 |
 |
Bob Dolezal wrote in part: << ... if it is a reasonable start toward forming a viable PWPC, then no other letters will be attached - PWPC, that is People With Parkinson's Congress - allying it with any organization.>> my musings about organizational politics included the personal opine that the word "Congress" may have been an unfortunate choice as the label. "Town Meeting" would carry much better vibes onto the organizing session in my opinion. The Congressman who "represents" me - does not listen to me in the least! The ineptness of that "super-committee of committees" that feeds itself while ignoring calls for sanity in reversing the concentration of wealth infuriates some of us. Money and politics is ALL they do it seems so often to me. It is unlikely that either Congress or NIH will be easily guided to follow advice from any small group. If the prime goal of the PWPC is influencing Congress to FUND THE RESEARCH, then it's deliberations will not involve much attention to guiding research. It is a real need - influencing the appropriators to actually spend the money. The time-line for that funding appropriation is hopefully the next few months. (The annual meeting rather than continuing communication using the net-list is not democratic, de-centralized, everyone can contribute, open ... which I prefer.) The time-line for attempting to learn enough to be able to competently influence the selecting of research proposals is another matter. We may do more good by trying to increase our feedback to clinical researchers; petitioning drug manufacturers to conduct some medication optimization experiments to learn the best way to use levodopa and the agonists and metabolic inhibitors for best results with least side effects. Food and digestion studies under the tutelage of nutritionists might be worthy of pursuit. Our contribution of internet availability of information might include more specific preparation of "expert programs" on the various symptoms and medications and therapies of exercising body and mind and attitude - depression treatment may be needed by more than are getting enough help in this aspect of acceptance and reinventing our life goals to live not just cope or withdraw. enough for now. best wishes to those who go to the gathering. may the force be with you. laughter is one of the best medicines. -- Ron Vetter 1936, 1984 PD dz paradise is where you make it, not a place to go e-mail: [log in to unmask] http://www.ridgecrest.ca.us/~rfvetter