Stop shaking

ET, a painful chronic dis­ease, can be treated suc­cess­fully.

China Daily (USA) - - FRONT PAGE - By LIU ZHI­HUA li­uzhi­hua@chi­

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.

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