Hands Down Inspiring

By all accounts, a Parkinson's diagnosis would be devastating news. Knowing the road ahead -- and the ongoing need for a cure -- the next steps would certainly be difficult and confusing.

Choosing to pull out of the fear and into transformative action goes beyond inspirational. Michael J. Fox did it when he realized that he had resources to help make a difference for other Parkinson's patients. Florida-based dentist Dr. Robert Ettleman (pictured here, sitting at left)  did it when he saw that his skills could still transform and empower others... even if his skills, themselves, transformed dramatically.

Dr. Ettleman's Story: In His Own Words

I was diagnosed with Parkinson's disease six years ago, after a tremor in my fingers progressed to my entire hand. Many people can continue working with a tremor, but I knew I would have to give up dentistry, the profession I loved. I was fortunate that I quickly found a buyer for my practice (and that he let me come into the office and schmooze with my former patients). Still, there was an emptiness.

Yet I began to feel inspired by Michael J. Fox. If he was able to go from actor to advocate, I too could alter my path.

Soon my wife, Janet, and I founded Gulf Coast Dental Outreach — a community dental project that creates access to dental treatment for adult patients in need. We are a coalition of volunteer dentists and hygienists from the private sector, educational institutions, social services, county health officials and commercial supply and dental labs. In just 14 months we have provided $280,000 in 800 dental patient visits to low-income adults. Janet is CFO and I am Executive Director. It is a big job considering the size and growth of the organization, but I find time to speak to dental students about access to healthcare and social responsibility in healthcare. I'm also training dental assistant students in business management.

I guess you could say I'm still practicing dentistry. I've just taken a different road.

Talking To Tonic

Q: How did you initially react to and process your diagnosis?

A: When I first noticed my tremor, it was just a slight shake in my thumb, as if it was keeping time to music. I didn't realize it was a problem until I found I couldn't stop it at will. I was diagnosed with Parkinson's by a local neurologist, and the diagnosis was confirmed by the Center for Movement Disorders at the University of Maryland.

I knew very little about Parkinson's at first, but the impact struck me when I learned it was a progressive disease. Being a dentist, I knew I wouldn't be practicing my profession for much longer. I made arrangements to bring in another doctor into my office, to whom I ultimately sold my practice. He still let me come into the office and schmooze with my old patients, which was beneficial to me, because part of what I enjoyed about dentistry was interacting with people.

I didn't have plans immediately for the non-profit dental clinic I would later start; I just knew that I had to accept the fact that I would no longer be practicing dentistry in the traditional sense. Ultimately, an executive management class I attended at the Kellogg School of Management at Northwestern University helped provide me with the inspiration to start the clinic and find a new way to connect with my profession.

Q: What have you found to be people’s greatest misunderstandings about Parkinson's?

A:The greatest misconception is that Parkinson's is an "old person's" disease. I was diagnosed at age 48 with what was known as "young onset" Parkinson’s, Parkinson's affecting those younger than 50 years old.

The second misconception is that you need to have a tremor to have Parkinson's. In fact, symptoms can vary widely: one Parkinson's patient I know had had the disease for 20 years, and his only symptom is that he does not swing both arms when he walks. Often Parkinson's is associated with non-motor symptoms, affecting cognitive function or the autonomous nervous system.

Q: What can we do to support a friend or family member who has just been diagnosed with Parkinson’s... Especially an artist or professional who works with his/her hands, like you?

A: Families should encourage relatives with Parkinson's to be active, both physically and mentally. Patients should try to find an alternative for the knowledge they already have: an artist could teach, or, as I did, a dentist or doctor can get involved in the administrative side of non-profit medicine.

Q: Your work emphasizes “access to healthcare and social responsibility in healthcare.” How do you push to instill these values in dental students and health care reform?

A: Healthcare professionals have developed knowledge and physical skills that a limited number of people in the world have, and I believe it is their duty to share these skills with the world in some way. For example, even though dental students may graduate with large financial debts, there are still simple ways to give back to their communities with minimal burden.

Practicing healthcare professionals must separate their own financial goals with what is required by society, including volunteerism or becoming active in affecting policy change. I tell healthcare professionals that if they don't get involved in society's broader healthcare needs, government will, and that won't always be in the best interest of either patients or practioners.

Q: What do you do now to stay creative and connected to patients and beneficiaries?

A: I practice dentistry vicariously through the hands of volunteers at our clinic, Gulf Coast Dental Outreach, in Dunedin, Fla. Our clinic provides dental services to low-income adults who do not have insurance. My wife, Janet, and I manage all the operational functions and the development of the program. I enjoy coming into the clinic and meeting our patients and interacting with our volunteer professionals, and it feels great to know that I've been able to help make a difference in so many peoples' lives.

I am finally realizing that dentistry is more than just treating teeth. By giving patients new smiles, we are enhancing their self-esteem, and some of our patients have been able to go out and secure jobs when they otherwise could not have.

Q: Have you had the chance to meet Michael J. Fox?

A: Our paths almost crossed once in a hotel in Gainesville, Fla. I was there for a dental convention; he for the filming of the movie "Doc Hollywood." One night someone pulled a fire alarm to try to flush him out. I unfortunately did not meet him but I did find out later that, ironically, this visit was when he was first diagnosed with Parkinson's –- he had received his diagnosis at the University of Florida in Gainesville that same time.

Other than that, I have not met him, but have been in the same room with him twice. I hope to have a face-to-face meeting with him some time in the future, as he has been an inspiration to me.

Q: How do you stay involved with his Foundation?

A: My family and I have tried to support the Foundation financially. We believe it is a worthy cause and applaud its good work.

Robert B. Ettleman, DDS, MAGD, was the recipient of the Florida Dental Health Foundation’s 2008 Humanitarian Award for his work with Gulf Coast Dental Outreach.

In His Own Words published in the MJF Foundation's Spring Newsletter, courtesy of Holly Barkhymer, Associate Director of Communications at the Foundation.

Learn more about Tips for Parkinsons and stay tuned to Tonic all month for more inspiring stories about people fighting the disease.