My Sister Enjoys a Life Well-lived With Parkinson’s

I was 12 when my father died and 17 when my mother passed away. My sister, Beverly, became my legal guardian.

I’m not sure she knew what was expected of her at the time while caring for a teen who was devastated by the loss of her parents, but I have come to understand Bev as someone who now lives her life well, despite her Parkinson’s disease (PD) diagnosis.

I asked Bev, who has stage 3 PD, if she would be willing to share details of her journey with the condition. I also wanted to write this column as a way of honoring her and expressing my gratitude to her for being my sister and friend.

Bev wasn’t diagnosed with PD until 2017, after having symptoms for about eight years that no one had attributed to PD. She told me that while working as a nurse, and then as an echocardiography technician, she had experienced the shaking of her head and left hand. Bev also had some issues with dizziness, balance, and walking.

“My patients were asking me if something was wrong because my head was shaking, and they thought I was seeing something wrong on their echocardiogram,” she said. “I never realized that my head was shaking at the time.”

Her symptoms increased slowly but consistently. However, Bev believes that working and continuing education in her profession helped keep her symptoms under control.

She was finally referred to a neurologist at the Cleveland Clinic’s Center for Neurological Restoration. A number of tests, including an MRI, cognitive tests, and movement and balance analyses, were conducted, and she was diagnosed with PD.

Bev says that deep concentration on a task helps her to think more clearly without her thoughts drifting, and it sometimes even helps with shaking and balance issues.

I witnessed this during her recent visit to Arizona, where I live, when Bev decided to make banana bread. She loves to bake, and it was evident that concentrating on the recipe for banana bread was both therapeutic and fun for her. I knew not to interrupt her or else I would be in trouble!

Bev retired in 2002 from a hospital where she had worked for 41 years.

Now, at 83, she observed, “I am forgetful, have poor memory with names and numbers, and it is difficult to remember things. My walking is extremely slow, and I can’t walk very far without being off-balance or becoming exhausted.”

Bev added, “I love my dear sister, Joie.” (That’s me.) “She teases me when I have memory issues and tells me that I have ‘neural blending,’ a term that Joie made up. It means that I take parts of one story and parts from another and blend them into what I believe is the actual story or facts. Of course, most of the time the incidents usually didn’t even happen as I remember it. So, I think the phrase neural blending is a great description of my current thinking ability.”

I often jokingly tell Bev that she is “The Bionic Woman” who “takes a licking and keeps on ticking” because her PD is not the only challenge that she has confronted. In 2005, she had bypass and mitral valve replacement heart surgeries. In 2014, she was diagnosed with colon cancer, had surgery, and received chemotherapy. She is a seven-year cancer survivor!

My sister now enjoys a life well-lived for many reasons, particularly because she has a positive attitude toward PD and life in general.

“I refuse to let my illness control my life,” Bev said. “I can tolerate whatever I am dealt. I make fun of myself even when I screw up. I laugh about it because laughing is good for the body, mind, and soul.”

She added that there are many resources for PD patients, including fall prevention and balance programs, dance and movement classes, and nature outings through the National Park Service.

“We can do more than just sit in front of a television,” Bev said.

Dear sister, after these many years, I want you to know that you live your life well. I am proud to call you my sister and friend. I am grateful for your courage and boldness and for being the wind beneath my wings. You are the reason I can fly!

I love you always.

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