My Self-Diagnosis: From the Inside

Five years ago…

“How could this happen to me?”

The soft, quavering voice came from an elderly man who sat on the other side of my desk at an outpatient clinic where I worked two mornings a week to ease into retirement here in Florida. He is elderly, isn’t he, I thought. I clicked the computer mouse to check his date of birth. He was 61 years old. Wait…I am 63 years old and…elderly? Elderly! How did I get to this age category?

I sighed, shook my head to clear these thoughts, and returned to my professional persona. I looked up from the computer with my most professional smile…and met the red-rimmed eyes of my patient. Oh my. He was clearly distraught, blinking back tears, and chewing his lower lip. I looked at my computer and the next question of the assessment that I was required to complete within 45 minutes for this patient’s initial evaluation.

My patient had said that his doctor diagnosed him with Parkinson's Disease, did not give him much information about the disease, and referred him for speech therapy. Now this distraught and not-so-elderly man was unable to respond to my assessment questions because he was fighting to gain control of his emotions. He was in a deep, dark place. My place, refuge, and retreat is the ocean. He lives in Florida, so perhaps he is also in the ocean, deep beneath the waves, I thought. I laid aside the assessment protocol, thought about his dark place, reached over to touch his hand, and asked, “Would you like me to talk about PD?” He nodded and held his breath until I started my typical patient educational talk about PD. He listened carefully, slowly exhaled, and nodded his head when I listed characteristic PD symptoms, especially those that involved too quiet voice, unclear speech, and swallowing difficulties. As he calmed, I withdrew my hand, leaned back to get more comfortable in the chair, and crossed my arms over my chest.  I was in full teaching mode now. After a few minutes, I stopped talking to give him some time to process.

 He looked down at his arms which were also crossed on his chest and said, "Just look at my fingers on my right hand. Look at them go!" I looked at his tremoring fingers tapping against his arm…and then… I recognized the same tapping rhythm on my arm. I looked down at my right hand ....and then... at that moment, I solved the mystery of the strange movements of my body in the past few months.

Decreased right arm swing when walking. Check.

Difficulty turning over in bed. Check.

Slow movements during some daily activities. Check.

Talking with lots of movements while asleep, reported by my husband. Check.

Right-hand tremor. Check.

I...Had…Parkinson's Disease. In my head, I said some silent, but angry words. I held my breath for about 30 seconds of extremely deep sadness, grief, stillness (except for those blasted fingers), and silence. “How could this happen to me?” said a soft quavering voice in my head. Suddenly, I felt elderly. I was weighed down by years. And that was it. I knew what I had, I knew what to expect for progression, treatment, and...the end. I thought of those angry words again and…despair. I felt alone and cold, buried under deep, dark water which was pressing me down.

 How could this happen to me? But wait. I know what I had. It was good to know. Lots of people have a time bomb ticking away inside of themselves and don't know. They don't have the warning symptoms. They don't have years of fairly good quality life to live. And so, in those 30 seconds, I went from a deep, dark place in the ocean, hovered there, and then...reached up with my arms, kicked with my legs, and swam back to the light and to the surface of the ocean where I could float on gentle waves. My happy place...my refuge…the ocean and beach.

 I blinked because somehow, I had ocean salt water in my eyes. I looked across the desk at my patient. He also had tears in his eyes. I imagined how he felt on the inside: grief, confusion, anger, devastation, desolation. I reached for his hand again, squeezed, and said, "You will have more questions and I'll help you find answers, but now our job is to complete this assessment which is needed by the doctor and your insurance company so that I can provide the speech therapy you need.” He blinked and nodded.

My many years of professional practice kicked in so that my full attention was on my patient. We completed the evaluation. I stood up and walked around the desk. I shook my patient’s hand, right hand to right hand. I held his hand just a few seconds longer and thought about floating on the warm ocean waves. His fingers began tremoring, and so did mine, as we released our grip. I looked into his eyes for a moment, smiled, and nodded my head. He turned to walk out of the office.

 And then...I returned to professional mode as I sat down to complete the evaluation report.

 Just a tiny bit of me was aware of the soft, warm waves... gently... rocking... me.

Photo: Wave made with glass and beads crafted by Catherine Ross