DBS ANNIVERSARY – ONE YEAR

Hi , I just thought I’d share with you a few details of my year after having Deep brain Stimulation surgery,

As you know we’ve all been on lockdown and haven’t been able to do things as we should . Meaning appointments etc., so things haven’t gone as I hoped they would have. I’m sure all of you have been in the same situation.

When I first arrived home after the operation which I had on the 9th March 2020 , my symptoms were really bad, I was a lot worse than I was before the operation, I was shaking really bad on both sides and I had terrible dyskinesia and dystonia, and my pain was through the roof , I couldn’t walk so I was in a real state. But I was informed that when I got switched on all would change.

So after a few weeks we went for my switch on , I was really hoping that I would get my life back, to be able to cook and to be able to my photography, unfortunately that wasn’t to be, he had managed to calm my right side, but my left was not playing the game, it was still shaking badly. My walking had improved to an extent. I wasn’t doing that shuffle.

So after leaving Addenbrookes Cambridge, I thought maybe next time I go he could maybe get my left side calmer.

I went again for a further two times for tweaking and unfortunately he couldn’t fix my left side. So there was talk of going for a CT scan to see if my probes are in the right place. But because of COVID that hasn’t been possible yet. I’ve now had two telephone conversations with my neurologist three months apart and the next step is that I will be going to Addenbrookes Cambridge in April to see my surgeon and neurologist to have another tweak and if that doesn’t work, then I presume they will be discussing what to do next .

I would like to say at this point in my journey, I would definitely have the operation if I was offered it, because there are so many people that it has helped, I know I have been unfortunate to have had this not happen for me. But I’m still hoping that they can make me feel better….. I’m still smiling and hoping for the best 😊

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);

MY KIND OF THERAPY

MY KIND OF THERAPY – OPENING UP AND LETTING IT OUT 

I can’t believe that it’s three years ago I started to share my deepest thoughts and feelings through poetry on this blog. First of all , I must say a big Thankyou to my daughter and a very special friend of mine for giving me the confidence and pushing me to share. I have and always will be, still very nervous and shy when I post. But I can say that now due to you, the lovely people, who have liked & commented on my poetry, you have made me feel that my poetry is not just helping me but helping you too. Thank you my friends.

As I share my thoughts and feelings through my blog, I have realised how much this has helped me. I look at it as my own personal therapy session, where I invite people to stop by and maybe join in with my therapy. It’s been so lovely to find all you beautiful souls out there, who are experiencing and feeling the same as I. It’s so good to know that we are not alone in our journey. That we can help each other through the times we need someone to be there.

I was thinking whatever did I do before the blog? Was I not coping? How was I sharing my feelings? 

I went back many years, to when I was first diagnosed with Charcot Marie tooth disease & I was suffering with chronic pain. My family was young then, I tried very hard to keep my feelings to myself. I was always there for anyone who needed a shoulder to cry on, or an ear to listen. I think, that was what helped me , while I was helping someone else, I wasn’t thinking about what was going on with me. Although looking back I probably was lying to myself and my family. I did go through a very bad stage. I suppose you could say I was hiding from the world. Not caring or looking after myself. When I think back now, I must have been going through a depression. This lasted quite a few years. I could have lost my way. Luckily I came through it. I won’t go into detail. Because that’s another story. Also when I was diagnosed, the neurologist told me to go live my life and get on with it. This is what I did. I can honestly say I never really complained or shared what I was going through for a very long time. 

As the years went by, my condition obviously progressed. My pain got worse. I had a life threatening moment, when I had to go into hospital. Then when I was 50 I was diagnosed with Parkinson’s disease after many years of me hiding my symptoms, coping the best way I knew how. thinking it was obviously something to do with my Charcot Marie tooth disease. I think , all of a sudden, I finally woke up and realised that I actually might need some help.

I was quite naive concerning social media etc. But thanks to my daughter helping me, I joined a Parkinson’s forum on FB , and the rest is history. I became friends with a wonderful lady who helped me through my first year and we are still friends today. We have never met, but we have spoken through FaceTime. I know she will always be there for me, as I’m always here for her. 

 I now belong to quite a few forums, talk to many people all over the world. I suppose you could say it’s become a big part of my life. I’m really grateful to be a part of such a large family of people living with Parkinson’s and many other conditions too. I would like to say that I think people with Parkinson’s are the most talented, gifted and caring people in the world. 

Thank you for being there for the last three years, hopefully we can carry on this journey together for many years to come. Hoping that one day someone will find a cure for us all

Written by Shelley Edwards (c)