Sorry to tell you this but you have Young Onset Parkinsons Disease…
So….in August last year I went for a DAT scan. Yes, i’d never heard of it before either and I still don’t know what the DAT bit stands for. What i now know is its a test to look at the level of dopamine receptor cells in the brain which involves swallowing a small amount of an iodine based radioactive material. Gulp….
The reality of the situation is that you are strapped onto a table while a machine similar to, but smaller than an MRI machine measures the amount and location of the iodine in your brain and produces images that look like cauliflowers.

To de-stress I took a stroll down Brighton seafront and soaked up some rays contemplating what was to come. Needless to say it was painless and actually quite relaxing….
Just to back track a bit, four years before i had a problem with my left shoulder and carried my left arm like a bird with a broken wing. On top of that i felt very low and tired all the time. I had one MRI scan the results of which were considered insignificant by my neurologist. It was even suggested that I might want to see a psychiatrist — I’ve always been a bit cooky but was I going mad? Did this highly trained neurologist think i was dragging my leg around because i was in training for a Zombie walk?

So… for another year i carried on, only my walking was getting worse and so was the depression. Over the next year i went back too my GP frequently saying i couldn’t move my arm and walking was by then nigh on impossible and I had frequent bouts of painful sciatica. Something wasn’t right, i felt it in my bones. It seems Parkinsons is difficult to diagnose.
So finally, the DAT scan I started with earlier in this post was booked in. The next few weeks were a bit of a daze but I genuinely felt that all would be well.
Then i got the letter in the post.
Dear Ms….Congratulations you have the best incurable neurological disease you can have. I’m confirming the results of your scan that indicate you have idiopathic, or typical, Parkinson’s disease or words to that effect.
Apparently one of the key functions of the neurotransmitter dopamine is to create feelings of pleasure that our brains associate with necessary physiological actions like eating and procreating. We are driven to perform these vital functions because our brains are conditioned to expect the dopamine rush that accompanies them.
Addictive substances including sugar, nicotine etc flood the brain with dopamine and condition us to expect artificially high levels of the neurotransmitter. Over time, the user’s brain requires more dopamine than it can naturally produce, and it becomes dependent on the drug, which never actually satisfies the need it has created. Basically when 80% of your dopamine levels have died (as is the case by the time most people are diagnosed with Parkinsons) the urge to seek reward enhancing chemicals becomes increasingly irresistable to make you feel good and happy.
So i didn’t need to see a psychiatrist but there really was something wrong with my brain. What the flip! I’m only just 50 and only old people get that i thought. How wrong i was.
It’s thought around 1 in 500 people are affected by Parkinson’s disease, which means there are an estimated 127,000 people in the UK with the condition — Parkinsons UK
When an individual is diagnosed with PD before the age of 50, its called young-onset Parkinson’s disease. diagnosis of young-onset Parkinson’s disease is the same as idiopathic, or typical, Parkinson’s disease except for the age of the patient.
Gaynor Edwards from the charity Spotlight YOPD has guesstimated that there are 6,500 people affected who are under the age of 50, but it would be a significant step forward if we could accurately estimate not only the prevalence of Parkinson’s in the population as a whole, but the number of people of working age who have the condition. www.parliament.uk

So…. I’m now a year into the diagnosis and taking pharma drugs to alleviate the symptoms but actively looking into alternative natural treatments. Its a little known fact that the movement issues like dyskinesia (involuntary movements) are caused by prescribed drugs NOT Parkinsons itself.
I feel very grateful for all the people who have gone before me and a proud member of a new ‘tribe’ I had no intention of being part of. I’ve met some incredibly inspiring people and my journey of radical self care has only just begun.
This post is the first of many posts where i’m sharing my experience to raise awareness of the disease and hopefully help others who are newly diagnosed.
