A voice for the Parkinson’s community We met Jiwoon Yang, legendary voice actor and South Korean icon, to hear about his experiences with Parkinson’s, becoming an advocate, and his hopes for better Parkinson’s awareness in South Korea. I would like to bring people together Jiwoon’s career has spanned 50 years, and has included several iconic voice roles, from James Bond, to Vito Corleone, to Indiana Jones. In person, however, he is far more approachable than these characters would suggest. We sat down with him and his wife, Sook-Kyung Yoon, to talk about their experience with Parkinson’s. The first time that they noticed something was different was during a saxophone lesson that the couple took together. Sook-Kyung was clearly proud of her husband’s musical talent; ‘the teacher was always complimenting’ Jiwoon’s saxophone playing. This changed, however, and Jiwoon found it increasingly difficult to produce the necessary volume on the saxophone, as well as finding it difficult to press the keys. This progressed, and eventually Jiwoon noticed other symptoms, such as difficulty buttoning up his shirt and using chopsticks. This led Jiwoon to have a check-up with his doctor in 2014. He was initially told he did not have Parkinson’s, but after a year of tests and scans, he was finally diagnosed in 2015. “I was really intimidated,” Jiwoon says. Finding out that Parkinson’s was incurable became a “burden on [his] mind”. Jiwoon’s mental health suffered, both as a result of his diagnosis and the challenges which he faced living with Parkinson’s; “everything which included detailed hand movements in everyday life became interrupted… I was intimidated by being in public and wanted to avoid having to see people, and I got depressed from time to time.” Jiwoon, however, was determined not to let the symptoms of Parkinson’s control him; “I decided that if this could not be cured, I would like to bring people together.” Since then, he tells us, he has “been able to endure and overcome” many of these challenges, through “exercising, reading the Bible, and listening to K-pop with my wife”. For 50 years, I didn’t get tired and enjoyed myself For Jiwoon, the biggest challenge came when he found that he could no longer continue in his beloved profession as one of South Korea’s most famous voice actors. It was Sook-Kyung who, having seen the difficulties which he faced, first suggested that he retire; “In my opinion, my husband is the best voice actor in Korea… in 2017, when I heard his voice, I felt my that husband’s voice wasn’t what it had once been.” Issues such as shaking the script during recordings and the deteriorating quality of his voice began to affect Jiwoon, and eventually, with a heavy heart, he decided to retire. Of his career, Jiwoon recalls that “50 years really passed like a dream. For 50 years, I didn’t get tired and enjoyed myself. I always enjoyed myself.” Sook-kyung nods with a smile. “He was always the top.” This decision did not come lightly for him. “I understand my wife’s feelings, but on the other hand, it was hard for me to come to terms with it”, Jiwoon says, noting that “If I were to record an hour-long broadcast, I finished it in an hour and five minutes. Recording without any bloopers is a habit I kept all my life.” Jiwoon was the top voice actor and narrator for decades in South Korea, with the nation hearing his voice throughout many famous shows and films. Retiring from such a prominent position was difficult for Jiwoon. His fans were similarly upset upon hearing the news of his retirement, as Jiwoon had been the voice of some of their best loved characters. Jiwoon’s last day of recording was an emotional time for him. “As I read the last manuscript, I started to think, “I won’t be able to sit in front of this microphone again,” and it was getting me all worked up. When I completed the last script, and I came out, the production team clapped and said, ‘You did a great job’. They hugged me, and gave me an appreciation plaque and flowers. Oh, I can’t express it. I cried a lot.” Having to give up his cherished role as South Korea’s premier voice actor due to Parkinson’s was inexpressibly difficult for Jiwoon. “It made me angry to think, ‘I’m kneeling in the end because of Parkinson’s’, and it hurt my pride.” With the support of Sook-Kyung, he made the transition to retired life, leaving behind a glowing cinematic legacy that has touched the lives of each and every South Korean. The joy and vitality are indescribable Since retiring from voice acting, Jiwoon has become determined to raise awareness of Parkinson’s in South Korea. In an ageing society such as South Korea, Parkinson’s is a rapidly growing condition. “In Korea, there are 120,000 people who are officially registered with the Parkinson’s association”, he tells us, “but it’s quite likely that there are actually more than that.” Many people likely live with Parkinson’s without realising it, simply due to a lack of awareness. “When people get older, they just think, ‘Oh, it’s because I’m old, I guess my walking is getting worse’.” There are several measures that Jiwoon and Sook-kyung would like to see implemented in South Korea. Some are as basic as raising awareness; as Jiwoon sagely points out, “ If Parkinson’s is a well-known disease nationwide, people can go to the hospital if they feel a little stiff. If they don’t know, they may not be able to get a diagnosis, even if they’re uncomfortable.” This would have the double effect of increasing quality of life both for those who are aware they have Parkinson’s and those who don’t, as increasing numbers would bring about the necessity of greater access to support and treatments. This is the second issue that Jiwoon raises: “There aren’t many programs that specifically organise and provide professional help for people with Parkinson’s, whilst those that are there are not widely shared with the Parkinson’s community.” This lack of support can make living with Parkinson’s comparatively more difficult, and Jiwoon and Sook-Kyung are dedicated to improving this. He is also highly aware of the effect of Parkinson’s on mental health, and as such is pushing for more than simply access to reading materials. “It is natural to provide professional knowledge. The problem is that most patients are not motivated to look into and read professional knowledge and information when it comes out.” To Jiwoon, written material is not enough to help people feel hopeful when it comes to Parkinson’s treatment. “Even if someone tells you that you can find a pot of gold, you won’t believe it until you can see it, and that’s the same with treatments. However, if you experience the benefits of the treatment yourself, the joy and vitality are indescribable.” This question of accessibility to innovative treatments, and giving people with Parkinson’s the opportunity to actually experience them, is close to Jiwoon’s heart. His dedication to greater inclusivity, seeing people with Parkinson’s being more actively involved during the study and development of these treatments, is something that will continue to be central to Jiwoon’s activism. Where is the flower that blooms without shaking? Jiwoon has had a tough time adjusting to life with Parkinson’s, but with the support of Sook-kyung, he is trying to use his experience to help others, enacting positive changes. From awareness of Parkinson’s, to increased support and access to innovative treatments, the couple have several goals that they would like to see become reality in South Korea, and with his status as one of South Korea’s most recognisable, respected and beloved voice actors, his high profile stance on Parkinson’s is sure to yield positive results. In a talk for the 2017 KBS Radio Acting Awards, Jiwoon shared a poem by Do Jung-hwan, entitled ‘Flowers that bloom when shaken’. He tells the audience that he relates to this poem, and that “it’s up to myself to figure out how to live with Parkinson’s well. I’ll do my best.” This optimism and determination is characteristic of Jiwoon; his parting words to us are “I will work hard to overcome Parkinson’s; I hope to see you all again on screen.” Where is the flower that blooms without shaking?Any of the beautiful flowers of this worldall bloom while being shakenThey shake on stems that grow uprightWhere is the love that goes without shaking? Where is the flower that blooms without being soaked?Any of the shining flowers of this worldbloom as they are soakedSoaked by wind and rain, petals bloom warmlyWhere is the life that goes without being soaked? We wanted to bring back a smile to Jiwoon’s face, by giving him an opportunity to get back what he had missed the most; sitting in front of a microphone and using his voice to brighten up people’s lives. His skill, passion, and dedication to his profession were evident during our interview, and we asked him if he wanted to collaborate with Charco and help in building our community by becoming the voice narrating our videos for Charco Korea. He graciously agreed to help us, and we went to a voice recording studio, where he showed us his immense talent with great satisfaction. Despite his Parkinson’s, his voice was as special as ever, and throughout the recording we could see the biggest smiles from him and his wife. We look forward to working more with Jiwoon in the future, as he uses his talent to bring smiles back to people with Parkinson’s across South Korea and the world. Thank you to Jiwoon and Sook-Kyung for doing this interview. To watch our video interview, please click here.