Early Onset Parkinson's
I was diagnosed with Parkinson's at the age of 46.
I always felt that I was a little different from childhood on. I was an attractive little girl, but had very low self-esteem and poor posture. My aunt was always telling me to "Stand up straight." I tended to hang out with kids that were different. I always felt stupid and scored low on achievement tests. Both my sister and brother scored extremely high. What was with that? Brothers and sisters are usually only 10 IQ points different in IQ's. I had a wandering eye and got very tired while reading. I had no sense of rhythm and was embarrassed if I had to clap or keep in step with anything. My mom used to get upset with me for being too nice.
During the summer of eighth grade, everything changed. I got angry at my mom a lot and suffered from high anxiety. While my sister read at night, I would talk about my teachers. I was constantly obsessed with them. I'd think about one teacher all day long. It was a wonder my sister let me talk on like that every night while she read. She said she learned to ignore me. I did go to college and earned a degree in Spanish. At the age of 20 I took a year off of college to teach English in Spain. I met my husband, who also had low self esteem, but was smart and good looking at college. We married in 1980. In 1981 we had our son. In 1984 our daughter was born. My husband took an accounting job at a flour mill in Liberia, West Africa. They used DDT to kill insects there (I wonder if that contributed to Parkinson's?).
Odd things started happening
We spent 2 1/2 years there. I took care of my children, played golf, and entertained a lot. When we came back to the U.S.A., I found a job teaching E.S.L. part time at a community college. It was teaching adults. I loved it! I also worked at getting my teaching certificate at the graduate level. Meanwhile, I noticed odd things were happening. While doing a stair exercise class I could never raise my stair without losing my balance. While playing tennis, I couldn't go backward without falling. While walking with my husband, I would suddenly fall. I was only 34 years old. I kept telling him that something just wasn't right. I never talked to a doctor. I was always an anxious person, known as "nervous gervous" by my friend Peggy's mom. By the age of 40 my doctor, whom I adored, had me taking anti-anxiety meds.
At that time I also developed more serious constipation issues. I had alway had problems. I remember being at a pioneer girls' camp for 2 weeks when I was a fifth grader. You were supposed to draw a smiling face on the chart if you had a bowel movement. (My daughter had a good laugh over that) A friend told me that if you didn't have a bowel movement for 3 days, the nurse would give you a laxative. I put a smiling face on the chart every 3 days, but only had one bowel movement in my two weeks there.
After getting my teaching certificate, I taught high school Spanish. I loved teaching and was known to be kind of a crazy teacher. I had the kids singing, making up crazy stories which we acted out and even cooking and making piñatas. As time went by, I noticed that I was making mistakes when speaking to them in English. I would say things like "condoms" instead of condominiums. Of course the kids loved it! At home I began noticing that I couldn't pinch the skirt hangers open. I also had trouble opening cans. My mother-in-law bought me an electric can opener. My walk started to look a little crazy. In the winter, while out walking, I kept falling down. I talked to my doctor and had an MRI done of the brain. He said that the image was strange. There were a lot of white spots. He set me up to see a neurologist. The neurologist thought I should see a rheumatologist. The rheumatologist said it was neurological.
Getting a diagnosis
After seeing about 15 different doctors, finally one of them noticed I wasn't blinking. He was a movement specialist at the University of Chicago. He gave me an agonist to take a couple of times a day to see if it would help my walking. It helped right away. He then told me that I had Parkinson's. After taking the agonist, I felt much better. My hunch back posture had really improved. I was able to walk and even dance and follow a rhythm. The only problems were that I gained a whole lot of weight with the agonists and had developed an ironing, silver polishing, and shopping compulsion.
I was going through a bottle of spray starch every week! I also felt the need to shop at thrift stores several times a week. You can only imagine what my fellow faculty members were saying about me! Luckily, I didn't like going to regular mall stores. It would have caused a financial strain. As I gave presents to all of the nurses at my neurologist's office, they started wondering if something was amiss. Although my doctor said that he might wait until after his birthday to change my meds, he told me they were noticing some compulsive behavior from the agonists. He put me on Stalevo, which I had started on in a trial. It took away a lot of my compulsive behaviors and my weight went down rapidly.
Now I'm 67. As you can see, I'm having sleep issues. I still can walk for about 3 miles at a time, do yoga, read, and am addicted to garage and estate sales. Church rummage sales are my favorite! I'm even playing Bridge and remembering the number of trump cards that have been played. Unlike most people, I'm enjoying the time that Covid has been around. I feel less pressure to entertain. Right now I'm dealing with some swallowing issues, dehydration, and stomach issues. If I drink too much water, I vomit. Yet I am always bloated and look 9 months pregnant at times.
Sharing my story to help others
The reason that I started this story about my youth is that I contend that Parkinson's may start at birth for some people. Maybe we were born with too little dopamine. Has anyone else thought the same thing? If so, we need to let the experts know. I hope my story will help some of you that are struggling with a new diagnosis of Parkinson's. I love to use it as an excuse for just about everything. Oops, didn't mean to say that - it's the Parkinson's. I even started flailing my arms around a student who was misbehaving. Oops, I said, It's the Parkinson's. I feel very lucky to have early onset Parkinson's. I am happy that I can still walk, talk, and have fun with family and friends. I'm glad that I don't have cancer or a more serious illness. I thank God that they figured out dopamine helps. I hope that I will continue to be able to laugh at my Parkinson's and blame it for all kinds of things.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?