NWPF utilized the principles of Participa-tory Action Research to conduct this survey.

Stakeholders should play an active role in:1) Defining the needs of the Parkinson's community

2) Identifying gaps in service and/or barriers to care in their local communi-ties

3) Shaping the programs and services offered by Northwest Parkinson's Foun-dation.

in the Northwest Parkinson's Community

At Northwest Parkinson’s Foundation, we believe that no one should have to walk their Parkinson’s journey alone. But we also know that everyone’s Parkinson’s path is unique. We estimate that over 100,000 people live with Parkinson’s in the vast areas of the Northwest – a 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.

As we tallied the 572 responses from across the region, we discovered three critical needs facing people with Parkinson’s (PWPs): 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 priority – access to specialty neurological care, also known as Movement Disorders Specialists (MDS). No matter how long folks have been diagnosed, their age, or location, the ability to see an MDS consistently rates highest on the list of needs for both people with Parkinson’s and their CarePartners. And this access becomes increasingly vital the longer folks live with Parkinson’s: the importance of specialty care increases 5% by the time people have lived with PD for eleven years, yet Parkinson’s specialists are only located in a few pockets around the region.

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 services - and your access to quality healthcare.

Melissa Tribelhorn, MPAInterim Executive Director

Melissa Tribelhorn inSenator Patty Murray's offices

Findings from the community survey...

Newly or Recently DiagnosedPeople with new or recent PD diagnoses prioritize specialty neurological care and rehabilitative therapies. They also name additional needs, such as general information about PD programming, conferences, and classes, support groups and peer-to-peer support, and online education. While some people with new PD diagnoses have not yet connected to the Parkinson's community, others are utilizing social media, support groups, and exercise classes to form networks of support. I seem to have made Parkinson's my new hobby! I seek everything and anything – information, resources, and services – that I think will assist me on this journey I find myself on. I want to be armed with knowledge! PWP, Seattle, WA

Young Onset PDIndividuals and families affected by Young Onset PD articulate age-related challenges with juggling chronic illness, employment, and family responsibilities.Biggest challenge: not enough time! I am overwhelmed, trying to be the primary breadwinner, caregiver, financial planner, cook, maid, etc. CarePartner, Mukilteo, WAFor people with Young Onset PD, Parkinson's education is the highest priority after healthcare access.

The closest neurologist specializing in Movement Disorders is over 1,000 miles away from where I live in Alaska. PWP, Juneau, AK

DEFINING OUR ROLEDEF IN ING OUR ROLE

WE HEAR YOU!WE HEAR YOU !

Parkinson's Community Priorities

More findings from the community survey...

Advanced Parkinson'sBoth PWPs and CarePartners expressed a need for more education and training on symptom management (including dementia) and daily care for Advanced Parkinson's, as well as end-of-life information and choices. People affected by Advanced Parkinson's are seeking information and resources that are tailored to their specific challenges.[There are] no support groups for advanced patients. PWP, Bothell, WA Many people with Advanced PD actively engage with their Parkinson's and shared key components to living their best lives with PD, including exercise and movement, understanding aging versus Parkinson's symptoms, keeping interested and active, rest, diet, medication management, and connection to others.[The key components to living my best life with PD] are staying connected to friends and family and finding ways to feel valuable. PWP, Missoula, MT Other subsets of the Parkinson's community have specialized concerns and resource needs, for example those living alone, those with atypical Parkinson's (such as progressive supranuclear palsy and multiple systems atrophy), and those living in out-of-home placement (continuing care retirement community, assisted living, adult family home, skilled nursing facility).

CarePartnersAfter healthcare access for their loved ones with PD, CarePartners highly prioritize connecting to other CarePartners, especially personal contacts in local communities. They articulate the importance of networking, creating a sense of community, and building a support system. CarePartners emphasize the dual challenges of attending to both their loved one and their own needs, especially as Parkinson's progresses. I started a PD CarePartner Support Group, go to all conferences offering CarePartner information, and developed a phone tree for anyone who needs to talk. I mainly focus on personal contact with CarePartners in our area. CarePartner, Moscow, ID Many CarePartners actively exercise their resilience and manage their thinking, often utilizing tools such as "grit," "patience," "humor," "optimism," and "determination."I keep in mind that it has to be very difficult and frustrating for my husband to have his body not responding like it did before PD. This helps me to be more understanding rather than angry with him. CarePartner, Portland, OR CarePartners also recognize the need for quality home care, transportation options, counseling, mobility equipment, and assistive devices.

Regional Considerations - Geography Matters! Programs, Services, TechnologySupport groups and peer-to-peer support are highly valued in rural communities and are the primary ways people are connecting to one another throughout the PD community, regardless of location.There is just something about getting together in a group that [feels] so important. PWP, Couer d'Alene, IDTalking to other [People with Parkinson's] is invaluable! It takes away the fear and helps one understand that they are making it OK, and you will too! PWP, Wendell, ID Many people affected by Parkinson's rely on the Internet to supplement the lack of in-person PD programming: Being too far from metro areas, I depend on internet access for info on what is new and possible for me. PWP, Wendell, IDThe survey, however, shows an inverse relationship between Internet usage and rural living. Hard copy materials offer information and connection for those who prefer print or don’t have access to technology. And communities with less access to in-person PD programming consistently requested more local, in-person education, resources, and support.Please help us in Alaska. Especially in rural areas. PWP, Homer, AKI developed a Parkinson's program [in my local community], because there was nothing local and the need was big. PWP, Seaside, OR

1 2 3 4Increaseaccess to care.

Localizeprograms and services.

Facilitatecommunity connections.

Deliver contentin multiple media formats.

Allow yourself to feel the pain, grieve the loss, and at the same time reach out and take advantage of opportunities to grow. CarePartner, Bellevue, WA

NWPF 2017 Community Survey Team

Sarah Winter, MSW, LICSWNWPF Social Services Manager

Jordan WhitleyUW Masters in Social Work Candidate

Joe ToweyDesigner

Charbill SemaanUW Community Based Learning and Research Team

Rany TadmoriUW Community Based Learning and Research Team

Aldrin FajardoUW Community Based Learning and Research Team

Donovan LeeUW Community Based Learning and Research Team

7525 SE 24th St, Suite 300Mercer Island, WA 98040877.980.7500206.748.9481

NWPF 2017 Community Survey – Quick Stats

Total number of responses

Number of square miles served by NWPF

Number of unique zip codes responding

5721,063,901

297

3%ALASKA

52%WASHINGTON

6%OREGON

6%MONTANA

13%IDAHO

US, OUTSIDE OFSERVICE AREA

17%

INTERNATIONAL3%

MAP OF SERVICE AREA SHOWING PERCENTAGE OF RESPONDENTS

Respondents by Role: People with Parkinson's 69% CarePartners, Spouses, Family, Friends 29% Service Providers 2%

Respondents by Age of Onset: Percentage of respondents diagnosed with Young Onset PD 23% Percentage of respondents diagnosed at 56 and older 77%

Years living with PD: 0-2 years 17% 3-5 years 27% 6-10 years 30% 11-20 years 20% 21+ years 5%

NWPF.ORG