Joyce Starr on Becoming a Parkinson’s Advocate (and Learning as she Goes)

Joyce and Richard Starr

Joyce Starr lives the Davis Phinney Foundation philosophy of “every victory counts” every day. As the Community Action Committee (CAC) leader in Lincoln, NE, she connects people with Parkinson’s and their families with resources, support, and others who know what they’re going through.  

Like many people who get involved with the Healthy Parkinson’s Communities™ initiative, Joyce started out as an individual affected by Parkinson’s. Before long, however, she got involved with her local support group, which led to a passion for sharing resources and inspiration with others. Here, she shares her story about getting involved, building community, becoming a leader, and playing the long game. 

Becoming a Parkinson’s Advocate

Joyce and her husband, Rich, have been part of the Lincoln community since 1984. “It’s where we raised our children and now are able to watch our grandchildren as they grow,” she says. “We love Lincoln!”  

Joyce and Richard StarrFollowing Rich’s Parkinson’s diagnosis in 2014, he and Joyce got involved with the Lincoln Parkinson’s Disease Support Group (LPDSG) (“for which we are thankful!” Joyce says) and Parkinson Nebraska. It was through that connection that they learned about the Davis Phinney Foundation. And it was through that connection that she discovered the Every Victory Counts manual, which she now distributes like it is her life’s calling.  

“To try to get our fellow ‘Parkinsonians’ — is that a word? — and medical professionals more aware of Parkinson’s, we hand out the Every Victory Counts manuals to everyone we can,” she says. “It’s a wonderful resource and contains so much helpful information.” 

In the past year, Joyce has handed out approximately 100 copies in the Lincoln area, anywhere she finds a connection to the Parkinson’s community. In each book, she adds a small sticker to the front cover with information about the local Parkinson’s support group she leads. 

The manual, she says, is critical to living well with Parkinson’s, and she wants others to benefit from it the way she and Rich have. It has long been their go-to Parkinson’s reference, and Joyce believes the newest edition is the best yet. Because Parkinson’s is always changing, having a comprehensive guide that you can turn to for information that’s meaningful to you in the moment is invaluable, and something Joyce wants everyone to have.  

(She and Rich recently rediscovered just how invaluable the manual can be. Rich began noticing a terrible skin reaction, and he and Joyce spent some time with his general practitioner and then an allergy specialist to try to determine the cause. It wasn’t until Joyce took a look at the list of medications to avoid in the new edition that they found the culprit: a new medication Rich was taking was on that list and was causing the reaction.) 

From Care Partner to CAC Leader

While Joyce has been successful in supplying the Every Victory Counts manual to local individuals, therapists, dermatologists, home care agencies, family physicians, and neurologists, she says there is much work still to be done. “There are still individuals and clinics who are not aware of this wonderful resource,” she says. 

Joyce and Richard StarrA lack of awareness about the manuals is not the only concern Joyce is trying to address in her area. Like there are in most communities, barriers exist that can make it harder for people with Parkinson’s to find the treatment, support, and connections they need to live well. 

One of these barriers in Lincoln is the lack of movement disorder specialists (MDS). Joyce says that while she’s grateful that she and Rich have been able to see the MDS team at the University of Nebraska Medical Center in Omaha, driving to appointments there takes more than an hour. She acknowledges that they’re fortunate that they can make the trip and have access to the facility and the experts there, but she knows that many in her state are not as lucky. 

“We know that as we get older and Rich’s Parkinson’s progresses, our traveling to Omaha will become more difficult,” she says.

“We also know that those who live even further west have an even longer and more exhausting commute to get this quality care.” 

These kinds of barriers inspired Joyce to begin a Community Action Committee in Lincoln. Through this work, and later by joining the Healthy Parkinson’s Communities network, she has become a leader in the area and has helped numerous people with Parkinson’s and their families find the information, support, and inspiration they need and might otherwise be unable to find or access. 

Learning as She Goes

Another challenge Joyce is working to overcome is developing a lasting group of Parkinson’s advocates. As anyone who strives to build collective impact knows, this work is an ongoing learning process. Through the Healthy Parkinson’s Communities initiative, however, Joyce has found tools, motivation, and connections to help.  

Joyce and Richard Starr and familyEven though Rich and I have been very busy with the LPDSG, I feel new at striving for a healthier Parkinson’s community,” she says. “Recently, though, I’ve found a group of three people who have an interest in being part of the initiative, and now we have two others on board.” 

Although creating an action team is not easy, she says, “I believe the group will evolve, even though it may seem slow. I’ve been introducing people to the Healthy Parkinson’s Community initiative, and we’ll see what develops. Every victory counts, even if they are small ones!”  

Learn More about the Healthy Parkinson’s Communities Initiative 

Healthy Parkinson’s Communities is an initiative led by the Davis Phinney Foundation to help support community leaders, volunteers, and advocates in the pursuit of making the places where we live, work, and play more inclusive and supportive for those living with Parkinson’s. Learn more and get involved here.

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