I am Lucky to be Me

Diagnosed at 49

When you are healthy, take care to eat the proper foods, avoid unhealthy habits, work out 5 times a week to keep your weight down and your body in control, the last thing expected is a diagnosis of a disease thought of as a disease that older people are diagnosed with. I was 49 years old and looking forward to a new stage in life, tuition free paychecks, a career I loved, travel, grandchildren and more time to enjoy life. The 90's had been the best of times and the worst of times: our oldest daughter had married, my Dad died less than six months after the wedding, I completed my graduate work and received my Master's Degree, graduating first in my class while teaching full time and putting the last of our four children through college. We became grandparents of two beautiful children, a granddaughter first and then a grandson. My sisters and I realized something was wrong with our Mother. She was diagnosed with Alzheimer's disease.

In 1998 my husband, Fred and I quietly celebrated 33 years of marriage. While walking on the beach with long time friends, Fred commented on my walking, bent forward like an old person and not swinging my right arm. I asked that he stop being so critical and walked away in tears. My friend, Susan, caught up with me and suggested I listen to Fred. She agreed with his remarks and I promised I would look into it. But I didn't. Although I was always exhausted and not sleeping well I did not want to admit anything was wrong.

In October Fred and I flew to California to my nephew's wedding. Our younger daughter, an Occupational Therapist, had moved to the Lake Tahoe area earlier that year. She and her boyfriend had driven down to Palm Springs for the wedding. It was a perfect day in southern California. I was dancing with my husband on an outdoor dance floor in the sunshine, surrounded by desert, mountains, family and friends, celebrating a wonderful event. My daughter tapped on her Dad's shoulder and asked to dance. I moved to the sidelines and sat watching them dancing and talking. They approached me seriously and my daughter's words will be forever remembered. “Mom, will you do me a favor? When you return to Boston, please call a neurologist and make an appointment. Something is wrong."

Those words of request changed my life although it wasn't until six months later that a diagnosis was finally made. First it was thought that I had experienced a stroke. Then MS, ALS and a brain tumor were ruled out. As more diseases were eliminated Fred and I had determined that I had Parkinson's disease but it wasn't until St. Patrick's Day that my neurologist reluctantly told me his diagnosis. I had an early morning appointment at 7:00am. Before the alarm woke me, the phone rang. It was a snow day and school had been cancelled. I was infuriated that I still had to get up and leave the house for a doctor's appointment.

I remember being angry, then crying and then telling my doctor that I was going for a second opinion. I recall his words, “Maureen, if one could choose the neurological disease to have, Parkinson’s would be my choice." I rudely answered, "But you don't have to make that choice."

Fred and I thought we were prepared but in fact we knew very little about this disease. I was determined to keep it a secret. For three long years I suffered silently and together we studied everything we could find about PD. When I finally was able to talk openly about Parkinson's my entire life changed. Friends, family, coworkers and strangers surrounded me with love and understanding. I made a promise to dedicate my life to working with people with Parkinson's, with families and caregivers and to spread knowledge and information to those less informed and to advocate for those who needed assistance.

I have lived with PD for over 14 years and I have not allowed this disease to overtake my life. I continue to work out in the gym daily. I have not discontinued doing anything that I have always enjoyed doing, hiking, biking, and swimming. In fact I have learned to play golf, hitting the ball straight and solid but not extremely long. I now cross country ski as well as downhill and I kayak the rivers, estuaries, lakes, ponds and the ocean around New England. The greatest difficulty has been concentrating on and completing tasks but I keep on working at this. My attitude is positive and upbeat and every day I am grateful for the things I can do. I look at other people with difficulties and illness and I realize how lucky I am to be me. I am loved and surrounded by family and friends who care deeply about me, my safety and who help me be successful.