P.R.A.G. on Awareness – 5 perspectives.

April is PD awareness month and in P.R.A.G. we have been talking about what that means. We want to present our perspectives in this joint blog post.

Sara Riggare

I used to think that all types of awareness of PD were worthwhile. How can it not be? Surely more knowledge about the impact of this frustrating disease has to be a good thing? In the age of “fake news” and banning of words like “evidence based” and “science based” I’m not so sure anymore. What does “PD awareness” even mean? Who should be aware of PD and which aspects of PD should they be aware of? I think there is a difference between collective and individual awareness. Collective awareness in this case could mean that a collective of people are made aware of the collective impact of PD. But which collective of people and which aspects of PD.

 

Ben Stecher

Awareness for the sake of awareness. The poster-child of such campaigns was the ALS bucket challenge, which, to be fair, did raise a lot of money, but for a disease that still nobody knows anything about. 99% or more probably can’t even tell you what the acronym stands for and now associate the letters more with an icy bucket of water than a crippling disease. Money is needed, but while we’re at it, why not spread a little education and understanding over hollow words and empty gestures? So rather than just uniting for letters, let’s imbue a little knowledge into our collective consciousness this PD day.

 

Mariette Robijn

Good grief! Knowledge? Awareness? What on earth would you want to know about the one thing you do not want to know anything about? Wouldn’t you be much better off in a collective state of ignorance? Let the doc and the scientist decide what’s in your best interest. Let the therapist tell you to embrace ‘your’ PD. And oh yes, let’s accept parkinson’s. After all, there can be no such thing as a reasonably normal life without accepting and embracing PD.
So they say.
Ha! Here’s where Parkinson’s Advocacy comes in. We will not embrace PD and we will most definitely not accept it. It would not get us anywhere. You know why monkeys are still monkeys and not human beings? Because it never crossed their monkey minds to boil their food. They accept their fate: gnawing raw leafs. Ignorant bliss. No knowledge will ever knock them out of their trees.
Back to the great PD scheme of things: I’m not so good at history, but as far as I am aware, there has never been a revolution without rebellious, single-minded people who do not for one second accept their fate (and that of 7 million others).

 

Martin Taylor

I’m not a huge fan of awareness without a purpose, especially that which is meant, unintentionally or otherwise, to induce pity from those being made aware. For me awareness has to have a purpose, which is what our Parkinson’s Research Advocacy Group (P.R.A.G.) has, to create awareness of issues surrounding PD research so as to help the patient community shape it’s direction. There is sadly a great deal of ignorance on both sides of the patient and research communities about one another. Purposeful awareness in this space is to help bridge that gap by encouraging greater interaction and participation between both communities. I believe that only by working more closely together, that there’s a chance that Parkinson’s disease can be better understood and treated in a timeframe relevant to our conditions. Ultimately better understanding and treatment of neurological illness would be of benefit not just to the PD community but wider society at large.

 

Karen Raphael 

More than a couple of things come to mind, when I think of “PD Awareness.”  Some people think they know what PD ‘looks like.’ They think of MJ Fox’s dyskinesias or Muhammed Ali’s masked facial expression. Neither Fox’s or Ali’s PD look anything like mine. I don’t have dyskinesias or altered facial expression. Maybe I never will. To me, a key aspect in raising PD Awareness is for People with Parkinson’s (PwP) to COME OUT to those with whom we feel safe and tell them, “This is what PD looks like and feels like in me. This is what I experience.” I don’t expect that a newly diagnosed PwP will find this comfortable, but confidence and ability to disclose may grow over time. Depending on how you COME OUT, you can inspire others to ask questions rather than inspire pity. You, the PwP, become the educator.  That education is based on one’s own experience but also, at least in part, on research. By identifying as a PwP, you can become part of a larger movement that can Shake, Rattle and Roll the PD Research and Knowledge Tree.

It still amazes me to learn how many people who consider themselves highly educated think that Fox’s dyskinesias represent the prototypic PD tremor. Such broad misunderstanding of cardinal symptoms of PD such as resting tremor, bradykinesia, and rigidity leads to delay in diagnosis and treatment. Earlier diagnosis will lead to earlier evidence-based care and improved function. It will lead to earlier participation of PwP in clinical trials. The younger and more mobile that one is, the more likely it will be that the recently diagnosed PwP can engage in the only neuroprotective intervention identified clearly in research to date: prolonged endurance exercise.

The other key aspect of “PD Awareness” to which my colleagues have referred is specific “Parkinson’s Research” Awareness. How does the PwP make sense of all the claims of cures appearing on the web? How about the role of nutrition and diet? What’s the evidence and how do we make sense of it? What’s missing (but what’s partly right) if we rely largely on our own experience? An important part of PD Research Awareness is knowing that most PD specialists cannot keep on top of the current research, if they practice full-time. They don’t have time to digest and synthesize newest research findings. They can’t consider how findings might affect how they care for individual PwP. This is one area where P.R.A.G. can play a major role, by helping to translate the research literature in a patient-relevant way, so that PwP can spread the wealth of findings to other PwP and even –for those who are comfortable challenging authority– to their clinician. P.R.A.G. can work to foster patient-relevant research studies, where studies are better designed to answer questions that directly guide clinical decision-making.  

Wherever it goes, it starts with PD awareness.

Team P.R.A.G.

We are an international group of 8 people, connected by Parkinson’s Disease, aiming to influence the Parkinson’s Disease research agenda through research advocacy. We have been working together as a team for nearly a year. Each of us brings significant experience, activism and stamina to the advocacy table. Our group, as well as our readers on social media, is bound together by the urgent need of over 6 million people of a future without the ever increasing burden of Parkinson’s Disease.

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