My Life with Parkinsons’

As we continue to shift our perspective this new year, Iā€™m excited to share the last installment from my friends. I imagine us sitting on a bench with these interesting people and learning something new. Each one has a unique view of the world that makes me think differently. This week’s insight comes from a friend who is also family, Sharon Kailas.Ā 

Sharon’s quiet, kind yet insightfulĀ demeanor has impacted me since we met decades ago. Blessed to to be cousins through marriage for over twenty years, she continues to be a shining example of navigating life’s bumps in the road well. Her grace and steadfast, positive outlook encourages anyone facing life or even neurological road bumps. Sharon is a special education teacher at heart, a board member of multiple philanthropic organizations along with being a wise, funny, and generous daughter, mom, and friend. I’m thrilled to share her words with you…

As I started my new promotion as the Director of Pupil Services for the West Bend School District in the fall of 2011, I realized I would need to put in extra hours and effort. What I didnā€™t know is that my Parkinsonā€™s would also surface. My neurologist has explained that I have always had Parkinsonā€™s, but it was not yet evident. As we look back and discussed some of the early warnings, we had to agree. I freely use the pronoun ā€˜weā€™ since my husband, Chris, has been on this journey with me every day.

During the fall of 2011, I noticed a tremor in the middle finger of my right hand. I ignored it for a while, sought care with a chiropractor, and ended up seeing a hand doctor who referred me to a neurologist. I made an appointment with a general neurologist who performed this test where he poked my right forearm with needles. He didnā€™t say a lot and I didnā€™t ask very many questions. When I went back to the hand doctor, he shared the neurologist report and asked me if the neurologist told me that he thought I had Parkinsonā€™s. Nope, he never mentioned anything. It was at this point that my life changed, all for the better (well, mostly for the better).[tweetthis]When life changes, how we react matters! See how even difficult changes can be positive #Attitude[/tweetthis]

A family friend was able to expedite getting me an appointment at Froedtert where my diagnosis was confirmed. When Dr. Hiner told me that he fully expects a cure in my lifetime, I got busy. Well, I got busy after my pity party. I spent a week in bed after the shock of the diagnosis where my husband came home every lunch hour to make sure I was OK. We didnā€™t share the news for over a year because we realized we had to tell our two adult daughters first, and that was really hard to do. Once that was done, my life really changed.

Given the support and kindness of many new friends, I have moved forward. I am a member of the Medical College of Wisconsin Neuroscience Research Board where I advocate for all neuroscience patients. I have also started a business, Gray Matter Matters, LLC. That experience showed me that there are so many kind people who are willing to support my cause. Our dear friends, owners of Straight Up Inc. guided me to start the business by providing the general business foundations. I have been blessed with the support from Christopher Morgan Fulfillment Center to ship my products.

My husband and I have also been swept up in the ballroom dance world. We take weekly lessons at the Mequon Fred Astaire studio. Ballroom dance is extremely beneficial for Parkinsonā€™s because it entails a lot of hard work, large body movements and specific fine motor skills. I have also competed in dance competitions, which is a fascinating experience.

Parkinsonsā€™ has provided me the opportunity to be surrounded by positive caring people and every morning when I wake up I have the choice about how to spend my day. I chose to make a difference and live a very happy life.

Sharon and her family

To learn more about or connect with Sharon check outĀ Gray Matter Matters where all profits go to funding neuroscience research at the Medical College of Wisconsin.

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