Welcome to my blog about Young Onset Parkinson’s Disease (YOPD).
I was diagnosed with Parkinson’s Disease on 20th November 2017. I was 43 years old. I have a fantastic wife and have a gorgeous son, he was only 5 at the time.
Young Onset Parkinson’s Disease gradually revealed itself over the course of 2017, luckily for me the actual process from first referral to a neurologist to confirmed diagnosis by a movement disorder specialist took 3 months.
‘A new normal’ is explained in my first blog post. It is a common way of characterising and thinking about a life changing event or diagnosis.
I am attempting to record my progression and Parkinson’s Disease characteristics to hopefully help others and add to the data being recorded in blogs like these. If it could be harnessed I am sure it would be very useful in all sorts of ways.
The prognosis of Young Onset Parkinson’s Disease and subtypes of Parkinson’s Diseases are areas which interest me, as does the neuroscience of what happens in my and others brains.
It is natural to be wholly consumed by reading about and thinking about Parkinson’s Disease in the early days, weeks, months, first few years following a diagnosis. Hence, many of these blogs where recorded before I had been through the first couple of years with the disease! I was obsessed with trawling the internet , reading books, searching you tube, reading other blogs, and checking up on the latest research. I then moved on and got bored with it all and got on with life and living with the progression of the disease. It never goes away though, it is always going to be there and impact you in some way or another, but one does grow to accept it, despite never being able to live a single day again without a tablet to take for it. For the most part you can live with it at the back of your mind, which I would say I have been able to do pretty well for the last three years or so. However, it will periodically, be overwhelming all over again but you have to find the strength to keep fighting on and find the joy you still have all the capacity to have.
I hate thinking about other Brain diseases that are much worse and feeling like I should be grateful, of course I am! Parkinson’s Disease is far from a walk in the park, it is life changing on a slowly degenerating basis. It is the physical battle, however, that is slow to emerge. The battle in your head to cope with it changes over time too but it is much more impactful from day one! This is just my experience, of course, as I update this 5 to 6 years in post developing the physical signs of the disease.
I will add to and edit this blog when I can for as long as I can. For now I wish whoever reads this well and if you have Young Onsets Parkinson’s Disease or Parkinson’s Disease at any age I hope this blog helps in some small way.