 |
 |
A brief introduction: I'm 47, diagnosed 4 years ago, working still as a university administrator with the kind support of my immediate boss, but trying to pass for "normal" to my colleagues. The Young Parkinson's Support Network, particularly Alan Bonander plus this extraordinary network, have been my lifeline. There's a stage that I call the "sophomore years" in the Parkinson community. We've made it past the trauma of the diagnosis, have realized that we're not going to become instant vegetables, and are trundling along o.k. Severe on/off fluctuations haven't started, and we cling to the hope that somehow we'll never experience them. The trick is trying to make sense of how best to use this time. We're needed to speak out, to raise funds, and to lend help to others -- often those even younger than we are -- who are in serious trouble. We also have to figure out how to best maintain our own health, and to carry on with work and family obligations. Personally, "I'd rather burn out than rust out" but it's taking me a while to crank up the heat. I confess that lurking on the list has been such a pleasure and an excellent source of information that I've been neglecting the real world. Having now purged my soul to you, my trusted netfriends, I'd better end this "brief" introduction and actually DO something: I found a list on the gopher via someone in Michigan of all the phones, faxes and office addresses of the members of the U.S. Senate & House of Representatives. So far I've sent personal faxes in support of the Udall bill to all the senators who have "public" faxes. In the course of doing that, I've been able to update the original list with new fax numbers. (Now on to the House!) If anyone is interested in the Senate list, I'd be glad to send it on to you. Jon Stedman's e-mail list, already sent to all of us, is another valuable resource. Thanks to all of you for being there. Mary Yost, still sort-of "in the closet"