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一个患肯尼迪病40年的老病人的建议

病友黑-阿米其检索到一篇一个患病40年的美国病人的体会.现将原文和译文发布于下:


Advice from a 40-year veteran of Kennedy's Disease


Yes, sometimes I am amazed that it has been forty years in the making. I have learned a lot about living with Kennedy's Disease over these last four decades.

A young man stumbled upon my blog the other day and wrote me. He is 34 years old and just diagnosed with Kennedy's Disease. He wrote, "I don’t really know what to expect or even how to deal with things. Can you recommend to me anything as far as exercising or vitamin/ supplements or really anything I can do to try to remain my best possible. My neurologist will only see me every 6 months and really hasn’t told me much other then I need to see a genetic counselor.  Any recommendations you may have will be appreciated  "

I responded:.

Exercise is important. Don't overdue, however. There is something called the 70% rule. Exercise to 70% of your capability. This will keep your good muscles and motor neurons strong and active without doing damage.

What your weight. As the condition progresses, it becomes more difficult to stay mobile. Keeping your weight down makes it easier to walk and 

sustain a good level of activity. 

Exercise and a good diet will go a long way in staying healthy. Inactivity and certain foods contribute to certain health conditions. Since we are less active, we don't burn as many calories and are more susceptible to certain conditions.

Safety first. When you are young, it shouldn't be too much of an issue, but I did a lot of damage in the early years because I didn't know when to back off.

Keep a positive mental attitude. 

Life doesn't end with KD; it just changes. If there is something positive about KD, it is the slow progression of the condition. You shouldn't observe too many problems in the early years. 

Seek out support from those of us living with KD. The KDA, the KDA Forum, Facebook, etc. Always remember you are not alone.

Most importantly, KD does not define who you are and what you are capable of doing. Observe, adjust and stay active. You might not physically be able to accomplish something the way you used to do it, but it can still be done or you can ask someone to do it for you.

What I thought of later:

Dr. Grunseich at the NIH recommended the following. Those of us living with Kennedy’s Disease should avoid high doses of B-6 because it worsens the neuropathy systems. The normal dosage in a multi-vitamin should be fine.

He also said that we should consider taking additional supplements of B-12 because it is good for the nervous system.

Swallow your pride. It is okay to ask for help when you need it. Others will understand and look forward to helping. 

The MDA Clinics are beneficial for those of us living with progressive conditions. There are clinics in most major cities in the U.S. and Canada. I am certain there are similar organizations in other countries. Join one of these groups. They provide excellent support and give you access to certain mobility aids through their "Loan Locker."

At some point when mobility has become an issue, consider taking Dutasteride. I feel it has helped me maintain my strength.

译文:

一个患肯尼迪病40年的老病人的建议


  是的,有时候我也很惊讶我竟然已经患肯尼迪病四十年了.在过去的四十年里,我已经学会了与肯尼迪病共存的许多东西.

  这天,有一个年轻人偶然发现了我的博客,于是给我写信.他34岁,刚确诊为肯尼迪病人.他写道:"我真的不知道该期待什么,甚至不知道对这个病应如何处理.你能推荐给我一些我能尽最大可能做到的事情吗?比如怎样进行允许的最大运动量的锻炼,如何补充维生素以及其他方面问题.我的神经疾病医生每6个月才能见到我一次,实际上他除了告诉我去询问一下遗传咨询师关于该病的遗传外,没能告诉我更多的知识.我将感谢你给我的任何建议".


  我回答道:"锻炼是重要的.但是不要过量.有一个叫做"70%的规则",即锻炼到你能力的70%.这样可以使你的肌肉和运动神经元保持强壮和活跃而不会造成损伤

你体重如何?随着病情的发展,病人活动会变得更加困难.保持你体重的下降会使你容易地行走并保持良好的活动水平.

运动和良好的饮食对保持健康有很大的帮助.不要太活跃和某些食物也能提供一定的健康条件.因为我们病人不那么活跃,所以我们燃烧的卡路里不多,而且更容易受到某些条件的影响。

  安全第一! 当你还年轻的时候, 病不应该是太重要的问题.但我在早期确受到了很大的损害,因为那时我不知道适可而止的道理.


保持积极的心态


患有肯尼迪病并不意味生活的结束,它仅仅是一种改变.如果对肯尼迪病有着积极的心态,它可以减慢病情的进展.早期,你不应该观察担心过多的问题.应寻求其他患病病友,肯尼迪病协会,肯尼迪病协会网站论坛,脸书等的支持.永远记住你不是孤独的.最重要的,肯尼迪病并不定义你是谁,你能做什么.观察、调整和保持活动状态.你可能不像以前那样有体力完成某件事,但是,它仍然可以做,或者你可以请别人帮你做.


我今后的想法


美国国立健康研究所的 Grunseich博士给出以下建议:患有肯尼迪病的病人应当避免服用大剂量的维生素B-6,因为它使神经系统恶化。正常剂量的多种维生素应该是很好的.他还说,病人应当考虑服用附加的维生素B-12,因为它对神经系统是有利的.放下面子,当需要帮助的时候就要请别人帮助.其他人会理解并愿意帮助你的.MDA的诊所对我们生活条件的改善是有益的.在美国和加拿大的大部分主要城市都有这种诊所.在其他国家我肯定也有类似的组织机构.参加一个这样的机构,他们会给你提供极好的支持,也能通过他们的“贷款锁”让你获得流动资金的援助.

当活动能力变得困难时,可以考虑使用度他雄胺.我感觉度他雄胺在保持体能上对我有所帮助.







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1 楼 | 2017-12-06 | 回复
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悠 然 南雨 閑雲㙒鶴 川盼 Bill 游侠阿甘
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谢谢分享,运动还是最好的办法。

2 楼 | 2017-12-06 |回复
这里提到了度他雄胺,但国内使用的很少,没办法听到更多的声音
手机网页 3 楼 | 2017-12-06 |回复
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度他雄胺和亮丙瑞林都是抑制雄激素分泌的药物.亮丙瑞林无效的病人使用度他雄胺也会无效.

4 楼 | 2017-12-06 |回复

谢谢@阿米其和倒扣碗老师为病友们做的工作!

从这位美国病友的分享来看,适度运动和良好心态十分重要。患病四十年,也是一个了不起的成就!

5 楼 | 2017-12-06 |回复
这文章对我们来说太有帮助了。我们要有肯尼迪病人的养生办法。还是:运动锻炼为主,药物治疗为辅,瘦身健康为上。坚强的意志,乐观向上的心态,积极与肯尼迪病抗争到底的精神。我为能行走而自豪。
手机网页 6 楼 | 2017-12-06 |回复

       感谢分享,和付出

      协会年会已开过,是不是象原来说的几个内容,有没具体的办法。

     记得有一篇文章说过:噻唑类抗生素对KD有效,我们能否请教大家,看可以试用,

                          多谢多谢,

7 楼 | 2017-12-06 |回复
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倒扣碗

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顶。

8 楼 | 05-14 |回复
倒扣碗
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回复: maxwu

这里提到了度他雄胺,但国内使用的很少,没办法听到更多的声音

度他雄胺和我们国内推荐使用的亮丙瑞林是一样的效果。
手机网页 9 楼 | 05-19 07:19 |回复

回复: 倒扣碗

度他雄胺和我们国内推荐使用的亮丙瑞林是一样的效果。

KDA有报道度他雄胺的测试说没有效果,亮丙瑞林日本说是有效果,纠结啊,度他雄胺成本便宜很多,购买和用起来也方便
手机网页 10 楼 | 05-19 19:59 |回复
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