Stories

Maureen

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.

6 Comments

Yes a family hirtosy of it increases your chances of developing it. I am 32 and I have had this stupid disease for about the past 10 years although I never knew what it was until about a year ago. I have no health insurance so I haven't been diagnosed yet, but I fit all the symptoms, have 14 of the 18 tender points, have had severe stress my entire life and several traumatic injuries that could have triggered it, and my mother was diagnosed with it (back when it was being called Fibrositis).I was actually happy to have discovered this disease because it meant I wasn't just a fat, lazy, fruitcake but then it still sucks to have it. I can't believe how much it has affected my life, I feel like a little old lady. It is still very misunderstood and most people I have told about it kind of roll their eyes at me because I'm just too young to be feeling like this, but it is becoming more known. Hopefully they will find some better medication (so far I have tried Cymbalta with not much success). Was this answer helpful?

Kamari, Jul 16, 2012

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WHAT AN AMAZING STORY AND AN AMAZING LIFE. I WAS JUST READING THE BLOG ABOUT MEMORY, AND I WAS THINKING HOW EASY IT IS TO SLIP INTO APATHY. TODAY I CELEBRATED MY 44TH BIRTHDAY AND MY YOUNGEST SISTER AND HER FAMILY CAME OVER BEARING GIFTS. EACH NEW DAY IS TRULY A GIFT AND WITH MEMORY ISSUES IT DOSES BECOME A NEW DAY. MY SISTER MADE A COMMENT, BECAUSE I DON'T CALL THAT OFTEN, EVEN THOUGH WE LIVE IN THE SAME TOWN, 'WHETHER WE HAD UPSET EACH OTHER IN A PAST LIFE?'. I HAD MENTIONED 'WE WERE PROBABLY RUNNING SO FAST IN THE BEGINNING, THAT WE RAN PAST EACH OTHER INTO THE LIGHT', AND THEN I SAID 'WITH THE PARKINSONS DISEASE AND THE FREEZING, I MAY HAVE HAD TO STOP AND REMEMBER WHAT I WAS DOING', AND SHE STATED 'THAT WAS PROBABLY WHEN I WAS RUNNING TO THE DARKNESS'....ISN'T IT AMAZING HOW BLESSED OUR LIVES ARE..I THINK ABOUT THAT WITH MY RBD AND I THANK GOD FOR THE PROPER MEDICAL AUTHORITY....

JAMES SHOWERS JR, May 12, 2013

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My Husband was diagnosed at age 52 in December...Merry Christmas!!! We have a five year old little boy and a 24 year old daughter who just got married and no family who live near us!! We found that some "friends" just walked right out of our lives when they found out Stan had PD. I wanted to scream,"it's not contagious!". He exercises almost everyday (I'm a personal trainer,ironic), he eats right, tries to get enough sleep (with child sometimes difficult), and we do fun things when we can. Our lives are not defined by his disease. He doesn't want it that way. I'm learning not to treat him like a child, invalid, fragile etc...that was hard in the beginning. It's getting easier now!!

Kristina , Jun 27, 2013

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Life is not fair. Some days are the best and some are not so wonderful but a positive attitude, involvement and exercise contribute toward making even the worst day more acceptable. I work at keeping a smile on my face, laughter close to the surface and fun on my mind. Some mornings I struggle to get out of bed, my toes separate and curl up and when I try to walk, cramps prevent me from moving. I fear I will fall and break that stiff, rigid leg. But it is never permanent and that in itself is a joyful thought. All those tasks that were once done without a thought now have become a chore. I tell my body what to do and the response is not always rapid. If I need assistance, I ask for it. I am blessed that my family and friend surround me with protection and love when I need it. Kristina and Stan, you will get better at understanding the disease, your roles, and when to intervene. The beginning stages are difficult to understand, especially when you look fine and feel exhausted or have pain. Your friends need to be educated about this degenerative, neurological disease. Those who ignore you and walk away are afraid. They don't know what to do or say so they retreat. As exhausting as a five year old can be, your little boy will keep you young. Enjoy him and his untainted outlook.
God Bless you and your family.

Maureen, Jul 25, 2013

I started experiencing symptoms at 49. Over the past 2 years, the disease has been progressing, making moving a chore at times. I am in my 31st year of teaching. My students and co-workers are understanding and helpful and I work only about 30 hours a week but wonder what the future holds. How did you decide when to cut back hours or discontinue your teaching job? I would appreciate any input you could share.

Vicky Pope, Jan 3, 2014

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My co-workers and the administration at the school where I taught were supportive from the moment I announced that I had been diagnosed with PD. Fortunately my symptoms, rigidity, extreme tiredness, disorganization and difficulty staying on task and with word retrieval, were not as obvious to others as they were to me.
As anyone who has taught school knows, the job is not easily done without enthusiasm and energy. Some days I found that the exhaustion was beyond description and yet people would either tell me to "take a nap" or say, "Oh, but you look so good." I would return home after school in tears and would ask myself how could I feel so badly and yet look so well. I felt that I was not believable. But in spite of those not so great days, I loved my work, my classroom and the families and children I worked with. I worked out at least 4 days after school and then went home more energized. I never stopped doing the things I loved to do, aerobic dancing, swimming, kayaking, hiking, downhill and cross country skiing, volunteering in the soup kitchen, scrap booking, writing and taking photos. I continued to work until I turned 60, finishing the school year in June. Originally my plan had been to work until I was 65 so I did lose 5 years. It was the right time for me. I love having time to do what I enjoy doing, although my days are full and I find little time to just relax.
Yes, I do worry about the future, especially when I have dystonia in my legs and feet, or when my legs just stop working with me. I sometimes feel as if my body is controlled by two different brains. One side works with me without any instruction and the other side feels like it is unattached to me and does what it wants to- it's out of my control. Driving or riding in the car cause pain and dis-comfort and I am afraid that I will have to discontinue driving. That loss of freedom to go and do as I please will be the greatest loss I can imagine. But all that said, I keep an upbeat attitude, a smile on my rigid face, and a sparkle in my eyes. I look for the humor in life and am grateful for my family, especially my grandchildren. They are my source of strength and encouragement and keep hope alive.
Vicky, my best advice is to keep exercising and surround yourself with positive, upbeat friends, neighbors and family. Don;t say, "I can't." say "I'll give it my best attempt." You can make a difference in your own life!

Maureen, Jan 12, 2014

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