The Other Side of Parkinson’s: Opening Up About Nonmotor Symptoms
One woman shares her personal experience to raise awareness and let others know they are not alone.
Looking back, Kelly Weinschreider of Chicago realizes that there were warning signs of Parkinson’s disease long before she received her diagnosis. She experienced deep fatigue, falling asleep most nights on the couch soon after she got home from work. But as a young professional with an active social life, Kelly didn’t think her exhaustion was extraordinary. Parkinson’s was nowhere on her radar, and she knew nothing of the disorder’s many nonmotor symptoms, including fatigue, which often appear years before the more recognizable motor symptoms.
When Kelly did seek medical care after developing tremors, she was shocked to hear, at age 29, that she had early-onset Parkinson’s disease. As she educated herself about the neurodegenerative disorder, she learned about additional motor symptoms she could expect to experience (slowness of movements and rigidity); however, there was scant information on the plethora of nonmotor symptoms that affect people and little to prepare her for the profound impact these other symptoms would have on her quality of life. “In my experience, the nonmotor symptoms have been worse than the motor symptoms,” she says.
Kelly, who is now 47 and a patient advocate with the Parkinson’s Foundation, is committed to increasing awareness of nonmotor symptoms. As the facilitator of two support groups, she is open about her own nonmotor symptoms, which include urinary incontinence and anxiety so severe that it led to a stay in a psychiatric ward. In sharing her story, as uncomfortable as it may be, she hopes to show people they are not alone in their challenges and spur them to talk to their healthcare team about nonmotor symptoms and possible treatments. “Parkinson’s throws a lot at you, and it doesn’t always look like how we think it will look,” she says. “But that doesn’t mean we have to just accept it. I’m regularly blown away by the things that people live with when they may not have to.”
Parkinson’s throws a lot at you, and it doesn’t always look like how we think it will look. But that doesn’t mean we have to just accept it.
A laundry list of symptoms
Like most people with Parkinson’s, Kelly manages a laundry list of nonmotor symptoms. Research shows people can experience an average of 10 nonmotor symptoms over the course of their disease.1 Some of the earliest nonmotor symptoms to appear include:2
- REM sleep behavior disorder
- Reduced ability to smell
Additional nonmotor symptoms can develop as the disease progresses and include:2,3
- Urinary dysfunction
- Sudden drops in blood pressure upon standing (neurogenic orthostatic hypotension)
- Cognitive impairment
Learning to advocate for herself
Kelly’s anxiety is better managed now, thanks to a change in medication and ongoing therapy. She still experiences gut issues and struggles daily with apathy. She participates in physical therapy to help with incontinence issues and is being treated for neurogenic orthostatic hypotension (nOH). Prior to her nOH diagnosis, the sudden drops in blood pressure would leave her lightheaded and feeling faint. She gave up her daily dog walks and kept close to home, for fear of falling while out alone.
If you ask a person with Parkinson’s what they would change to make their life better, I bet it would be eliminating one nonmotor symptom.
A survey of people with nOH found that many others experienced similar shrinking of their normal activities: Up to 53 percent of patients and 73 percent of care partners reported that patients had reduced or stopped activities such as physical activity/exercise, housework and hobbies because of symptoms of nOH.4
Frustrated by the isolation she was feeling and eager to find a treatment solution, Kelly began tracking her blood pressure levels and symptoms. Her nOH is now effectively managed with medication and she’s back to walking her dogs.
That type of self-advocacy is critical for the Parkinson’s community, she says, because nonmotor symptoms aren’t always on providers’ radar. It’s often up to the person with Parkinson’s or care partner to initiate discussions about these other symptoms and share how they impact daily functioning and quality of life. “For 20 years, I’ve been fighting to get people to acknowledge my nonmotor symptoms,” she says. “If you ask a person with Parkinson’s what they would change to make their life better, I bet it would be eliminating one nonmotor symptom. We need to keep talking about these symptoms and acknowledging how they impact us. That’s how we can help manage them and that’s how we live well with Parkinson’s.”
To download an nOH symptom tracker and get tips for initiating discussions about nOH with a healthcare provider, visit nOH Matters.
1. Hurt CS, Rixon L, Chaudhuri KR, Moss-Morris R, Samuel M, Brown RG.. Barriers to reporting nonmotor symptoms to health-care providers in people with Parkinson’s. Parkinsonism and Related Disord. 2019; 64:220-225.
2. Poewe W, Seppi K, Tanner, C. Halliday G, Brundin P, Volkmann, J, Schrag AE, Lang A. Nature Reviews – Disease Primers. 2017; Vol 3, article 17013.
3. Aarsland D, Marsh L, Schrag A. Neuropsychiatric symptoms in Parkinson’s disease. Mov Disord. 2009; 24(15): 2175-2186
4. Claassen, D, Adler C, Hewitt L, Gibbons C. Characterization of the symptoms of neurogenic orthostatic hypotension and their impact from a survey of patients and caregivers. BMC Neurol. 2018;18:125.
©2020 Lundbeck. UBR-D-100795 May 2020