Those Four Words Will Change Your Life

“You have Parkinson’s Disease.”

Every person that I know who has Parkinson’s can remember the exact date they heard these words and were diagnosed. Some people are relieved to have an answer to their puzzling symptoms. Others are shocked, surprised, confused, angry, or depressed. I clung to my newfound calm acceptance of this confirmation of my self-diagnosis. The neurologist pronounced these life-changing words to my husband and me on September 20, 2018.

Three months earlier I was working at an outpatient clinic providing speech therapy to adults, including those with Parkinson’s when I had an “aha” moment. I realized that my gait, arm swing changes, and hand tremors were Parkinson’s symptoms. (To read the story about my self-diagnosis, click here.) At that moment of realization, I knew my life would change.

I was horrified at first.

How could this happen to me?

I am a speech-language pathologist and I provide therapy for people with Parkinson’s.

Was I to become a patient with Parkinson’s?

Would I require speech therapy myself?

That just seemed unacceptable. I could almost see the words written in my class notes years ago when I was a graduate student in a motor speech disorders class “Parkinson’s is a neurological disease that has no cure and is progressive.”

During the next weeks, I felt like I had a split personality. On the outside I appeared like my usual self: I got dressed, went to work, went to the grocery store, planned and prepared dinner, made phone calls to my family, made plans with my husband, and visited friends.

But on the inside? During the quiet nights, I dreamed I was screaming as huge, curling ocean waves rolled me underwater between layers of oppressive grief, terror, and misery. Abruptly, the waves disappeared. I felt incredulous as I shouted “Parkinson’s? Really? Why?” When the alarm rang the next morning, I felt like I had been fighting all night. I spent many mornings sitting on the side of the bed reviewing those nightmares. Later, I learned that acting out vivid dreams is a symptom of Parkinson’s and my husband confirmed that for the past several months, I talked, screamed, and flailed my arms while I slept.

I didn’t share my fears or worries with anyone just yet. If it were true that I had Parkinson’s, I needed to think through the changes I could expect and how this disease would affect my plans for my retirement years. I continued to act “normal” so no one would question me. My symptoms were subtle, and I was able to hide my finger tremor. Faking “normal” made me feel more normal some of the time. Logically, I knew I needed to develop a course of action to prepare to share this news with my family and friends. But emotionally? Emotionally I was grieving. (To read about the emotions experienced when she heard these same four words, click here for a post written by Betsy Vierck, a co-author of our blog.)

The experience of grief is different for each of us as we cope with loss. I was familiar with Elisabeth Kubler-Ross’ description of grief in five stages: denial, anger, bargaining, depression, and acceptance. Kubler-Ross’ stages have been modified over time but for me, they made sense. On an intellectual level, I knew that I needed to process through grief stages to acceptance and on to managing the disease. The important word is “process.” There isn’t a firm line between the stages of grief, and we don’t process them in the same order. What I have learned is that it is not a “one-and-done” kind of journey. With every new symptom or progression, a feeling of loss re-starts the grief cycle.

DENIAL: Until that day when I had the “ah-ha” moment in the clinic as I provided information and education about Parkinson’s for my patient, I realized that I was denying my symptoms. I had vaguely noted my symptoms during the previous six months: tremor, gait changes, bradykinesia, and restless legs, but I just didn’t spend much time thinking about them. One evening I googled “tremor” and read what I already knew: among other neurological problems, tremor is most associated with Parkinson’s or essential tremor. I chose to continue to ignore these symptoms and decided I would think about it if they continued until August when I had an annual wellness appointment with my primary care doctor. (Click here to read Betsy Veirck’s thoughts about denial in her post “Stunned by the Truth.”)

ANGER: I asked the angry question that many people ask when faced with a diagnosis like Parkinson’s: “why me?” Every time I ask myself this question, I always follow up with another question: “Why not me?” And then I say, “Everyone has something.” I don’t spend much time with anger as I am basically a positive person and being angry doesn’t seem useful or productive to me.

BARGAINING: Some people negotiate as part of coping with grief. My experience was debating with myself about my work schedule. I had retired from my full-time job the previous year and I was working per diem (as needed) a few hours a week. Maybe if I wasn’t working and wasn’t stressed, these symptoms would go away. I decided not to accept any assignments for the next month. One month later, I still had those symptoms.

DEPRESSION: Some people with Parkinson’s experience depression, hopelessness, and apathy. Depression can be a part of the grieving process, but it is also a result of changes within the brain due to Parkinson’s. I experienced deep sadness about the changes Parkinson’s would cause and I was especially worried about how I would look and feel at the end stage of Parkinson’s.

ACCEPTANCE: This is a recognition that Parkinson’s is a permanent reality. About two months before my neurology appointment, my grief had become manageable. I have always been a “glass half full” optimist and now I was ready to accept this diagnosis and move on to “what’s next.”

My “what’s next” was to educate myself about the change in my life. I had a level of knowledge about Parkinson’s necessary to evaluate and treat patients as a speech-language pathologist, but now I needed much more knowledge and education so that I could be an expert on MY Parkinson’s. I read books, I studied many pages of the websites of the Parkinson’s Foundation, the Michael J Fox Foundation, and the Davis Phinney Foundation. I learned about the typical symptoms and stages of Parkinson’s. I read about various treatments including non-traditional and traditional. I read about typical medications, and how they worked for various symptoms. And finally, I read about the end stage of Parkinson’s. This is where depression flared up again.

At that point, I realized that I likely had years to live before I would approach the end stage. I decided that I had a choice to stay with the depression and fear of the end stage or I could choose to live each day with intent and gratitude while I focused on the positives in my life. I have a long list of positives: My sons have expanded our family by sharing their lives with wonderful wives, the most enjoyable grandchildren, and lively granddogs. We have extended family: parents, siblings, nieces, and nephews. My husband and I are both retired and are fortunate to spend time in both Florida and Wyoming. We have many friends and, other than Parkinson’s, we both have good health. There isn’t a cure for Parkinson’s, but there are many medications and treatments to alleviate many symptoms. When I take a long view of my life, I add up many more positives to stack against Parkinson’s.

Armed with a positive, but realistic attitude, a referral from my Primary Care Doctor, and my MRI report, my husband and I were now waiting in the neurologist’s examination room. A month earlier, I had “the talk” with my husband and told him that I suspected I had Parkinson’s disease. I knew that he would need time to process through grief stages before we told the rest of the family. As we talked and I answered his questions about Parkinson’s, I practiced my positive attitude, and this helped him to focus on the positives. He is also an optimist and realist, so his supportive reaction added to my inner strength.

So, there we were at the neurologist’s office. The neurologist asked questions to determine my history, conducted a neurological exam, and reviewed my MRI report. There were a few minutes of silence as he entered information into the computer. I thought about my ocean. I was floating on the blue water feeling calm. But wait…I stopped floating and kicked my feet to tread water.

Maybe I am wrong. Maybe it isn’t Parkinson’s. Maybe.

I imagined a fish named Denial swimming around and around me…

until

the neurologist placed his hands on his knees,

looked directly at me,

and said …

Those.

Four.

Words.

“You have Parkinson’s Disease.”

References

Kübler-Ross, E. (1969). On death and dying. New York, The Macmillan Company

Parkinson’s 101. (n.d.). The Michael J. Fox Foundation for Parkinson’s Research | Parkinson’s Disease. https://www.michaeljfox.org/parkinsons-101

Parkinson’s Resources - Davis Phinney Foundation. Davis Phinney Foundation. (2022, April 18). https://davisphinneyfoundation.org/resources/

Understanding Parkinson’s. (n.d.). Parkinson’s Foundation.https://www.parkinson.org/understanding-parkinsons

Wells, B. O., & Porcaro, C. K. (2022). A Caregiver’s Guide to Communication Problems from Brain Injury or Disease. Johns Hopkins University Press.

Photo: Catherine’s photo of shore birds taken at Daytona Beach Shores, Florida