ET, a painful chronic disease, can be treated successfully.
When someone says “ET”, many people will perhaps instantly think of the alien in the 1982 American science fiction fantasy movie E.T. the Extra-Terrestrial. Very few know that “ET” also stands for essential tremor, a painful chronic disease.
As its name suggests, the disease is a nervous system disorder that causes uncontrollable and rhythmic shaking. It can affect any part of the body, especially the upper limbs. Sometimes it affects the head and the voice.
The disease can occur at any age, but is more common among those in their 40s, and those older than 60. It impairs daily functions. As it worsens, even drinking water from a cup without a strawbecomes difficult.
Among the general population its incidence rate is between 0.3 and 1.7 percent, and among people older than 45 and people older than 65, the incidence rates are 5.5 and 10.2 percent, respectively, says Li Jianyu, a senior specialist in neurology and movement disorders at Xuanwu Hospital in Beijing.
Also, many patients, especially seniors, do not seek treatment when they first suffer the tremors because they think it is normal for older people to suffer the condition.
“Essential tremor may be novel for many, but it is not that uncommon,” says Li.
“It is a pity that many people, including medical personnel, are not aware of the condition.”
ChuShuqin, a 49-year-oldwoman from Hebei province, knows well the cost of ignorance about the disease.
OnOctober 9, Chubecamea “global hero” when she participated in the 2016 Medtronic Global Heroes Program, and completed a full marathon— about 16 kilometers— within 2 hours and 33 minutes.
The global program, which has been in operation since 2006, annually selects 25 long-distance runners who suffer from the disease but are benefiting from medical technology, to represent their countries to run the marathon event in Minnesota, in the US.
“Through running the marathon I hope to make more people aware about essential tremor, and I hope to prove that you can enjoy a normal life with proper treatment,” says Chu.
Her story goes back almost 10 years when her hands started shaking a little. She then attributed this to overwork and fatigue, and didn’t pay much attention to it.
But as the shaking occurred more often, once even during a dinner when she found herself unable to pour baijiu into other people’s cups. She also found that she could not write properly, or cut nails, and finally decided to seek medical help.
Her doctor then diagnosed her with Parkinson’s disease and prescribed medication that had no effect.
As her condition worsened she went to another hospital where a doctor suspected she had essential tremor and suggested she visit the Beijing XuanwuHospital.
At Xuanwu Hospital, one of China’s top facilities for Neuroscience and Gerontology, Chu was finally diagnosed with essential tremor.
However, despite the delays, Chu is relatively lucky when compared with most other patients.
Most of the others typically go through up to between 10 and 15 incorrect diagnoses before finally being diagnosed with essential tremor, say experts.
That is because doctors in smaller towns are not aware of the disease, and also because it is very tough to distinguish between essential tremor and Parkinson’s disease, especially in the early stages, says Li.
Neither blood tests nor medical imaging can help diagnose essential tremor, and the diagnosis typically is based on the doctor’s observation of the patient, and the way the patient responds to medication, says Li.
For instance, he says, Parkinson’s patients tremble all the time, and often the tremors are accompanied by other symptoms, such as stiffness and sluggishness in movement. On the other hand, those suffering from essential tremor, especially in the early stages, shake only when in motion, he says, adding that sometimes patients can have both the diseases at the same time.
As for treatment, the disease is not curable, but can be controlled and managed with proper medical intervention. The problem, however, is that many patients do not understand the conditionandare reluctant to accept medical intervention.
Medication can alleviate the symptoms for some patients. But for patients who cannot perform daily activities due to the tremors there are surgery options. One of these is thalamotomy— the precise destruction of the thalamus, a tiny brain area that controls some involuntary movements.
Another option is deep brain stimulation, through which doctors insert a probe to transmit painless, electronic pulses to the thalamus to interrupt signals from the brain.
The electronic pulses are generated through a pacemaker implanted in chest, and are transmitted through a wire that connects the pacemaker and the probe.
Thalamotomy is not reversible, and if conducted on both sides of the brain, may cause speech and cognitive problems.
DBS is a better choice for younger patients who need to work, or patients who have tremors in the head and the voice, says Li.
However, many patients reject the idea of implanting medical devices into the brain, says Li.
Chu recalls that she refused to undergo the surgery at first simply because she knew too little about the disease and feared that the device would make her look like a robot, besides the financial cost.
Then, suffering from depression caused by her condition, Chu summoned the courage to undergo the DBS surgery in 2009, which was successful.
She resumed running after the surgery, something she had done since young but had to give up due to the disease.
She did not hesitate to apply for the marathon program, when she sawit onMedtronic’s publicWeChat account.
Not long ago, she was removed from an essential tremor WeChat group, because she tried to introduce the DBS treatment to other patients.
“Ordinary people know very little about essential tremor, and there is misleading information out there,” says Chu.
“I hope sufferers make fewer mistakes and have better access to authoritative, regulated, and effective treatment,” she adds.
Top: Chinese essential tremor patient Chu Shuqin finished a full marathon within 2 hours and 33 minutes during the Medtronic Twin Cities Marathon held last month in Minnesota. Above: Chu poses with fellow runners.