Parkinson’s Disease: Four Women Open Up About What They Wish They Knew When They Were First Diagnosed
Parkinson’s disease is a brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination. Parkinson’s symptoms usually begin gradually and get worse over time. As the disease progresses, people may have difficulty walking and talking.
Parkinson’s disease is also a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.
While Parkinson’s disease affects men twice more often than women, data shows that women experience a faster progression of the disease and a higher mortality rate.
With symptoms like tremors, rigid muscles, slowed movements, and speech changes, a Parkinson’s diagnosis can wreak havoc on the body.
These four women, who have been living with Parkinson’s for up to two decades, open up about what they wish they knew when they were first diagnosed, including how important it is to have a rock solid support network.
“You can live a great life with Parkinson’s, but you have to accept help along the way.”
Kelly Weinschreider, 47, of Chicago, Illinois, was diagnosed with Parkinson’s disease at just 29 years old. She was prescribed several medications that lessened her symptoms. Since she felt fine, it made it easier for her to ignore what was going on, especially since she didn’t tell many people about it.
“I didn’t want people to feel sorry for me, or for my diagnosis to change my relationships, personally or professionally, ” she said.
That denial—plus side effects from the medicine and the disease’s progression—forced her to leave her job as a quality manager 10 years later. She adds:
“I should have been seeing a behavioral health specialist to understand how Parkinson’s affected me and how to accept it.
Instead, I took my medications sporadically. I mismanaged time and commitments, and I had trouble performing my job and, ultimately, spun out. I wish I would have been more forthcoming with family and friends as to how the disease was affecting me.”
After living with the condition for 18 years, Weinschreider came to terms with her diagnosis. She also realized it truly takes a village to live life with Parkinson’s to its fullest and started to communicate with friends and family when she needed help.
“You need the support of family and friends, the care of multiple specialists, and the foresight to plan for the future. You can live a great life with Parkinson’s, but you have to accept help along the way,” Weinschreider says.
“I wish I hadn’t dismissed early symptoms.”
Denise Coley, 68, of Morgan Hill, California was diagnosed with Parkinson’s two years ago, after months of having trouble balancing and experiencing insomnia and mood changes—all things she thought were unrelated to each other, not signs of a slow degenerative disease.
“It wasn’t until the motor symptoms appeared, like the tremors, that I realized what was going on was a bigger issue than I originally thought,” Coley says.
In hindsight, Coley wishes she had responded differently, and run to the doctor first thing. She says:
“If I had realized sooner. I would have spent more quality time with family. I would have looked into what changes in my life and home were needed earlier in order to manage a long-term degenerative disease, both from a legal perspective and in terms of my future care.”
If you think there is even the smallest chance you might be dealing with Parkinson’s, see a doctor as soon as you can—don’t wait, she adds.
“I wish I knew how vital stress management is to slowing the progression of Parkinson’s.”
Lisa Cone, 57, of Wheat Ridge, Colorado, first experienced Parkinson’s symptoms 12 years ago.
Her neurologist later explained that the tremors, insomnia, and intense pain that came with her diagnosis issues could be linked to stress; in fact, research shows that stressful life events may increase the risk of the disease and result in more severe symptoms.
While Cone doesn’t believe stress was the root cause of her Parkinson’s, she’s a firm believer that stress management and listening to your body is vital to one’s wellbeing.
“I also wish I’d known I’d have to make difficult life-changing decisions like leaving a high pressure job and a bad marriage in order to reduce my stress—but these changes are worth it,”
Cone says.
“I wish I knew that depression can very much be a part of Parkinson’s.”
