Parkinson’s Action Network South Carolina State Director, Adrienne O’Neill, is a powerful force in her state’s Parkinson’s community. Not only does she advocate for strong federal policy on behalf of people with Parkinson’s, she works with her local area hospital to educate everyone from the CEO to the nurses and doctors about Parkinson’s disease, and the care it requires.
We interviewed O’Neill and learned about how she developed a strong working relationship with her Representative in Congress, and how she hopes to work more closely with her Senators.
Q: Adrienne, tell us how you came to be a part of the Parkinson’s community in South Carolina.
Adrienne O’Neill: I moved from Rhode Island to Hilton Head, South Carolina in the summer of 2005 with my husband Larry. Though we intended to retire, in 2007 I found myself working for Island Hospice in Hilton Head as a Chaplain. That same year, I began to feel “something coming over me.” I was exhausted all the time, my arm ached (I thought it was from playing golf) and I began to notice a slight change in my gait. Of course, I know now that it was the early symptoms of Parkinson’s disease, but it wasn’t until December of 2009, after visiting numerous physicians, that I was diagnosed with Parkinson’s. It wasn’t a surprising diagnosis since both my mother and my grandfather had Parkinson’s.
Having led support groups for Hospice (a job I had to, unfortunately, leave) I realized that my husband and I would benefit from a support group. It was there that I learned about 23andMe and was tested for the LRRK2 gene mutation and found out that, indeed, I carried the gene mutation. In the early 1990s when my mother was diagnosed, she was told it was “just a coincidence” that she and her father had Parkinson’s. I am so grateful to my support group because through them I learned so much about the disease and the available resources.
Q: What drew you to Parkinson’s advocacy and working with PAN?
AO: Together with other support group members, I began attending Parkinson’s conferences, and met PAN’s Georgia State Director James Trussell (recipient of PAN’s 2010 Milly Kondracke Award for Outstanding Advocacy) at the Southeastern Parkinson’s Conference in Atlanta. Meeting James was a pivotal moment for me. He told me about the work PAN does and suggested that I look online to learn more about the organization. I had just volunteered to lead a support group and wasn’t sure I could fit another responsibility on my plate. But once I learned about PAN’s advocacy work, I was in! Last February, I attended my first PAN Forum as a Congressional Coordinator and visited the offices of our Senators and Representatives from South Carolina. Putting to use the skills I learned at the Forum, I was able to articulate important issues and concerns of the Parkinson’s community to the staff of five Members of Congress from South Carolina.
Q: How do you help educate the public about Parkinson’s disease?
AO: Through my work with the Hilton Head/Bluffton Support Group, I focus a lot of my time on the proper care and treatment of Parkinson’s patients. I have worked with nurses and other hospital staff members to educate about Parkinson’s disease. I am working now to create a team of people with Parkinson’s and care partners that will go to our local hospitals and nursing homes to educate staff. I have put together several “leave behinds” that detail what to be attentive to when caring for someone with PD. Also, I have recently been asked to join a steering committee at St. Joseph’s Candler Hospital in Savannah, Georgia, that will work to better serve those with movement disorders.
Q: What are some of the biggest challenges you have faced as an advocate?
AO: My biggest challenge was meeting Representative Joe Wilson (R-SC). I was scheduled to meet him during the PAN Forum but he was called away for a vote at the last minute. It was my good fortune, however, to have a very positive and meaningful meeting with his Deputy Chief of Staff, Melissa Chandler. We discussed issues facing Parkinson’s research funding, the National Neurological Diseases Surveillance System Act, as well as the Parkinson’s Caucus. Melissa was so open to hearing what I and two others from South Carolina had to say about PD and she reported to Representative Wilson the essence of our meeting. I have continued to stay in communication with her since, and as a result of these efforts, Representative Wilson has become a member of the Parkinson’s Caucus and has become a Co-Sponsor of the Surveillance System Act. I received a note thanking me for calling these issues to his attention.
While I had good meetings with staff members for Senator Lindsay Graham (R-SC) and Senator Jim DeMint (R-SC) at the PAN Forum, meeting them and having a relationship with them such as I have accomplished with Representative Wilson is still a work in progress.
Q: Let’s talk about your working relationship with Representative Wilson – how has that evolved over the past few months?
AO: When Congress recessed in August, I called Representative Wilson’s local Beaufort County office to see if we could meet with him while he was back in our district. While we weren’t able to meet with him in August, his schedule showed he would be in Beaufort, SC for a breakfast on a Friday morning in September. So, my husband and I got on the road bright and early the day of the breakfast, and when we arrived at the restaurant it was almost empty. I asked the waitress if Congressman Wilson had been there and she said, “He’s upstairs having breakfast, would you like to go up and speak with him?” We went upstairs and he stood up to welcome us. I introduced myself as a member of the Beaufort County Parkinson’s community and as a Congressional Coordinator for the Parkinson’s Action Network. I thanked him for the work he has been doing for people with Parkinson’s, and he shared with me that he has a good friend with Parkinson’s and that his staffer I’d met with in February, Melissa, also has a personal connection to the disease.
He asked that we join him and about nine others for breakfast, which we did! It was an
excellent meeting, and I had several opportunities to speak. After the breakfast, several folks came up to me to talk about Parkinson’s. I was astonished; the meeting couldn’t have been better! He was delightful and I was very pleased to have finally met him personally. I followed up with a note to Melissa telling her about the meeting and to let her know that I would be sending a thank-you note along with an informational packet the folks at PAN put together for advocates to use as a follow-up to meetings like this.
Q: Have you found email to be a better way to reach out to your elected officials, or is it still important to make phone calls?
AO: I do think it’s important to still make phone calls. I have spoken with Melissa in Representative Wilson’s office three or four times on the phone since our initial meeting in February. However, I also have had very good responses to my emails. I don’t want to be a pest, so I only call when PAN has asked me to do so or if I have something really important to say.
Q: What advice do you have for people with Parkinson’s who want to become more involved in the community?
AO: Joining a support group as an initial introduction to the Parkinson’s community is an important first step. There, you learn how others are coping with the disease and where the true need lies. So many people with Parkinson’s unfortunately don’t talk about their PD until they absolutely have to. Because of this, the community has a false sense of the number of people afflicted as well as what their needs actually are. A good first step is telling people that you are a person with Parkinson’s and to talk with those you know at social functions, church events, and any other community involvement you may have.
Tell them about the need for research funding, the lack of facilities for the treatment of movement disorders in many communities, and the misunderstanding of the disease even in the medical community. Be an advocate and you will be surprised at the number of people who have a connection to Parkinson’s and who are open to hearing what you have to say. You might even meet folks who can help make a difference. I like to tell people, “So much has been accomplished in the treatment of cancer, heart disease, HIV, and other diseases. We need more NIH research dollars to go toward Parkinson’s research for better treatments, tests, and a cure!”
We need to raise awareness of this need both locally and nationally! I heard a woman at the PAN Forum stand up before the whole audience and say, “When you become an advocate you cease being a victim.” I think she’s so right. Since I have become an advocate, I have become tremendously empowered and energized!
Adrienne, on behalf of everyone at PAN and the Parkinson’s community, thank you for everything you do!