A life beyond Parkinson’s
Local woman becomes advocate for cure
It was around seven years ago the middle finger on the right hand of Sharon Kailas started to tremor. It took a year for her to learn it was the first noticeable symptom of her early onset Parkinson’s disease.
Parkinson’s is a neurodegenerative disorder that mainly affects dopamine-producing neurons in a specific part of the brain. It can cause tremors, slowness of movement, limb rigidity and balance problems.
For a year Kailas, now 57, sought answers with a chiropractor, a hand doctor and eventually a neurologist. She described her first year with her diagnosis as being a closet patient.
“We didn’t tell anybody anything for a year,” Kailas said.
She said it’s easy to hide the condition — condition is a term her neurologist gave her permission to use. She waited to tell her two children, but her husband was with her from the beginning.
“When I told them (her kids) I just felt such relief,” Kailas said.
The condition spreads slowly, and seven years later it only affects the right side of her body. She continues to work and has a positive outlook.
“I haven’t always been this cheery about it; it’s the new normal,” Kailas said.
She has a supportive team and family and has found others personally affected by Parkinson’s to help her along the way, she said. And though she’s had her pity party, as well as an altered vision of what her life would be, she’s doing things she never would have without her diagnosis.
“We (she and her husband) take ballroom dance lessons at Fred Astaire,” Kailas said. “It’s really good for me because my brain is working really hard and I’m symptom free.”
Not only did she seek experiences like this one, she became active in advocacy in the search for a cure for Parkinson’s. Kailas serves as a member of the Medical College of Wisconsin Neuroscience Research Board and has created Gray Matter Matters LLC, a business that sells products and the proceeds of which are given to the board.
A8 “There’s so much that we can all give back.”
– Sharon Kailas
Sharon Kailas, director of pupil service with the West Bend School District, smiles as she tells the story of her Parkinson's condition Friday morning at the district's offices in West Bend. Kailas was diagnosed with Parkinson's disease in 2012. After being diagnosed, Kailas started the company, Gray Matter Matters. The company sells clothing with a brain symbol on them. All proceeds from the sales benefit the Medical College of Wisconsin for neuroscience research.
BELOW: One of the Gray Matter Matters mugs on a bookshelf in Kailas’ office.
John Ehlke/Daily News
FROM THE FRONT
Parkinsons: #GrayMatterMattersDay is Thursday
“There’s so much that we can all give back,” Kailas said.
As she was getting started she worked to get the brain icon found on all of her products trademarked. The creation of the icon was one of many things that came to fruition, in-part, thanks to the help of others.
“You find all these great things that happen in the Milwaukee area,” Kailas said.
Many of which she never would have found if it weren’t for her condition, she said.
Gray Matter Matters has been helped along the way by businesses like Straight-Up Inc., Christopher Morgan Fulfillment Center and Sattell, Johnson, Appeel & Co. S.C. They have helped her create her business and the products and gave her the means to disperse them.
Kailas has been told a cure is likely within her lifetime and her side gig is working to help people like Medical College of Wisconsin assistant professor Allison Ebert find one. So far the business has donated $3,000 to the cause and the rest has gone back into the Gray Matter Matters.
On Thursday, as part of Parkinson’s Awareness Month, Kailas is hoping those who have purchased some of her products will share about it on social media during Gray Matter Matters Day by taking a selfie and tagging the post with #GrayMatterMatters Day.
“It’s not just my story ... my mission has been to become more public about it,” Kailas said. She said the experience so far has been, “only for the better, which is the weird thing.”
Products sold by Kailas and more about her story can be found at www. graymatter-matters.com.