SCREAM AND SHOUT, WORKING IT OUT!

DBS update – 31st December 2020 versus Covid-19

Well I thought I’d better write a piece about my recovery, I had my DBS surgery on the 9th March this year, and unfortunately It’s still a work in progress, so I guess recovery is not the right word to use.

There must be many of you out there who are now going through tests to have this operation and people waiting to go in and have it done. I must say to you that I would definitely recommend it. The operation is nothing to be worried about. Because if there is any chance of you feeling better, I say go for it! I know I’m going through problems but not every body is the same. At least I can say I’m taking half the medication I was taking before.

Because of the virus, and me having to travel to Addenbrookes hospital in Cambridge from Norwich, it really hasn’t been a steady road travelled, I suppose mustn’t complain, I’ve at least had a couple of sessions where I was tweaked, and of course a phone call. Which was not really worth it ,because nothing can be accomplished over the phone.

Now we are at the end of the year, I have been waiting to have a CT Scan since June or thereabouts, because my symptoms are still there and cannot be tweaked, I’ve still got my shakes on my left side and I’m still getting dystonia and dyskinesia and pain. Apparently they want to check if my probes are in the right place.

This could mean having to have the operation again to have a third probe put in or to move the one that is already in there. I can’t say I am looking forward to this but if needs must…..

I must say I have had my moments where I have felt quite okay, but they are very few and far between. I’m still hoping and praying that they can do something for me, and I’m still smiling.

So I guess that’s it, for now. I will keep you updated of my progress. I hope that next year will be better for us all. Thank you for reading.

DBS DILEMMA

HOW EASY IS IT – ITS NOT

I wrote this poem six years ago to create some awareness of this awful disease, but I think still some people don’t understand if they don’t have this terrible disease!!

WHAT DO YOU SEE 👀

SMOKE AND MIRRORS

DBS JOURNEY SO FAR……….

This was the poem i wrote about my DBS journey, and I was blessed to have @HeKnowsSheKnows put it to music 🎶 I just thought I’d share this with you. …….

Unfortunately I am still getting my shakes down my left side and I’m still getting dystonia and dyskinesia and pain, also my walking is still affected, I get freezing moments , so I have to be careful not to fall. But I’m hoping for a better future, once I can be tweaked again so wish me luck. ….👍🙏

DBS JOURNEY

I was having a real bad time with my symptoms, I’m sure you will all agree

What with the tremors , dyskinesia and dystonia, I couldn’t be Free

I also had pain in each limb, muscle spasms in my legs , and slowness when I walk,

The dystonia I had in my neck was so bad I could even talk

I’d lost so much weight because of shaking,

This Parkinson’s I had I was hating

Then the medication I took was not working, I thought I was going to die,

A neurologist told me I had on choice, Brain surgery was the only option for me

So I had to say yes , if It would help me.,,

I was frightened I cannot lie

Brain surgery is scary , I could die

But my symptoms were that bad , I couldn’t say no,

I wasn’t living any sort of life, my life had been on hold

For so many years, I knew Parkinsons had taken its hold

So I took a deep breath and and went for the tests

To see if I would be a candidate, hoping for the best

I passed and the date was set

I would be having the surgery, by the surgeon I met

I had the surgery and I was awake and alive

I knew that it wasn’t going to be straight away that I felt well and cured , but I was alive

Because when I awoke my shaking was still there and so was everything else and more

I was given a date to be switched on, I couldn’t wait as I was suffering fo sure

It came a week earlier, better to go then, than not have gone

My symptoms were worse than before

So I had to go to get switched on that’s for sure.

He connected me and fiddled with the settings to stop me from shaking

It took a while, but finally I stopped my right hand wasn’t shaking,

Then my legs stopped , but my left hand and arm wasn’t playing the game

It was still shaking ,what a shame

But I could live with this, it was much better then before

I still have to take the medication, but I’m holding out for more

Tweaking and settings can be changed

Who knows what the future will hold , when my brain is rearranged.

I can’t tell you how hard it’s been living with Parkinson’s disease

But maybe in the the future, I might be at ease

Written by Shelley Edwards (c);

ITS NOT FUN HAVING THE SHAKES

PEOPLE WATCH AND PEOPLE STARE!

IN THE DARK, I FOUND MY LIGHT