Tuesday, 31 March 2015


There are many types of Dystonia, I have Generalised Dystonia which effects both my arms and legs, for most of my childhood up until 12 i was mostly wheelchair bound with spasms happening everyday.

Throughout my childhood i was passed from hospital to hospital with doctors having no idea what was wrong with me, i even got accused of making it up for attention which effected my confidence and i didn't have much in the first place.

We live in a world where everyone expects everybody to be perfect but the reality is NO ONE IS PERFECT we all have problems and no one should be put down about having a condition or a disability! 

Most of my childhood doctors kept saying i had Cerebral Palsy as i walked very hunched over and with my left arm always behind my back, We first started noticing this when i was around 3 years old and started pre-school and i was starting to limp and walk different to all the other children. 

It was not until i was 11 that we found out the condition i had was actually Generalised Dystonia and i was sent to Frenchay Hospital at Bristol which is around 220 miles from where we live. It was there where a Dr Steven Gill now Professor talked to me about a fairly new operation called Deep Brain Stimulation where they open your head and insert a set of Electrodes down into your brain and then feed the wires into a box ( a bit like a pacemaker ) into your chest. At the time i was one of the youngest to have this UK major operation performed as they couldn't wait as my spine was arching over more and more. 

I remember going down to Bristol to have the operation and i was excited not one bone in my body was nervous as i knew this was the only chance i had of improving my life, I had a frame fitted in the first operation which took around 6 hours to complete then i had to wear the frame over night and that was one of the hardest nights i've ever lived, The frame is bolted onto your skull and you can feel a weight on your head all night you couldn't move your head and i struggled to even take a sip of water.
The next morning i went down for the Operation and 8 hours later i was up in recovery with stitches in my head and chest and in a lot of pain. Over the next few weeks i started to see a improvement in my movements and walking gradually got a little better then after about 9 months i was not relying on my wheelchair for the first time in my life. 

It worked so so well for the first 2 years until i needed a routine battery change and that was when things started to go wrong as the operation didn't go to plan, i was back to square one struggling to even make it out of bed some days and my back is spasm all the time. I had 7 more DBS operations down in Bristol but not much difference was made during a 5 year period. 

I demanded to Move my treatment away from Frenchay and i was put under a MR Julien Evens at Salford Royal in Manchester where he performed my last operation on the 12th October 2013. I had all the leads taken out and moved to my right side of my chest and head and i am showing signs of improvement, I still take daily medication of Clonazepan and Baclofen which helps with my shakes and Anxiety. 

The thing what helps me the most is not the drugs or the operations its my Partner Hollie, She's been absolutely fantastic since we met on the 4th January 2013. I was so nervous meeting her as i was at one of my most shakiest and unstable points of the last few years but she just did not even notice. Throughout 2013 we had a lot of hard days with my dystonia getting the better of me to the point of i had to be shaved by her and even washed by her. She's just the most amazing women to have come through all that and be still with me its amazing and i'll never forget how she got me through without a doubt one of the hardest years of my life. Even on bad days and we go out and i'm shaking or walking funny she just holds my hand and does not care who looks or stares. Since meeting Hollie i have gained so much confidence its untrue and i've found a totally different side to me which i didn't think i had. 
Hollie Wilson Thank you for everything I Will Love You Forever And Always 

I hope this Blog helps anyone who has Dystonia or knows of a person with the condition.
Any questions please feel free to comment or tweet me at @myroylelife

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