Willing but unable Source: Global Times [10:10 July 29 2010] Comments
Sheng Hongmei, one member of MDA visits a beverage company in a summer camp held by MDA on July 2. Photos: Courtesy of MDA
By Liu Sheng
Three years ago Wang Jia was a handsome graphic designer with a bright future ahead of him, today he sits with his head on an awkward angle while dribbling from the corner of his mouth. Wang Jia tries his best to tell his mother what he wants through moving his eyes and right forefinger. These are the only two parts of his body that he can still control. Though he is as conscious and aware as the rest of us, this 27-year-old man can no longer walk, talk, or even move his limbs. In the kitchen, his father chops boiled vegetables into tiny pieces so Wang Jia can swallow them more conveniently without vomiting. For the last three years this has been a daily routine for Wang Jia's family as he was diagnosed with Amyotrophic Lateral Sclerosis (ALS),one variety of Neuron Muscular Disease (NMD), which also includes Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA). NMD currently has no cure.
ALS, also known as Lou Gehrig's disease, after baseball player Lou Gehrig who was diagnosed with ALS in the 1930s, is a disease which damages motor neurons in the brain and spinal cord. When these motor neurons are damaged, the body can no longer receive messages from the brain, which causes the body's muscles to become smaller and weaker, and the body gradually becomes paralyzed. "It's just like a live fish slowly frozen in ice," said Chen Liqin, the director of the neurology department of the Children's Hospital of Shanghai.
Wang Jia still insists on designing posters like he used to, but now he needs the help of his mother. "Which word do you want to type in? Does the word begin with Q? W? E?" Wang's mother asks as she moves the cursor from one letter to the next. If Wang moves his eyes to the upper right, it means that the letter is wrong and that she has to move to the next one. According to kidshealth.com, even when ALS sufferers are in the most advanced stages of the disease, they can still see, hear, learn, and feel pain, pressure, and the sensation of being tickled.
Currently there are 4.5 million NMD patients in China, 50,000 of whom live in Shanghai. Because of the slow deterioration of the body, they seldom leave their homes or communicate with others outside their families. "As we are confined to wheelchairs we feel self conscious when we see the way people look at us," said Zhu Changqing, the founder of the Muscular Disease Association (MDA) in Shanghai.
As a muscular dystrophy patient herself, Zhu was diagnosed as a carrier when her brother was finally diagnosed at a late stage, after being misdiagnosed several times. When her doctor said that the chances of her developing the disease were slim, Zhu even felt relieved. However, in a sad twist of fate Zhu noticed that her body was not reacting normally when she reached her thirties. She suddenly discovered that she lost her balance when walking and was unable to lift anything heavy. Once when she was crossing the street with a load of books, she suddenly tripped on a small stone. "It was horrible; I just lay in the middle of the street with cars racing by me," Zhu told the Global Times. Eventually Zhu was diagnosed with muscular dystrophy.
However, Zhu has chosen not to let the disease limit what she can do. When she fell on the road, she pulled herself up and kept walking ahead, when she could not lift her legs to get on the bus she used a stool to support her. When her disability interfered with her job, as an associate professor at Shanghai Polytechnic University, and she could not write on the blackboard, she put her information on a PowerPoint presentation for her students. Zhu not only tries to live a full life, but also tries to help people like her. "It is a lot easier for me to talk about the past now, but at that time, I often felt ashamed when I fell over suddenly. I hated hearing others talk about me behind my back," Zhu admitted. "I have experienced the whole process from feeling hopeless to wanting to fight the disease. I not only want to live with the disease, but I also want to help others."
In 2002, Zhu set up the MDA in Shanghai. Zhu has access to much information about the disease through English medical journals as her mother is a doctor and has contact with many doctors overseas. Currently there isn't a professional association for NMD in China, nor is there easily accessible information for doctors and patients. "Lots of sufferers were misdiagnosed for many years like my brother," said Zhu, "I want to create a professional website for sufferers to learn more about the disease and live fuller lives."
Patients of MDA and their family members.
Rongrong is a 23-year-old NMD sufferer who has benefited from MDA. She is no more than 130cm tall and weighs only 30 kilograms as she began to show symptoms of the disease when she was only two years old. Although Rongrong is not sure what form of NMD she has, research shows that DMD and SMA are more common in people who show symptoms of the disease at an early age. Most of these sufferers do not live past 30 years old. Over the past 20 years Rongrong's condition has gradually worsened and the disease has left her virtually paralyzed. Now she can only move her arms forward, and all her limbs are bent inwards. "My legs feel like they are glued to the floor. I think about lifting my legs, but they won't listen to me," said Rongrong. Even the simplest movements such as lying down are a great challenge for her. "I cannot turn around at night, so I have to lie on my back, which makes my back hurt and my arms numb." Daytime is even more of an ordeal for Rongrong as she has to change positions many times. "I also need to put several napkins around my mouth to avoid being choked by my own saliva." Over the past 20 years, Rongrong's parents have traveled throughout China looking for therapy, and have tried both traditional Chinese medicine and Western medicine, yet Rongrong's condition continues to worsen each day. "Many doctors have never seen these symptoms before they look at my daughter as a rare case to study," said Rongrong's mother. In 2003, when Rongrong's mother saw the MDA website created by Zhu Changqing, she realized that her daughter may have NMD, as her daughter displayed all the symptoms. With the help of Zhu, Rongrong was finally diagnosed with NMD after an expert consultation. "I have been different from my peers since childhood, but when I am with other MDA patients, I don't feel embarrassed because we are the same," said Rongrong. "MDA also arranges trips to Expo and other scenic spots in Shanghai; I can see things that I never thought I would." When asked about the future, Rongrong kept silent for a moment and said, "It is far away and I am not willing to think about it, I live for each day." Rongrong has captured her feelings of living with NMD for more than two decades in a poem:
I am used to crying for life from the depths of my heart;
I ask my guardian angel to wake my body up;
From now on I won't burden people who love me and whom I love;
I will never curse at the cruelty of destiny anymore;
But I am left in pain and have an incomplete life while others live perfect lives.
Thanks to MDA, the 45,000 NMD patients in Shanghai finally have support and access to information that can make their lives much easier. "My brother and I are victims of NMD, so I know what the sufferers need most," said Zhu.
In the past eight years, MDA has conducted eight seminars with more than 600 experts, sufferers and their families, not only keeping sufferers and their families up to date with the most advanced medical information but also offering counseling for families. Another activity MDA organizes, in order for sufferers to be healthier both physically and psychologically, is volunteer students majoring in nursing and massage therapy from Fudan University and Shanghai University of Traditional Chinese Medicine to visit sufferers. "All of them are still students who don't have much practical experience. So I often ask them to practice on me first, and offer them advice on which parts of the body need the most attention," laughed Zhu. In 2008, MDA also founded the first electric wheelchair football team for NMD sufferers, "We want to show a positive attitude in fighting NMD, many young patients have never even stood on their own, this is an opportunity for them to play football like normal people. What's more, with the help of electric wheelchairs, their parents can be relieved to some extent," Zhu said.
Although MDA has offered much information and support for NMD sufferers in China, MDA is still not registered as an NGO. "Regulations say that all associations must have a governmental department as their supervisor, though we have prepared much material on the disease, no government department is willing to take charge of us," said Zhu. According to a representative surnamed Zhang from the registry office of the Shanghai Administration Bureau of NGOs, every NGO must have a authoritative agent to supervise its whole operation. However, the scope of MDA is too broad, as it not only includes medical treatment, but also rehabilitation. "The Health Bureau is in charge of NGO's medical treatment, and the Paralytics Committee is in charge of rehabilitation of the disabled. MDA needs to clarify its primary activities, " Zhang said.
An unclear future
Though MDA has the right to hold activities and seminars, it still needs public support. "We are a special group, it's not easy for us to go to school or work for the state of our health. However, many of us are not classified as disabled and cannot receive medical insurance or a disability pension," Zhu told the Global Times. "One reason for this is the official classification of disabilities, which only classifies people who have physical handicaps, even people who have lost a finger can be classified as disabled, but some of us who have to lie in bed everyday are not included because we don't have an obvious physical handicap." ALS not only brings pain to sufferers, but it also brings a heavy financial burden to the family, not to mention the pressure it puts on family members who need to provide 24-hour support." We are much more vulnerable than other disadvantaged people," said Zhu.
The scariest thing about NMD is that its causes are unconfirmed. According to Chen Liqin, NMD can be hereditary or caused by variations in a person's genes. So a sufferer may show no evidence of NMD in their family history, but still develop the disease because of environmental factors. What's more, it is hard to diagnose NMD quickly. According to Ma Jianfang, the deputy director of the neurology department of Shanghai Ruijin Hospital, even in developed countries like the US, it often takes one year to diagnose the disease. Due to the unclear symptoms which can be easily ignored, many sufferers don't pay enough attention to changes in their bodies.
According to the NMD Foundation, about half of all people with ALS live at least three years after they find out their disease, 20% (or one in five) live five years or more, and as many as 10% survive over 10 years. Stephen Hawking has been living with ALS for about 40 years ever since his diagnosis at age of 21 and is the most famous long-term survivor of the disease.