When I was stumbling around after my diagnosis, I was looking for some way to personally fight PD. I had no knowledge about the early “giants” in the Parkinson’s community who had paved a pathway for those coming later.  Who were they? Joan Samuelson, Alan Bonander, Joan Snyder, Perry Cohen, Barbara Patterson, Margaret Tuchman, Linda Herman, and many more. Like what? Some lobbied Congress for increased funding for research. Without them, we wouldn’t have the Parkinson “Centers of Excellence”.  Some joined phase one surgery clinical trials. Others tracked clinical trials for PD that were in the pipeline. There is much more. But most of their accomplishments have simply faded from our memories. {1}

At the World Parkinson Congress (WPC) Kyoto

At the WPC in Kyoto June 2019, I met a lot of Young Onset (YOPD) people with Parkinsons (PWP) there. They wanted their place, their stories to be known, and how their lives are different from the lives of ordinary PWP. It’s no great surprise that past YO advocates had a battle cry of “invisible no more” as well!  However don’t forget that many of us “really old” PWP (ROPWP) started out as YOPDs. We feel your pain. And while many of us ROPWP don’t move quickly any more (if we can move at all…), we have been through a lot.

We would like to introduce ourselves as possible resources to you. Maybe we can help with ideas, or warnings, or…? We’ve got a lot of experience to share. What do you want to accomplish? How can you get there?

Ideas for starting Parkinson’s advocacy

If I were in my old boots, and I had limitless energy to start new projects (and complete them), here are things I would consider:

  • David Sangster and Anders Leines between them have created many videos and posted them on YouTube. How can the community build on that?
  • Create a website where everyone can post their web pages or blogs. Link to everything. Make this the YOPD Network (someone clever come up with a better name)
  • Find your fellow YOPDs and work together. If you find your work styles are incompatible, keep searching for people you are simpatico with. Once you find them, become a team. 
  • It is futile to try to work with the PD orgs (with rare exception like the WPC). IMHO, they have their own agendas and are usually inflexible about “outsiders” with ideas
  • It is a mistake to assume that everyone in the scientific community likes the idea of a patients being a part of the system.  Many don’t want to talk with us and don’t want us on their turf. You’ll find these dinosaurs when you least expect them.
  • And lastly, do you expect to receive compensation for the many (or any) of the hours you work in advocacy? Or for participating in a clinical trial? Good luck with that. In my experience, very few PWP who volunteer long hours and do a lot of work for others in the community receive any pay. For example, for several years, I built and maintained a website for a local PD group in my home state. I received no payment. I got to attend a single conference after much discussion. I quit the website after 3 years, and then they replaced me with a paid webmaster.  Was I stupid? Paid? No one offered to pay me. I was trying to help the cause. While they didn’t seem to value me or my work enough to compensate me, they had enough resources to pay someone else (someone who wouldn’t work for free).  I guess it’s like clinical trials, if we keep allowing the people who run clinical trials to take advantage of us, they will continue to do so until we say no more. Sometimes you have to make noise to make your point.

Speaking about clinical trials, the process seems to be getting better. More patients are giving input on trial design. However, the system still has a long way to go in fully involving patients in the process. Be sure to carefully read the fine print before you sign a clinical trial’s informed consent (IC). Many clinical trials in the US are not required to provide medical care or reparations to you if you are injured—seriously or not.

Those are my thoughts as a current ROPWP and as a former YOPD How can I help you?

{1} Blake-Krebs Barbara and Herman, Linda, “When Parkinsons’ Strikes Early”; 2001

Further recommended reading from Jon Stamford:

on the shoulders of Giants