Home>Service> Global Love of Lives Award> 15th Fervent Global Love of Lives Award> The Doctor of Motor Neuron Disease—Chen Yin-hsueh
Communicating to the world with just one toe,
voicing the rights of the disadvantages with passion
      I still have one toe left—Challenging the extreme, living a life of love
 
      Taiwan Motor Neuron Disease Association (TMNDA) Director Chen Yin-hsueh has always been an intelligent and passionate person, as well as a public figure both on campus and in public benefit groups. Yin-hsueh breezed through Taichung Girls’ Senior High School and the Department of Biology at National Taiwan Normal University, and after a year of teaching school, she went with her husband to the United Stated for their graduate studies. After she gave birth to her children, in order to assist her husband in obtaining his PhD degree and MD, and to be there for her children’s growth, she gave up, without no regrets at all, her own pursuit of a PhD degree from the Institute of Microbiology at the University of Illinois in the U.S. Just when she was about the reap the rewards of her sacrifices, Yin-hsueh suddenly found that she couldn’t hold her chopsticks, and often fell down walking. The doctor’s diagnosis was that she was suffering from motor neuron disease, and might have only two years left to live.

      Today, Yin-hsueh has been fighting the disease for 17 years. Even though the disease has robbed her of her speech and movements, she still faced it with courage. With the unceasing accompaniment and loving care of her husband Jun-yao Chang, her parents, and children, Yin-hsueh has succeeded in summoning great determination in training herself to use the only organ she is still able to move, her left toe, and type on the computer. She has persisted in overcoming physical obstacles to communicate with the outer world, and continue to voice the rights and needs of the socially disadvantaged. At the same time, Yin-hsueh has risked her life on many occasions by flying overseas on long flights, in order to attend international conferences on behalf of the Association, to act as delegate for the patients suffering from TMNDA in Taiwan, and to bring back the latest and best in medical resources. She is a true “Doctor of motor neuron disease.”

Born of a prominent philanthropic family, the best home education one can ever have
      Chen Yin-hsueh, female, was born to a prominent philanthropic family in 1952. Her grandfather had attended private school for a few years, and was an austere, rigorous person, who was well beloved by the neighboring community and his own family members. He often resolved conflicts between neighbors, and reached out to the poor and needy. Her father inherited her grandfather’s love of helping others, and served as the neighborhood magistrate. Born into such a traditional philanthropic family, it was no wonder that Yin-hsueh is upright, compassionate, generous and unhesitant in helping others, no matter what the trouble. In school, Yin-hsueh was outspoken, enthusiastic, actively participated in many activities, and was one of the popular students on campus. In junior high school, she belonged to the drum corps, and, in senior high, went one to become a member of the nationally acclaimed Taichung Girls’ Senior High School marching band and honor guard. This all goes to show Yin-hsueh’s incessant energy, creativity and natural affinity.

Celebrated in the Overseas Chinese Community—Invited to meet with former U.S. President Bush
      It was at this time that Yin-hsueh met her future husband Jun-yao Chang, and the two married soon after Yin-hsueh’s graduation from university.

      After graduating, Yin-hsueh taught at Li-ming Middle School in Taichung City, and because of her responsible and diligent attitude, she got along well with her students, and broke the spell of students’ never being admitted by their top choices when several of her students excelled academically and attained their goals. A year later, Yin-hsueh decided to pursue further studies abroad together with her husband, and despite knowing that her students would miss her, added to the headmaster’s attempts to retain her, she still embarked upon her journey to the United States with blessings from all around.

      For her graduate studies, Yin-hsueh made it all the way into the PhD program at the Institute of Microbiology at the University of Illinois in the U.S. But with the consecutive birth of three children, Yin-hsueh decided to give up her studies in order to assist her husband in obtaining his PhD and MD degrees. During her time in the U.S., whether it was for school, for her career, for marriage, or even for the community, Yin-hsueh was always positive, enthusiastic and responsible. She dedicated long time efforts in promoting communication and exchanges between the Chinese medicine physicians in China and the U.S., actively participated in several groups such as the Taiwanese Association and Southern California Overseas Chinese Business Association etc., and was even invited to a state dinner with the then U.S. President Bush for her work in the Asia-Pacific Community.

The 17 year struggle with motor neuron disease
      In 1995, just as life in the U.S. began to take a turn for the better due to her dedication and loving care, Yin-hsueh suddenly discovered that she couldn’t hold her chopsticks, nor walk without falling. The doctor’s diagnosis revealed that she was suffering from motor neuron disease (commonly called freezing disease in Taiwan), and may only live another 2 to 5 years. At the time, her youngest son was only 10 years old, and her eldest was just a freshman at the University of California Berkeley. Yin-hsueh, in her despair, refused visits from all of her friends. Her eldest son, who had just gone to college, feared that the days he could spend with his mother were numbered, and made the decision to transfer to the University of California Los Angeles. After he graduated, he lived at home for two years to personally take care of Yin-hsueh, and it was not until the medical school he had been admitted into gave him last notice that he left home again to pursue his studies.

      From the day she had been told she had two years left until now, seventeen years have gone by. Although not Yin-hsueh can only communicate by blinking and typing with her toe, but she uses MSN and webcams everyday to talk to and watch over her children, who are all living abroad. Her husband has stayed by her side through all these years, and has taken Yin-hsueh on trips all around the world, to North Korea, Mongolia, Egypt, South Africa, Japan and India, all in order to keep her spirits and vitality up, and to create special memories for the family.

Striving to share her love, using one single toe to voice the wants of the needy
      Even after losing her abilities of speech and of limb, the optimistic, persevering Yin-hsueh still passionate engaged herself in many events and activities. In the U.S., she attended patient support groups, and helped to fundraise. After she returned to Taiwan in 2001, warm-hearted Yin-hsueh joined the Taiwan Motor Neuron Disease Association, learned to type with her toe, and wrote to share her experiences with others. She often uses her own physical condition to encourage others to love life and to inspire others in turn, and although it is extremely difficult for her to leave home, Yin-hsueh has on many occasions acted as delegate for the TMNDA in international conferences. She regularly accompanies the social workers of the association in their patient visits to talk to and encourage them as well as their families. She has personally written to the Mayor of Taichung City, Mr. Chi-chiang Hu, to advocate the rights of the physically disabled living in Taichung, an act that caught the attention of the municipal administration, and consequently brought on improvements in the city’s welfare benefits.

Pushing for MND patient special hospitalization in Taichung, advocating the benefits of stem cell research
      In order to further improve patient rights, quality of care and of accommodation, Yin-hsueh has served on the board of directors and supervisors as well as the medical council of TMNDA, and has helped to voice many central concerns from a patient’s point of view. Yin-hsueh believes that patients must speak for themselves in order for unsatisfactory situations to improve. She has pushed for the establishment of the MND patient ward at the Taichung Hospital Department of Health, and provided an opening for the planning and execution of the MND patient ward at Kaohsiung Municipal Union Hospital.

      Whenever the association needed to discuss and examine their projects and policies, Yin-hsueh never refrained from giving them her time and dedication, her professional knowledge and experience. She has flown long-distance flights many times, at the risk of bringing on complications upon herself, and represented the association at international conferences in Yokohama (2006), and Orlando (2010), in order to bring back information on hospitalization and care from advanced countries. She even braved a freezing trip during February of 2009 to Japan in order to attend the International Symposium on “Home Treatment for ALS Patients in East-Asia” to share her experiences in home care, and to bring back more information on the latest medical resources.