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Chapter One

NOVEMBER 1978

It was November 1978, Jim had just been evaluated and the doctors' suspicions were confirmed. It was Parkinson's disease.

Parkinson's disease? What was that? It was nowhere in my consciousness. Jim had always done every benefit he was asked to do, but there was never one for Parkinson's disease. There was no telethon for it, and no pleas for donations ever came in the mail. So what was this all about?

"Parkinson's cannot be diagnosed," they told me. "Only evaluated."

What did that mean? I was filled with a sense of unreality. I couldn't believe this was happening. How often have you heard those words? I was terrified. What was I supposed to do now? How could I help? Then I became filled with dread. I was paralyzed with fear. Scared stiff. Frightened to death. These are not clichés.

This was panic.

As I began to read, and hear, and live with it, I started to understand. But the doctors could only give me so much help and advice. There was no place where I could go to learn how to cope with what was, progressively, being demanded of me. What I needed was someone who had been there and done it. Someone to lead the way. Someone to show me how to handle it. To shed a little light. These were really uncharted waters. To whom could I turn? I felt about five years old. What I really needed was a mommy, a big sister someone! But there was no one out there.

Slowly I found that I could manage. Somehow, I was beginning to swing it. I was lucky to have such great doctors, great friends, the best help in every way. How would it be if I had less? I learned through my doctors that there is readily available assistance for anyone who needs it, for almost all of the problems that will appear. But I would still have to discover how to cope by myself. And so will you.

Jimmy has been gone since July 3rd, 1989, and I am just now at the point where I have the perspective and the presence of mind to look back in a way that will be constructive, and maybe helpful. I will tell you everything as I remember it. Maybe these are some of the problems that you are experiencing or are still to encounter. My biggest challenge, and the chief contribution that I could make that his physicians could not, was how to keep Jim's spirits up and mine! How was I to retain my health and preserve my strength through all this confusion and pressure?

I got all the textbooks and talked to doctors. From what I could gather, I would have to find a whole new way of living my life. So, little by little, throughout the almost eleven years of caring for my husband, I found it. I found my own way in my own way. Although you are no doubt doing the same thing, I hope that my journey will make yours a little bit easier. You will stumble and fall, as I did, but I will try to be your candle and shed a little light for you, if at times only a tiny, flickering one.

Remember one thing: nothing I say can take the place of professional guidance. Everything of a medical nature must be discussed with your doctors. What I hope to do is to make your day-to-day living easier for you. I can now offer you what I often wished I had someone who had walked this path and had somehow made it through.

I can only tell you about my own personal experiences. I was taking care of a beloved husband. You may be caring for a parent or a wife or a daughter or a son under very different conditions. But from whatever I have to offer, take what you need, modify it if that's better for you, and perhaps let me be for you the big sister I wished for.

Jim was a public face and, yes, that did in some ways make it easier. In other ways, it was very difficult. Living a life in the public eye has never been easy. His physical changes, seen by all, added unimaginable layers to the pain. Just managing to get a little much needed privacy was the trickiest of all. On the other hand, you may have to cope with problems and dilemmas that are entirely out of my scope. We all have our own unique perspective and our shared humanity. I can only give you what I have learned.

I offer you this with hope and my very best wishes.