Parkinson's Disease - A New Beginning!

We talk a lot, Ildal and Boyle! We have Parkinson's. An incurable chronic disease that has 202 years on the back. The medicine, fantastic "Levodopa" is 52 years old and has lots of side benefits in the form of dull side effects, so when we can buy it! Often it has expired and we are wandering around Europe to buy our medicine.

Most often we agree Ildal & Boyle, we laugh, get sad, get serious with Parkinson's, about training, reading, congresses, music, movements, cycling, articles and new research and new things. When the day is over, we will not look back, we will not go that way - what's done is done. Tomorrow is another day: children, work, spouses, medicine, pee, shaking, mind, body, cycling, running, dancing, we have to move '24 / 7 'to stay alive and have it well.

There are about 10 million people worldwide affected by Parkinson's. Every day we get new articles from scientists around the world, articles on new things. Great stuff. Incredible research. Yes, for 202 years this has been going on again and again. More and more research, new projects about everything good, sometimes maybe nothing. Brilliant people who do quite a brilliant job that we appreciate so much and for which we are so grateful.

But we are overwhelmed. We live intensely every minute of every day of our lives with this worsening illness, like a slow-burning fuse. Can I walk tomorrow, can I run, what can I do? This Parkinson thing is constantly present in our time, be it a good day or a bad day. You turn and there it is! You close your eyes, and then you see it. You wake up and it says "hello". So, Ildal and Boyle talk and realise that some days we spend 3 hours reading about new, really important research that we sometimes, and many times, simply don't understand.

We don't do it anymore! So read! We have decided not to read more articles. By no means are we unhappy with research and articles, but simply because we do not understand what is written. We are both people with Parkinson's, with different symptoms. Reading all these articles will not help us in our daily lives. So we've decided to call Earth and the 10 million people with Parkinson's around the world and ask them, how are you? Do these articles, reports, congresses, meetings, Parkinson's help us? Behind all this writing, reading, talking, the big question is how do we get Parkinson's with the best QUALITY of life in our daily lives? Do we get LIFE QUALITY just by reading?

Hardly, not a stick helps it read, so it's time to change the mindset of Parkinson's disease. We cannot continue like this; we can't wait another 50 years. People living with Parkinson's need everyday help NOW. Help and education for the following 5 points

A: Medicine

B: Diet

C: Sleep

D: Exercise

E: Social interaction

What would also help are rehabilitation centres for people with Parkinson's, across Europe. Such centres should focus on combining music, expression and training to give greater impact to the actions that each of us living with Parkinson's can and must take to slow down the process of deterioration.

Of course, this is a dream, but we really mean a new beginning, so in a month we will start a project around the world where we take responsibility for ourselves and start raising money to build a rehabilitation centre across Europe.

The Parkinson community has been silent for too long. Silence = death! Let's raise our voices, let's get all our voices heard!

"The current and future burden of this debilitating disease depends on the entire Parkinson's community working together and intervening. It also includes world leaders, governments and, of course, members of the European Parliament. Please understand, this is the time we need to to change the mindset of Parkinson's because the cost of treatment will rise to a very exorbitant high level.

All the best to everyone,

Elisabeth Ildal, Denmark & Gary Boyle, Ireland

ACTIVISTS OF EUROPEAN PARKINSON

Written by:

Elisabeth Ildal, Denmark

Young Onset Parkinson's disease (YOPD)

Event manager Copenhagen International Brain Congress 2020 - "Farewell Parkinson's - Hello Life".

Parkinson's activist and campaigner for PD

Ambassador; Blogger WPC2019, Kyoto

DJ, Radio Parkinson, Denmark

Founder of Cure4Parkinson, Denmark

Parkinson's Movement, UK

Member of European YOPD Onset Group and Critical Voice at CCP, EPDA

Parkinson's Eve - Team Captain Blue Team, Unite

International Parkinson's Table Tennis Coach

Gary Boyle, Ireland

Living with Young Onset Parkinson's disease (YOPD)

Member of the Parkinson's Association Ireland

Move4Parkinson's, Ireland;

Advocate and Campaign for PD Resources;

Member of the Patient Advocacy Board.