Editor’s Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Corey Daniel King’s Essay:
I’m Corey King. I’m the president and chairman of the Alamo Area Parkinson’s Support Group, the South Texas chapter of the American Parkinson Disease Association. I’ve had many roles in my life; a son, a brother, a husband, a father, a military officer, an executive in public, private, and startup businesses, and an engineer and scientist. Recently, I discovered that I’m also a person with Parkinson’s, and I’ve become an advocate, fundraiser, cheerleader, and supporter in the quest to ease the burden and find the cure for Parkinson’s disease.
I was diagnosed at age 47, 2 years ago. My diagnosis story is somewhat typical for a young-onset patient; I spent years battling the symptoms of Parkinson’s without knowing what they were, and I walked a long, crooked path with many misdiagnoses and delays before finally getting the answer that none of us with Parkinson’s want to hear. There was some comfort in being able to put a name to the wide variety of seemingly unrelated medical problems that I experienced, and to finally be able to make a plan for how to combat the disease, but like other young-onset Parkinson’s patients I would’ve preferred to hear almost anything else.
Since then, I’ve become involved in leading our local support organization. We provide support groups in San Antonio and South Texas, and we raise funds to support medical research and provide educational symposiums, conferences, and outreach activities. For much of the past 28 years, I have been a leader and executive in the information technology and information security world, and I have a deep regard and personal fondness for information systems and social media technologies. We at AAPSG apply those technologies to extend our reach as we communicate to other PWP’s, caregivers, and supporters.
In the last 6 months, since I’ve assumed leadership of AAPSG, we have created a new Ning.com-based website, and we’ve linked our organizational Facebook page, my personal Facebook page, my Twitter feed, and my blog site at http://cdkingcrookedpath.wordpress.com with our new website. We’ve been successful in making all of these technologies work together, and we use them to communicate more easily with our members, to reach out to potential donors and supporters, and to educate the community at large about Parkinson’s disease. Our information technologies are a force multiplier for us–we use social media and other traditional media such as newsletters, radio advertisements, and print media, to reach much farther and contact more people then would otherwise be possible.
It’s been a busy 6 months. In that time, in addition to working with AAPSG to create our social media systems, I attended the Parkinson’s Action Network conference in Washington, D.C. and met with 6 Texas representatives and senators and was able to influence Sen. Kay Bailey Hutchison to join the caucus supporting Parkinson’s disease education and research in the United States Congress. I’ve also been interviewed on two local radio shows and have been featured in a newspaper article on deep brain stimulation in the San Antonio Express-News. I’ve begun writing The Crooked Path, a well-received blog from a patient’s perspective on the issues that Parkinson’s patients and caregivers face. And, I also have had deep brain stimulation surgery and have begun the process of adjusting and tuning the stimulator.
These activities are valuable as methods for reaching out as broadly as possible to improve the lives of people with Parkinson’s and their families and care partners. I am passionately dedicated to this cause, and social media technologies are some of the most effective tools at my disposal to pursue my goals. At the Mayo Clinic conference on social media, I hope to learn about new social media techniques and share my own experiences with others to benefit the Parkinson’s community.
I have found that our biggest challenge, as is usually true, is communication. Social media helps us to improve and expand our communication, reach more people who need what we have to offer, and create an awareness among benefactors and the broader population about the needs and challenges of those with Parkinson’s disease. I look forward to attending the conference, sharing my own experiences, and learning from my colleagues about how to do this important job more effectively.