PD Mama

10/09/2025

My walking is pretty ropey atm, so whilst many people are walking this month to raise funds for research (many in fond memory of the late Tom Isaacs), instead I'm supporting Binfield Tennis Club with their fundraiser for on 28 September. If you can support this great cause, please follow the link below to read my 'story' and donate. Thanks so much 💙🧡

https://www.justgiving.com/page/binfieldtennischarity

28/08/2025

Since my system was reinserted in November to help my symptoms, I no longer get in my feet 🥳. I used to get this every morning until my meds kicked in. (Anyone who has experienced dystonia knows how painful it is.) I do experience a lot of dystonic posturing now, though, on a daily basis - especially when my meds are actually working (dyskinetic dystonia) as well as when I'm off. It's such a confusing condition! I don't know if it's related to or simply disease progression (12 years since dx) and I'm not sure whether the predictable daily foot dystonia was better or worse than the unpredictable and fluctuating dystonic posturing I get now. BUT I have the dates for a full (non-invasive) re-calibration of my device next month and cannot wait for this to be done 💪💙

26/08/2025

Shout out to my pal Claire Marie Jones who has been living with her diagnosis for 10 years today. Like me, she's probably had it a lot longer. Time to diagnosis needs to improve! This is one of the stipulations of the Movers and Shakers' Parky Charter. Also, we're too young for this s**t! Together, we've been diagnosed 22 years... Send help! Or plentiful pastel del nata...
Claire has been there for me at some really hard times over the past year, including when my was being switched off, after witnessing the craziness of my brain 🧠 swelling a few months prior. If you have PD, make sure you have a friend who also has the condition who just gets you. And likes the same weird (cool) stuff as you. Haha xx

21/08/2025

12 years tomorrow since my diagnosis of
I'm only 41.
We still need a cure.
We will survive. It just gets harder every day, every hour living with Parkinson’s – the world’s fastest growing neurological condition. It’s brutally unpredictable, painful, exhausting. But I’m not ready to give up just yet.

19/08/2025

While Parkinson’s shakes our boots, it won’t shake our brains 🧠⚽ If you have a fantasy football team, we have set up The Shaky Boot League — a Fantasy Football league for people with Parkinson’s and their friends and family. Fun, banter & brainpower, not football skills. 7 members and growing — join us!
Code to join - udpq29

13/08/2025

10 years between these photos. I have in both pictures 🤯 Electrodes in my brain in 2nd picture 🤯🤯
12 year dx date imminent but to be honest, it's just another day 💙

04/08/2025

After the past year, I'm sure it surprises nobody that I've been talking to a therapist.
Talking about values today and something just hit right.
I think this just explains me.
My mantra, if you like.
I'm not an optimist. I never will be.
I'm not a pessimist either.
I'm grounded in realism.
Striving for compassion.
And always, always grateful.
💙💙💙

28/07/2025

2 nights away with friends. We had every weather going and did loads, had a great time. Even swam in the sea! It was freezing!... it's not easy with kids when you have (especially as I feel like a child sometimes with the help I need) and my is not optimised so symptoms fluctuating... BUT I realised my meds had kicked in and had 20 minutes of really great ON time in the rain yesterday so climbed on this hay bale and made husband capture the moment. Not often I can lift both arms like this! F U PD! Haha xx

23/07/2025

17/07/2025

Thank you so much for signing and sharing the !
The petition surpassed 100,000 signatures last night and will be considered for debate in Parliament, which is fantastic news... but now the hard work begins to actually get the stipulations of the Movers & Shakers' Charter implemented to improve the lives of people living with
Please continue to support this cause as this is a huge milestone but there's still a lot of work ahead 💙💙💙
Photo from last night for attention as I was at walking football when this all happened - and scored a penalty! 😆😁