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Dear Barbara: I don't know if any of this message would be helpful to others. It's a little more personal than I usually want to be. But if it helps anyone else, that's an outcome within the goals of the network, so here goes. 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 --------------------------------------------------------------------------- ---------- Forwarded message ---------- Date: Sat, 8 Jul 1995 09:15:47 -0700 (PDT) From: Karin M Beros <[log in to unmask]> To: MRS MARIANNE E LANDERS <[log in to unmask]> Subject: Re: Intro Dear Marianne: I am really sorry to hear your story, but glad you're on the PD network. It will help you, and ultimately your sister. Unfortunately, the debiliting effects of PD really have a depressing effect on all family members, for just the reasons you describe -- an active, interested person gradually unable to do the things he used to do, or to feel his full powers again. There really is a period of denial, but you must try to get your father away from this as soon as possible, because he's losing valuable time and energy. A good sense of humor helps, if you can muster it up. My husband was diagnosed with PD about 11 years ago, although he had been feeling increasingly weaker with a little leg tremor for perhaps three years before that. In the beginning, especially after first getting on Sinemet, we both thought he would get better and we could travel again. Well, he never did feel better, but now we understand that we won't travel again, that is until he is able to accept a wheelchair (no, he can't bring himself to that yet) as a means of getting around. My husband's denial was so bad that he wouldn't allow me to tell our three sons about his PD until two years after it was diagnosed, and then only by force, since he had had a heart attack and they were in the room when the cardiologist was taking his medical history. Of course they already knew something was wrong and were only grateful it wasn't worse. That's the key. Everything is relative. We could have lost him to the heart attack so easily. He could have had a stroke that would have left him a vegetable. This is really much better because in our case his intellectual powers are intact. That's where the humor comes from. We spent the first six years slowly withdrawing from friends, refusing to discuss our needs with family, etc. Slowly we've turned it around, and now enjoy what has to be considered a "normal" life. I'm still working. My husband is alone much of the day, but we are together for an hour and a half in the morning and then after I'm home at 6:30 or so, and we have the weekends. We see our children and grandchildren. They help us as needed, and we see our friends again, not a lot, but as much as we can handle. We're always finding ways to make our activities simpler and more satisfying. But your father must open his mind to a new way of living. If you can help him to do that, he will come around, and you will feel better about it. You must treasure all he was, all the adventures, all the strength, etc., but you must also find something to treasure now, and so must he. It helped us in a morbid kind of way to have another friend develop PD, not someone we met through a support group, but one of our circle who was diagnosed a few years after my husband. It's less isolating to have friends with whom you can discuss symptoms, treatments, physicians, modes of accommodation. I'm sorry for your situation, but you and your sister are proceeding well. Try to think of your father, and help him see himself this way, as beginning a new life, perhaps with new friends, certainly with new modes of doing things. Try to help him isolate the things he can't give up, whatever they are, and concentrate on finding means by which these things or activities can be preserved. My guess is that it's different for every family. I treasured our travels, and wanted to continue. But I have learned that my husband is still too embarrassed, too "diminished," too weary, to master those kinds of new experiences. So I respond to whatever he wants to do, and in whatever form that takes -- usually much too slowly, incidentally, for my own frame of mind, so my accommodation is a serious one. Then, I find other ways of accommodating myself so I won't be angry or too frustrated. It works for me to take a class now and then of something that interests me, to expand my own professional circle of activities slightly, and so on. Once I retire I'll probably find other means. But the bottom line is that he needs more than physical help, he also needs emotional and friendly support to find his old self within this new framework. I don't think it's easy. It took us about seven years, but we're O.K. now, and no longer anxious and depressed in what were confining modes of living. When we are out, and he falls or stumbles or freezes, I am no longer embarrassed. I've decided that if people don't know what PD is, it's time they learned. More often than not I find that people reach out a hand to help, and that they already know. Well, enough. Good luck. It really will be alright. It's good you can help your sister in the way of the network because there's a lot of interesting and useful information on the network. She's doing an heroic job to be looking after her father. You should try to think about spelling her once in a while to give her some freedom, or at least to encourage her to retain her own identity and get her personal needs satisfied somehow. As for Dad, try to make him laugh once in a while. Don't be afraid to remind him of the good old times, and demonstrate that you treasure your reminiscences of him as a younger, stronger person. It may help him in the transition to know that that part of his life is preserved in the memory of his children. Maybe he can let go of it himself enough to begin something new, and a new set of activities related to the his old life. My husband, a retired university professor, is a great tinkerer. His hands are not affected by PD (unless he's "off"), but he likes to refinish furniture, repair things, etc. These tasks are getting as never before, and I'm proud and grateful for that. Things will be better. You'll see. All best, 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 ---------------------------------------------------------------------------