本帖最后由 菡萏尘雾 于 2011-9-20 16:56 编辑
Edward Kasarskis, M.D., Ph.D., is aprofessor in the Department of Neurology of the College of Medicine and theGraduate Center for Toxicology and Nutritional Sciences at the University ofKentucky in Lexington.
Edward Kasarskis，医学博士，肯塔基大学医学研究生院神经病学系毒理学和营养学教授。
In 1998, he was part of an American Academy of Neurology committeethat developed guidelines (a practice parameter) for ALS and is now studyingthe role of nutrition and assisted ventilation in this disease.
1998年，他参与了美国神经病学委员会制定ALS指南（实践性参考）的工作，目前在从事营养摄入和辅助通气支持在ALS中的作用方面的研究。
Q: Why should you worry aboutgood nutrition if you have ALS?
问：一旦罹患ALS，为什么需要担心良好的营养摄入问题？
A: The issue in ALS isusually not whether you’re eating a correct balance of foods. It’s a matter ofeating in sufficient amounts to maintain bodily functions.
答：对于ALS病人，通常的问题不是饮食是否营养均衡，而应该关注营养摄入是否充足，能否维持正常的机体功能。
People will say that their familymember with ALS eats so slowly that everybody else is finished eating and thedishes are cleaned up, and they’re still eating. It’s exhausting to have toconcentrate so hard to keep from choking, and you can fall behind on yourcalories very insidiously.
吞咽困难的ALS病人吃饭往往非常慢，其他家庭成员都吃完饭甚至餐具都收拾了，病人却还在吃。他们不得不保持精力集中以避免可能发生的呛咳和窒息，这会使他们筋疲力尽。不知不觉中，卡路里的摄入已经落后于消耗，会出现卡路里摄入的不足。
You won’t cure or slow ALS withnutritional supplementation if you’re already well nourished. However, you’llprevent accelerated deterioration due to nutritional insufficiency if you meetyour caloric needs.
尽管充足的营养补充并不能治愈或者减慢ALS的发展，但还是应该通过增加卡路里摄入以避免由于营养不足导致的加速衰退。
Q: Do ALS patients have specialnutritional needs?
问：ALS病人是否需要特殊的营养支持？
A: Wedon’t know how many calories to add if you have a lot of nonfunctional musclecontractions, such as fasciculations, cramps or spastic muscle tone. On theother hand, if you’re not as physically active, that factor suggests a reducedcaloric need.
答：很难确定如果病人有大量的非功能性肌肉收缩（比如：束颤、肌肉痉挛）时需要补充多少卡路里。另一方面，如果不是主动的身体活动，上述因素又暗示着卡路里需求量的减少。
The balance between the two is hardto predict. In our study we’re trying to develop a specific equation to predictthe caloric needs in ALS on a patient-by-patient basis.
两者间的平衡很难预测。研究中，我们试图开发一个特定的方程以病人为基础来预测其卡路里需求。
Q: Is a PEG — percutaneousendoscopic gastrostomy — tube the solution to taking too long to eat andfalling behind on calories?
问：PEG-经皮胃镜下胃造瘘术是否可以解决由于吃饭时间过长导致的卡路里摄入不足问题。
A: A PEG tube is ameans to an end. It gives you a second route to maintaining nutrition.
答：PEG可以达到这样的目的。它为病人提供了另一条保证营养的途径。
Q: Does it also protect againstinhaling food or liquids into the lungs (aspiration)?
问：PEG能否防止将饮食吸入肺部（误吸）？
A: When I first went towork on the practice parameter, everybody said that PEG would preventaspiration, but actually, it doesn’t really do that.
答：在我最初参与制定ALS指南（实践性参考）时，所有人都认为PEG可以防止误吸，但事实上，并不能完全避免。
Some of the aspiration comes fromsaliva, so you can still get aspiration pneumonia [infection from nonsterilematerial in the lungs] with a PEG in place.
一些误吸是由口水引起的，所以即使接受了PEG，仍然有可能患上吸入性肺炎[肺部非无菌性感染]。
Also, regurgitation of food intothe esophagus and mouth can occur with PEG, especially if you’re lying in bed.A PEG probably lessens the risk of aspiration, but it doesn’t completely preventit.
同时，食物回流进入食道和口腔的现象也有可能发生，特别是对于卧床病人。PEG可以减少误吸的风险，但无法完全避免其发生。
Q: Can you prevent aspiration bynot lying down after taking food through the tube?
问：在通过饲管注入食物后，不要躺着，能否防止误吸？
A: It’sprobably better to sit up for a while after a meal. But some people can’ttolerate large feedings and do better with a pump that puts in the liquidnutrition a little bit at a time around the clock. You have to individualizethis.
答：进餐后端坐一会儿也许会更好些。但有些患者无法耐受大量摄入食物，使用推注泵不间断地隔一段时间注入一些营养液可能更适合他们。需要进行个体化调整（不同病人存在一些差异）。
Q: Is there a point at whichit’s too late to get a PEG tube?
问：有没有明确的标准来判断什么时候需要接受PEG手术？
A: This is acontroversial point. In my opinion, it’s best to get the PEG in place beforethe FVC [forced vital capacity, a respiratory measurement] falls below 50percent of normal, for safety reasons. No absolute rule here, but a message ofadditional caution if FVC is low.
答：这是一个有争议的问题。在我看来，从安全角度讲，最好在FVC[用力肺活量，一个呼吸系统测量指标]低于正常值的50%之前接受PEG手术。虽然没有绝对的准则，但是如果FVC指标比较低，则需要引起额外的注意。
A low FVC means increased risk fromthe conscious sedation used during PEG tube insertion. There are reports ofsupporting respiration with BiPAP during the procedure.
较低的FVC指标意味着PEG饲管植入过程的麻醉风险增大。有在手术过程中使用BiPAP（双水平气道正压通气）进行呼吸支持的报道。
注：如果病人由于明显的吞咽困难，饮食量受到影响，出现过度和快速的体重下降，即需要考虑PEG。考虑客观测量指标的话，身体质量指数（BMI，=）少于18.5，被认为是一条红线。参考：http://bbs.uonew.com/viewthread.php?tid=789&extra=page%3D1
Q: Why do some people resistgetting a PEG tube?
问：为什么有些病人不愿接受PEG手术？
A: A big misconceptionis that if you have a PEG, you can’t swallow by mouth. That’s not the case. Forexample, you can get 90 percent of your nutrition through the tube, and theother 10 percent you can put in your mouth — whatever you find pleasurable. Youcan take small portions and eat with the family.
答：最大的误解是：一旦接受PEG手术，就无法通过口腔吞咽和进食。事实并非如此。举个例子，如果你愿意的话，可以通过饲管注入90%的营养，另外的10%，可以用嘴巴吃。虽然吃的少，但完全可以和家人一起就餐。
There’s also a conceptual hurdle.In the mind of the public, a feeding tube is a sign of being a debilitatedlittle old lady in a nursing home. It brings to mind that sort of image. But aPEG is not a heroic, end-of-life measure. It’s an insurance policy so you getadequate nutrition.
还有就是观念上的障碍。在普通大众的心目中，饲管容易给人造成一种假象：这仿佛是养老院中衰弱老太太的标志。实际上PEG只是一种保障足够营养摄入的手段，并没有其他特别的含义。
Q: Is there a big differencebetween PEG tubes and other kinds of tubes?
问：PEG饲管与其他营养支持手段是否有重大的区别？
A: PEG is the usual wayin North America to insert gastrostomy tubes.It involves using an endoscope, which is a lighted tube that goes down theesophagus and into the stomach, during the insertion.
答：PEG是北美常用的胃饲管植入术。植入过程要用到内窥镜，内窥镜是一个发光管，通过食道进入胃部以观察具体情况。
In England, tubes are generally placedusing a procedures called a RIG, radiographically inserted gastrostomy tube, orPRG, for percutaneous radiologic gastrostomy. You have the patient swallow somebarium and take an X-ray to see where the stomach is.
在英格兰，饲管通常通过一种被称为RIG（放射法植入胃造瘘管）或者是PRG（影像法经皮胃造瘘）的过程植入。病人需要服用钡餐然后拍摄X光片以确定胃部的具体位置。
These are about the same in termsof complications, but it makes sense to me to have a look through the endoscope.You have a little more control.
这些不同的方法在并发症和复杂性方面基本相同。不过，通过内窥镜进行观察对我而言是有意义的，可以地控制。
Q: What should you put in thetube?
问：可以通过饲管注入什么食物？
A: It’s much easier toget commercially available products than to grind up food. There’s a variety ofthem , like Ensure, Jevity, etc. You can usually findsomething that’s tolerable.
答：购买专门的营养制剂比自己研磨食物要便捷得多。这种食物种类很多，比如：Ensure（安素）、Jevity
（佳维体）等等，一般都能找到适用的品种。
注：可参考http://www.haodf.com/zhuanjiaguandian/surgestone_164197.htm
You need to take in extra water soyou don’t get dehydrated, and you can throw in a heaping teaspoon of Metamucil powder every day to prevent constipation.
需要额外补充水分以防止脱水，可以每天服用一满匙Metamucil （美达施）天然膳食纤维粉以防止便秘。
Q: What about the pleasanteffects of things like coffee and alcohol?
问：如果病人喜欢喝咖啡和酒，不会有什么禁忌吧？
A: You should try to dowhat’s pleasurable. You can put those things in the tube, or if you want tohave a beer by mouth, that’s OK. There’s no point in not enjoying what you find enjoyable.If I get ALS, I hope to have a couple of beers a day.
答：当然要多做让自己觉得快乐的事！可以将这些饮品注入饲管。如果想通过嘴巴喝点啤酒，也没有问题。没有理由不做可以让我们获得乐趣的事！如果我不幸得了ALS，我希望还是可以每天喝2杯啤酒。
内容来源于《MDA/ALS MAGAZINE》:http://alsn.mda.org/article/keep-calories-coming-expert-says
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