community for disabled people, luckily. They seem to get it - though, I can't seem to feel well enough to spend much time there.
Yeah this is why I write about (moan) PD here! I have a willing audience :)
Emma - you are of course right about the general tendency but you of all people I’d say are way more than the sum of your Parkie pains….That you have kept me and so many others entertained (in my case captivated..to the extent I wanted to come up and steal you away from your man.) surely counts for something in your self appraisal?
hahah! That you Nick xx
I try so hard to engage with other people without "going on" about my symptoms, and just delivering a monologue about them. But it's hard when that's the main thing on my mind! I keep trying. I don’t always succeed, but <shrug> nobody's perfect.
I don’t obsess too much, hell I have to listen to my friends “boring’ stuff hahahah
My mum doesn’t have PD, but she suffers from chronic pain. And It’s difficult being the only around her 24-7. It’s not her, it’s not you, Em. It’s the blasted pain.
HA! Great point...it's the pain. LOve to your mum. and you xx
Beautifully written Emma, and such a relief to know it’s not just me.
Typical start to my day:
Me (thinking): “Must not moan about Parkinson’s. Must not moan about Parkinson’s. Must not moan about Parkinson’s”
Wife: “Morning. How you doing?”
Me: “Haven’t slept a wink. Feet cramping. Can’t move my arms. Legs stiff. Shoulder hurts…”
“It’s like trying to have a normal conversation while someone is poking you repeatedly with a stick” is the perfect description. Thanks, Emma.
Thank you for the inspiration! So, How you doing? hahaha 🤪