By Sara Penhale
Several years after I was diagnosed with Parkinson’s disease, I realized that my vocabulary was expanding. I was learning many new words, or discovering shades of meaning of familiar words, or finding new combinations of them. Unfortunately, most of what I was learning was negative.
The most striking and prevalent example is the combination of three words used to describe Parkinson’s. Each year, approximately 60,000 Americans are told, “You have Parkinson’s disease. It is a chronic, progressive, neurodegenerative condition.” It would be hard to come up with a combination of words that sound worse than this, but you need to learn to make these words roll off your tongue so you can tell people about your condition.
Then there is a special vocabulary to explain what is going on. Who ever heard of the words “substantia nigra” before? This is the part of the brain where dopamine is produced. Many may have heard of dopamine before and know that it refers to a neurotransmitter (you can sort of guess what this new word means) that is associated with happiness. Now you learn that in PD, there is a deficiency of dopamine because the substantia nigra cells are dying at an abnormally high rate. This leads to faulty brain activity and a host of symptoms.
This brings us to the words naming Parkinson’s symptoms: tremors, dyskinesia, dystonia, depression, apathy, micrographia, anosmia, bradykinesia, facial masking, orthostatic hypotension, and on and on. Understanding this terminology is daunting because there are so many symptoms and sometimes you can’t really understand the meaning of a word until you experience it. For instance, if you haven’t experienced apathy before, you really can’t understand the emotion of just not caring about anything, not even the fact that you’re not caring about anything.
Nonetheless, it’s critical that people with Parkinson’s learn the words that describe the symptoms they are experiencing. Many of these symptoms cannot be observed by the examining physician nor measured in precise ways. So, it’s up to the person with Parkinson’s to explain what they’re experiencing and whether the treatment is working.
The single most important word related to treating Parkinson’s is levodopa. This chemical is converted to dopamine in the body, replacing the neurotransmitter that your brain no longer can produce at optimum levels. The medication that you take is a combination of levodopa and carbidopa, a sister chemical which is added to help the levodopa get into the brain and to reduce the nausea which is one of its side effects. People often refer to this combination as Sinemet, it’s brand name – much easier to say than levodopa-carbidopa. But it’s important to know that each formulation is slightly different. This matters in the sometimes difficult process of finding the best medication for each individual.
Perhaps the saddest new slant on familiar words is the meaning of “of” and “with.” The pronouncement that you have Parkinson’s disease is often followed by the statement that you won’t die “of” it. In an attempt to soften the diagnosis, you are told that it is more likely that you will die of some other ailment that comes with normal aging, like a heart attack or cancer. Thus, you will die “with” Parkinson’s, not “of” it. To a person with Parkinson’s, there’s not much comfort in trying to differentiate between these two words. The medical profession tends to avoid this unpleasant debate by hardly addressing the topic of death at all.
So far, I have only recounted the negative words related to Parkinson’s, but positive words are also associated with disease. Often, they relate to people. First, you learn not to say that a person is suffering from Parkinson’s or that a person is a victim of the disease because this suggests that the person is powerless to intervene in the progress of the disease. Rather you use the phrase, “person with Parkinson’s” or PWP, terminology which is a more neutral. Someone who helps a PWP may be called a care partner, acknowledging the two way relationship between the people. Often you hear words related to people helping each other like sharing, supporting, or advocating. The people who help you – doctor, social worker, family, etc. – are part of your team.
Then there are words that describe attitudes that will contribute to living a satisfying life in spite of having a chronic, progressive, neurodegenerative disease. Many of these appear in the titles of Parkinson’s memoirs. Hope and perseverance rise to the top of the list of words used.
My Journey with Parkinson’s Disease: A Story of Hope and Personal Transformation by Robert Spelman
Perseverance: The Seven Skills You Need to Know to Survive, Thrive and Accomplish More than You Ever Imagined by Tim Hague
Parkinson’s Disease and Deep Brain Stimulation: A Story of Faith, Perseverance, and Hope by Brian J. Miles
Titles of three of the memoirs by Michael J. Fox, the actor and advocate whose foundation supports Parkinson’s research, add lucky and optimist to the list.
Lucky Man. A Memoir
Always Looking Up: The Adventures of an Incurable Optimist
No Time Like the Future: An Optimist Considers Mortality
Yet for many years after my diagnosis, I didn’t see any reason to be optimistic or to hope for the best. I scorned Michael J. Fox for writing a memoir titled “Lucky Man.” Over time, however, my family and friends were continuously supportive; my neurologist helped me find the most effective complement of medications; my psychiatrist, who trained in Chinese traditional medicine, encouraged me to let go of emotional blocks. I made new friends by attending support groups where we could share our experiences. Exercise and dance classes contributed to my overall well-being. I felt physically better, and my inner turmoil was being replaced by more even emotions. I was developing a sense of acceptance of my life with Parkinson’s.
A recent offhand comment by a friend of mine provided affirmation of my sense of acceptance. She remarked that I seem to deal with Parkinson’s disease with equanimity. Equanimity is a wonderful word: it’s fun to say and it connotes something positive. It went right to my heart. I felt happy that I appear to her as someone who has composure and takes Parkinson’s in stride. I don’t want to be seen as a victim suffering from Parkinson’s. My friend’s comment bolstered my own self-confidence and helped me realize that at the top of my list of Parkinson’s words are optimism and hope.