By Gary Shaughnessy
At one of our first PD Avengers calls, someone made the point that people do not really care about Parkinson’s, because there are not enough of us.
Sadly, this just is not the case. The reality is there is there are plenty of us. We are just quiet.
Across the world today there are 10 million people who have been diagnosed with Parkinson‘s. We know from our own experiences, there are many more who have the condition and do not know what it is, do not want to know yet or do not have access to the experts that would let them know.
Living with Parkinson’s
On average, each person with Parkinson’s has 4 direct family members who share the challenge and the burden of this condition – a partner, sisters, brothers, parents and children.. Each one living with the realities of a Parkinson’s diagnosis and dealing with the consequences and challenges of the disease every day. That is at least 50 million people directly affected. If you consider Parkinson’s is a life mission for countless neurologists, nurses, therapists, researchers and countless professionals the world over and factor in that Parkinson’s disease is the fastest growing neurological condition in the world, the 50 million quickly becomes 60, 70 or 80 million people impacted – each with a voice that needs to be amplified and to be heard.
We need all of your voices to join the PD Avengers.
50 million is a lot people. It’s slightly more people than the population of Spain or Argentina, almost one-and-half times the population of Canada and double the population of Australia. With 50 million voices supporting and advocating for more urgency and money to be invested into more and better treatments, to establish global standards for diagnosing, treating and living with Parkinson’s disease and for establishing new protocols for research as global forces unite to end the disease. With 50-million voices, no one would question our right to a voice.
Losing our Voice
When I was diagnosed six years ago, I immediately felt that I mattered just a little less and by coincidence my voice actually got just a little quieter every year. This is a common consequence of Parkinson’s. I have been lucky. With the support of colleagues, friends and family, I have felt my voice and my influence come back again. For many of us that just is not the case.
And it is even worse than that. Millions of people with Parkinson’s across the world do not even have the access to the medication that the rest of us take for granted. Purely because of where they were born. In the developed world, we talk about the search for a cure. In the developing world even the mainstream drug treatment, which was created before Neil Armstrong reached the moon, is unavailable to all but a few. A 2004 report by the World Health Organization found 40% of countries lacked access to levodopa. The same applies to the benefits of broader support from diagnosis and neurologists to information about how to live your best live with the disease with wellness techniques like exercise, diet, and mindfulness.
This cannot be acceptable.
It is more than 200 years since James Parkinson discovered the “shaking palsy” that now bears his name. We know very little about what causes it, but we do know that less than 10% of cases are familial, meaning to be passed down through generations of family members.
We have to be a voice for the 50 million until they too feel their voices getting louder again
Already, the PD Avengers have assembled voices from across the world to loudly advocate for the 50 million. We want to be a voice for every one of them. Not just the few. Already, we are seeing the advocates multiplying. In the first two weeks, after publicly inviting people to join the PD Avengers, we have gone from 15 members to more than 250. If we increase 16% every two months instead of every two weeks, we will reach a million voices for ahead of our goal. But to do this, each of us who took the pledge and became a PD Avenger can and must engage others. Together we will have one million advocates talking loudly and urgently by 2022.
That is one of the PD Avenger’s objectives.
One million voices by 2022 will give the PD Avengers an influential voice. We will be using that voice to advocate for urgency, awareness and more resources for research. Urgency. It’s been a major missing ingredient in Parkinson’s campaigns of the past.
Urgently, we need to address the appalling iniquities of how people with Parkinson’s are treated around the world.
Urgently, the scientific community must engage people living with Parkinsons and let us be partners in the way solutions are developed for us.
Urgently, we must take action to ban human caused triggers for Parkinson’s disease. The book Ending Parkinson’s notes that this solvent is used in washing away grease, removing spots in dry cleaning, and until the 1970’s it was used in the process to decaffeinate coffee. The four authors, Ray Dorsey MD, Todd Sherer, PhD, Michael S. Okun, MD and Bastiaan R. Bloem, MD, are the original PD Avengers and are the inspiration for our group. They cite that this pesticide is so toxic 32 countries have banned it, but that it remains in wide use in the United States and elsewhere. They also highlight a study showing incidence of Parkinson’s in farmers and other users of Paraquat as up to two-and-a-half times the level of those who didn’t use it.
Since my diagnosis, I have met many inspirational and resilient people from across the Parkinsons community. I am privileged to call many of those people my friends. Our friendships across the world and our mission to end Parkinsons is an honour to be involved with and I know that the advocates will grow. Earlier in COVID-19 lockdown, friends shared their greetings in languages from across the world to show how connected we can be. I have shared that video here as it reminded me of just how impactful a simple idea can be if we all get behind it – using our own words, but together.
Time to act
Wouldn’t it be brilliant to give 50 million people their voice? We can show that people living with Parkinsons are people with lives to live, families who love them and professionals who want them to live despite their diagnosis. We can also show that Parkinson’s is a global menace that is not just a tremor, but a long, slow, sometimes painful, always uncomfortable, degenerative disease that is expanding at an alarming rate.
Parkinson’s does not define us, our actions do. It is time to act.