received a damaged copy of the first newsletter and would like another copy, please contact Jackie. Novartis Pharmaceuticals has given us $150 towards the publication of our newsletter, with our thanks to Joe Cretella for arranging this donation. We still have other expenses; to help defray these, a basket was/will be out at every meeting for donations.
Tim Foley has almost completed our CPWG web site and the address will be available shortly. Donna Diaz and Gladys Tiedemann have been working with two SCSU graduate students on a Connecticut ADPA web site, which is also about ready.
Our meeting schedule and agenda was discussed. Meetings on Saturday afternoons were deemed suitable. Our October meeting might focus on advocacy and the political arena The Spring (April 7) meeting will be on support groups, and our guest will be Dr. Ellen Cohn, a professor of psychology at the University of New Hampshire who is doing research on this and related issues. Caregiving/partnering may also be covered. The topic for our Summer (July 7) 2001 meeting will be disability, social security, job re≠training, and programs to assist us. Our collective thanks to Brian and Sally Clark for the refreshments. The meeting concluded at 3:30 p.m. Jackie Dorwin
Some Thoughts on Care Partnership †- Nancy Oltheren
When Stan asked me to write about care giving earlier this summer I said sure. I kept putting it off, thinking about it, but never able to get a coherent picture in my mind about how I wanted the article to look.
Now I am finally putting words to paper and I still have no feeling for what I want to say on this subject, except that on any given day, my thoughts about care giving can run the gamut from "this isn't such a big deal" to "I have had it, I am sick of this disease and I just want to have a normal life". This second extreme sounds selfish, I am sure. However, I would be lying if I said I do not have days like this. This does not mean that am a bad person, but it does mean that I am a normal person, dealing with an abnormal situation~ And thus, in a few short sentences, I guess I have figured out what it is I want to say, which is this: regardless of the fact that I do not myself have Parkinson's, I still, as the care partner of someone with a chronic health condition, have days when I just am tired of dealing with it I have times, as do we all when I need someone to take care of me, someone to listen to my worries and concerns and to tell me that everything will be OK and to reassure me that whatever happens, I have the strength and smarts to find my way through this maze we call "life".
When Peter and I first met, he had not been diagnosed, but he was showing symptoms. I remember sitting across from him on our first date and watching the tremor in his fingers. Now, I could have chalked this up to his being thrilled to be in my presence, but being a realistic person, and especially being a realistic person who had a great aunt with Parkinson's, I remember thinking, "I wonder if he's got Parkinson's". Some months later, we had our answer, which was "yes". At the time, I thought, no big deal. That was 10 years ago. Now, it's a big deal. It's a big deal that Peter sometimes walks with a cane. It's a big deal that at 42, Peter is taking a medical retirement Most of our friends are hitting their professional peak, and groaning about putting in another 20 years, and we are talking retirement This is not normal Gee, I mean, our parents are supposed to be the retired ones! But I digress . . .
The point is that we are forced to re-group every so often. This disease keeps us on the straight and narrow. It makes you take stock, even when you don't want to. There are times when you feel like you have a serious lack of control for a control freak like myself, this is not good. And these are generally the time I feel ovewhelmed and thatís when I find myself saying things like, "I am tired", "I am sad", "I am confused on what to do next". Usually after some (hopefully brief period of whining and self-pity, I am generally able to remind myself of at least one of the following: - I love my husband, and while this disease may disable him, but it probably won't kill him. I need to remember that