Parkinson’s Disease Forces Good Change

Carolyn Allen Zeiger, Ph.D.

What!?! How can the unsought, challenging life changes forced on us by PD be a good thing? For me this has at least two answers:

1. As a theologian friend said recently, “Sometimes our service to humanity is chosen, and sometimes we are drafted.” I was definitely drafted into my service to humanity via PD! The first type of service I offer is to one person: my husband. Even when it is only one person, still it is service to humanity to take on the responsibility for supporting a person through a progressive, degenerative disorder ‘til death do us part. The second is to my brother, to whom, for the first time, I am no longer one of several “little sisters,” rather, almost a big sister to whom he turns for information and support.

Parkinson’s has also pulled me into a larger form of service in the work I am doing individually, and together with my husband, in serving the community of those with PD plus their families and friends who support them.

2. Another good change is that Paul and I are bringing together our diverse training, skills and careers into an activity—and service—that we do together. Given that due to PD and financial constraints we must basically stay home and be together most of the time, this is a wonderful new way of life. It gives us something we can do together that is good for others, and therefore meaningful to both of us, and also fun.

3. OK, more than two answers. Our PD related work has also turned into yet another career for us both that is bringing us needed income as Paul’s medical expenses increase and the income from our investments decreases!

4. Doing this work together is making it possible for Paul to continue doing work he loves that he could no longer do on his own, so it is even a form of therapy for him.

5. What’s more, Paul has cared for me through some serious medical problems over the years, and it feels good to do the same for him.

6. Wow! I am now up to number 6. This one is about as fundamental as you can get. Sogyal Rinpoche, a Tibetan Buddhist teacher, has said that how well we die is closely tied to how well we learn to navigate change during our lives. This makes such sense to me. The two most fundamental changes in life are birth and death: the transition into life and then out of life. The latter is the one change that we can prepare our selves for, throughout our lives, not just at the last gasp.

At the point in our lives when we are most likely to become rigid and devoted to maintaining “things as they are,” Paul and I have been called upon to make some drastic changes in our lives, and our sense of who we are and are not. Thinking of this as training for making the Big Change in years to come, (or at any moment) has inspired me to embrace these changes as opportunities to grow, to enhance my ability to relax into change, see the opportunities for transformation and even delight. To get some “oh, boy!” out of it instead of “oh, no!” To see myself as getting desired training instead of being on a grim forced march.

Of course I don’t feel this way every day, let alone every minute. It is more like a reminder when I am feeling overwhelmed or put upon. Choose it! Embrace it! Go with it! I sat with my mother as she died, holding her hands and looking into her eyes, and that is exactly how she went out—like an athlete who had prepared for the final event—moving forward instead of resisting what ultimately cannot be resisted.

Carolyn is a licensed clinical, organizational and health psychologist. Her husband, Paul Zeiger, has become well known as a yoga teacher with PD who teaches yoga to others with PD. She is his assistant in his classes, and she also provides short term counseling for the care partners of those with Parkinson’s.

This article originally appeared in The Informant, Winter, 2009, the newsletter of the Iowa chapter of the American Parkinson’s Disease Association.