Dear Colleagues: I am very interested in the issues that you have raised about how to communicate within the family about PD and how one is doing. Oftentimes concern on the part of the other is a combination of caring and wanting to help; offering more help than is desired. Part of this may also be embarrassment and the desire to have the person with PD "shape up" and be more socially presene. I suspect that it often is a combination of both. For me the question is whether the family can redefine the rules of communication and being with each other. In the cases mentioned, there is one or more who are more open than others. Speaking ones opinions openly can be an opening move to say, "lets do this differently." But it most often is responded to implicitly by saying,"no, I want to do things the way that we have always done; the way that I am comfortable with." Redefining the rules of doing business typically requires third party assistance. It is like dispute solving; people want their way and don't see the need for changing. This is often what family therapy is all about; helping to redefine the rules of engagement. In my experience, one has two strategies here: working within the current rules and working politically by getting subgroups to form that demand that things be done differently. They then begin to do their family business differently and try to persuade others to follow their example. Or (2) by declaring that the rules do not function to deal with this situation and calling for help in setting them up. This latter move is to bring a third party in at the very beginning. Both strategies are threatening. People feel intimidated and fearful that they are being labelled in some way, and may refuse to cooperate. Its a tough problem to get off on the right foot, and at that point it probably would be useful to get some outside consultation on how to proceed. As a person with PD, it is clear that the situation no longer can be the same after you are diagnosed. You have a label that makes you different for yourself and for your family. Thus, it would be perfectly sensible to need a way of doing business differently among each other. You are clearly are going to need help, you are going to behave differently and there is a process of everybody learning to cope in new ways. Since it is progressive, the situation will change every once in awhile, and new accommodations are necessary. The rationale is there, and can be clearly stated. But, then comes the process of gaining everyone's cooperation. If you were in an organization that needed reorganization, some part of it would have to speak the need and begin to persuade others of it. The influentials would eventually have to agree and persuade others. By talking it around, it often is possible to get enough agreement to try something new. By analogy, a family can do the same thing. The place to start is to talk about there having to be a different way, and that one wants to find it. All of this is by way of offering a word of encouragement in your desire to get things changed. There is help out there. When my wife and I found out about PD, one of our initial moves was to seek counsel from a third party, a couples psychotherapist. This was to enable us to talk openly with each other about what was going on. That has been helpful in establishing a pattern of communication between us that gave each of us permission to bring up matters that had to be talked about, and will have to be talked about in the future. This has been really hard for me since I want to protect her from having to face my changes, and often in bringing up things, I feel that it will make her feel worse. But it has been very helpful to both of us. It is not easy. It takes courage and support. Best wishes in taking initiatives. It is possible to get some help. You may need to talk around your community to see who would be the best person to become a "consultant" to you, not a therapist. One needs to feel respected and empowered in this kind of process, not made to feel weak. Some counselors can work in this way, others cannot. Be sure to shop around speaking clearly to them about what you want from them, and how you want them to work with you. One can often contract for a certain number of sessions to get things off the ground, and then go back periodically. One doesn't have to be locked into a continuing pattern of regular sessions. Good luck. Bob Newbrough ([log in to unmask])