John-Vincent Crossley-Stanbury

South Yorkshire

25

Volunteer Assistant Editor

Diagnosed aged 23

Computing, cycling, model railways, DIY and socialising

Engaged, together for 7 years

Motto: You can’t do better than your best!

At 23 years old I had my youth, I owned my own business and I had my health. Life was good and had certainly been eventful. I have been through numerous operations due to a whole host of reasons, I served in the British Army as an Infantry Soldier and I had only just met my brother Dale who, unfortunately was murdered the year after. I had my up’s and down’s but I remained positive.

The only thing that really concerned me was this pesky little tremor I had. I have always had a slight tremor but my left hand started to get electric shocks and twitches. Over six years the shocks died down but the tremor and twitches decided to assume full control over my left arm.

I had an MRI Scan that didn’t show anything so I knew it wasn’t a tumor, but even if it was they would just remove it and all would be OK. This was followed by a DAT Scan, similar to an MRI but you had to have a radioactive injection: ‘Pardon, say again please, over. A Radioactive injection!’ I made a joke of it saying that I would be glowing green but eventually it was this scan that ultimately delivered my diagnosis which wasn’t so funny.

I attended the scan and my neurologist informed me that a week later I would get my results. One week later I attended and they didn’t have the results so I asked him to call me. He did. I was with a good friend, Steve when my Doctor called. “Unfortunately John, I need to tell you that we have the results back for that scan we sent you for. I need to tell you that you have a reduced uptake of the ?????????,  which indicates that you have Parkinson’s Disease. Parkinson’s Disease is a Neurological Degenerative Disease...”  After the conversation I hung up and told Steve, not really knowing what it all meant, but I knew just the same that it wasn’t good.

After two years of intense examinations, scans and tests the news of my diagnosis did not really come as an immediate shock. With the amount of time I had waited for this life-changing acumen, I was in all honesty excited that they had finally pinpointed the cause of my tremor amongst other things. Despite being pleased at the diagnosis I was still scared of my sudden new future, but I had to stay positive. I did this by increasing my knowledge of Parkinson’s Disease. It wasn’t easy -  I couldn’t find a PD sufferer in my age group and I felt alone. All the information I found about PD revolved around people over 35 years and this just made me feel even more isolated. One day, it all sunk in. The future, what would happen and will I be like that?

I pondered on this for quite a long time and then it dawned on me that, because of my age, I’m pretty special. I don’t like considering myself as special, but it helps me. I had a better chance of winning the Lottery than acquiring PD and that’s a true reflection of my luck. Nor do I consider myself as disabled, but then again ‘I’m’ not, my body is. I do have my down days when I feel depressed or anxious. I tackle this by listening to lots of music at a volume more suited for a nightclub and this tends to cheer me up. My age has a distinct disadvantage. Not many young people have PD and it is more commonly associated with the elderly. Because of this combined with my tremor I am looked at on a regular basis and distressfully there is no easy way to deal with it. When someone is staring and I get anxious I have said to people, “Don’t worry, it doesn’t bite!” The response I receive, normally a little giggle or the question, “Why are you shaking?” does put me at ease and it educates people at the same time.

Life has it’s up’s and down’s, and for some people life doesn’t relent from throwing these challenges in an attempt to trip us up. When we do fall I believe it is a reflection of our character as to what we do and I passionately believe that remaining positive is vital during any period of hardship or challenging times.

What you do is who you are!