This blog is written by me, and entirely based on my experience of living with my PD (Parkinson’s).
So 2024 was another year of making the best of things and being positive. I’d had a lovely Christmas and managed my PD symptoms well.
Then came New Year’s Eve and 2025 and it felt like I’d taken no medication at all – the drugs just weren’t working.
How does this feel?
It can feel having a cross between having flu and a hang-over – no energy or enthusiasm. Then add in a difficulty speaking and smiling, with every sentence or expression requiring a massive effort. Everyday tasks are suddenly nearly impossible due to dexterity issues and brain fog.
It’s like trying to do everything through treacle.
What makes things worse?
I don’t like moaning, so whist I don’t try to hide my visible symptoms, most days I’m concentrating on managing myself and trying to cover up how my PD is making me feel.
People moan about having colds, hang overs and upset stomachs, and whilst these are unpleasant, they will fortunately pass.
People with PD (and other degenerative conditions) know that their symptoms are always there. They’re acutely aware that this could be the best they are going to ever feel.
Friends and family tell me I should be more open about how I’m feeling, but then call us inspirations when we’re coping, and mainly avoid the subject of PD when we’re not.
For us PD is the new normal, our baseline has changed. we shouldn’t need to constantly explain this.
I don’t want sympathy, and I don’t want to talk about it all the time, I just want understanding that when someone with PD like me looks like they are coping, they are coping. They are coping to hide how we are really feeling.
I do this because I don’t want to be a bore, a burden, and I want to cling on to the person I was before PD took hold.
What helps?
When the mask drops and we haven’t the energy to cope, we need compassion, patience and understanding.
Most of all, we need to be allowed, even encouraged to remove the mask, we need ‘time off’.
After all, everyone benefits from a little holiday.
Janet Shipton
03/01/2025