Questions
I’ve been encouraged to tell my story. Specifically, my Parkinson’s story.
We have a little thing we do when we meet each other. We list off how long we’ve had Parkinson’s, when and how we found out we had it, or some version of this. Every time I speak of Parkinson’s or list it in my medical history, I make sure to note that I have young-onset Parkinson’s. I want to stress that I don’t just have this crappy disease, but I got it when I was young. So there.
In 2009, I was 36 years old and a stay-at-home mom who ran around with her four kids. My youngest was starting school and I was scheming to figure out what was ahead for me in the next chapter of life. I had not kept my RN license current after moving to Texas 9 years prior. You know, all the kids and demands. But the school my kids attended offered me a job that turned out to be a perfect fit for me. I was living the dream. Except for that nagging pain in my right shoulder.
I spent the next five years trying to get to the root of that pain. It feels like I went to a million doctors, practitioners, and therapists, traditional and alternative, anyone and everyone, and on each visit, I had to repeat my medical history so we could try to solve the puzzle that was my body.
“When did your pain start?”
“Have you been in an accident?
“What causes the pain?”
“Does anything relieve the pain?”
“Does this hurt?”
“Does it hurt when I do this?”
“How about this?”
“What about this?”
…..etc.
IYKYK. And I’m sorry you know.
More Questions
Because of my age, no one was looking at possible neurologic issues. I didn’t have a tremor. We all seemed to be on the musculoskeletal wagon, riding straight down the path that led to two surgeries. As I alluded to earlier, I saw everyone I knew to see before I said yes to major surgery. One alternative medicine therapist even massaged the fundus of my uterus because that is “where my chi is.”
Good grief.
But even after five days in ICU following a rib resection surgery for Thoracic Outlet Syndrome, and more weeks of recovery, my body was not the new pain-free version I expected. In fact, at a Zumba class (my favorite hour of the week) my right foot had forgotten all of its steps. And my concerned friends at work would kindly comment that my right hand didn’t seem to move like the other.
One friend that I work with insisted I see her spinal alignment specialists because she had great results after seeing her. I tried to politely convey that I had already tried that sort of thing and I couldn’t spend money on more of that.
A few days later I found an envelope of cash in my purse and the specialist’s name on the envelope. I made an appointment and went with low expectations. The alignment specialist did not fix me, but she did take a medical history, and once I mentioned that my right foot was dragging a bit, she insisted I see a neurologist. “Like, now,” she said, “promise you will call right away.”
I did.
Answers
The local neurologist gave me a very thorough exam, then mentioned I didn’t look like an ALS patient, nor a Parkinson’s patient. He referred me to a Movement Disorder Specialist in Houston, three hours from my home. My oldest son has a well-managed movement disorder and the doctor figured I had something in the same category.
On December 9, 2014, my husband and I made the drive from Waco to Houston’s medical district. The movement disorder specialist’s staff asked all the right questions. Among the many, many questions:
“Have you noticed a decreased sense of smell?”
“Have you experienced drooling?”
“Does your handwriting get smaller as you write?”
Yes.
Sometimes.
How did you know???
The doctor eventually said the words, “You have Parkinson’s Disease.”
I quickly reminded him that the last neurologist said I did not look like a Parkinson’s patient. His only response was, “Well, I assure you, you do!”
Miracles
Gut-punch describes it best. I’d spent all this time and effort, had surgery, and spent a lot of money, all with some hope of feeling better, thinking there would be an end. Healing. At the very least, some relief.
But I got this. Parkinson’s. 42. Degenerative neurological disease. Degenerative. Oh, and Progressive!
It was a long ride home. Family and friends who had been praying and walking this journey with us waited anxiously for news. I called each of them on the way home, sobbing. I’m a crier.
I also stopped at a mall and bought myself a fancy new watch. A consolation prize, of sorts.
I’ve heard of those who were cautious about sharing with their employers, even with their family, about their Parkinson’s diagnosis. In my case, my people had walked with me for years through my ordeal, checking on how I felt, praying for me, keeping my kids while I had appointments, all the things. They were invested. It was a natural next step to fill them in on my diagnosis. We experienced a collective gut punch. My friends sobbed with me and helped me absorb its impact. I have not felt alone.
Ever.
I am a woman of faith. I believe God performs miracles. One of them is my learning to be content and joyful in crappy, bleak circumstances. And I am!
Parkinson’s makes day-to-day living exhausting and I really hate it. I’ve shaken a few fists and let my disappointment be known. This is certainly not the life I thought I’d live.
But, slowly, I’m finding I have a sturdier joy in me that goes deep. It’s deeper than just that happy buzz I have for lesser things. There’s a shifting happening in my soul. The things I love are in a different order.
And I could not care less about that fancy watch.
__________
Kim Morrison recently celebrated her 50th birthday. She is the Enrollment Management Director at Live Oak Classical School, still in a full-time position. She was diagnosed with young-onset Parkinson’s disease at the age of 42 and underwent DBS surgery in 2019. She and her husband live in Waco, TX, with two of their four kids still living at home.