10 Tips for New ALS Patients--给ALS新病友的10条提示

菡萏尘雾 · 发表于 2011-12-20 13:51:21

本帖最后由菡萏尘雾于 2011-12-20 14:09 编辑

http://www.als-mda.org/publications/als/images/als9-3_Hubben-b_w.jpg

Will Hubben was diagnosed with LouGehrig’s disease in July 1998 and died in May 2004. In November 2000, Willcreated The ALS Research Digest, an electronic newsletter designed to provideinformation about the disease to the ALS community. Shortly before he passedaway, Will provided ALSA with a number of coping devices he used that helpedhim immeasurably. In his tips for newly diagnosed ALS patients, Will shared what helped him along the way and someadvice that he wished he had followed sooner rather than later.

Will Hubben，1998年7月确诊罹患ALS，2004年5月去世。2000年11月，他创办了一份电子通讯：《ALS研究文摘》，为ALS病人群体提供疾病相关资讯。在去世前不久，他为ALSA（ALS协会）提供了一系列曾经对他帮助极大的设施。在他给新确诊病人的提示里，Will分享了一路走来对他有帮助的建议。其中一些，他希望新病友们越早采纳越好。

I was diagnosed with ALSin July 1998. Looking back at almost six years of living with ALS, I canidentify a number of coping mechanisms that have helped me immeasurably, aswell as a few that would have helped if only I’d followed the advice of thegood people at my ALS clinic.

我于1998年7月诊断为ALS。回顾这差不多6年的ALS病程，我确信一些应对机制不可估量地帮助了我，另外，如果我当初听取其他热心病友的建议，还有个别办法也肯定会有好处的。

1. Be compassionate to yourself.

1、善待、体恤自己

If you’re like me, your firstreaction to being told you may have ALS was shock and fear. We all go throughwild emotional swings when we hear such dreadful news.

如果你与我一样，在被告知可能罹患ALS时，肯定也会感到震惊和恐慌。在听到这样可怕的消息时，我们都会经历一段情绪剧烈波动的时期。

Allow yourself to feel denial,grief, anger and whatever else you feel without criticizing yourself for it.It’s natural, and necessary, for you to experience powerful emotions. Manyfeelings will arise again and again as ALS progresses.

允许自己有否认、伤心、愤怒等等情绪，但不要因病而自我苛责。前者是自然的，后者是必须的，这样就会逐步体验到情绪逐渐变得强大。

This too will pass. Being gentlewith yourself is a big help.

这些痛苦都会过去。对自己宽容一些会有巨大的帮助。

2. Reach out to family and friends.

2、与家人和朋友们保持接触。

Many people will want to help, butnot know how. Talking openly to a family member or friend about what’s going onfor you will help both of you cope.

很多人想寻求帮助，但却不知道如何寻求。应该向家庭成员或者朋友明确说明将来会发生什么，这对双方都是有帮助的。

Ask for help with preparing meals,running errands, taking you to the movies or doing household chores. Buildingyour support network will help you and your primary caregiver, and it letsfamily and friends get involved.

准备膳食、跑跑腿，带你出去看电影，处理家庭琐事等等，这些都需要寻求帮助。建立一个由家庭成员和朋友构件的帮助关系网，会对你和你的主要护理者都有帮助。

3. Learn about ALS.

3、学习、了解ALS。

Knowledge is power. ALS tends tomake people feel powerless. Learning all you can about the disease, aboutsupplements and drugs that might slow progression, and about current research,can help empower you.

知识就是力量。ALS往往会使人感到力不从心。学习所有你可以获得的知识和资讯，包括疾病本身的、可能延缓疾病进程的（辅助性）药物、目前的研究等等，这些都会给予你力量。

Sharing what you learn will helpraise awareness about ALS and the need for more research money.

分享你所了解的，会唤起大众对ALS的意识，同时对募集研究费用有帮助。

4. Do everything you can for yourhealth.

4、做一切对你健康有好处的事。

Improve your diet, quit smoking,take up yoga and/or meditation, practice positive visualization, get plenty ofsleep, develop your own regimen of helpful vitamins. Every little effort willhelp you, both physically and mentally.

改善饮食，戒烟，练习瑜伽和/或冥想，进行积极的心理暗示，多多睡眠，服用对保养有益的维生素。每一点细小的努力都会对你的肉体和精神两方面有所帮助。

5. Take charge of your treatment.

5、为自己选择的治疗和护理负责（做自己的主人）。

Pick your health care providerscarefully. Remember: They work for you.

仔细挑选健康护理提供者。记住：他们是为你工作的！

Talk to your primary care providerand your neurologist about any vitamins and supplements you may want to take.Ask lots of questions. If a health-care professional doesn’t patiently andrespectfully answer (or research) all your questions, fire that person and findsomeone else.

与你的神经科医生和主要护理提供者沟通想要服用的任何维生素和辅助药物。多问问题。如果一个健康-护理的专业人士没有耐心而态度恭敬地回答（或者研究）你的所有问题，开除他，重新找一个。

Don’t be passive about yourtreatment options. You’re always in charge.

不要被动地接受治疗和护理建议，你应该一直为自己负责。

菡萏尘雾 · 发表于 2011-12-20 13:51:53

本帖最后由菡萏尘雾于 2011-12-20 14:01 编辑

6. Develop a relationship with a major ALS center.

6、与某个ALS中心建立联系。

原文较不符合我们的实际情况，没有翻译。菡萏尘雾的建议：（1）通过好大夫网站，与樊东升、李晓光等权威大夫保持必要的联系，特别是当初诊断并不十分确定的病友。（2）与当地神经内科医生取得联系（可寻求当地其他病友的推荐），复诊与寻求用药建议会有极大的便利。（3）住所附近如有小的诊所，可与其中的主要负责人和护士建立比较好的关系。病人如有突发意外，受伤，或者需要简单的输液都会极大的方便。同时后期的吸痰等也需要护士的指导。

7. Do some things you’ve always wanted to do.

7、做一些你一直想做的事。

Take that trip to Europe, spend more time with your family, jump out of an airplane, write your book, raft the Grand Canyon.... Whatever it is, go ahead and do it. In a few months you may not be able.

去欧洲旅行，更多的时间陪陪家人、从飞机上跳伞，写自己的书，去大峡谷漂流……不管是什么事，去做就是了。也许数月之后，你就做不到了。

8. Find ways to help others.

8、想办法帮助他人。

One of the best ways you can help yourself is to help other people with ALS. Raise money for research, join advocacy efforts, volunteer for clinical trials, attend support groups and reach out to those who need emotional support.

对自己帮助最大的是去帮助其他的ALS病人。帮助研究募集资金，加入倡议努力，志愿参与临床实验，参与关爱团体为需要的人提供精神上的支持。

Giving what you can enriches your life as well as the lives of others.

给予别人帮助，让他们与你一起丰富自己的生活。

9. Practice hopeful, positive thinking.

9、实践乐观，积极思考。

Having a positive attitude in these trying circumstances really takes practice, but it’s worth it. Not only is your moment-to-moment experience improved, but most experts would agree you also improve your body’s resistance to disease processes.

在如此艰难的情况下还能保持积极的态度是需要练习的，但绝对值得。不只是你即时即地的经验得到提升，而且能够获得大多数专家的认同，也会提升你身体对疾病发展的抵抗力。

Remaining ever-hopeful helps me to enjoy my life, in each moment, as much as a hopeful person not facing ALS. There’s a lot of promising research going on in many different areas of investigation. Remember: Help is on the way.

始终胸怀希望帮助我享受生活，差不多和正常人一样。现在有很多有前途的研究和探索在各个领域进行之中。请记住：希望就在前方！

10. Stay ahead of the curve.

10、永远走在疾病前面。

Get a wheelchair when walking difficulties begin, even though you can still walk. Get a feeding tube before you lose weight. Begin using augmentative communication aids before you need them. Get respiratory support by using a BiPAP at night as soon as possible.

在走路困难开始困难的时候就准备轮椅，即使还可以行走。体重开始减轻时，考虑饲管。在沟通有问题之前就准备辅助沟通设施。尽可能早地使用双水平气道正压通气进行呼吸支持，特别是在夜晚。

By taking these and other steps early, you remain in control. No one with ALS regrets doing these things early; many regret waiting too long.

在自己还可以控制的时候，尽早按上面的步骤来。没有哪个ALS病人会因为做上面的事早了而后悔，而都是后悔等待和拖延的时间太长了。

内容来源于《MDA/ALS NEWSMAGAZINE》:http://alsn.mda.org/article/10-tips-new-als-patients&usg=ALkJrhiB_2eGp05VJefDfoOTgo3Mi_jDlw