SCREAM AND SHOUT, WORKING IT OUT!

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!!

MEDICATION

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!

THE ABYSS

MY NIGHT

BROKEN