My journey to diagnosis lasted only eight months, but those eight months were terrible. Gradually and mysteriously I was losing the strength in my muscles. I could not even speak clearly or smile. "Why do you look so sad?" someone once asked me at a moment when I actually felt quite happy. "How long Pat's face has gotten. She looks strange!" remarked a tactless friend of my grandmother's.

The period following my diagnosis seemed a triumph, for I learned the name of my condition and, more important, that I was not having neurotic symptoms. And my strength seemed restored by the Prostigmin I was given every three hours. But my myasthenia kept progressing, and it became clear that though the medicine helped, it was far from a cure. I could barely climb stairs, nor dance longer than a couple of minutes, and my face still often looked blank and my eyelids droopy. Of course, my family and I felt terribly alone.

My mother heard there was a multiple-sclerosis group in our hometown of Greenwich, Connecticut, and she joined this group, thinking that advances in multiple sclerosis might help MG. But it was very clear to us, as we came to know more about both MG and MS, that the two illnesses were not related, except that both were disabling. (It is now known that both are autoimmune disorders.)

My Disease

I said to my mother, "Why don't you start an organization for myasthenia gravis, my disease?" She had already thought of doing that, but had not known how to go about it.

Then when I was 19, my mother had to be operated on for cancer. The news after the surgery was good. Her surgeon believed he had got the small tumor in time.

Now my mother decided she must go ahead and start a myasthenia-gravis organization. She knew it had to be done, she knew that she was the one to do it, and, at that stage of her recovery, she was not certain how much time she had. My mother founded the Myasthenia Gravis Foundation by learning how to do it step by step and then simply doing it!

My mother began work, and this she did every day, sitting at the family typewriter in the study of our house. My mother typed with one finger, occasionally two. But she kept at it - all the time. And in 1952 the Myasthenia Gravis Foundation came into being.

I remember from the early days all the letters we received from patients and doctors in many parts of the United States and abroad. There were thousands of people who had been living and working in isolation, in extreme need of the Foundation as a place to exchange ideas, information, and experiences. Suddenly we were no longer alone!

Equally important for me was a trip Mother took to Massachusetts General Hospital in Boston to the MG clinic there. Mother saw many patients who had had the thymectomy operation (removal of the thymus gland), a treatment sometimes used in MG. These patients looked quite perky compared to me, as I was becoming weaker each year. Mother returned to Greenwich and reported what she'd seen, and the following summer I had a thymectomy.

That surgery was the biggest positive turning point of my life. My facial muscles improved dramatically and my speaking voice returned. The strength in my arms and legs also improved. In a sense the operation gave me back myself because now my face could express my personality. The improvement in my general strength also made it possible for me to continue in college, take a full-time job as an editor, and live on my own in New York City for many years. In 1980 I even married and moved to Michigan.

Patricia Ellsworth Wilson is a writer living in Holland, Michigan.

DISCLAIMER: All information is for educational purposes only. Contact your physician to make medical decisions

Copyright 1996. 1997 Donna Whittaker and MG Friends
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