面臨人生的巨變,你能做什麼

面臨人生的巨變, 不論是天災還是人禍, 又或者是疾病, 你能做什麼?

相信，最近的日本強震海嘯，讓大家重新體認大自然的無情反撲，更讓我們更加珍惜彼此周遭熟悉的人事物，把握現在和當下。

希望大家都能夠繼續不斷的走下去, 永不放棄直到最後, 一起加油！

面臨人生的巨變,你能做什麼

按摩緩解便秘的方法

附上一則按摩有助於緩解便秘的方法：

你基本上是在同一方向去的小腸為你按摩：由肚臍下方開始，向右按摩，然後往上（到肚臍上方的位置），再向左, 最終左側骨盆正上方。就是畫圓圈並且給予一致的壓力。重複數次。建議，在空腹-或 至少飯後2小時後按摩。

原文：
I did a little research on recommendations for abdominal massage and the general instructions seem pretty simple. You are basically are going in the same direction as the small intestine as you massage: start below your navel, to the right; move up, across (right above the navel); move down the left side and end up right above your pelvis. Use fairly small circles or strokes with consistent pressure - some people recommend light pressure, others say firm pressure is the way to go. Repeat several times. I saw several recommendations that this be done on an empty stomach - at least 2 hours after eating.

按摩緩解便秘的方法

最近國外在靜脈擴張手術一些病友的經驗

來看看最近國外在靜脈擴張手術一些病友的經驗

AWNIA MCLEOD, (Mt. Forest, ONTARIO, FEBRUARY, 2011)

"My fatigue level has improved greatly. I continue to amaze my husband Darren when he gets home from work and I'm still on the go. Unheard of before!!! My sensory or nerve pain has improved greatly. I wonder how I ever lived with it. I feel so much more alert and pulled together. I have been very busy these days. I have been feeling very well since my return home and I have been working very hard on my physiotherapy and am determined to strengthen this leg.
(Dawnia was liberated January 14 - dmcleod@wightman.ca This e-mail address is being protected from spambots. You need JavaScript enabled to view it )

PIERO SCARSELLA (Toronto, Ontario, JAN, 2011)

“I find that my leg strength is a little bit better, I am able to peddle my stationary bicycle longer. My balance is better so that now I can stand up straight, more or less, and keep my balance for a minute or two. My head feels clearer and playing with ideas and numbers is easier. This is good news for me because if all works out as we hope, one day I will go to work and pay taxes, so I will have to become a student again. If everything works out taking courses should be easier for me. Piero can be reached at pieroscarsella@rogers.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it

DIANA ZIMMER, LIBERATION PATIENT, (Toronto, Ontario, FEB, 2011):

“My head feels more clear.My blood circulation has improved and my hands, legs, and feet actually warm up now!!!I (Contact Diana at diana@dianazimmer.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it or through her website at www.DianaZimmer.com )

最近國外在靜脈擴張手術一些病友的經驗

天氣影響

史上最寒冷的冬天一直持續著，大多數人都渴望著夏天到來，但多數多發性硬化症（MS）患者可能不那麼想要天氣變熱，因為這會讓他們的症狀惡化，尤其是思考與記憶力等不甚瞭解的疾病症狀。
　　
　　根據美國國家MS學會統計，美國每星期約有200件MS新案例。麻木、四肢無力、有平衡和視力問題是MS較為人知的症狀，但思考與記憶力問題也很普遍。(美國在MS的病患數目上的成長率高的嚇人一星期有200件案例)
　　
　　神經學家Barbara Giesser醫師表 示，早在100年前就已經知道炎熱的天氣與MS症狀惡化有關，因為在有核磁共振造影診斷和質譜診斷之前，診斷MS的一種方法是「熱水澡」試驗，這是把病人 放在裝有熱水的浴缸中，如果症狀惡化就診斷有病；但不是所有的患者都會在天氣炎熱時症狀惡化，絕大多數的人有某種程度的熱敏感性。
　　
　　研究人員發現，MS患者在溫暖的季節時，認知測試的表現較差，非MS患者的表現則沒有季節差異，MS患者在比較寒冷的月份，思考測試成績比在溫暖的月份好70％。
　　
　　神經心理學家James F. Sumowski博士在檀香山舉行的第63屆美國神經醫學會的年會上發表這篇研究。
　　
　　目前還不清楚是炎熱的天氣影響了MS的病程，或是只是溫度惡化了症狀。Giesser醫師表示，熱似乎能減緩因疾病而受損的神經衝動。基本上神經是電纜，MS損壞了絕緣體造成神經短路，因此無法有效地傳遞訊號。如果受損的神經受熱，將導致更多的問題。
　　
　　對熱敏感的病人可以嘗試在溫暖的天氣時，喝一點冷水或是含冰塊。
-----------------------------------------
對於神經受損的人而言, 冷天和熱天都是一種折磨和考驗. 冷天身體會變僵硬, 熱天會大量出汗
是因為感覺神經受損而無法正確的判斷冷熱的感覺 （及感覺異常）.

更多閱讀：
熱天氣和MS的關係
天氣驟冷會讓肢體緊繃難受
掌握MS後遺症狀所給予自己的訊息表示...

天氣影響

默克的多發性硬化症藥物Cladribine未獲美國FDA批準

默克的多發性硬化症藥物Cladribine未獲美國FDA批準，后者要求前者進行更多分析與研究，以便更好地了解藥物的安全風險。

綜合媒體3月2日報導，德國默克制藥公司(Merck KGaA)周三(3月2日)表示，美國食品和藥物管理局(U.S. Food and Drug Administration,FDA)沒有批準其口服多發性硬化症治療藥Cladribine的上市申請。

上述決定令默克公司遭遇挫折，某個歐盟小組在上個月曾經確認了對於Cladribine的否定意見。

默克制藥在聲明中表示，FDA要求其進行更多分析與研究，以便更好地了解藥物的安全風險以及整體利益風險。默克計劃同FDA舉行一次審查總結會議，以便明確下一步的措施，并且探明現有數據是否能夠解決FDA提出的問題。

在歐盟做出決定之后，默克表示，依然承諾繼續并且完成Cladribine的臨床試驗，但多數分析師已經將此項藥品從其評估中移除。

Cladribine為全球首劑多發性硬化症治療藥品，但僅在澳大利亞與俄羅斯這樣的縫隙市場獲批上市。

作為Cladribine的競爭對手，瑞士制藥商諾華公司(Novartis AG)生產的Gilenya已經在美國與俄羅斯獲批上市，并且上個月獲得了歐洲藥物監管機構的肯定意見。

就先等諾華的Gilenya吧

默克的多發性硬化症藥物Cladribine未獲美國FDA批準

7個月了-7 months after Liberation treatment

在榮總完成靜脈擴張術後7個月

我的情況～ 可向前跑60公尺

Let's keep Moving!
Jimmy Jogger

7個月了-7 months after Liberation treatment

CCSVI和MS一些研究結果

美國水牛城大學對CCSVI和MS一些研究結果

過去認為HLA DRB1*1501 此一基因和 MS 有關.該研究者目的為找出是否CCSVI和此一基因是否有關連

相關論文全文可見：Chronic Cerebrospinal Vascular Insufficiency Is Not Associated with HLA DRB1*1501 Status in Multiple Sclerosis Patients

CCSVI和MS一些研究結果

每個人都要珍惜和家人在一起的時刻

想想之前從畢業之後離家遠赴他鄉至第3次嚴重發病前已有5-6年的時間，在前段的時間中，所追求的算是立業吧，而在年紀稍長，且可望安定之後較後段的時間內則是成家。

對於一個人一生所追求和經歷的的不過是成家，立業，生兒育女，而後完成了一段生命和人生的目的。對於一個離家的年輕遊子，最簡單不過的夢想也就是有些成就，然後創造一個家庭，並且進入下一個階段的家庭生活。

成家算是對家庭生活的一種希望，也算一種責任。在發病後，生活也從單身一個人回復到了家庭的生活，和父母親再次的緊密生活在一起。這段時間，自己也覺得在所謂的家庭生活的希求無形當中獲得了相當的滿足，未必一定要有另外一個家庭啊。所希望的不就是家庭生活的感覺嗎？

能夠和自己的家人在一起生活就是家庭生活了。又何必遠赴其他地方追尋？所以請珍惜和家人在一起的時刻，那怕是鬥嘴爭吵，或者是嘻笑怒罵，這不就是生活的一部分嗎？這場病給了我一些不同的角度和觀點來審視自己，也謝謝上天給了我這樣的禮物。

正所謂：父母在，不遠遊。雖然有點不適用於現代的資訊科技時代，年輕人多半遠赴異地工作，許久才能夠回老家看看老父老母。但是若有機會的話，還是回家看看吧。回家是每個人都渴望的。而我現在正在享受這份幸福！也希望正在看這篇文章的你或妳能能夠隨時珍惜並且享受這份家庭生活的幸福感。

每個人都要珍惜和家人在一起的時刻

生命價值

一個很棒的團體, 很棒的組織者，和很棒的團員.

生命價值

平凡

看到以前的自己 Selina痛哭：想當平凡人

大家都認為Selina是勇敢堅強的女孩，但Selina情緒崩潰了，昨天Selina看到自己以前在螢光幕的樣子，她忍不住悲從中來，說再怎麼樂觀，失去的再也找不回來，她倒在 未婚夫阿中懷裡哭泣，阿中安慰她，你還是很幸福的，而且是各很特別的人，沒想到這席話讓Selina更傷心，她說，她只想當平凡人想結婚生小孩，但阿中安慰她，上天要讓你的生命更有意義，有一天你會知道，這才讓Selina收起眼淚，繼續復健，說有一天一定會當阿中最幸福最特別的新娘。

打扮得美美的，在舞台上唱唱跳跳，這是我們看到Selina美麗開朗的樣子，但這樣的畫面卻讓Selina忍不住感慨。

Selina在微博上留言，說看到不久前螢幕上活蹦亂跳的自己，才發現不管多樂觀，我失去的再也回不來了，忍不住淚水的潰堤，倒在未婚夫阿中的懷裡，說自己原本是全世界最幸福的女人。

阿中立刻安慰她，「妳現在還是最幸福的人，而且還是個很特別的人」，但Selina哭吼，「只想當個平凡的人，結婚生小孩」，微博上的文字看人讓人鼻酸。

這一幕鼓起勇氣面對大家，背後是多少的心酸跟痛苦。面對鏡頭總是低調不語，阿中默默的在背後支持Selina，只有他才看到Selina無助脆弱的樣子。

阿中還告訴Selina是老天要讓你的生命更有意義，這一席話才讓Selina收起眼淚，繼續展開痛苦的復健行程，最後還說「會努力的當你最幸福最特別的新娘」。

經歷生死劫難，Selina渴望平凡生活，一路走來更見Selina跟阿中堅定不移的愛情，Selina的真實人生，比她在舞台上的演出更讓人感動。

------------------------------------------

想當平凡人! 我深有同感。通常都是在經歷巨變之後的感想。

當身體都是健康自由的時候，人往往都不會這麼想。

只有平凡才是真正的幸福，但是人永遠都不會滿足現狀的！

總是要經歷過才會大徹悟。知足才能常樂，知足才會幸福。

無論平凡與否都繼續的往前走吧! Let's keep walking!

更多閱讀:
當代物理學家大師史蒂芬·霍金的感觸
MS人一定要注意的事
心情點播: 我們就是這個世界
網路讀書會之三: 賣命工作的誘惑-新經濟的矛盾與選擇5
由文英阿姨看現代人所需要面臨的課題
心情點播:心中仍然有一份對伴侶的希望之火
如果你的人生可以重來～
一句話道盡人生

平凡

北美對於CCSVI的研究情形update

在去年北美洲(加拿大和美國) 7大研究群於2010/7/1正式啟動的CCSVI研究 發布前6個月的研究進度

The National Multiple Sclerosis Society and the MS Society of Canada have just released their report on the first 6 months of progress on the seven CCSVI studies with a more than $ 2.4 million.
該7個研究團隊被資助超過了240萬美元, 2年的時間對於CCSVI和MS相關連的研究. 該進步報告包含團隊成員的建立, 設定實驗的流程, 參與病人的召募, 等等.

Details: The funded investigators, which include an integration of both MS and vascular experts, report progress in establishing their teams, putting their protocols in place, recruiting participants and beginning their studies, as summarized below.

該7個研究團隊前6個月的研究進度如下:

• Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario: Her team received Research Ethics Board approval in the fall and has begun enrolling participants and studying vein abnormalities in children and teenagers who have MS, and healthy controls of the same age, using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound. The team’s ultrasound experts have received training in Dr. Zamboni’s original techniques.
Read details of Dr. Banwell’s plans.

• Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta: Her team received Research Ethics Board approval in the fall to begin recruiting a cross-section of people with MS compared to other neurological diseases and healthy volunteers. They also recruited two ultrasonography experts who have begun ultrasound scanning as originally used by Dr. Zamboni. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3T MRI machine (twice as strong as standard clinical MRI) that will be used to perform MR venography scans to compare against the ultrasound tests.
Read details of this team’s plans.

• Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison: His team will be using MR venography and ultrasound techniques originally used by Dr. Zamboni to investigate CCSVI in people with early and later MS, controls with other conditions and healthy volunteers. A study coordinator is developing a recruitment list and an ultrasound expert has been hired and is slated to receive training in the Zamboni techniques. Dr. Field has been negotiating with the Institutional Review Board on issues related to study details and informed consent, and hopes to have these issues resolved to obtain IRB approval in the coming weeks so that scanning can begin.
Read details of this team’s plans.

• Dr. Robert Fox, Cleveland Clinic, Cleveland: His team has received Institutional Review Board approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS (CIS) and comparison groups, and recruitment is ongoing. Two ultrasound researchers underwent training in the technique originally used by Dr. Zamboni, and the team has obtained a new ultrasound machine previously used in other CCSVI studies. The ultrasound team found several aspects of the published methodology ambiguous, and they have standardized the protocol and analysis to achieve consistent results. To share ideas and solutions to these methodological challenges, Dr. Fox’s team has submitted an abstract for consideration for presentation at the American Academy of Neurology’s annual meeting in April.
Read details of this team’s plans.

• Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: His team obtained Research Ethics Board approval in the winter and at once began the first phase of scanning using MR venography in people without MS, which will be used to compare with various scans in people with MS. Dr. Torres’s team has overcome several obstacles including negotiating with the Research Ethics Board over elements of the informed consent form used to explain the study’s procedures and potential outcomes to participants. Team members are slated to be trained using the ultrasound techniques originally used by Dr. Zamboni, and they are on track recruiting more participants for the study.
Read details of this team’s plans.

• Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan: The teams at both sites have received Research Ethics Board approval and have begun to recruit and scan participants. Their ultrasound technologists were trained by Dr. Zamboni, and they are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. The radiologists on the teams of Drs. Traboulsee and Knox are meeting in February 2011 to ensure the consistency of their protocols across sites. The teams are on target for accrual of recruits and completion of the study.
Read details of their plans.

• Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: His team applied in advance and obtained Institutional Review Board approval in the spring, and the team’s neurosonographer has received intensive training for intracranial and extracranial ultrasound scanning techniques. The team has already scanned a significant number of participants, which includes people with different types of MS, people with other conditions, and people with no known health problems. One obstacle Dr. Wolinsky’s team is addressing is the difficulty of recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI.
Read details of this team’s plans.

Going Forward: These seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The grants were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. (Read more) The teams are now established and scanning procedures are underway at all but one of the study sites. Researchers have demonstrated a clear willingness to share technical advice and information so that projects can move forward as smoothly as possible. At this six-month milepost they are making significant progress on plans for these two-year studies.

The next update on the work of the seven grantees will be reported in six months.
下一次的研究結果將於6個月之後再行發佈

北美對於CCSVI的研究情形update

關於飲食，你可以更注意

今天收到一封信 來自朋友的關心，內容提到:

"我最近再看一本書叫做新世紀飲食.

裡面有好大一段是在討論"多發性硬化症的飲食". 主要是建議低動物性蛋白與膽固醇啦.

想問一下你有看過了嗎?

其實我快看完了..很震驚....嚇到我都有點不想去美國了.."

北美地區是全球MS發病人口最多的區域，讀讀這本由約翰．羅彬斯所揭露的現實情形，或許可以一窺一二。

引述其中的一街讀者讀過的感想：

內容包含著很多方面，除了健康還有動物，環境等等 。從文字中就可以感受到作者對現代我們的食物有著莫大的擔心 ，也可以感受到作者的仁慈

此書也許\揭發了許\多不為人知的事情 ，但是也都是我們需要正視，去面對的 。

我們對自己的身體健康有決定權
我們的觀念也許\不盡相同
但是這些研究結果，是不是可以說明些什麼
如果說， 某種食物對健康不利的論點還在研究階段
那麼，他對健康好的論點，更是研究階段

我們選擇吃了什麼,真的會影響自己的身體

裡面也提到了一些有關為啥現代的人
不斷的提倡著養生或者是天然 但是為甚麼生病的人還是那麼的多
不知道大家是否有想過
你吃過的蛋 牛奶和肉類是怎麼被賠養出來的嗎?!
動物吃了許多的污染物(例如:海洋被汙染)
或者是被吃藥物長大的動物們...到最後吃到的都是人類的體內阿!!

多瞭解現在所處的環境，將會對自己的健康多一份瞭解和注意！
還是苦口婆心強調：多吸收知識將會對自己的身體健康多一份瞭解和力量。

更多閱讀：
請參考 網誌右邊 『建議病友和親友一定要閱讀的書籍』

關於飲食，你可以更注意