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  • Writer's pictureEllen Bookman

Parkinson's. It's not that funny!

The original goal of this blog was to find the funny side of Parkinson’s. In getting deeper into the process, I realized that laughter is a natural stimulus that just happens. So, when there is something funny, I will let you know.

I also realized that people expect me to be funny. It came to me last night when my oldest friend in Atlanta (and not by age) said that she was ready for some funny stuff. In the same breadth, she also told me that she has read my entries twice, and she cried each time.

I promise you ….my vanilla vodka drinking goddess….it will get lighter and funnier. Eventually.

The first year was hell. My first doctor actually made the entire process even more horrifying. I stuck with her cause I am very loyal. Her effect on not only me but Lee was harsh. First red flag – no bedside manner.

I chose her like I do a lot of things – by the seat of my pants. I went online and randomly picked a doctor from the list of Emory Muscle Movement Disorder specialists. I didn’t get a referral. I was impulsive. I shouldn’t have done that.

I had my first appointment on January 29, 2018- the diagnosis. She told me to exercise, eat healthy, and told me to come back in four months . She handed me a few brochures and sent us on our way.

The Overdose.  I just wasn’t feeling right. I was having side effects of the medication. I tried to hold out the four months, but I finally broke down and called. I was told to tape when I was having leg movement.

I was given more dopamine. Then, the doctor added Mirapex. The kicker was when she told me that anxiety is not a part of Parkinson’s. Why would she say this considering everyone I know has anxiety, including me.

I was manic, angry, and actually crazier than usual. I was taking eight Sinemet a day and three Mirapex. I threw my phone at Lee for no reason. I tried to body slam him — I weigh 90 pounds. I jumped out of the car on an expressway (while pulled over) and walked two miles to a hotel where I called an uber. This was beyond anger, it was rage. Then, the weight started falling off — lost 20 lbs. in 2 months. I didn’t eat or sleep for months.

It took the trip to Colorado where I blacked out to realize that I had to get a new doctor. I have never felt so unhappy in my life. I had no idea what was happening to me, to my marriage, to my friendships, to my ability to laugh.

The “New doctor.” I   immediately asked around my boxing group, and I got a unanimous vote on Dr. Barry McCasland — yes, I am using his name. He deserves to have his name mentioned. He saved me! He welcomed me! He took care of me!

He was shocked when he saw me at my first appointment as his first words were, “In all of my years practicing, I have never seen someone so overmedicated.” My whole body was wiggling. My foot was turned in, and my eyes were bugging out of my head. So, he lowered my med dosage and ordered a DAT scan to see if I had a dopamine deficiency.

Lessons Learned.

Take the time to find the right doctor. Understand how they operate and if they are the best fit — cause Parkinson’s is a lifetime disease.

Question your doctor. You are your own best advocate. Don’t wait to change Doctors.

ANXIETY is a major Parkinson’s symptom as is depression and a million other psychological issues. Anyone who tells you different is spouting “fake news!”


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