I returned yesterday from attending (as an uninvited interloper) an advocacy training conference. This, I believe is the only real avenue for us to retake control of our own lives and move forward as adult human beings instead of patients.

This is not my first advocacy conference, but it is the first in some time. I was able to go through the kindness of a friend (whom I had met at an earlier conference.) For years, before and after my diagnosis, I avoided quite intentionally, any association with those who were further along in their progression than I. I had no interest in looking into the face of my own future.

The first time I attended a conference my world turned upside down. I was face to face with people who were physically far more impaired than I was and yet they were an inspiration. They were not hiding in closets waiting for whatever to happen, they were standing up, in public, shouting "This is what you must do." I left empowered and liberated and this past week it happened again.

Time is not always kind to us, but you cannot feel sorry for people who chart their own destiny, or people who will not be still and accept what they are told is in store for them. I am stronger from the simple act of observing them and I thank you all for that strength.

More to the point, I want to encourage all of you, who have not yet learned the sheer joy of taking up this cause and fighting instead of surrendering, to find a group of advocates, join them and reap the benefits they have to offer.

Once you do you will never feel the same about having Parkinson's Disease.

Thank you to all the advocates who have given so much already and thank you to all the new advocates who are just beginning. We are both better for you.

Newbies, take notice. The sooner you begin the sooner your life will be your own again.

Pkell, that is wonderful! I agree with you - taking up advocacy is liberating in a big way. When I was first diagnosed, I vowed that i wouldn't simply "let this disease take me." And I pretty much stumbled into advocacy.

For anyone wondering how they can get started - here are some ideas

--Visit the Parkinson's Action Network website - and sign up for its Action Alerts
--See if there is a support group in your community
--See if there is an NPF or APDA chapter nearby - consider volunteering. If you volunteer for a task that they normally pay for, that releases scarce resources to help other pwp in your community live better
--Visit the Team Fox website -- it is full of amazing people - all doing what they can to speed up the cure! You're bound to think of ways you can help out.

Good luck, Jean B

The PD Tulip is the symbol for PD awareness representing that we are ONE community, regardless of affiliation, all working for the cure.

I was at the same conference and came back exactly with the same feelings as Pam. There were people from all walks of life, each unique in their own way and with a determination to do something positive to beat PD. It is unlike any other conference i ever attended, and I dont have enough words describe my thoughts. All I can say is: Thanks to all the activists, there is a path to follow towards a cure and I believe we will reach there.

girija