 |
 |
Ivan, Thanks for your good wishes. I am scheduled for STN DBS on May 18 at Rush-Presbterian-St.Lukes in Chicago. Status report is that I am doing a fair amount better with decreased dystonia by decreasing my Requip to 14 mg per day. Sinemet dose is relatively stable at 6-800 mg/day. - Hence the increased activity on the list. Also if all goes well I become a grandpa for the first time today. My daughter is having a C-section this AM. And as I write this post I got a call from my son-in-law saying that it has all been pushed back an hour because my daughter drank some gater ade just before the section was supposed to start So another hour of nail-biting. Thanks ,Ivan for thinking of me. Charlie. Ivan M Suzman wrote: > Charlie, > > I think you told us you're scheduled for brain surgery this month. > Worried for you. Please keep us posted. Thinking about you, with my > fingers crossed. > > Good Luck! > > Ivan > > On Thu, 29 Apr 1999 12:53:24 -0500 "Charles T. Meyer, M.D." > <[log in to unmask]> writes: > >Mary, Margaret, Janet, Ann Barb and all, > > > >I started to write this before reading Barb and Janet's posts. I will > >comment > >on Barb's wonderful idea later > > > >Mary, I think the AIDS situation is different. First, it is a new > >disease, > >second it has several different populations that are at risk, third > >one of > >those populations is discriminated against and therefore has > >political > >organizations in place, What they had "going for them" is a > >contagious > >disease that has the potential of spreading widely in a young > >population and > >something that was a "new" puzzle to stimulate young researchers. > >Putting all > >of that together they deserved and received significant funding. > > > >I would like to thank Mary for the historical summary and the > >strengths of > >each group.. As you and Ann Rutherford pointed out multiple > >organizations is > >not necessarily bad and diversity and choice can be positive as well > >as > >harmful. but they can create confusion. Last week I got a call from > >my 87 year > >old mother confused as to what PD group to contribute to after getting > >multiple > >solicitations. 15-20 years ago- prior to my diagnosis I was on the > >Board of our > >local neighborhood association that chose to eliminate contribution to > >PD from > >our local Health Fund Drive because we didn't know who to give it > >to. > > > >From what I have heard there is much in-fighting between organizations > >and > >individuals (which certainly can happen within an organization as well > >as > >between them) which has endangered the common goal. Art Hirsch's > >anecdote > >about the whole attempt at unification was scuttled by a disagreement > >about > >letterheads demonstrates the level of pettiness and mistrust. There > >are roomers > >that staffs of important pro PD politicians were alienated and > >attempts to omit > >significant contributors from the bill signing ceremonies during the > >Udall bill > >fight. > > > >As I said before I don't question the dedication to the PD cause of > >the > >individuals/organizations involved. The charge that they don't want > >a cure > >because they will be put out of business is absurd. But I do fear that > >issues > >of territory and power (often unconsciously) interfere with the > >common mutual > >goals. > > > >Margaret- I support the work the alliance is doing. While I think it > >was as > >lost opportunity in the process of forming the Alliance to not > >actively seek > >joint sponsorship from all the PD groups rather than affiliate with > >one the > >Idea of we PWP taking over some of the priority setting and > >empowering > >ourselves in the fight against PD is great. I am definitely > >pro-alliance but > >also pro Unity. And while I don't know you personally everything I > >have heard > >about you and your contributions to the cause has been outstanding. > >Thank you > >for your leadership and contributions. > > > >Now to Barb and Janet- I think your idea about the letter is great. > >I > >question the strategic effectiveness of the letter coming from one > >organization. My guess is that it will be seen as a threat rather > >than an > >olive branch (The person who takes the initiative is perceived as > >having a step > >up on everybody else). I suggest the letter be rewritten to come from > >all of > >us (like a petition). If you agree we could make it a genuine grass > >roots > >movement. We might put it in the form of a challenge to get their acts > >together > >with the implicit assumption that anyone perceived as standing in the > >way of > >unity will alienate a lot of PWP and caregivers. > > > >What do people think? > > > >And Terry- thanks for asking such an obvious question and giving us > >the kick > >in the pants we needed to revive this issue. I look forward to > >meeting you. > > > >Charlie > > > >************************************************************************ > ****************** > > > >Charles T. Meyer, M.D. > >Middleton (Madison), Wisconsin > >[log in to unmask] > >************************************************************************ > ****************** > > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > Ivan Suzman 49/39/36 [log in to unmask] :-) > Portland, Maine land of lighthouses deg. F :-) > ******************************************************************** -- ****************************************************************************************** Charles T. Meyer, M.D. Middleton (Madison), Wisconsin [log in to unmask] ******************************************************************************************