By Lorraine Wilson
I seriously doubt that anyone would raise their hand if asked, “Who wants to be diagnosed with a chronic disease?” So, while we don’t have an option regarding such a diagnosis, we typically do have options regarding our response. Our physical, mental, social and emotional health will depend on that response. I will share bits of my story with the hope you find encouragement for yours.
My chronic disease journey began around 2009 when I met with my family physician to treat a sinus infection and took the opportunity at that office visit to ask him about tremors that had commandeered my left ring finger. I would watch my finger with amazement because I was not making it move; it was doing it all by itself and I remember what an odd feeling that was. He said it could be essential tremor or it might be nothing at all. We took a wait-and-see attitude.
Over the next several years, what started as one dancing finger progressed to a song-leading hand and then a bass-beat periodic twitching in my upper arm. My big toe chimed in and then occasionally my foot, and it was all on my left side. No movements were constant, my hand was still the most evident, but parts of my body were in motion all day without my permission! Then my left arm stopped swinging when I walked and that was my proverbial last straw.
I went back to see my doctor in January 2017 and shared my additional symptoms. I suspected Parkinson’s and wanted to be told “no.” He didn’t say “no,” but he didn’t say “yes.” He referred me to a local neurologist whom I met two weeks later, and my fear was confirmed. Those odd movements that I had noticed during recent years, and that would not go away, led to the glum verdict, “You have Parkinson’s disease.”
I vividly remember leaving the neurologist’s office feeling shrouded in an invisible, heavyweight gray cloak. I felt forlorn and my body weary while approaching the elevator, feeling the need to escape. I may have appeared calm on the outside, but I was entertaining a riot within. Exiting the building into bright sunshine with my husband of 40 years by my side did not even begin to alleviate my negative emotions despite the fact that I love both sunshine and my husband.
Why did I feel as though my joy had been stolen? I almost laughed when the thought of ‘he-who-must-not-be-named’ in Harry Potter’s world flashed through my mind. Was this the disease-that-must-not-be-named? Was I doomed to lose both body and mind? What nerve did that doctor have telling me I had an incurable, progressive neurodegenerative disease? Come on, this was the first time I had ever met him!
I found myself considering the diagnosis in reverse order:
Disease? A disorder that produces specific signs or symptoms Check
Neurodegenerative? Deterioration, as into the death, of neurons Check
Progressive? Happening gradually, proceeding in steps Check
Incurable? Not to be cured, unable to be changed Well, crud.
As a university kinesiology professor, these terms were easy for me to understand but were hard to accept. Those four words, in that sequence had just changed the trajectory of my life, our lives. I felt a deep sadness for my husband. He didn’t bargain for this. I felt as though it was all my fault. I was ruining our retirement dreams that were to begin in just a few years. Many things raced through my mind as we walked to the car but at least there was a moment of mirth when I equated Voldemort to Parkinson’s. If only I could laugh off the disease as an unworthy antagonist.
Leaning on Others
During the days following my diagnosis, I was angry at times and I felt frightened. I didn’t want to tell anyone about my diagnosis, especially not my students. I wanted to continue teaching my lecture and physical activity courses, especially the aquatic classes, which had always been a great passion of mine. It had grown increasingly difficult to hide my shaking hands, but I hoped the students didn’t notice or didn’t care if they did. I finally told the students in my lifeguard course because I couldn’t demonstrate certain rescues as well as I had been able to in my pre-Parkinson’s days when I was stronger, and my body gave me 100% cooperation. That was a moment of humiliation combined with relief. My students, unfazed, rallied around me and performed better than ever.
Over the ensuing weeks, I shared my diagnosis with my closest friends. Inevitably each would say “I thought you had Parkinson’s but didn’t want to ask.” I was increasingly fascinated by the fact that the larger my circle of informed friends grew, the less I felt alone and stressed because I was embraced by their support. I read with interest from reliable sources about the importance of building a support network and soon realized the benefits of that wisdom.
I struggled with the idea of telling family members. Part of me was concerned about the genetic and behavioral influence of the maternal side of my family; many of my relatives have been afflicted with mental and physical health ailments. Another part of me dwelled on the fact that we don’t live near each other and might go months without communicating. It seemed like an odd cold call to dial them up out of the blue and say, “Hi! How are you? I have Parkinson’s. Just wanted you to know…” The good news is that I let them know and we dedicated ourselves to more frequent communication and visits.
Learning to Cope
So, do I accept the dark and dreary cloak of this diagnosis? Well, sort of. It is more accurate to say I’m well aware of it, tolerate it, but refuse to let it define me. I know the facts of the later stages of Parkinson’s and witnessed a dear colleague when his Parkinson’s was at its ugliest just prior to his death. In response, I wrote in my journal that I was afraid. Then I identified ways I could dispel the fear and redirect it toward defeating Parkinson’s that day.
I have learned that there are many beneficial coping mechanisms, stress management techniques, and life choices that promote mind-body wellness. For me, journaling heightens my awareness of such things; it helps me to feel both a bit of control and relief; control via facts about what is going on and relief via the release of negative emotions flowing through my hand to the pen and onto the paper. I often write about the following topics: gratitude, joy, faith, and health. Focusing on these things helps me to embed their positive nature in my mind and feel happier.
I also keep a sketch journal geared toward relaxation for those times when my mind does not want to express itself with words. Art therapy has been proven to help persons with many conditions and I will vouch for the comfort I find in sketching and playing with color. These multiple forms of expression allow me to address what matters to me so, again, it’s about options and the support these options provide as I construct a healthy response to my disease.
When it comes to mind over matter, I work to reframe or re-direct, negative thoughts into positive ones. Besides journaling, the following things have helped me to live more productively with my diagnosis: going to a support group, exercising, and working on intellectually engaging activities that challenge my brain such as crossword puzzles. Engaging in positive coping mechanisms helps to cancel out the negative thoughts such as feeling like a burden to others. I have learned to and embraced the following:
• I reach inward to enhance my ability to cope. Exercise has been huge for me and I believe in treating exercise as medicine and never skip a daily dose as long as I am able. The endorphins and other feel-good neurotransmitters released due to exercise create a sense of calm in me.
• I reach outward to encourage others. I write an unexpected, hand-written note to surprise someone, call a friend, or do someone’s shopping. I lead a local Parkinson’s support group and was fortunate to become a Davis Phinney Foundation ambassador. This allows me to encourage others through their blog, Victory Summits as well as to share their resources.
• I reach upward to enlighten my actions via faith. I find that time in spiritual endeavors bolsters hope. I attend church, pray, follow a monthly scripture writing plan and administer a social media group on joy.
Choosing a Silver Lining…or Two or Three!
Chronic diseases, like Parkinson’s, have no boundaries; they do not grant privilege to race, gender, or age. If my Parkinson’s diagnosis was my darkest moment to date, then I counter that memory with a special silver lining, my simplest joy, which has been and will always be a love of hearing and seeing moving water.
Now, when I think about the gray shroud of my diagnosis day, I am encouraged by the way I have chosen to respond on a daily basis because living with a chronic disease demands my attention every-single-day. After talking with many persons in my support group, community, and beyond, it seems I was not alone in my initial “overreaction.” They, like me, learned to reign in their initial fear and dread over time. By seeking out and acting on positive coping mechanisms, I have found not one silver lining but many!
Each person’s approach to mind-body wellness (particularly the social, emotional, mental, spiritual and physical components), may be different but be encouraged that you can, and will, find what helps you. Please use any of what has encouraged me, and if it works for you, then consider me grateful and feel free to pass it on.
Lorraine Wilson is a retired kinesiology professor and devotes a great deal of her time to working with the Davis Phinney Foundation, a nonprofit organization focused on furthering research and programs for those affected by Parkinson’s. Ms. Wilson lives in Abilene, TX.