 |
 |
---------- Forwarded message ---------- Date: Wed, 7 Dec 1994 08:39:07 -0800 (PST) From: Karin M Beros <[log in to unmask]> To: Barbara Patterson <[log in to unmask]> Subject: Re: Welcome Dear Barbara: Thanks for your welcome, and your note. Much of what I saw yesterday was interesting. I'm not sure what the volume will be. My own university work brings in about 25 messages a day, so I want to limit transmissions, but I do want to see and learn about the experiences of others. If the start-up material that arrived yesterday I saw a means of consolidating all messages into a single collection. I could print this single message and read it later. I'm glad if you want to send my message to others. I will not write anything in this forum that I would be unwilling for others with Parkinson experiences to see, so please use your own judgment about this. In fact, unless others know about us, they may not have anything to say that would be relevant for us. You are the best arbiter for all, because it's too easy to clutter the mail with unnecessary comment. Thanks very much for the introduction, and for the opportunity to participate. There's not much for me to add, I think, that would be useful for others, except that I believe my husband, and therefore me too, have gone beyond the depression and denial stage, and therefore live better, though the disease itself continue to progress ever so slowly. With the help of an attentive neurologist, I believe we are maximizing the benefit from the medications (should I give you a run-down on these?), but that there are always bad spots in every day. We both have a good sense of humor, and that always makes everything better. Recently my husband was invited by his neurologist to make himself available for a brief lecture and questions from students in a Master's of Public Health program associated with the UC San Francisco Medical School. We enjoyed the experience, and the questions. I was struck by the dismay, sympathy, and even horror in the eyes of these young students, mostly in their early twenties. It's hard to see ourselves as others see us. We sometimes look like a couple of drunken bums when we walk out in the evenings, because I tried to hold my husband up when he falls, and we have the picking up part down to a science. On the other hand, there are many people who understand immediately and help, not that we expect it. There is an amazing wellspring of sympathy there, except that we don't need or want the sympathy. With sympathy often comes a kind of distancing. That's the thing we don't want. But it's well intentioned, and we really DO appreciate the understanding, and when people fear the falls might be a prelude to fainting or heart attack, we explain it's just Mister Parkinson up to his old tricks. No harm in educating the public! The sad thing is that it does limit our activity, but that really isn't very important, as long as we choose carefully what we can do and do it together. Best to you, and thanks for including us. k. --------------------------------------------------------------------------- Mrs. Karin M. Beros, MSO [log in to unmask] International and Area Studies voice: (510) 642-8542 Office of the Dean, 260 Stephens Hall fax: (510) 642-9466 --------------------------------------------------------------------------- On Tue, 6 Dec 1994, Barbara Patterson wrote: > Hi, Karin: Would you like me to forward your message to the list or would > you prefer (or not) to send one on your own. I am sure you and your > husband will find the conversation on this list useful. I know I have. > Barb > ============================================================================ > Barbara Patterson [log in to unmask] > HSC 2J22 905-525-9140, ext. 22403 > School of Nursing > ============================================================================ > > >