An interview with Katsura Suzuki from Life Design Institute for PwP Japan: An expert on the dilemma with the perspectives of a patient and a researcher. Japan is entering a period of super low birthrate and an aging society on December 16, 2023 by George Ackerman, Ph.D, J.D.
Born in 1969 in the Tohoku region of Japan to a father who was a metal refining engineer and a mother born in a Japanese musical instrument store.
My father was a transferee and I moved to the Kanto area and the Tohoku area.
Left home at the age of 18 to pursue medical school, but due to a lack of money for education, I enrolled in a public pharmacy university. With a master’s degree, I joined a pharmaceutical company as a researcher position.
In 2006, after giving birth to my daughter, I was not back in good shape and discovered that I had difficulty moving the left half of my body. I also suffered from vertigo, nausea, and diarrhea. In 2015, I was discovered that the cause of her long-standing discomfort was due to Parkinson’s disease. A type of disease in which there is no tremor.
🔳Tell us about your background
I have been engaged in drug discovery and exploratory research for 27.5 years in a pharmaceutical company. I have done many things such as exploring unmet medical needs, creating research plans, establishing methods for screening compounds, establishing animal disease models, and managing research progress.
Knowledge of basic and clinical research in obstetrics and gynecology, endocrinology, cardiology, immunology, neurology, etc., animal experimental techniques, biological experimental methods, high-throughput screening, measurement of molecular binding and quantity using absorption and fluorescence.
I also served for a long time as a member of the animal experiment ethics review committee.
Licensed as a pharmacist in Japan, Class A Hazardous Materials Handler Title. and Wine Expert of the Japan Sommelier Association.
Member of the PD Avengers Research Committee from Oct 2021.
Start PhD course at Neurology, Juntendo University Graduate School of Medicine in April 2022.
The book is the result of reading and discussing the Declaration of Helsinki with patient citizens we met at the Institute for Medical Development and Infrastructure (Ji4PE ; ji4pe.tokyo : 医療開発基盤研究所). It was published by Spring Nature on November 14, 2023.
🔳Tell us about your organization.
I am the only person in my organization. When I decide on a project, I look for collaborators.
2 people launched “Life design Institute for PwP Japan” in 2020, and we gave it this name at that time, but I am the only one left in the core.
🔳What is your passion and how did you become involved in Parkinson’s disease awareness and hope for a cure?
I have a background as a researcher and pharmaceutical industry person. However, once I finished my master’s degree and entered the corporate world, I was not allowed to publish due to intellectual property protection, I had a hard time getting a PhD, and unfortunately, I also got sick and missed that chance. Because of that regret, I am now enrolled in a graduate course for a PhD in medicine, but I also realize that at my age, getting a PhD does not make much sense, except for getting research funding.
First of all, the average patient does not really care whether I have a PhD or are proficient in research. How far will I, myself, be able to continue my research? Will I be able to submit papers?
I am also in a position where I have to strictly adhere to pharmaceutical advertising regulations, so I am not able to spread publicity, and I am wondering how I can do advocacy here in Japan.
As a research theme, I first wanted to find out why I have Parkinson’s disease. From there, I thought that I might be able to elucidate the common risks for people who have similar genetic predispositions, lifestyles, and attributes to mine, and prevent the onset of Parkinson’s disease. In particular, I thought about collecting accurate data in the hope of creating a world in which my daughter and others who, at the time, were willing to work with me would not suffer from Parkinson’s disease in the future.
However, the hurdle is that disease-modifying actions are difficult for patients to understand. The sooner we start disease modification, the better, but it is also difficult to prove that disease modification is really effective in the first place, and it is hard to know where to stop the treatment last. There are so many dilemmas.
Medical data are defined differently by different doctors, patient reported outcomes are measured differently by different patients, and even in the advanced stages of the disease, the same patient may fluctuate greatly during the course of a day.
Both in the real world and in virtual space, the platforms for collecting data are created by able-bodied people, and this is a big gap for patients with incurable diseases. The Internet is becoming more and more individualized, and people feel trapped in a cage of information. Those who are comfortable with that do not come out of that cage. Even if we call out to them, they will not listen. I myself am fighting against the flood of information and trying to broaden my spectrum.
While I am fighting in this way, various regulations have emerged in the virtual space as well, and if I was worried about the brainwashing of AI and the problem of reaching information, now I am worried about the regulations in the opposite direction.
However, we live in an age where information can also be retrieved if we want to go and get it.
From disease mechanisms to social movements, from micro to macro and their networks, various issues are being revealed and solutions are being sought.
🔳What is your goal for Parkinson’s patients?
- my goal is also to “end” Parkinson’s disease. Perhaps those with young onset want to end Parkinson’s. However, since YOPD are in the minority, our voice is not heard. In Japan, where “don’t bother others,” “the stakes are high,” and ” not to speak up” are regarded as virtues, it is difficult to know the true meaning of these words.
On the other hand, some Japanese patients say they want to live with Parkinson’s disease. They are not necessarily saying that they want to end it. I don’t know which attitude ie happier.
I would like to report their journey in Japan, which is about to be plunged into an ultra-aging society with a very low birth rate.
- One of my smaller goals is to eliminate the stigma of Parkinson’s disease patients and raise their social status. To establish a job that can be done because of Young onset Parkinson’s disease.
- Maintaining a universal health care system is a difficult task in Japan, which is facing a super low birthrate and aging population. In particular, we are looking for ways to ensure that the next generation does not lose their vitality. I was thinking about how middle-aged and elderly people who have become ill can contribute to the younger generation, and it was to leave experience, knowledge and data behind.
- From a researcher’s perspective, please don’t split hairs about science. We are a minority, but we are doing our best despite the public complaining about it. From a patient’s perspective, I just wish that researchers could be a little more sensitive to the feelings of others. If you have not experienced it yourself, you have little insight. (Well, I have not experienced normality, so I don’t know how normal people feel. I guess we’re both in the same boat.)Still, I believe that basic research is still an honest attribute.
- We are translating Ending Parkinson’s Disease into Japanese. I am looking for a publisher in Japan for this book. We aim to publish it.
- From disease mechanisms to social movements, from micro to macro and their networks, various issues are being revealed and solutions are being sought.
🔳What type of training do you do and for how long?
The only physical training I do is walking. However, I have resumed playing golf this year and would like to go a little more. Occasionally, I also go to play table tennis, which my fellow patients invite me to.
I also feel like I am doing a lot of neuromodulations by trying my best not to be seen as a Parkinson’s patient on the outside.
I want to try to look cool.
At conferences and research debriefings, I always ask questions. I am interested in listening to the presenter and understanding immediately. And by asking questions, I exercise my brain and check my abilities.
I try not to worry about Parkinson’s itself. I try to focus on my concern about the medical and research systems for Parkinson’s disease.
The rest is continuous dopamine stimulation, and choice of medications that may have disease-modifying effects (of course, not adding more than necessary). Beer, wine, good food.
🔳What effect does it have on Parkinson’s patients?
We don’t know yet. I would like to do that study. However, I believe that patients who participate in studies tend to be more aware, curious, and active by nature, so they tend to have disease-modifying effects to begin with.
🔳What would you like to see as future goals for the program?
I don’t think I will ever be the kind of model that people want to aspire to as a patient. I don’t think anyone can understand how I feel, so on the contrary, I would like to be the one and only (laughs).
However, I hope that in the future, those who had Parkinson’s disease before it ended will model themselves on advocates other than myself and will get well.
🔳What events do you participate in?
We participate in national and international neurological conferences.
If we are asked, we participate in table tennis and music events organized by patients.
I also participate in parties were healthy friends drink alcohol.
🔳How do you support your caregivers?
Since being diagnosed with PD, building relationships with potential caregivers has been a perpetual challenge. This is the current situation in Japan. The number of caregivers is decreasing and the number of people living alone is increasing. Unfortunately, we have no effective ideas. We know we need data, and we have to use digital, even though we suffer from privacy leaks and brainwashing by social networking sites. Is it safe to turn to big tech alone there, too? There is also the fear that we are not. It is a dilemma. We need to show society the results of our experiments and the results of our patients.
In addition, regulations such as the EU AI law add to the dilemma, and I am struggling with mixed feelings.
Personally, I would like to continue my efforts to eliminate care or shorten the duration of care.
🔳How can I contact you? What does your website look like?
🔳How can others also become advocates for recognition?
Right now (December 14, 2023), the drafting of guidelines for dealing with Deep Brain Stimulation machine failure is a high-priority issue.
🔳What do you think is the key to effective advocacy?
To keep focusing on what you, yourself, can advocate for as a personal matter. It is hard to put on someone else’s shoes. I try to put them on and burn them out, which is very inefficient.
🔳 How can I raise funds to support a cure for Parkinson’s disease?
In Japan, there is no donation culture and little interest in research, making it difficult to raise funds for research. Therefore, the only way is to apply for taxpayer-funded grants. The screening process is done by people who are bright in science and medicine, so I think scientific knowledge is still necessary.
🔳What other activities, besides exercise and alternative therapies, do you engage in to improve and support your daily life?
As mentioned above, I attended medical school graduate school, to obtain PhD, and was trying to increase my credibility, but this was just another act to add only honor, and I am struggling with a dilemma.
I have also returned to work after a leave of absence, both for my tuition and for reasons of having to make ends meet and pay for my family’s education and living expenses.
As a member of the Global Alliance PD Avenger Research Committee, I do my best to attend midnight meetings in my poor English.
🔳Why should someone without Parkinson’s be concerned?
Currently, Alzheimer’s disease is the leading neurodegenerative disease. And Parkinson’s disease is number two.
However, Parkinson’s disease is increasing more rapidly than Alzheimer’s disease worldwide.
You could become one. Even if you don’t, your family may get it, increasing your caregiving burden.
Quality of life evaluation is very important.
Alzheimer’s disease, however, preserves motor function. These neurodegenerative diseases must also be accounted for. This cannot be explained in this space and will be discussed elsewhere.
🔳Do you have any family members or relatives with Parkinson’s disease?
🔳If there was one song that could tell us more about you or symbolize your life, which song would it be?
One More Light Linkin Park
🔳What is the last word or quote you would like to leave the Parkinson’s community with?
In the words of Michael J Fox, “Cures don’t fall from the sky. You have to grab it yourself.”
I added, “The information is there, by your own choice. If you don’t have the answers, be prepared to have to go looking for them forever.”