I was diagnosed with Parkinson’s disease at age 69. My life prior had been very full, challenging, and worthwhile. I grew up in a small town in New Jersey. After graduating high school, I had an opportunity to join the US Cadet Nurse Corps during WWII. I graduated from the Jersey City Medical Center School of Nursing as a registered nurse in 1948; married in 1950 and after a few years I stopped working and began raising a family. . .one boy and three girls. I was busy.
My husband had graduated from Seton Hall University and as an accountant with a lot of drive moved often up the corporate ladder. This meant quite a few moves from one state to another, renting houses, building houses, selling houses - whatever was required to keep the family running smoothly.
We finally settled in Shelton, CT and lived there for forty years. We became active in the Huntington Historical Society, making friends and helping to raise funds for moving and restoring a historic house. At the same time, we became active at the Catholic Church and schools where our children attended. Life was good. But there was an undercurrent.
We had a mentally ill daughter. Her actions caused us great stress until she was finally diagnosed as schizophrenic and, at least we knew what we were dealing with. We joined NAMI, the National Alliance for the Mentally Ill and became very active advocates for the mentally ill. (Founding Bridge House, a psychosocial rehabilitation center, in Bridgeport, CT.)
Once our youngest child went off to college and I finally had time on my hands, rather than return to nursing after so many years, I took a job in retail and worked in retail until my Parkinson’s symptoms began. The symptoms began with a slight Involuntary shaking of the hands, arms, legs, jaw or tongue. The typical Parkinson’s tremor is “pill-rolling” – it looks like holding a pill between thumb and forefinger and continuously rolling it around. Some people report an internal tremor, a shaking sensation inside the chest, abdomen or limbs that cannot be seen. Most Parkinson’s tremor is “resting tremor,” which lessens during sleep and when the body part is actively in use. on my left side. My husband had become a deacon in the church and visited nursing homes frequently.
One day he commented that I appeared to walk like the Parkinson’s patients he had seen and suggested I check with our family doctor. The doctor diagnosed it quickly. He said, “It is a degenerative disease, no cure and the medicines don’t work very well!” He sent me to a neurologist for a second opinion which was the same as his.
How could this be happening to me? I was the healthy strong one who took care of everyone else? Now, folks watched me for fear I would fall. How could this happen to me? I always lived right. I never smoked or drank. I watched my diet and exercised. I tried to do everything right? Again, how could this happen to me? There are no answers.
Eventually, I retired from my job and found an excellent neurologist at Yale who began treating me with Mirapex about five years after my diagnosis. I had resisted medication until one day when my feet seemed to stick to the floor! Fortunately the medication helped and life went on quite normally. Some years later, one of our daughters moved her family to North Carolina and encouraged us to follow. She said she would take care of us as we grew old, so we did.
The decision turned out to be an excellent one. We bought a new ranch house which is easier to care for and created a garden at the back of the property with a delightful bird sanctuary. We call it “our Camelot.”
I have now tolerated Parkinson’s disease for fifteen years and am treated at Duke University. I have reached a resignation about my symptoms, which keep changing as time moves on. I am still uncomfortable with the attention these symptoms cause, but control my feelings remembering that I cannot change other people…only myself. I try not to dwell on what others may be thinking.
I find this is an illness one can live with for a long time. The trick is keeping a positive attitude along with keeping one’s mind busy with hobbies, etc. During the past four years, I have picked up an old hobby…oil painting. I have completed about fifty paintings during that time. I give them as gifts to family and friends and the activity helps me to forget my symptoms. I also love caring for my house, reading, gardening and 1000 piece jig saw puzzles.
Mirapex and Carbidopa-levo are the two drugs that work for me. All others have been disappointing due to side effects, especially the Neupro patch which caused heavy suicidal thoughts. Parcopa quickly caused my hair to fall out. I promptly stopped taking it and my hair is finally growing back. I don’t know what will happen if I build up a tolerance to my current meds.
At this stage, I have a lot of dyskenesias and In Parkinson’s, stiffness of the arms or legs beyond what would result from normal aging or arthritis. Some people call it “tightness” in their limbs. in my back, but I keep moving and doing as much as I can. I have some trouble swallowing and loss of appetite which has led to weight loss. I have learned some swallowing techniques from a speech therapist, softened my diet and increased my calorie intake. So far, so good.
Otherwise, life is good with a loving husband and family giving me generous support. I feel as if my body is gradually going downhill, but the aging process is taking its toll too, I’m sure. I live in the moment…one day at a time.
“The longer I live, the more I realize the impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company…a church…a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past…we cannot change the fact that people will act in a certain way. We cannot change the inevitable.
The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you…we are in charge of our attitude!”
Linda Maitan & Ron Friedman--9/9/96