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We're Listening: NWPF 2017 Community Survey

Monday May 14, 2018

   

 

 We're Listening: 

NWPF 2017 Community Survey

 

     Working alongside people with Parkinson’s and their families has shaped me personally and professionally since I joined Northwest Parkinson’s Foundation (NWPF) in 2013. When I came to the organization as Program Director, I had a basic sense of how a person lives with a Parkinson’s diagnosis, as my grandfather had been living with Parkinson’s since the early 2000s. But I had no idea how profoundly this community would impact my belief that no one should walk their Parkinson’s journey alone.

     I also learned how everyone’s Parkinson’s path is unique. At NWPF, we estimate that over 100,000 people live with Parkinson’s in the vast areas of the Northwesta territory of one million square miles! That’s why we asked YOU how we could have the greatest impact in the lives of people affected by Parkinson’s throughout the Northwest. Last year, with the support of the University of Washington Community Based Learning & Research Team, we conducted a formal needs assessment of the Northwest Parkinson’s community. Over the course of six months, people from 297 zip codes responded, including: people with Parkinson’s, those diagnosed with young onset, carepartners, family members, and service providers.

     As we tallied the 572 responses from across the region, we discovered three critical needs facing people with Parkinson’s: ability to receive specialized medical care, opportunity to connect with others in the community, and education on the disease and how best to manage it.

     This community is overwhelmingly united in its number one priorityaccess to specialty neurological care, also known as Movement Disorders Specialists (MDS). This access becomes increasingly vital the longer folks live with Parkinson’s, yet Parkinson’s specialists are only located in a few pockets around the region. I know firsthand what it’s like for those living in remote areas of the Northwest. My grandfather had to drive two hours in freezing conditions during Montana winters to visit a general neurologist in Missoula; he never had the opportunity during his 15 year diagnosis to see an MDS.

     And it’s not just folks living in remote areas who have trouble accessing specialists. Many people right here in the Puget Sound have limited health insurance or unreliable transportation that prevents them from seeing MDSs at our major medical systems. One woman in Southeast Seattle told me that because she can no longer drive herself or walk to the nearest bus stop, and her family members all work multiple jobs, it is incredibly difficult for her to make it to appointments at Swedish in First Hill. The Community Survey told us that so many people share similarities with this woman or my grandfather, even if the specifics are different.

     We are listening! You have given us a clear directive to ensure that the Parkinson’s community receives specialty care, supportive resources, and educational programming. We pledge to continue to expand our innovative programs and servicesand your access to quality healthcare. You, as part of the Parkinson’s community, deserve it. We are by your side.

 

Melissa Tribelhorn, MPA

Executive Director

 

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