After a few low-key Christmases due to bereavements and family health issues, I had no great expectations of this year, but I was looking forward to it all the same.
Over the last year or two as my Parkinson’s has progressed, I’m more aware and grateful of what I can to do. I’m happy not to over commit to social events and I’m increasingly careful to manage my meds and the consumption of alcohol to help me speak and keep moving.
Boringly I watch how much sleep I get to ensure I give myself the best chance of taking part in everything and not being a party pooper.
The build up to Christmas was good this year, with playing music, art workshops and watching football and darts featuring heavily.
I was excited to be spending this Christmas in my new home, in a good, loving relationship, and being able to share Christmas with the remaining family I’m lucky to have.
Last Christmas there was an understandably dark cloud hanging over our Christmas. It was the first one without Dad and my sister was about to have a mastectomy to treat breast cancer…
12-months later, and one of the most poignant moments of this Christmas day which was spent at my sister and brother-in-law’s (my new neighbours) was when my sister opened a present from her mother-in-law: a personalised 5-year diary. A beautifully thoughtful present!
After a brief emotional moment, and a heartfelt toast to absent friends, normal service was resumed, and board games provided the focus for family competitiveness, laughter and making of new memories.
Nothing fancy or flash this Christmas, just warmth, good food, lovely company and being grateful for what you have. Just as I believe it should be.
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.
