Difficulty in Diagnosis Greatly Affects Quality of Life of Parkinson’s Patients, Survey Finds

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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Parkinson's survey

People living with Parkinson’s disease are frustrated with the difficulty in getting an accurate diagnosis, a new Health Union survey found.

The “Parkinson’s in America 2017″ survey, conducted online between Jan. 19 and March 13 of this year, includes responses from 1,100 Parkinson’s patients and was released through ParkinsonsDisease.net, Health Union’s newest online community for patients.

An infographic series illustrating the survey results is available here.

Respondents reported experiencing a series of symptoms before their final diagnosis, such as tremors or shaking (72 percent), changes in walking or difficulty walking (42 percent), changes in handwriting (40 percent), fatigue (37 percent), and reduced sense of smell (31 percent).

Many of these symptoms are also present in other conditions, which is why a Parkinson’s diagnosis is not easy to reach. About a third of the people surveyed initially received an inaccurate diagnosis, including essential tremor (31 percent), depression or anxiety (27 percent) or benign essential tremor (15 percent).

“I was officially diagnosed at age 32, but I had begun to see symptoms at 29,” Allison Smith, a ParkinsonsDisease.net patient advocate, said in a press release. “I had difficulty getting a Parkinson’s diagnosis because I was so young. When something was wrong, I was told I had injured myself or that I had overworked myself in graduate school. This is a frustrating time and you almost feel like you are losing your mind because the doctors can’t figure out an accurate diagnosis.”

Parkinson’s can also make life extremely challenging, with 80 percent of those surveyed reporting they feared the future because of painful spasms or cramps (59 percent), depression (59 percent), difficulty in concentrating (58 percent), or difficulty with mobility outside their home (46 percent).

“Frustration can happen on many levels. For example, with facial masking, the lack of facial expression due to Parkinson’s makes it extremely hard for caregivers, families, and loved ones to communicate effectively,” said Angela Robb, a ParkinsonsDisease.net caregiver contributor. “One can literally think a loved one with Parkinson’s is angry or sad because they cannot move their facial muscles or not hear them because of low speech volume.”

Robb added: “It’s extremely important for caregivers and other loved ones to acknowledge that they need help. Caregivers need to care for themselves. Joining an online community like ParkinsonsDisease.net is a great way to share your experiences and learn from others about coping with the stress of caring for someone living with Parkinson’s.”

Tim Armand, co-founder and president of Health Union, called ParkinsonsDisease.net “a place where patients can get information and support for dealing with this life-altering condition,” and added that besides meeting needs for patient support, “ParkinsonsDisease.net provides specific resources for caregivers and family members.”

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