Yoshiko Okada is a physician and the head organizer of the 2nd Japan Parkinson Congress (JPC).
She’s also had PD for 40 years.
I met Yoshiko a few weeks ago when I presented PD Movement Lab at the Congress in Tokyo, and I was amazed by her condition. At 67, she walks through the streets of Tokyo with her Nordic poles, operates a dermatology practice three days a week, and for the last 20 years has commuted every week from her home in Shinkansen two and a half hours outside of Tokyo. She also travels abroad with her sister or husband once or twice a year, and she is especially fond of visiting rural Japan where she has the opportunity to be refreshed and de-stressed by the curative hot springs.
Intrigued by her long-term management of PD, I sat down with Yoshiko to ask her about her methods of treatment and her unusual success. Our conversation touched on how she personalizes the management of her PD, where she draws her energy from, and her thoughts on being diagnosed at age 27.
Pamela Quinn: You have had PD for 40 years! Yet you still live an independent and active life. To what do you attribute your longevity?
YOSHIKO OKADA: I like working.
PQ: What do you like about it?
YO: I like to talk to my patients; they keep me connected to the world and give my life a lot of meaning.
My work as a doctor–even though I am not a neurologist–also helps me manage my Parkinson’s. Thanks to my medical training I have a deep understanding of the body and this knowledge allows me to individualize my treatment in a very precise manner. To give one example, I understand the interaction between food and medicine very well, so I can test which diet-dose combination makes me feel the best, and then follow that regimen.
I believe I understand my reactions to my medication better than my doctors. I live with the disease. I experience it every day, and as a doctor I have the knowledge to respond to that experience in a sensitive and practical way.
PQ: Is there anything you do in particular to keep your mind and memory intact?
YO: I like playing games–Mahjongg, Sudoku, and I enjoy singing Karaoke. I like to cook and travel too. The games keep my mind sharp; Karaoke is fun, and I enjoy expressing myself; with cooking, I get to exercise my creativity. And traveling is both stimulating and relaxing.
PQ: Why do you think you got PD?
YO: I think I have a genetic propensity. I have a type of PD known as ARJP—Autosomal Recessive Juvenile Parkinson—that occurs predominantly in the Japanese population. My sister has ARJP too. In Japan, because we live on an island, our people have intermarried at a much higher rate than, say, in the U.S. This makes our gene pool more susceptible to certain diseases like Parkinson’s.
But I also can’t escape the feeling that I was in someway chosen by God to have Parkinson’s. My skill set and experience as a doctor allow me to provide a unique link between the patient and the medical community. I find meaning in that.
PQ: You just finished organizing the 2nd Japan Parkinson Congress. That was a huge effort. You had to recruit speakers, define topics, raise money, find a location, and advertise. Where does your energy come from?
YO: The more I work, the more energy I have. My work drives me. My friends help me too. I get excited over ideas about what can be done to move the Parkinson’s community forward.
PQ: Are there aspects of PD that you are thankful for and that have contributed positively to your life?
YO: It’s a hard question to answer because I’ve had it for the majority of my life, so I don’t really compare a life before PD and a life with it. I can’t imagine life without it. I can say I’ve made a lot of friends through it. It has allowed me to get to know many new people whom I would not have met otherwise.
I think a lot about my role as someone with PD who is both a patient and a doctor. I can approach the disease from a medical angle and an experiential angle. I exist in two worlds, and I think I can do a lot by bridging the gap between them. I consider my ability to help other people with Parkinson’s a gift.
PQ: What advice would you give a newly diagnosed person?
YO: You need to become your own doctor. You live with the disease every day. You need to understand what treatment works and what treatment does not work more than anybody else. Doctors just see one moment in a continuum. Of course, you need your doctor. Doctors are very important. But you need to know in a very detailed way how your medication, your diet and your overall lifestyle affect your Parkinson’s. And then you need to be able to communicate all of these things to your doctor. Treating your Parkinson’s needs to be a collaboration between you and your doctor.
PQ: If you went back in time and got PD again, would you do anything differently?
YO: No. I would do the same as I have done.
PQ: In each country a certain amount of resources goes towards care and a certain amount goes towards research. How are those resources currently distributed in Japan and do agree with this distribution?
YO: In Japan there are many people who are getting older. We need to put more money into care because the number of people with PD is increasing. We need to create a new PD support network to deal with the inevitable onslaught of this disease. This means better doctor-nurse-patient relationships, but it also means patients being more connected with other patients.
One idea I like is a network of Parkinson’s patients dedicated to caring for other Parkinson’s patients. People who are “on” could help others who are “off.” People with PD understand each other. They can identify what other patients need, and how to deal with the idiosyncrasies of the disease. Hospital workers don’t understand how Parkinson’s patients can do one thing one moment and not the next. We of course need increased hospital training as well, but patient-to-patient care could go a long way.
PQ: Well, I think you are remarkable, and you show us all what one person can do. Thank you so much for sharing your thoughts with me.
YO: Doh - itashi-mashite! (You’re welcome!)