Parkinson's, once taken as "an old person's disease," is beginning to afflict the youth.
At the age of 22, Huang Chunyan started to experience an abnormal stiffness in a facial muscle. At 30, he was diagnosed with Parkinson's disease. It was so rare to have this disorder at such an early age that his doctor was hesitant in giving out the diagnosis.
At a time when most of his peers were at the peak of their career, getting married and prepared to welcome the birth of a new life, Huang lost control of one side of his body — his left hand and left foot could barely move. At the worst point, he began to have hallucinations.
Plunging into the disease
Parkinson's is the most common among people over 50; the average age at which it occurs is around 60. In recent years, however, it has started to afflict large numbers of younger people, the youngest of whom is reported to be only two years old.
The symptoms of Parkinson's disease are mostly mild at the beginning, but as time progresses, it gets much worse.
Qing Yan, a native of northeast China's Liaoning Province, witnessed how his father 's health deteriorated as the disorder's symptoms took its toll.
"Initially, we thought it was a chronic disease and if he took medication regularly, the situation would improve."
In the first five years, the disease seemed to be mild and medication worked. Three to four hours after taking a small dose of medicine, his father acted like a healthy person – no shaking and no stuttering. He farmed the field, took up household chores and played mahjong with his old friends.
With physical symptoms come psychological problems. Many patients suffer from depression as cognitive functions worsen. Though Qing and his family stayed positive, his father, on the other hand, plunged into depression. The stiffness in his movement and pain in his muscle were apparent signs of the decline of his health.
Many people when first diagnosed with the disease go through denial. Huang Chunyan did not raise the issue with his family in the first five years. Refusing to acknowledge the disease, he didn't even seek medical help. Impairment in movement evolved into complete loss of physical mobility and hallucination – the most dangerous stage of Parkinson's.
The burden on caregivers
As the disease unfolds, the immense pain is transferred to caregivers, as patients demand 24-hour attention and care.
Lulu, a caregiver in a hospital in China's coastal city of Tianjin, said the greatest pain that patients go through is that though they are clear about what they want, their physical limitations prevent them from moving freely. Such patients are thus likely to get emotional as they grieve for the loss of their abilities.
The frequent mood swings and periodic temper tantrums of such patients makes it incredibly difficult for caregivers.
Qing Yan's mom, who has never complained for a single minute since his father contracted Parkinson's, said she could hardly bear it any more after taking care of him for 10 years. His father would turn angry easily, and direct his rage at the caregiver at any time.
On top of frequent mood swings, the fact that caring for patients with Parkinson's is a demanding and time-consuming job drives her to the verge of collapse. Since her father cannot swallow, when it's meal time, his mom would hold a bowl of porridge to spoon-feed his father. At night, she would hold his hand every time he gets out of bed to use the bathroom.
"Maintaining a stable mood is of crucial importance to patients with Parkinson's disease," said Lulu, the caregiver. She said the greatest difficulty lies in striking a balance. Giving in to every demand the patient has is unfeasible, but rejecting the request would result in patients suffering from extreme self-doubt.
Medical bills piling up
While there is no cure for Parkinson's, symptoms can be controlled through medication, and in later stages, surgery may be advised.
The lack of a cure means that patients are likely to develop a life-long dependence on medications. Qing Yan recalled that his family spent more than 500 yuan (75 U.S. dollars) on medicines at the outset of his father's illness. But as his father's immune system deteriorated, frequent trips to the hospital was unavoidable – immune booster shots, nutrient injections, etc. Every month, around 20,000 yuan (2980 U.S. dollars) would be spent in the hospital.
For patients in the latter stages of Parkinson's, they sometimes have to undergo Deep Brain Stimulation (DBS) – a surgical procedure to implant a device that sends electrical signals to brain areas responsible for body movement. Cost for the surgery ranges from 100,000 yuan to 350,000 yuan and the battery can last for five years. Afterwards, another operation would be needed to change the battery.
It would be impossible for a normal family to afford medical bills like this, Qing said. The company his father works for reimburses 70 percent of the medical bill, but for many other families, reimbursement is not an option. Huang was only able to pay the medical bill through crowdfunding launched by his classmates.
After the DBS operation, Huang Chunyan, now at the age of 38, has recovered: He can walk and talk, and now, he runs an online support group for those who suffer the same disease. But Qing Yan is not that lucky: More than 10 years after being diagnosed with Parkinson's, his father passed away.
For the three million patients with Parkinson's in China, their stories need to be heard.
(Pseudonyms are used in this story as requested by interviewees.)