PD Mama

18/06/2026

DBS ( ) vs. Ellie – 2026 update...

I need to have one of the leads replaced in my brain.

I had my original surgery in January 2024, fully removed in the June (2 years ago this week) and reinserted in November of the same year. It has not been the most straightforward experience for me, but I trust my team and have always said that I am still better with what I have than without it.

So why does it need to be done again?

That’s a good question.

My original DBS surgery was complicated for various reasons, one of which was due to having very thin skin on my scalp, which resulted in wound healing issues and, ultimately, an open head wound and low grade infection. When the system was reimplanted, suboptimal electrode placement (we’re talking millimetre precision) meant we struggled to find a programme that worked well on both sides without side effects. I now experience significant and frequent fluctuations between “on” and “off” periods requiring medication 10-12 times a day. My right side responds well to my current stimulation, but my left side (the side more affected by my symptoms) remains poorly controlled, leaving me noticeably “lopsided”, as my consultant put it.
Read full blog here - https://pdmamablog.wordpress.com/2026/06/18/dbs-deep-brain-stimulation-vs-ellie-2026-update/ ✨️

I need to have one of the leads replaced in my brain. I had my original DBS surgery in January 2024, fully removed in the June (2 years ago this week) and reinserted in November of the same year. I…

16/06/2026

Oops.
Had to laugh 🤣🤣🤣

06/06/2026

My lovely little medal for playing with the in the walking football tournament in Portishead.
It chucked down but that didn't stop us from participating and having a good time.
Thanks to these ladies for being a bloody brilliant bunch. 💜💙

22/05/2026

is a priority not a luxury
Finally starting to understand how important physio is for my
I wish it hadn't taken 13 years and an injury to allow myself to get help. The amount of pain I now live with daily isn't normal. But it's never too late to do something about it.

20/05/2026

Just wow.
I've voted for the Parkinson's UK garden. Cast your vote here - https://www.bbc.co.uk/programmes/articles/37ycygGmQRx8fFDmKyZ8ykT/the-bbc-rhs-peoples-choice-award-at-chelsea-flower-show-2026

07/05/2026

02/05/2026

I read another post that described as unlike any other and it truly is. Even baking a loaf of bread exhausts me now. I'm getting little joy out of something i would have relished not so long ago. I have to constantly re-read recipes, etc., as i don't retain info like i used to. I think my current medication regimen isn't helping but I have to wait until July to discuss this with a specific consultant. Feels a long time away. Still awaiting next steps for my so no news yet there either.
I'm also getting the sun on me slightly and occasionally, which always makes me look much better than I feel. I can sleep for hours at the moment and still feel knackered. Are you affected by fatigue?

30/04/2026

Yesterday I had my first ever fall (in public) due to . One minute I was walking, the next I felt myself hit the pavement. I managed to break my fall somehow with my hand and wasn’t badly injured (thankfully I didn't hit my head), but I was very shaken. I couldn't get up at first and sat sobbing in a heap on the pavement whilst several people walked past without so much as asking if I ok. Eventually someone checked on me and fortunately my husband was on his way to meet me.

Taking it easy today - feel pretty bruised and sore. Made a very easy recipe: wholewheat sourdough discard crackers with parmesan and herbs. They taste good even if I don't feel good. Carry on we must.