網誌文章搜尋建議

給多發性硬化症MS病友和親友的建議:
如要搜尋站內相關文章可多利用
"搜尋此網誌的文章內容"的功能,這樣就可以快速的找到你想要得資訊而不需要從第一篇開始看了.
有關CCSVI(靜脈血管窄化及手術的資訊)可在相關連結以及相關MS blog內

推薦頻道:Gimmy a break

2009年7月31日 星期五

網路讀書會第一本: 窮的有品味-2.1



這裡提到了最重要的一件事: 改變觀念, 徹底改變自己原本心中的觀念, 反性自己的生活態度, 生活習慣和工作信念以及認知. 簡單的說: 就是改變自己!! 過去的我們因為觀念偏差, 導致壓力的存在和無法宣洩. 所以才成就了今日的情形. 所以從去年開始, 我打從心理上的自修, 從觀念上, 態度上, 慢慢的去調整, 修正. 希望能夠達到一個和諧平衡的狀態, 這種慢性病不是一天造成的, 相對的, 要得到完全的治癒, 也必須從根本下手!!, 我不知道改變一個33歲年紀的人的觀念, 需要多久(因為牛簽到北京還是牛), 但是, 只要開始去做, 都不晚. 而且, 也急不得, 就慢慢改吧!
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2009年7月30日 星期四

你並不寂寞也不孤獨

我的朋友們, 不論你們現在身體狀況如何, 或許你們有時候正處在人生的低潮, 而或許我也是, 或許遭逢病痛的折磨, 或許會因為其他的不順遂而煩心, 但是要記得, 你並不孤獨, 不要覺得寂寞. 來聽聽麥可柔情的歌, 想像一下, 好友都在你身旁.




你並不孤獨!
我在這兒陪伴你
雖然你在遠方
但我會一直在這裡陪著你
雖然你不在我身邊
但你永遠在我心中
讓我們彼此傾聽
讓我們彼此伸出雙手
不論白天晚上,就如同彼此在一起一樣
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2009年7月29日 星期三

網路讀書會第一本: 窮的有品味-2

第3章: 少點工作,多點人生!

其中有一部分提到 : 在那些精簡人事, 降低營運成本的公司, 其員工的發病率最容易攀升. 可笑的是, 現在哪家公司不會要求降低成本? 所以永遠都存在於恐懼和壓力之下, 是殘害免疫系統的元兇, 而多發性硬化症, 正是因為免疫系統失調所導致的結果!! 所以只有找到壓力的出口才能夠完全擺脫.


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網路讀書會第一本: 窮的有品味!

窮的有品味;
第二章 : 幸福乃態度問題!!

再閱讀了這一本書之後, 有一些觀念發現與我自己本身相關連, 同時也進一步發現與MS疾病可能產生的關聯, 藉由節錄部分文字內容來喚醒正在生病的病友目前所應該轉變的人生態度, 以及喚醒身體健康卻失去自己生活品味的人, 停下腳步, 細細思考一下. "完美"的必要性??
人生而就不完美, 為何要去強求100分呢? 和大家分享, 也希望大家能夠多多回應喔!!





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2009年7月26日 星期日

心情點播 : 面對MS的方法之一

就是聽聽和唱唱這首歌吧(原來麥可已經幫我們想出了方法^_^),
影片下面有對於歌詞有新一層的意義和解釋, 可以看看


They told him don't you ever
come around here
Don't wanna see your face,
you better disappear
The fire's in their eyes and
their words are really clear
So beat it, just beat it (1:你就閃吧,閃就是了, 閃MS或壓力越遠越好; 2: 擊敗MS, 對抗它)

You better run, you better do (你最好離開/跑開, 或者是盡你所能的去做)
what you can
Don't wanna see no blood,
Don't be a macho man (別當一個逞強的莽夫)
You wanna be tough, (你想要變強悍, 那就盡你所能的去做)
better do what you can
So beat it, (那就 閃吧 擊敗MS, 對抗它)
but you wanna be bad (但是不要變壞喔)

*Just beat it, beat it,
beat it, beat it,
No one wants to be defeated, (在這場對抗中,沒有人想要被打敗, 所以展現你的韌性和堅強吧)
Showin' how funky and strong
is your fight
It doesn't matter who's (這樣的遭遇沒有公平正義或誰對誰錯,不用抱怨)
wrong or right
Just beat it, beat it (就 閃吧 擊敗MS, 對抗它)
Just beat it, beat it
Just beat it, beat it
Just beat it, beat it

They're out to get you, (MS要來抓你, 你最好盡你所能的離開)
better leave while you can
Don't wanna be a boy,
you wanna be a man
You wanna stay alive, (在這場對抗中,你若想要生存下去, 就盡你所能的去做)
better do what you can
So beat it, just beat it (就 閃吧 擊敗MS, 對抗它)

You have to show them that (你已經證明了你並不害怕MS)
you're really not scared
You're playin' with your life, (但是不要虛度光陰)
this ain't no truth or dare
They'll kill you,
then they beat you
Then they'll tell you
it's fair
So beat it,
but you wanna be bad

(Repeat*)


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來開個網路讀書會吧?

因為這個病痛讓我閱讀了相當多在心靈上和哲學上的書籍, 近期我想也藉此分享給大家, 作為平穩心情的良伴, 也希望大家能夠多多給予回應喔!!
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默克藥廠向歐盟申請核准多發性硬化症的口服藥物上市

默克藥廠向歐盟申請核准多發性硬化症的口服藥物上市
Merck KgaA Asks EU to Approve Multiple Sclerosis Pill (Update1)

July 23 (Bloomberg) -- Merck KGaA asked European regulators to approve its pill for multiple sclerosis, the next step in the German drugmaker’s race against Novartis AG to market the first oral medicine for the debilitating nerve disease.

同時還有另外一家藥廠Novartis AG 也有同樣的動作, 兩家在競爭誰會成為歐洲第一家MS口服藥物的上市.

Merck submitted a marketing authorization application for the pill, cladribine, to the European Medicines Agency and plans an application to U.S. regulators this quarter, the Darmstadt, Germany-based maker of drugs and chemicals said in an e-mailed statement today.'

默克藥廠的多發性硬化症的口服藥 名稱是: cladribine

Novartis 藥廠的多發性硬化症的口服藥 名稱是: FTY720

The application “brings us closer to the possibility of providing an oral short-course treatment to patients with multiple sclerosis,” Roberto Gradnik, an executive vice president in Merck’s Serono division, said in the statement.

Merck presented clinical trial data at the American Academy of Neurology conference in April showing that cladribine halved the risk of relapse, with a side effect in some patients of depleting the white blood cells that protect the body from infection. Patients who took cladribine were less likely to see their multiple sclerosis progress and more likely not to relapse at all than those on a placebo, the two-year trial showed.

Five people were diagnosed with cancer, including one case of choriocarcinoma, a cancer of the placenta, in a woman who became pregnant six months after she finished the study.

Unlike existing injected medicines for multiple sclerosis, cladribine, approved to fight leukemia more than a decade ago, is taken for a few weeks out of the year in pill form. The medicine works by suppressing the immune system, blunting its attack on nerve cells. Merck’s pill could compete with an experimental pill from Novartis, FTY720, which disrupts the movement of immune cells into the bloodstream.

cladribine 是一種已經核准用來治療白血病(血癌)的藥物, 此藥物藉由壓制免疫系統來避免免疫系統攻擊神經系統的結果, 其結果能夠和FTY720的實驗結果相比擬. 能夠降低MS發作幾乎達到一半的機率, 其副作用是造成血液中白血球的降低

FTY720主要的作用是破壞或避免免疫細胞進入血液當中(或者是將進入血液當中的免疫細胞予以破壞分解).


感覺上不是和免疫抑制劑 Immuran 有點像嗎? 都會降低白血球的數目... ^^|||
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2009年7月19日 星期日

人在江湖, 身不由己! 的新意義

前一篇剛提到: "人在江湖, 身不由己"

後來, 突然之間又覺得這句話在現在又有了新的意義

1. 泛指 人生活在社會當中, 往往因為種種的因素如: 生存, 賺錢, 養家(妻小), 脫離貧窮, 光宗耀祖, 追求理想, 抱負 等等或其他複雜的原因, 而必須做出他不得不去做的行為 (大腦可以控制真正的身體,只是行為受限)

2. 新指 神經受損的人因為無法自由控制已受損的身體, 所以身體由不得自己控制 (大腦無法控制真正的身體)

3. 另指 因為第1點 而導致第2點的結果!! (大腦無法控制真正的身體)

坦白說, 大腦有的時候太強(運作太頻繁)不見得是一件好事情, 應該讓身體運作頻繁些比較好...印度的哲學思想家--奧修 曾經提到, 身體才是自己真正的主人, 不是大腦!!
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最近好累~

是應該再好好休息的時候了, 雖然: "人在江湖, 身不由己"

應該好好聽從身體給的反應, 不要在聽大腦的話了.

身體才是我的主人.

何時大腦才會乖乖聽話呢?

已也許到那時, 才能身隨性自在吧!!
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2009年7月16日 星期四

Multiple Sclerosis 101: MS到底有哪些症狀

Multiple Sclerosis 到底有哪些症狀?

有80%的MS患者 最常出現的症狀(疲累不堪)就是下面這一張最具代表性的圖片!!
Before I knew anything about the disease, when I heard "Multiple Sclerosis," I thought of the Jerry Lewis kids in wheelchairs. No, that's Muscular Dystrophy, but I didn't know.

Then, as a journalist, when I covered the Multiple Sclerosis celebrity events with movie stars, Dustin Hoffman introduced me to his mother-in-law, and organizers told me they had the disease, and I kept repeating, "Gee, you look great."

I didn't know what the face of MS was. Little did I know, I would soon be diagnosed with it.

For years, I went to neurologists and specialists for what I thought was carpal tunnel syndrome. I went to allergists for persistent headaches, optometrists for fuzzy peripheral vision and an acupuncturist for the persistent numbness in my right side.

It wasn't until I broke my right foot while walking the dogs in the Hollywood Hills and walked on it for half a week after breaking it in three places, and finally a doctor said I shouldn't have been able to walk on it. I was sent to a special neurologist, who I trust to this day—and then, after getting a second opinion from the world's leading experts at UCLA, I was confirmed as having Multiple Sclerosis.

The diagnosis itself is a difficult process, and I'll talk about that in a different column, but for now, let's talk about the possible symptoms.

Because MS is so different for everyone, and because it affects every patient differently, not all these symptoms are found in everyone who has it.

Symptoms generally appear between the ages of 20 and 40, and it's usually mild.

Here are key symptoms of the disease:


* General fatigue
* Tingling
* Muscle spasms
* Tremors
* Sensitivity to heat
* Numbness
* Dizziness
* Depression
* Loss of balance
* Forgetfulness
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include:

* Slurred speech
* Itching
* Sudden onset of paralysis
* Lack of coordination
* Spasticity
* Cognitive difficulties
* Bladder trouble
* Bowel control issues
* Sexual dysfunction
* Swallowing and speech difficulty
* Breathing trouble
* Seizures
* Constipation
* Coordination problems
* Diarrhea
* Eye pain
* Vertigo
* Emotional mood swings
* Hearing loss

For me, as I near the 10th anniversary of my diagnosis, my symptoms have included frequent urination, balance problems, irritating itching, constant numbness on my right side, noticeable stuttering, mental dullness, overwhelming drowsiness, muscle weakness and overall persistent pain. Fatigue is common in 80 percent of people with MS, so that's no surprise.

Right now, I have to be careful walking up or down stairs, holding the handrail to keep my balance. I have lost my vision in my right eye once, for a few days, which struck while on a Los Angeles freeway, and in a panic called my neurologist who knocked it out with an intense steroid shot.

Impaired thinking is what bothers me most about the illness. Every time I think I have a memory lapse, I blame it on the illness, but I'm constantly reminded that as we get older, that's a common issue. Problems with thinking occur in about half of people with MS. For most, this means slowed thinking, decreased concentration or decreased memory.

Another common complaint is unspecific aches and pains and abnormal sensations such as "pins and needles," burning, stabbing or tearing pains.

This is all due to the body attacking the myelin around the nerves of the body. It blocks the transmission of electrical signals to muscles (to allow them to move appropriately) and the organs of the body (allowing them to perform normal functions.)

Bottom line: A lot of people are misdiagnosed, or never diagnosed with MS, but have these symptoms. They are told they have the flu, or Crohn's disease, or irritable bowel syndrome, or chronic fatigue. Go get diagnosed, (we'll talk about the difficulty of doing that in a later column) and don't be afraid to suggest to your doctor that you may have MS.

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2009年7月14日 星期二

英國582名鼓手同時擊打爵士鼓爲MS病患募款


英國582名鼓手同時擊打爵士鼓創紀錄

582名爵士鼓鼓手齊聚一堂,同時擊打同樣的鼓點長達5分鐘,和諧程度如出自一人之手,令人咋舌,同時也創下了又一項新的吉尼斯世界紀錄。鼓手們聚集在英國 伯明罕的的國家大劇院,締造了世界紀錄。582名爵士鼓鼓手除了為創造新紀錄,更重要的是通過此舉能引起世人對多發性硬化症患者的關注。據悉,此舉共籌得善 款2萬英鎊。
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抽煙會加重MS的症狀!!

Patients who smoke appear to progress to severe disease more rapidly, study finds
研究顯示有抽煙的MS病患將會加速疾病症狀的嚴重程度!!
請勿等閒視之!!

吸煙對人體造成的眾多危害已為人所知。美國科研人員在最新一項研究中發現,吸煙還會導致多發性硬化症惡化。

  多發性硬化症是一種免疫系統錯誤攻擊自身機體的自體免疫疾病,根據病損部位不同,多發性硬化症可引起人體多種功能障礙。

  美國波士頓醫學院的研究人員在7月刊的《神經病學文獻》上報告說,他們對1465名多發性硬化症患者進行了調查。被調查者平均年齡42歲,患病平均時間為9.4年。他們當中的257人現在仍然吸煙,428人曾經吸煙但後來戒煙,780人從不吸煙。

  調查開始時,吸煙患者的多發性硬化症病情就已經比其他兩組人嚴重。隨後,研究人員平均每隔3年對調查者進行一次回訪,以確定他們多發性硬化症的發展情況。結果發現,與其他兩組人相比,吸煙患者的多發性硬化症的病情出現惡化的概率最高。

  研究人員由此得出結論,吸煙會加劇多發性硬化症的病情。

MONDAY, July 13 (HealthDay News) -- In addition to the well-known hazards of smoking, research now suggests that the dangerous habit causes a more rapid progression of multiple sclerosis.

The new findings are from a study that included 1,465 multiple sclerosis (MS) patients, average age 42, who had had MS for an average of 9.4 years. There were 257 current smokers, 428 past smokers and 780 participants who had never smoked.

At the start of the study, current smokers had significantly more severe disease and were also more likely to have primary progressive MS (a steady decline in health status), rather than relapsing-remitting MS (alternating periods with and without symptoms).

The Boston researchers tracked a group of 891 patients for an average of three years to identify how many changed from relapsing-remitting MS to secondary progressive MS, which is a steady decline that develops after a period of relapsing-remitting MS. During the follow-up, this change was seen in 20 of 154 smokers, 20 of 237 ex-smokers and 32 of 500 never-smokers.

"The conversion from relapsing-remitting MS to secondary progressive MS occurred faster in current smokers compared with never-smokers, but was similar in ex-smokers and never-smokers," according to Brian C. Healy of Brigham and Women's Hospital, Harvard Medical School and Massachusetts General Hospital, and colleagues.

The study was reported in the July issue of Archives of Neurology.

The findings "support the hypothesis that cigarette smoking has an adverse effect on progression of MS as measured by clinical and MRI outcomes," the study authors concluded. "Although causality remains to be proved, these findings suggest that patients with MS who quit smoking may not only reduce their risk of smoking-related diseases but also delay the progression of MS."


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2009年7月7日 星期二

MS的前兆:自律神經長期失調?

過去我還是研究生的時候, 就曾經因為便秘所苦, 那時候有一位肝膽腸胃科的醫生, 對我說有可能是自律神經失調導致便秘, 甚至當時他就說出了"大腸激燥症"此一名詞. 一直到第1次發病之前, 都還是存在這樣的情形. 而現在, 更嚴重了, 因為神經已經受損~ 不只是失調... 往往因為便便的問題影響情緒, 身心狀況, 甚至不太願意出遠門... 因為隨時有可能~~~控制不住, 這也就是我到目前還一直穿著"包大人"的緣故. 算一算, 我已經穿了將近400片的"包大人"紙尿褲. 這真是一筆不小的開銷啊!!
最近, 我的醫師建議我針對症狀做藥物控制, 轉給一位肝膽腸胃科的醫生協助.
有鑑於此, 為了讓更多人提早注意這種情形, 在自律神經失調的時候就要把身體調整回來, 以免進一步發展成自體免疫系統的失調......

我把大腸激燥症的資料列出給大家參考, 或許其他的病友也有相同的困擾, 不妨一試~

大腸激燥症

大腸激燥症可以表現便秘腹瀉或是同時有便秘及腹瀉,有些人會有不明原因腹痛.大腸激燥症的病人大腸鏡或直腸鏡都是正常.大腸激燥症好發於易失眠,工作壓力大及易緊張的病人.基本上要改善失眠,工作壓力及易緊張這三種情況大腸激燥症才能改善症狀.有時必須加上安眠藥,鎮定劑或整腸藥物.建議撥出一些時間做運動可以忘掉緊張情緒.腹痛,腹瀉可以改善.
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2009年7月4日 星期六

瑜珈 身體放鬆舒展的方法

有鑒於目前大多數人的工作都是利用電腦, 而且可能一天當中有7個小時的時間都是坐在辦公桌前, 也沒啥運動. 對於身體相當的不好

轉貼兩則影片喚醒大家對於身體的關心, 並且隨時體醒自己要多運動 多動動, 人活著就是要動!!

1. 三分鐘辦公室養生操 (這個瑜珈老師解說的相當清楚)



2.電腦使用健康手冊




一定要動一動喔!!
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2009年7月1日 星期三

熱天氣和MS的關係

Heat and MS: Okay, it's officially hot now...
熱天氣和MS的關係

Okay, it's official. It's hot. It's humid. This means that for those of us with MS we have a choice - stay inside and be kinda mad and anxious about summer, or go outside and be REALLY mad and anxious about summer.

對MS病人來說, 夏天是個又濕又熱的天氣, 也因為如此讓我們很苦惱又焦慮, 甚至抓狂!! (去年的夏天, 我幾乎是在病房或冷氣房度過, 常常因此汗流不止, 今年的我, 感受更是強烈. 溫度高的夏天也無法忍受, 溫度低的冬天也耐不住...哎~) 隨著溫室效應的巨變, 氣候溫度不斷的上升, 更要想想辦法來讓自己Cool一夏~~

I'm bringing up these articles again to remind us that, even though it is that time of year, there are some things we can do to keep functioning the best we can. It is also to remind us that, if we feel a little slower, a little bit MSier, forget and drop things more, not to be too hard on ourselves. Get a glass of iced tea, get in the pool or inside and take it easy.

即使如此, 我們還是要找到讓我清涼一夏的方法, 保持正常, 去喝杯冰水吧, 或者是泡一泡游泳池~

以下文章可以進一步閱讀:

1. MS病患對於熱的容忍度(這個一定要看) 因為天氣熱很有可能讓症狀更明顯!!

2. 10大MS降溫產品

3, 對抗熱浪的小秘訣

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