Before I had PD I was not what you would call an overly happy person, someone who walks around with a smile on his face singing don’t worry be happy, but I was okay. I’ve changed. It seems hard to believe but even though Parkinson’s is my new normal I am now more or less happy. PD has been with me seven years now and although I keep wishing it would leave, it seems to have found a home in me, settled in for the long run, and doesn’t show any sign of wanting to go away. It is more noticeable and affecting me more this year. My symptoms (tremor, fatigue, balance) are worse. It is harder to accomplish simple daily tasks (bathing and dressing), and some days are pure misery. My comfort zone and world are shrinking. I don’’t want to travel and hesitate to take even short day trips. I am less comfortable being with people who don’t have PD and more comfortable with people who do. And yet, somehow I am okay. I am getting things done, interacting with people, enjoy being alive, and even laugh and smile and have a sense of well being once in a while. We know PD is brutal but could it have helped me become a happier and more positive person?
I am involved with the PD community and know a number of people that have the disease. Even though there is no cure and they are aware that their symptoms are going to get worse they are, in general, no less happy or more depressed than people who don’t have the disease. When we get together one would think that with that much suffering and misery in the room it would be a fairly gloomy gathering but it’s not. We are happy to see each other and be together. There is a lot of laughter and joy and the sense of being part of a special community.
I really don’t know what causes some people to be happy and others not. I do know that there are four primary chemicals in the brain that effect happiness: dopamine, oxytocin, serotonin, and endorphins. You would think people with PD would be miserable due to a lack of dopamine. Instead, while not exactly bubbling over with joy, a number of people with PD have told me they have become a more positive person since getting the disease. At first I thought they were hitting the levodopa a little too hard and getting high from their meds but then I realized that I had become a slightly more positive person as well.
There is something special about people with Parkinson’s and the PD community. It is not just that we have an in common shared experience that bonds us together. Knowing that a person has PD makes them more interesting to me. I want to know everything about what the disease is doing to them and what they are doing to cope with it. An important factor in fighting PD is being part of an understanding and supportive community. 50% of PWP experience depression as a symptom but they tell me that they are usually okay when with the PD community. Those involved with the PD community seem to be doing better than those facing it alone. I could be having a bad day and when I get together with other PWP my symptoms lessen. Sharing your discomfort with others that understand it seems to lessen pain and defuse it a little. Avoid isolation. Don’t face it alone.
Writing about PD is my attempt to understand and define what is unique and special about Parkinson’s and how to cope with it. Parkinson’s changes us. Taking an active part in PD community informs and strengthens us. Why do I have a sense of well being and that I am part of a special community? Every once in a while when writing about PD or being with other PWP I’ve had glimpses and hints but haven’t found the answer yet. I will let you know when I do. Let me know if you find it first.
