Patient Support Meeting - Sep 2009

Prepare for Success. That was the theme of the Salt Lake City Patient Support Meeting on September 24-26. All sections of the conference focused on this main theme. We have PC, but we have the tools and the abilities to be successful. There are many things we can do to prepare for success.

About 25 PCers – including me - learned about PC – what it is and why we have it. We learned about living with pain and how to manage our pain. We heard about the research efforts going on around the world. This is always my favorite presentation at every patient meeting. I’m always moved by what is happening in PC research. This time was no different.

We learned about our mutations and how we fit in the scheme of things with other PCers. We learned how we are similar and how we are different. We were able to ask questions to a physician’s panel. We learned how to choose a health care provider and how to enhance the patient/physician relationship.

One of the things I enjoyed the most was hearing about the careers of other PCers. I am fascinated and impressed by the things people with PC have chosen to do with their lives. I was highly motivated by hearing their experiences. An expert who helps people find employment also came and spoke on the value of work and how to find meaningful employment. I hope to help my own children incorporate many of his ideas.

Of course, for me, the highlight of the patient meetings is always meeting others. People come from all places and from all walks of life. I love meeting people with different lifestyles, belief systems and personalities. I find associating with them enriches my own life.

Every time I go to a PSM, I think “This was the best PC patient meeting ever.” This time was no different. I loved the smaller group size. I felt like I got an opportunity to talk with each PCer at some point over the course of the conference.

Before this last meeting, I’ve never given much thought about the name “Patient Support Meeting”.  But this time I particularly felt the “support” in the meeting. I love my fellow PCers. I love that they understand me. I love that they don’t judge me. I love that I see PCers whom I’ve met before; they are like long lost friends. I love meeting new PCers and I feel just as connected with them. We will always be connected through the common journey we are making in this life with PC.

The last part of the patient meeting was a dinner where we all received darling cans filled with homemade caramel popcorn and labeled with the phrase, “Yes we can!”  Can we understand the whats and whys of PC?  Can we be contributing members of our families and of society?  Can we find effective treatments for PC?  Can we be successful in life as PCers? Yes, yes we can!