Nightmare of paralysis with feeling: Lou Gehrig’s
Often called “the cruelest disease,” Lou Gehrig’s disease denies its victims any control over their body, rendering them immobile piece by piece as their nerves fall apart.
The disease has claimed quite a few notable people, including the physicist Stephen Hawking. It has also hit one of Korea’ s most promising leaders, a man who at 31 became the nation’s youngest professional basketball coach, Park Seung-il, now 34.
The former coach for Hyundai Mobis, Mr. Park was diagnosed in 2002 with Amyotrophic Lateral Sclerosis, the official name for Lou Gehrig’s disease. He has since been rendered almost completely immobile except for his eyes, eyelids, the third finger on his right hand and some of muscles in his face.
His prayers are short and direct: “At least leave me the strength to move my eyelids and pupils.”
Mr. Park used a special device called an “eye mouse, “which reads his eye movements to write on a computer, to send 40 e-mail messages to the JoongAng Ilbo from July through October.
It takes Mr. Park forty times longer to write with the eye mouse than it would by hand. A simple email takes three hours to write. “My eyes are bloodshot and crying, but I have to write,” he wrote in one message.
Mr. Park described how a mosquito would land on his arm. He could feel a tingling sensation as the insect begins drawing blood, but he can’t swat it away or even move his arm. He feels everything perfectly, however - perhaps too perfectly.
“I’m living in hell, “ he tells himself.
Mr. Park’s world is restricted to the same bed and same room, everyday, all day long. He has a television and computer, a dressing table, an aquarium and a plant to look at. He writes messages everyday on his Web site to appeal to his fans to help Lou Gehrig patients.
He sent emails to the JoongAng Ilbo to “let the public know of the state of Lou Gehrig patients by using the media.” But beyond that goal is the need to communicate; without communication, he wrote, he would no longer be human.
“On the way to the emergency room, I try to establish eye contact with as many people as possible,” he wrote. “I come home and try to remember these short moments to relieve my boredom.”
The moment when a sufferer realizes something is wrong can be unforgettable. In Stephen Hawking’s case, it was when he couldn’t tie his shoes. Lou Gehrig suddenly couldn’t grip his baseball bat. In Mr. Park’s case, it happened in 2001 soon after he had been named head coach and when he was abroad, training in the United States for his new position.
“I was lying on a bench press and trying to lift a light barbell, but it felt so heavy,” he wrote.
By June 2002, things had gotten so bad that he checked into the neurosurgery ward of Seoul National University Hospital. Mr. Park’s legs couldn’t stop quivering. After a series of tests on his muscles, blood and spinal cord, his chart came back to him with “ALS” written on it ― the abbreviation for Lou Gehrig’s disease.
Only two months later, he was classified as disabled. Eleven months later, he was confined to a wheelchair, and 20 months later, to his bed.
The process of collapse has continued: in May 2004, his respiratory system was paralyzed and an artificial respirator had to be attached to his neck. He lost his voice; The next seven months were spent in total silence.
Mr. Park wakes up everyday at 9 a.m. to take his breakfast though a tube connected to his abdomen. “Inserting a meal,” he calls it. After having his face washed, he writes e-mail messages and posts letters to fans on his Web site. At 2 p.m., he has lunch “inserted” and is assisted in stretching, to prevent his body from stiffening. After dinner, he watches television before falling asleep around midnight.
He can do nothing on his own, and his mother is almost always at his side.
In this state of silence and darkness, he meditated on the meaning of the words, “the cruelest disease in the world. “
“For a while, there was no hope whatsoever,” Mr. Park wrote.
It wasn’t until December that the silence ended, when Mr. Park’s sister paid 6 million won ($5, 714) for the eye mouse. The machine had to be imported, and is only the second such device to arrive in Korea. He says that despite the difficulty of using the mouse, it is his greatest hope.
“I want to raise awareness about the disease, “ he wrote. “I’ll never give up on life in this state.”
For the last three-and-a-half years he has run his Web site campaigning for better public awareness of Lou Gehrig’s disease. He spends about three hours every day writing e-mail messages to tell people about the preciousness of everyday life.
“Being able to speak is a blessing in itself, and I only realized it after I lost it,” he wrote to the JoongAng Ilbo.
A recent post on his site reads, “Even if your left hand were handicapped, you would still have things you could do that you wouldn’t be able to do otherwise. You can be a happy person.”
It’s an echo of Gehrig’s own words during his farewell speech at Yankee Stadium in 1939. “Today I consider myself the luckiest man on the face of the Earth,” he said.
Most family members of ALS sufferers burn out in a few years. The toll is indeed heavy: the patients require round-the-clock care and expensive machines to sustain their lives. The cost and the problems make it difficult to find medical caretakers willing to handle patients, and the government does little to provide support.
Mr. Park is a member of of the Lou Gehrig’s Disease Association. One association representative, Kim Jin-ja, 64, has been tending her husband for 12 years. She raises his pillow, cleans up his phlegm every 20 minutes and scratches his back.
When she asks her husband a question, he must blink to signal “yes.” She changes his position to prevent bedsores and stays awake until 3 in the morning to make sure her husband doesn’t drown in his own phlegm. She has spent all her savings and is living on borrowed money.
“The government pays only 150,000 won in welfare every month,” Ms. Kim said. “I protested to a public health center a while ago, but an official just told me I should be thankful. I was so mad I could have hit him.”
Mr. Park has considered going to the United States to seek medical help. Believing that nothing could be done to help patients in Korea and fearing that his family might go bankrupt paying for his medical care, he enlisted an American friend, Kim Mi-nam, to find him a treatment facility in America. His family, however, opposes the move and wants him to stay in Korea, where they can help him.
Help, although distant, might be on the way.
Last month, Mr. Park had marrow taken from his hipbone with a 3-millimeter syringe. Even as he felt his bone splitting, his face remained placid, his body perfectly still. The marrow will be used in a clinical trial for a stem cell treatment at Hanyang University Hospital, along with marrow from seven other patients suffering from the disease.
“This is a trial, not a treatment,” Dr. Kim Seung-Hyun said.
by Lee Kyu-youn, Limb Jae-un