An interview with Nobuko Haneji on Advocacy on October 3, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
Because I was diagnosed with PD in 2012, I found an adult guardian for my youngest brother and a care home for right hand paralyzed mother.
I stopped working as a part-time sign language interpreter and substitute elementary school teacher.
I joined the PwP group Olive and was asked to audit. I host zoom meetings for officers.
Can you tell me about your advocacy?
I joined Facebook group “Parkinson and life” and learned about WPC Kyoto where I stayed in hotel and participate as a volunteer.
Mr. Andy Butler WPC Kyoto ambassador asked me to join PD Avengers and I joined their research arm.
I started zoom haiku meeting for PwP.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I recruited pharmacist Ms. Katsura Suzuki from the FB to PD Avengers who told me that we PwP should learn by ourselves. I joined the research arm with her, and I study at a patient education organization about R & D of Farma company. I invite PwP to ZOOM haiku meetings to share experiences.
What type of goals do individuals with Parkinson’s have when working with you?
Katsura decided to enter graduate medical school. She seemed overworked and must take a rest for months. She is on the way to work and study in balance.
Mr. Matsuno who was the producer of PwP cast movie joined PD Avengers as he met Andy at Kyoto. After he passed away, the movie was finished and will be shown from October 7th.
Ms. Misa Yamaguchi nutritionist attended WPC BCN who built network in the world on Parkinson’s issues. She presented a poster session with the university R & D team. She lost customers after she opened her having Parkinson’s but took RSB Coach license and open her own business sport supporting nutrition.
What type of training do you have with advocacy?
11 years training of tai chi and yoga. I got some body flexibility. I learned body movement/
RSB. I joined RSB Demo at WPC Kyoto. I joined zoom RSB class. Its blog control PD gives useful formation on PD. Ms. Akemi Tsuno who was volunteer manager of WPC Kyoto registered the control PD as NPO. I met PwP in Japan on zoom RSB.
What effect can your advocacy have on an individual with Parkinson’s?
In haiku group, some of them support newly developed PwP movies. Some want to manage haiku meetings. All of them contribute haiku to 2nd haiku journal which i edit to print in book style. They gathered and felt not alone. The Haiku meeting enriched their life. They gain power for the next challenge.
What would you like to see as a future goal for your advocacy?
As I put in my poster conclusion, I felt anything, and anybody goes well for advocacy.
You can invite guests to your afternoon tea. We PwP feel that we are not informed well enough.
For example, I started Olive zoom meeting one on one I listened to my friend’s. complain about weak DBS battery and advised to work out with me on zoom. Now, she and others lead a group of 5 PwP (People with Parkinson’s) when I’m in off state.
What events do you participate in?
WPC Kyoto volunteer,
WPC BCN poster presenter,
October 22nd Halloween Walk by Control PD,
every month PD ZOOM haiku meeting,
every week Olive zoom meeting,
What is the key to effective advocacy?
Empathy is the key word, put yourself in other’s shoes.
If you had one final statement or quotes you could leave for the Parkinson’s community?
Nelson Mandela said, “it always seems impossible until it’s done.”