2011 （民國100）新的一年即將在3小時之後到來
你對新的一年的希望是什麼呢?寫下你的希望吧!
My only wish: Healthy always! 永遠健康!
發表文章
Enough Already!
6 年前
2010年12月31日 星期五
2010年12月28日 星期二
民國100年也是驗證MS新理論的一年
Studies in 2011 （民國100）could decide MS theory's validity
Studies set up to test hotly debated MS theory可連結至上述兩個新聞看看
加拿大政府終於決定實際的行動了...
台灣也從2010(民國99年)努力至今...
加油了！病人們都在等待著。
12/25 中華民國高壓暨海底醫學會冬季會
上星期 12/25 於台中榮民總醫院 舉辦的 中華民國高壓暨海底醫學會冬季會 中
一場講題為 多發性硬化症與微血管腦病變 由林新醫院神經內科 李潤宇主任主講
該議提中提到了幾個重要的觀點：
1. 在發炎的細胞組織當中的環境周圍是缺乏氧氣的（發炎反應本身就是一種氧化反應，所以會消耗周圍的氧氣），所以神經脫鞘的現象也是發炎反應，所以對於神經細胞的狀態而言，也屬於一種缺氧的狀態。而在提供相對大量的氧氣之後對於受損的細胞組織的修復具有加速的現象。不論是外傷，中風，手術，等需要快速復原傷口的部份。
2. 過去的文獻當中也有不少討論血管和MS關聯的論文（包含血管，血腦障壁，缺氧，
3. 也有論文提到高壓氧在MS病症上 能夠改善排尿Bladder 和排便Stool，進一步恢復行動能力的案例。
4. 在經過高壓氧的10次療程之後，經由核醫影像可知道大腦部份的含氧量增多...
過去在高壓氧上面對於中風患者的治療成效也有過爭議，後來也漸漸的證明其效果，所以是否能有多一點的例證來說明，需要相關醫師們的努力了。
閱讀更多：
相關文獻連結：
Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis 血管的合併症狀是會讓多發性硬化症加速肢體殘障的原因
The Pathogenesis of Multiple Sclerosis- A Possible Vascular Factor 1933
MS發病的原因之一：可能為血管
Blood-brain barrier disruption in multiple sclerosis
在MS中觀察到的血腦障壁的毀損
Vascular endothelial growth factor is expressed in multiple sclerosis plaques and can induce inflammatory lesions in experimental allergic encephalomyelitis rats.
在動物實驗中發現 血管內壁增生的因子能夠以MS的白斑塊來顯現並且能夠進一步促成發炎的病變
Hypoxia-like tissue injury as a component of multiple sclerosis lesions
缺氧的受損組織是導致多發性硬化症病變的因素之一
Hyperbaric Oxygen Therapy for Multiple Sclerosis: My Experience
Journal of American Physicians and Surgeons Volume 10 Number 4 Winter 2005
一場講題為 多發性硬化症與微血管腦病變 由林新醫院神經內科 李潤宇主任主講
該議提中提到了幾個重要的觀點：
1. 在發炎的細胞組織當中的環境周圍是缺乏氧氣的（發炎反應本身就是一種氧化反應，所以會消耗周圍的氧氣），所以神經脫鞘的現象也是發炎反應，所以對於神經細胞的狀態而言，也屬於一種缺氧的狀態。而在提供相對大量的氧氣之後對於受損的細胞組織的修復具有加速的現象。不論是外傷，中風，手術，等需要快速復原傷口的部份。
2. 過去的文獻當中也有不少討論血管和MS關聯的論文（包含血管，血腦障壁，缺氧，
3. 也有論文提到高壓氧在MS病症上 能夠改善排尿Bladder 和排便Stool，進一步恢復行動能力的案例。
4. 在經過高壓氧的10次療程之後，經由核醫影像可知道大腦部份的含氧量增多...
過去在高壓氧上面對於中風患者的治療成效也有過爭議，後來也漸漸的證明其效果，所以是否能有多一點的例證來說明，需要相關醫師們的努力了。
閱讀更多：
相關文獻連結：
Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis 血管的合併症狀是會讓多發性硬化症加速肢體殘障的原因
The Pathogenesis of Multiple Sclerosis- A Possible Vascular Factor 1933
MS發病的原因之一：可能為血管
Blood-brain barrier disruption in multiple sclerosis
在MS中觀察到的血腦障壁的毀損
Vascular endothelial growth factor is expressed in multiple sclerosis plaques and can induce inflammatory lesions in experimental allergic encephalomyelitis rats.
在動物實驗中發現 血管內壁增生的因子能夠以MS的白斑塊來顯現並且能夠進一步促成發炎的病變
Hypoxia-like tissue injury as a component of multiple sclerosis lesions
缺氧的受損組織是導致多發性硬化症病變的因素之一
Hyperbaric Oxygen Therapy for Multiple Sclerosis: My Experience
Journal of American Physicians and Surgeons Volume 10 Number 4 Winter 2005
2010年12月23日 星期四
祝大家耶誕快樂，希望大家都能夠獲得和Tim Donovan一樣的耶誕禮物
堤姆得到了很棒的耶誕禮物，來看看他的禮物吧！Christmas is going to be different this year for Tim Donovan.
今年的耶誕節對於堤姆而言是一個非常不同的耶誕節。
This year's holiday season will be different for Tim Donovan. It's going to be the first Christmas since the Fredericton Junction councillor underwent a new treatment for multiple sclerosis at a private clinic in the United States. Donovan said the liberation treatment, which isn't available in Canada, has helped improve his mobility and energy level.
It will be the first holiday season the longtime Fredericton Junction councillor has enjoyed since family, friends and neighbours raised more than $10,000 to help him pay for the liberation treatment - a new procedure for multiple sclerosis patients that has yet to be approved by Health Canada.
Researchers across the globe are conducting trials to determine whether this procedure is an effective way to treat MS.
A growing number of Canadian MS patients have enjoyed varying degrees of success after undergoing the liberation treatment outside of the country, except for one Ontario man who died after having the procedure done in Costa Rica.
Donovan and thousands of other Canadians with MS have been travelling to clinics in places such as the United States, Bulgaria and Mexico to have the treatment, which involves improving the flow of blood through a patient's veins.
Donovan, who was diagnosed with MS more than 23 years ago, said the changes in his life have been remarkable since having the procedure in August.
堤姆23年前被診斷出多發性硬化症，直到今年8月份做了靜脈擴張術之後，他的生活才出現了重大的改變。
He said his mobility and balance have greatly improved, he has more feeling in his extremities and his energy level has jumped.
堤姆說他的行動和平衡能力有了很大的進步，他四肢的的感覺回復了，而且他比以前更有精神，不再容易疲憊了。
He's looking forward to spending quality time with his grandchildren over the holidays.
他很期盼今年的耶誕節能和他的孫子過一個很有質感的假期。
"They have their grandfather back. They used to go to the hospital every year to visit me and wonder if I was going to die," he said.
過去我的孫子都是到醫院來陪我度過耶誕節，而且也不知道我是否會因此而去世。而現在，他們的祖父回來了！
The past few Christmas holidays have been difficult for Donovan, who often missed most of these special moments due to a severely depleted energy level.
過去的耶誕節因為嚴重的疲憊感覺讓堤姆總是在重要的時刻中缺席
But he's expecting Christmas morning to be different this year.
堤姆
"We always go to my daughter's home and we spend Christmas Eve and Christmas morning with the kids. Last year, I'd get up with them, watch them open their gifts and then I'd go back to bed. This year, I can stay up. That's a big deal to me," he said, a broad smile spreading across his face.
堤姆說：『我們總是到我女兒的家過耶誕夜直到隔天。去年我和他們起床看著他們把禮物拆開之後我就疲倦的必須再回去睡覺。今年，我可以站起來了，這對我來說是很重要的事』
"The kids aren't saying, 'Where's Grampy?' "
And thanks to more energy and better co-ordination, he's already received a special holiday gift.
這是堤姆今年獲得最特別的禮物
"Last year, the doctor told me he didn't think I'd walk again and he took my driver's licence away. Last month, I got it back," he said.
堤姆說：『去年，醫師告訴我他不認為我能夠走路而且他拿走了我的駕照。上個月我把我的駕照拿回來了！』
"So that's my early Christmas present - I got my driver's licence back."
Donovan said he knew he was feeling stronger, but he wasn't certain what the driver examiner would think about his improved abilities.
"I told the driver examiner that I have MS and, 'The doctors think I might need a (left-foot accelerator pedal) and I want you to take me out and if I'm not safe, I don't want my licence,' " he said.
"He took me out for 45 minutes - on highways, (curved) streets and, at one point, a child even ran out in front of me and I just stopped like anybody would. He said, 'There's nothing wrong with your driving.'
"He gave me my licence. I remember when I first got my licence at 16. It was terrific. It felt just like that."
He said he's thankful that his community helped him pay for the costly treatment and he believes it's promising that the new Progressive Conservative government has already committed money to exploring this emerging treatment option.
堤姆說他很感謝他的親友協助他募得了執行手術的費用，
Donovan said the growing optimism he discovers while talking to New Brunswickers about his experience will keep his spirits high.
"I like to make the joke that I'm not a soap dispenser - I'm a hope dispenser," he said.
"I talk to people every day about what's happened to me. I'm not saying I'm a doctor or that I know everything about it, but I can speak about what's happened to me.
堤姆說：『我每天都告訴別人在我身上發生的事，雖然我不是醫生，但我可以告訴他們我是如何有此一轉變的。』
"I hear their stories and it makes me want to keep fighting (until this procedure is available in Canada)."堤姆說：『我聽了很多其他病友做過靜脈擴張手術的故事，而就是這些故事讓我想要繼續和多發性硬化症奮戰下去』
--------------------------------------
我更希望明年的耶誕節之前，會有更多多發性硬化症病友會收到像堤姆一樣的禮物。
2010年12月21日 星期二
病友Nicki Watts 的經驗
來看看Nicki Watts （1998年確診 MS，醫師認為她已經得此病有15-20年）
I was diagnosed with MS in 1998, but I've been living when my symptoms and the docs think I've had it for 15-20 years. I am thrilled to be getting my CCSVI procedure tomorrow morning! I am expecting great things~~Also see post video 8/26/10!
I have prayed and waited many years for this miracle and I believe that God is answering my prayers and the prayers of my loving family and friends! The Lord has been with me and strengthened me throughout my MS journey and now I am believing that my miracle is at hand! Praise be to Jesus my Lord.
靜脈擴張前 2010/8/10
This is my post CCSVI video taken one week after my liberation procedure at Moffitt Cancer Center in Tampa, Fl.
Praise God from whom all blessings flow! I am doing so much better!
靜脈擴張後1星期 2010/8/26
My second post CCSVI video, recorded about one week ago, while on vacation in NC. Had trouble downloading it, so I'm trying again now that I'm home.
I am thanking the Lord for my continued healing each day!
Blessings and love,
靜脈擴張後1個月 2010/9/10
This is my 3 month post CCSVI video. I had my procedure on 8/19/10. I continue to improve and heal! Much less pain, better walking, less numbness, better balance. It's all good! Thank you Jesus!
靜脈擴張後3個月 2010/11/16
行動力變得更好，比較不疲憊了，平衡更好，力量變強了。
I was diagnosed with MS in 1998, but I've been living when my symptoms and the docs think I've had it for 15-20 years. I am thrilled to be getting my CCSVI procedure tomorrow morning! I am expecting great things~~Also see post video 8/26/10!
I have prayed and waited many years for this miracle and I believe that God is answering my prayers and the prayers of my loving family and friends! The Lord has been with me and strengthened me throughout my MS journey and now I am believing that my miracle is at hand! Praise be to Jesus my Lord.
靜脈擴張前 2010/8/10
This is my post CCSVI video taken one week after my liberation procedure at Moffitt Cancer Center in Tampa, Fl.
Praise God from whom all blessings flow! I am doing so much better!
靜脈擴張後1星期 2010/8/26
My second post CCSVI video, recorded about one week ago, while on vacation in NC. Had trouble downloading it, so I'm trying again now that I'm home.
I am thanking the Lord for my continued healing each day!
Blessings and love,
靜脈擴張後1個月 2010/9/10
This is my 3 month post CCSVI video. I had my procedure on 8/19/10. I continue to improve and heal! Much less pain, better walking, less numbness, better balance. It's all good! Thank you Jesus!
靜脈擴張後3個月 2010/11/16
行動力變得更好，比較不疲憊了，平衡更好，力量變強了。
2010年12月12日 星期日
不要插管要唱歌
不要插管要唱歌 聲樂家戰勝病魔
引述2010-12-12 中國時報
 聲樂家郭惠恩（見圖右，陳怡誠攝）。 |
「我不要插管，我要唱歌！」二年前，罹患「多發性硬化症」的聲樂家郭惠恩病情發作，全身上下只剩一隻手可以活動，醫生見她呼吸困難，要求插管治療，告知只剩三小時的生命，她卻堅持拒絕，深怕傷了喉嚨、不能再引吭高歌。神奇的是，她熬過了死劫，透過不斷地復健，從最簡單的呼氣、吸氣開始「重學」聲樂，現在她時常為教會、社福團體歌唱，用自己的故事激勵大眾。
十一日救國團舉行「微笑天使專案贈書活動」，郭惠恩上台演唱「神未曾應許」及「友情」二首歌，高亢激昂又帶有些微滄桑的歌聲，在場聆聽的人無不動容。很難想像，二年半前，年近半百的她曾癱在床上，連醫生也一度想要放棄。郭惠恩罹患罕見疾病「多發性硬化症」，發作時身體肌肉無法動彈、神經也失去功能，感受不到肢覺、痛楚。六歲時，她曾突然雙眼失明，在無數次手術及復健後，才重新看見光明，但也只能看到周圍五十公分的距離。
她在特教學校中學習，在聲樂領域中找到自己的天空，一度小有成就，但四十七歲時，病魔又再度找上她，但她又再度戰勝了病痛，「復健過程 中，我就像是一個新生的嬰兒，重新去感受、重新去學習一切！」她的腹部本來完全沒知覺，透過不斷的吸、吐練習，慢慢找回共鳴的方法，「還好我還能發出聲 音，也沒有喪失聽覺，一切都可以重新來過！」
現在的郭惠恩，珍惜每一次跟人分享的機會，用歌聲訴說自己的故事，感染每一位面臨低潮的生命，「我要用剩下的生命，積極演完我的故事！」
救國團、張老師月刊推動「微笑天使專案」，由社會各界認購了三五一五套罕見疾病的奮鬥傳記，行政院長吳敦義、監察院長王建煊等人也出席給 予鼓勵。現場由罕病家庭的父親組成「不落跑老爸俱樂部」演場多首歌曲，更使王建煊頻頻以手帕拭淚，他說，我們社會不能讓這些人獨立承擔這些痛苦，政府應該 作更多的事。
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曾經全身癱她可以再像照片一樣站立，歌唱，你也一定行。隨時保持堅毅的信心是重要的，我完全同意她說的：復健過程 中，我就像是一個新生的嬰兒，重新去感受、重新去學習一切！
但是也請不要低估MS多發性硬化症，惠恩姐直到47歲都還被病魔來敲門，可見其威力的強大。或許這是要生這個病的人好好的，完完全全的，隨時的觀照自己的身體健康。若問我要不要47歲再來一次？我毫不猶豫的可以給你我的答案："Never!!"與其再來一次，不如只要經歷一次！ 健康第一！健康無價！！
Still putting faith in ‘Liberation’
Still putting faith in ‘Liberation’
Karen Cyopik wants to be liberated — liberated from the fatigue, liberated from the nausea and liberated from the once-a-week injections.
Karen Cyopik 凱倫想要跳出無時無刻的疲憊感，噁心嘔吐的感覺以及一星期必須注射一次藥物的生活。她想要徹底的脫離這樣的生活。
Karen has lived with multiple sclerosis for 19 months, and before the disease progresses any further she hopes to travel to Costa Rica for a new and controversial treatment, the Liberation treatment.
The treatment, developed by Italian doctor Paolo Zamboni, is a form of angioplasty performed on neck veins to widen them. While some disagree, Zamboni’s research states that MS is a result of narrowing in the neck veins. While the treatment is not a cure many believe it can dramatically halt the progression of the disease that eventually leaves sufferers physically disabled and with neurological damage.
“It’s not a cure, I know that, but it is the only chance of slowing the disease down,” said Karen, who pans to travel to Costa Rica for the procedure in late February. She hopes to slow or stop the disease before her symptoms get any worse. There has been some controversy surrounding the treatment which is not recognized by the Ministry of Health or MS Society of Canada. The treatment flies in the face of traditional beliefs surrounding MS as a immuno-deficiency disease and recently one Niagara Falls man who travelled to Costa Rica for the procedure died after returning home.
凱倫說：雖然我知道這不是一個完全治癒的方法，但是這是能夠減緩病症惡化的唯一機會。
Karen and her husband Randy admit they are aware any procedure has risks. According to their research however all cases of death related to the procedure have involved the use of stents. Traditionally angioplasty uses balloons to widen viens which are removed after the procedure. In some cases when the balloons are removed the vein shrinks again and a small sheath, or stent, is inserted to keep it open. Karen said if it comes down to it she would refuse the stent, but she understands why someone with advanced symptoms would take such a risk.
凱倫和他的丈夫瞭解每個手術都有其風險存在，但經過他們的研究瞭解之後認為傳統的氣球血管擴張術是安全的且成熟的過程和方式。凱倫說如果病情會再惡化他也會拒絕使用支架。但是他也能深刻體會症狀比較嚴重的MS病友們為何會選擇風險較高的支架，因為這是人所不能承受之苦痛。
Karen, who suffers from fatigue, pain and vertigo as a result of her condition, pointed out that the traditional approach to treatment is a drug regimen that combats the progress of the disease. At a cost of $450 each, Karen’s weekly shots don’t come cheap and what makes it worse is the drugs themselves often bring severe side effects such as nauseau and headaches for Karen.
凱倫受著疲累倦怠，痛以及暈眩的苦，和每週必須注射的一次藥物成本(450美元=13500台幣)比起來，靜脈擴張手術的成本明顯低很多。每週必須注射藥物並不會比較便宜。而且此外他還必須忍受著藥物產生的噁心和頭痛等副作用而效果只有30%的機率。（對於在沒有健保的國家來說，醫療的費用絕對不是我們台灣人可以理解的，所以我們更應該珍惜我們目前的現狀，這只告訴了我們一件事：健康是無價的！）
“The standard treatment is to give you drugs, and they are only 30 per cent effective,” said Karen, who has high hopes and great faith placed in the Liberation treatment. While many countries have adopted the procedure Karen and Randy believe that the interests of large pharmaceutical firms has something to do with resistance to the treatment in Canada.
“I feel like I am drowning and everyone is arguing trying to decide what type of flotation device to throw me,” she said.
他說：我覺得我像一個正在溺水的人，而每個人卻站在旁邊爭論著該丟給我哪一種救生工具！（這個形容的真再恰當不過了）
“I think in 10 years it will be an acceptable procedure ... but most of us don’t have 10 years to wait,” Karen said, 他說：也許10年後這會是一個可被接受的治療方式，但是絕大部分的人並沒有10年來等待。（如果你曾經經歷過，感受過，那你就能夠深刻的理解了）adding that she had coffee last week with a fellow sufferer who received the treatment and has had relief from symptoms.
Karen admits she is a little worried about the procedure just as she would be about any surgery but she thinks the treatment is her only chance to halt the disease before it cripples her or worse.
“Her one goal is to go into the back yard, tip her head back, and look at the stars,” said Randy choking back tears. Currently Karen’s vertigo would bring her to the ground if she attempted this simple pleasure.
凱倫的目標只是能夠走到後院，仰著頭，看著天上的星星。但是目前暈眩的症狀讓他連這樣簡單的事情都做不到。
Karen has booked her surgery and she is hopeful, the only hard part now she explained will be coming up with the $13,900 for the treatment and related physio-therapy.
“I can’t wait to go, if it wasn’t for the cost I would have gone already,” said Karen, who is already surprised by the outpouring of support by strangers as her two daughters, 27-year-old Lindsey Ciupa and 31-year-old Erin Cyopik, already put together a bowling fundraiser. They have also planned a jack-and-jill-type event for Feb. 26 at the Stamford Lion’s Club in Niagara Falls. For more information her daughters have put together a web site at www.karensjourney.com.
Despite controversies, MS patients continue to seek experimental treatment
雖然仍有爭論，但是MS患者仍繼續尋求實驗性的手術治療
Still seeking Liberation. Karen Cyopik and husband Randy are putting their faith in the Liberation treatment. A relatively new procedure they hope will slow or stop the progress of multiple sclerosis in Karen.
Karen Cyopik 凱倫想要跳出無時無刻的疲憊感，噁心嘔吐的感覺以及一星期必須注射一次藥物的生活。她想要徹底的脫離這樣的生活。
Karen has lived with multiple sclerosis for 19 months, and before the disease progresses any further she hopes to travel to Costa Rica for a new and controversial treatment, the Liberation treatment.
The treatment, developed by Italian doctor Paolo Zamboni, is a form of angioplasty performed on neck veins to widen them. While some disagree, Zamboni’s research states that MS is a result of narrowing in the neck veins. While the treatment is not a cure many believe it can dramatically halt the progression of the disease that eventually leaves sufferers physically disabled and with neurological damage.
“It’s not a cure, I know that, but it is the only chance of slowing the disease down,” said Karen, who pans to travel to Costa Rica for the procedure in late February. She hopes to slow or stop the disease before her symptoms get any worse. There has been some controversy surrounding the treatment which is not recognized by the Ministry of Health or MS Society of Canada. The treatment flies in the face of traditional beliefs surrounding MS as a immuno-deficiency disease and recently one Niagara Falls man who travelled to Costa Rica for the procedure died after returning home.
凱倫說：雖然我知道這不是一個完全治癒的方法，但是這是能夠減緩病症惡化的唯一機會。
Karen and her husband Randy admit they are aware any procedure has risks. According to their research however all cases of death related to the procedure have involved the use of stents. Traditionally angioplasty uses balloons to widen viens which are removed after the procedure. In some cases when the balloons are removed the vein shrinks again and a small sheath, or stent, is inserted to keep it open. Karen said if it comes down to it she would refuse the stent, but she understands why someone with advanced symptoms would take such a risk.
凱倫和他的丈夫瞭解每個手術都有其風險存在，但經過他們的研究瞭解之後認為傳統的氣球血管擴張術是安全的且成熟的過程和方式。凱倫說如果病情會再惡化他也會拒絕使用支架。但是他也能深刻體會症狀比較嚴重的MS病友們為何會選擇風險較高的支架，因為這是人所不能承受之苦痛。
Karen, who suffers from fatigue, pain and vertigo as a result of her condition, pointed out that the traditional approach to treatment is a drug regimen that combats the progress of the disease. At a cost of $450 each, Karen’s weekly shots don’t come cheap and what makes it worse is the drugs themselves often bring severe side effects such as nauseau and headaches for Karen.
凱倫受著疲累倦怠，痛以及暈眩的苦，和每週必須注射的一次藥物成本(450美元=13500台幣)比起來，靜脈擴張手術的成本明顯低很多。每週必須注射藥物並不會比較便宜。而且此外他還必須忍受著藥物產生的噁心和頭痛等副作用而效果只有30%的機率。（對於在沒有健保的國家來說，醫療的費用絕對不是我們台灣人可以理解的，所以我們更應該珍惜我們目前的現狀，這只告訴了我們一件事：健康是無價的！）
“The standard treatment is to give you drugs, and they are only 30 per cent effective,” said Karen, who has high hopes and great faith placed in the Liberation treatment. While many countries have adopted the procedure Karen and Randy believe that the interests of large pharmaceutical firms has something to do with resistance to the treatment in Canada.
“I feel like I am drowning and everyone is arguing trying to decide what type of flotation device to throw me,” she said.
他說：我覺得我像一個正在溺水的人，而每個人卻站在旁邊爭論著該丟給我哪一種救生工具！（這個形容的真再恰當不過了）
“I think in 10 years it will be an acceptable procedure ... but most of us don’t have 10 years to wait,” Karen said, 他說：也許10年後這會是一個可被接受的治療方式，但是絕大部分的人並沒有10年來等待。（如果你曾經經歷過，感受過，那你就能夠深刻的理解了）adding that she had coffee last week with a fellow sufferer who received the treatment and has had relief from symptoms.
Karen admits she is a little worried about the procedure just as she would be about any surgery but she thinks the treatment is her only chance to halt the disease before it cripples her or worse.
“Her one goal is to go into the back yard, tip her head back, and look at the stars,” said Randy choking back tears. Currently Karen’s vertigo would bring her to the ground if she attempted this simple pleasure.
凱倫的目標只是能夠走到後院，仰著頭，看著天上的星星。但是目前暈眩的症狀讓他連這樣簡單的事情都做不到。
Karen has booked her surgery and she is hopeful, the only hard part now she explained will be coming up with the $13,900 for the treatment and related physio-therapy.
“I can’t wait to go, if it wasn’t for the cost I would have gone already,” said Karen, who is already surprised by the outpouring of support by strangers as her two daughters, 27-year-old Lindsey Ciupa and 31-year-old Erin Cyopik, already put together a bowling fundraiser. They have also planned a jack-and-jill-type event for Feb. 26 at the Stamford Lion’s Club in Niagara Falls. For more information her daughters have put together a web site at www.karensjourney.com.
2010年12月7日 星期二
我可以跳了！
從2008年5月之後，就不知道"跳"為何物。
I don't know What the jump is like since 2008/5 when I got paraplegia.
想到之前我搜尋CCSVI Liberation treatment的影片中看到國外一位MS病友的影片 I can jump！內心就相當的激動！
Thinking about the film I search about CCSVI/Liberation treatment, I was so excited!
而現在，我也可以說：I can jump!
And now, I can say loudly: I can jump!
雖然力量還不太夠, 不過 我相信你也可以感受到那份"跳躍"的喜悅
Though the height is not "high", but I am sure you can feel the joy of mine!
2010年12月3日 星期五
中樞神經靜脈循環異常 和 多發性硬化症關聯性研究 台灣正式開跑
CCSVI diagnose experiment will launch in Taiwan!!
中樞神經靜脈循環異常對照實驗將啟動
Control member recruit!!
對照組成員強力募集中
國外自2009年底由義大利醫師Paolo Zamboni 在多發性硬化症的病人身上藉由超音波，核磁共振掃描和血管攝影的檢查之後發現：有九成以上的病人都有靜脈窄化的現象，特別是內頸靜脈，胸腔靜脈兩個部份，該靜脈異常的窄化導致腦和脊髓部份的血流無法正常排出，懷疑是因為此問題而使得中樞神經進一步的產生發炎反應形成。並且在成熟的氣球擴張手術的協助下，使得接受此手術的病人獲得症狀的改善和回復。因為是新的發現而且許多病人的反應良好，所以許多國家紛紛開始了這樣的研究。
給國內病友一個令人興奮的消息，目前台北榮總之前針對國內的MS病友做了超音波和核磁共振掃描，初步發現和國外的情形相去不遠，所以也準備展開正式的實驗，但是為求正確性，所以需要徵求對照組（健康者）做超音波和核磁共振掃描(含顯影劑檢查)。
請病友們大力的募集符合以下條件者：
1. 年齡在20~40歲之間佳 （or 15~45歲）
2. 沒有 高血壓，憂鬱症或焦慮症等 病史
3. 沒有 心臟病相關病史(包含心室肥大，冠狀動脈硬化...等者)
4. 沒有 糖尿病 病史
5. 沒有 腎臟相關疾病或腎功能異常者
6. 沒有 頭痛 病史
7. 沒有 中風病史 (包含大小中風，眼中風，耳中風)
8. 沒有 其他重大傷病者
9. 沒有 中樞神經損傷的病史（脊髓炎，腦膜炎.....等）
10. 視力正常者（不能有突發性失明或看不見的病史或症狀）
另外請病友募集的對象最好是和自己血緣關係較遠者（為了排除遺傳的因素，故不建議病友的父母兄弟姊妹子女參與）
所以請病友的朋友們為了關心你的朋友，發揮您的小愛，又或者把此當成是一項健康檢查（此健康檢查絕對不是一般健康檢查就能做的，是屬於高級的腦血管檢測，經由此檢測會得知您的動脈靜脈是否窄化，是否有中風的危機...），成就消除罕見多發性硬化症疾病的大愛吧！
請大家幫忙推，欲參加對照檢查者
請電：02-28757583
或Email: wysheng@vghtpe.gov.tw 盛小姐
中樞神經靜脈循環異常對照實驗將啟動
Control member recruit!!
對照組成員強力募集中
國外自2009年底由義大利醫師Paolo Zamboni 在多發性硬化症的病人身上藉由超音波，核磁共振掃描和血管攝影的檢查之後發現：有九成以上的病人都有靜脈窄化的現象，特別是內頸靜脈，胸腔靜脈兩個部份，該靜脈異常的窄化導致腦和脊髓部份的血流無法正常排出，懷疑是因為此問題而使得中樞神經進一步的產生發炎反應形成。並且在成熟的氣球擴張手術的協助下，使得接受此手術的病人獲得症狀的改善和回復。因為是新的發現而且許多病人的反應良好，所以許多國家紛紛開始了這樣的研究。
給國內病友一個令人興奮的消息，目前台北榮總之前針對國內的MS病友做了超音波和核磁共振掃描，初步發現和國外的情形相去不遠，所以也準備展開正式的實驗，但是為求正確性，所以需要徵求對照組（健康者）做超音波和核磁共振掃描(含顯影劑檢查)。
請病友們大力的募集符合以下條件者：
1. 年齡在20~40歲之間佳 （or 15~45歲）
2. 沒有 高血壓，憂鬱症或焦慮症等 病史
3. 沒有 心臟病相關病史(包含心室肥大，冠狀動脈硬化...等者)
4. 沒有 糖尿病 病史
5. 沒有 腎臟相關疾病或腎功能異常者
6. 沒有 頭痛 病史
7. 沒有 中風病史 (包含大小中風，眼中風，耳中風)
8. 沒有 其他重大傷病者
9. 沒有 中樞神經損傷的病史（脊髓炎，腦膜炎.....等）
10. 視力正常者（不能有突發性失明或看不見的病史或症狀）
另外請病友募集的對象最好是和自己血緣關係較遠者（為了排除遺傳的因素，故不建議病友的父母兄弟姊妹子女參與）
所以請病友的朋友們為了關心你的朋友，發揮您的小愛，又或者把此當成是一項健康檢查（此健康檢查絕對不是一般健康檢查就能做的，是屬於高級的腦血管檢測，經由此檢測會得知您的動脈靜脈是否窄化，是否有中風的危機...），成就消除罕見多發性硬化症疾病的大愛吧！
請大家幫忙推，欲參加對照檢查者
請電：02-28757583
或Email: wysheng@vghtpe.gov.tw 盛小姐
2010年12月2日 星期四
好消息，提供5位MS病友名額參與"多發性硬化症與微血管腦病變"的討論
國內高壓氧針對MS治療的消息以及討論會議
2010 年中華民國高壓暨海底醫學會冬季會
日期：99 年12 月25 日(星期六)
時間：13:00~17:30【報到時間 13:00-13:30】
地點：台中榮民總醫院 研究大樓一樓第二會場
地址：台中市西屯區中港路三段160 號
主辦單位：台中榮民總醫院胸腔內科高壓氧治療中心/中華民國高壓暨海底醫學會
免費
Time Topic Speaker Moderator
13:30-13:40 致詞 許正園主任/吳杰亮主任
16:30-17:20 多發性硬化症與微血管腦病變 林新醫院神經內科 李潤宇主任 黃敦郁 主任
17:20-17:30 理事長致詞
看來此議題對於 多發性硬化症與腦內血管兩者之間的關聯有所著墨
目前有醫師願意協助MS病友，願意提供5位名額，讓我們能夠參與
若病友願意參加的話，請先向我報名，透過Email或者是留言在BLOG上（留下名字和聯絡電話）
方便我統計。
2010 年中華民國高壓暨海底醫學會冬季會
日期：99 年12 月25 日(星期六)
時間：13:00~17:30【報到時間 13:00-13:30】
地點：台中榮民總醫院 研究大樓一樓第二會場
地址：台中市西屯區中港路三段160 號
主辦單位：台中榮民總醫院胸腔內科高壓氧治療中心/中華民國高壓暨海底醫學會
免費
Time Topic Speaker Moderator
13:30-13:40 致詞 許正園主任/吳杰亮主任
16:30-17:20 多發性硬化症與微血管腦病變 林新醫院神經內科 李潤宇主任 黃敦郁 主任
17:20-17:30 理事長致詞
看來此議題對於 多發性硬化症與腦內血管兩者之間的關聯有所著墨
目前有醫師願意協助MS病友，願意提供5位名額，讓我們能夠參與
若病友願意參加的話，請先向我報名，透過Email或者是留言在BLOG上（留下名字和聯絡電話）
方便我統計。
2010年12月1日 星期三
驚人的4小時
每次當我上網搜尋 CCSVI+Liberation treatment的影片
我都能夠感受到當事人以及他們親友的興奮和喜悅
我誠心希望所有MS人都能夠向影片中的史考特一樣
看看下面這個病人手術前和手術後極大差異的吧
Scott's CCSVI Liberation Pre- and Post
他於今年的八月
That's awesome
這絕對不是"安慰劑"能夠造成的效果
歷史上從未見過有這麼強的安慰劑，除非那是"神的奇蹟"
閱讀更多：http://www.youtube.com/watch?v=84ztnCNRuG4&feature=related
我都能夠感受到當事人以及他們親友的興奮和喜悅
我誠心希望所有MS人都能夠向影片中的史考特一樣
看看下面這個病人手術前和手術後極大差異的吧
Scott's CCSVI Liberation Pre- and Post
他於今年的八月That's awesome
這絕對不是"安慰劑"能夠造成的效果
歷史上從未見過有這麼強的安慰劑，除非那是"神的奇蹟"
閱讀更多：http://www.youtube.com/watch?v=84ztnCNRuG4&feature=related
2010年11月28日 星期日
靜脈擴張術後5個月
自從今年6月中診斷出腦內靜脈循環異常（ccsvi）做了靜脈擴張術5個月後的情形如下：
目前我可以一次步行一公里（ 1000公尺) 大概約1500～1600步
然後就需要休息
為了防止跌倒，仍然需要輔助以登山杖
行動力增加
目前我可以一次步行一公里（ 1000公尺) 大概約1500～1600步
然後就需要休息
為了防止跌倒，仍然需要輔助以登山杖
行動力增加
MS人的希望:CCSVI的經驗和故事(CCSVI發現至今已經一年)
MS病友分享著自己CCSVI的經驗和故事 Testimonials
Hope of liberation: portraits of MS therapy patients
It has been a year since Paolo Zamboni offered the hope of liberation to multiple sclerosis patients everywhere. 一年了，義大利醫師帶給全世界MS人希望已經一年，我們來聽聽以下病友的故事。The Italian doctor suggested that some cases are vascular disorders caused by vein blockages that lead to a build-up of iron in the brain. The possible way to free up the compromised blood flow – called chronic cerebro-spinal venous insufficiency (CCSVI) – is angioplasty. The procedure uses tiny balloons to open constricted veins.
More related to this story
2010年11月26日 星期五
國內高壓氧針對MS治療的消息以及討論會議
這也算是今年聖誕節給病友大家的一個小禮物
2010 年中華民國高壓暨海底醫學會冬季會
日期：99 年12 月25 日(星期六)
時間：13:00~17:30【報到時間 13:00-13:30】
地點：台中榮民總醫院 研究大樓一樓第二會場
地址：台中市西屯區中港路三段160 號
免費，唯報名資格：中華民國高壓暨海底醫學會會員，不知道病人能否參加呢?
主辦單位：台中榮民總醫院胸腔內科高壓氧治療中心/中華民國高壓暨海底醫學會
主辦人：吳杰亮 醫師(台中榮民總醫院胸腔內科高壓氧治療中心)
Time Topic Speaker Moderator
13:30-13:40 致詞 許正園主任/吳杰亮主任
16:30-17:20 多發性硬化症與微血管腦病變 林新醫院神經內科 李潤宇主任 黃敦郁 主任
17:20-17:30 理事長致詞
看來此議題對於 多發性硬化症與腦內血管兩者之間的關聯有所著墨
附上 林新醫院神經內科 李潤宇主任對於 高壓氧治療的病變部份如下連結：
http://www.lshosp.com.tw/wei/Folder/f10.htm
有興趣的醫師和病人可以聽聽這ㄧ場演講
閱讀更多:http://www.hbo.org.tw/news_ov.php?AID=153&lang=tw
有關高壓氧的更多資訊 請至以下連結
:http://www.24drs.com/consumer/disease/O2/2.asp
2010 年中華民國高壓暨海底醫學會冬季會
日期：99 年12 月25 日(星期六)
時間：13:00~17:30【報到時間 13:00-13:30】
地點：台中榮民總醫院 研究大樓一樓第二會場
地址：台中市西屯區中港路三段160 號
免費，唯報名資格：中華民國高壓暨海底醫學會會員，不知道病人能否參加呢?
主辦單位：台中榮民總醫院胸腔內科高壓氧治療中心/中華民國高壓暨海底醫學會
主辦人：吳杰亮 醫師(台中榮民總醫院胸腔內科高壓氧治療中心)
Time Topic Speaker Moderator
13:30-13:40 致詞 許正園主任/吳杰亮主任
16:30-17:20 多發性硬化症與微血管腦病變 林新醫院神經內科 李潤宇主任 黃敦郁 主任
17:20-17:30 理事長致詞
看來此議題對於 多發性硬化症與腦內血管兩者之間的關聯有所著墨
附上 林新醫院神經內科 李潤宇主任對於 高壓氧治療的病變部份如下連結：
http://www.lshosp.com.tw/wei/Folder/f10.htm
有興趣的醫師和病人可以聽聽這ㄧ場演講
閱讀更多:http://www.hbo.org.tw/news_ov.php?AID=153&lang=tw
有關高壓氧的更多資訊 請至以下連結
:http://www.24drs.com/consumer/disease/O2/2.asp
2010年11月24日 星期三
走自己的路，不必比較
以下文摘自法鼓文化出版《從心溝通》
如果我們做任何事，都要和別人較量的話，會是很痛苦的事。不管比高比低、比勝比敗，一旦比較，一定會陷入痛苦中。
記得有一年，奧林匹 克運動大會的游泳比賽，有好幾個國家的選手競逐，結果日本選手得到第一名，第二、三名分別是俄羅斯、美國的選手，事後，記者們採訪得到冠軍的日本選手，問 他：「你隔壁的水道，一邊是美國人，一邊是俄羅斯人，他們都曾經打破世界紀錄，你知道嗎？」他回答：「不知道。」接下來記者又問：「你知不知道其他選手緊 追在後，你一度還被俄羅斯勁敵超越？」結果他還是說「不知道」，他說：「我只管游我自己的，不管是誰在和我比賽，我只是一心一意奮力地往前游去。」
可見，當一個人正在努力時，只要把自己分內的事做好，不需要和別人比較。如果存心和人較量，你可能會想模仿別人的做法，但是只要一模仿，就一定會落後，因為 別人已經先完成了，你隨後跟著做，頂多排行第二名，不可能是第一名。第一名的路一定是自己努力走出來的，無論走得好不好，這條自己走出來的路，一定是屬於 自己的。
還有一個故事，是我小時候父親講給我聽的。有一次，我們看到一群鴨子在河裡游泳，父親便問我說：「你看到了嗎？小鴨游出小路，大鴨游出大路，有的鴨子在前面，有的鴨子在後面，但是每一隻鴨子最終都游到河的對岸去了。」這個故事對我的影響很深遠，讓我知道，人與人之間不需要比較，只要 努力走出自己的路就好。
在人生的路途上，不管自己的步調如何，只要是自己走出來的路，這條路就是屬於自己的。例如，「心靈環保」這個名詞， 雖然是我最先提出來的，可是別人也在做，甚至做得更好，不過我不會和他們比較，而且歡迎他們和我一起來推廣這個理念。所以別人的路我可以走，而我的路也可 以讓別人來走。重點是不要互相比較，因為和別人較勁是件痛苦的事，盡力而為，絕對是最可靠的行事態度。
不過，較量心也不完全是負面的，例如，凡夫看到佛已經成了佛，或是某些人在修行方面成就很大，既慈悲又有智慧，相較之下，自己卻沒有這些成就，於是生起效尤之心，發願努力精進。所以在修行的道路上，正面的較量，能激發見賢思齊的心。
《金 剛經》中談到，以恆河之沙這麼多數量的三千大千世界的七寶來布施，其福德還比不上為他人說四句含有佛法深意的偈子，這種在功德上互相較量，便是「好還要更好」、「精益求精」的意義。另外，佛法也有「四正勤」這個名詞──已修的善要增長，未修的善要修學；已造的惡不要再造，尚未造的惡不可以造，也指出了較量 心在修行上正面、積極的意義。
所以，每當我聽說某某法師比我更強，或是某某學者學問比我更好，我不敢有妒嫉、打倒或是要強過他們的念頭，我 只會感到慚愧，知道自己必須更加努力。就像我為法鼓山的弟子們所寫的〈四眾佛子共勉語〉中有兩句：「盡心盡力第一，不爭你我多少。」意思是只要努力去做， 不要和別人比較，否則不但會傷害別人，也會延遲自己的成長。
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現代的社會，總是充滿著比較，從小，社會就開始無形當中灌輸"比較"，比課業，比成績，比乖巧，還有比誰的爸爸可以買下誰的爸爸（窮爸爸富爸爸）。
大一點，比工作，誰的薪水多，職業好，比誰的女友漂亮，貼心....
再大一點，要婚嫁了，比家室（門當戶對嘛）
更大一點，比成就，比名望，又比子女....
總是不斷地輪迴循環....
煩不煩ㄋ阿？
比不完啊～ 人比人氣死人～
比較，或許激發衝勁，或許帶來困擾，一體兩面～雙刃劍，
端看你如何拿捏，如何平衡～
或許比較也是一種在意他人眼光的象徵，"他人"泛指社會世俗的眼光或價值
你若很在意，那麼就會陷入無間的痛苦當中
2010年11月20日 星期六
輕鬆一下
感覺最近的文章都還挺嚴肅的，來一篇輕鬆小品，換個幽默的方式來看看自己的身體囉
素材是來自於朋友轉寄的
腦部說 :"既然我控制著每一件事情,負責作思考,我理所當然是老闆 .."
腳則說:"因為我帶著人到他想要去的地方 ,到達腦部想要所作所為的位置,我才理應當老闆."
手也開口 :"每件工作都要我完成,而且隨身攜帶金錢可以花,老闆應該是我 ."
眼睛也說:"你們每個部位都在我視線之內 ,我也讓大家知道哪裡有危險,當老闆我最有資格!"
接下來, 心臟 、 耳朵 、 肺部 都輪流開口發表政見.
最後終於輪到了 屁眼說話, 它當然也搶著要當老闆.
其他的器官都嘲笑屁眼的想法,搞得 屁眼 惱羞成怒, 遂閉 起它的"出口 "拒絕運作 ! .
很快的,腦部開始發燒,眼睛感到疼痛昏花,雙腳疲軟且舉步維艱 , 雙手也無力地垂下,心臟和肺部氣如游絲的支撐著.
所有的器官都妥協了, 大家墾求大腦別再堅持,就讓屁眼當老闆吧!
就這樣,屁眼 登上了 老闆 的寶座. 所有的器官都在執行各自的任務時 ,而屁眼只要當老闆頤指氣使,然後適時拉出一堆屎....
(這個故事告訴我們: "並不必要是首腦,才能當老闆 ". 或是 "老闆不一定要會思考"或是 "老闆只要能夠讓各個器官運作正常就好")
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想想我的處境：目前我的老闆還真的是屁眼 (肛門) 呢！ 因為肛門無法隨意打開（因為神經受損-->括約肌無法運作），讓我排便功能大大地受影響，便便積多了還會在腸內發酵造成毒素，影響全身....
老闆，讓我輕鬆的大個便好嗎？
素材是來自於朋友轉寄的
話說當God在創造人的身體時,
祂遇到了一個問題 : 每個器官都想當身體的老闆.腦部說 :"既然我控制著每一件事情,負責作思考,我理所當然是老闆 .."
腳則說:"因為我帶著人到他想要去的地方 ,到達腦部想要所作所為的位置,我才理應當老闆."
手也開口 :"每件工作都要我完成,而且隨身攜帶金錢可以花,老闆應該是我 ."
眼睛也說:"你們每個部位都在我視線之內 ,我也讓大家知道哪裡有危險,當老闆我最有資格!"
接下來, 心臟 、 耳朵 、 肺部 都輪流開口發表政見.
最後終於輪到了 屁眼說話, 它當然也搶著要當老闆.
其他的器官都嘲笑屁眼的想法,搞得 屁眼 惱羞成怒, 遂閉 起它的"出口 "拒絕運作 ! .
很快的,腦部開始發燒,眼睛感到疼痛昏花,雙腳疲軟且舉步維艱 , 雙手也無力地垂下,心臟和肺部氣如游絲的支撐著.
所有的器官都妥協了, 大家墾求大腦別再堅持,就讓屁眼當老闆吧!
就這樣,屁眼 登上了 老闆 的寶座. 所有的器官都在執行各自的任務時 ,而屁眼只要當老闆頤指氣使,然後適時拉出一堆屎....
(這個故事告訴我們: "並不必要是首腦,才能當老闆 ". 或是 "老闆不一定要會思考"或是 "老闆只要能夠讓各個器官運作正常就好")
-----------------------------------------------------
想想我的處境：目前我的老闆還真的是屁眼 (肛門) 呢！ 因為肛門無法隨意打開（因為神經受損-->括約肌無法運作），讓我排便功能大大地受影響，便便積多了還會在腸內發酵造成毒素，影響全身....
老闆，讓我輕鬆的大個便好嗎？
2010年11月19日 星期五
頸靜脈上安裝支架的風險
從去年2009年至今，從網路上我所得知有關在頸靜脈上安裝支架的MS病患不在少數，
Marian Simka, PhD, from the Department of Vascular and Endovascular Surgery at EUROMEDIC Specialist Clinics in Katowice, Poland, also presented interventional data on a total of 587 endovascular procedures — 414 balloon angioplasties and 173 stent placements — in 347 MS patients, looking specifically at safety.
波蘭Marian Simka醫師已經為347名MS病患進行了一共587次的靜脈擴張手術，
其中414次為氣球擴張，173次的支架擴張。
但截至目前為止，也出現了幾個不幸的例子：
Stanford University School of Medicine in Stanford, California.加州（1個例子）： 支架滑落至心臟 stents can migrate, pushed down from the neck toward the heart.
Bulgarian medical clinic 保加利亞（3個例子） ：在支架附近形成血栓 a blood clot had formed around the stent. stents have blocked with blood clots
Clinica Biblica in Costa Rica，San Jose 聖荷西, 加州（1個例子）：have a mesh stent inserted to prop open a vein in his neck and a blood clot formed around the stent in the vein
目前使用氣球擴張風險相對支架擴張而言較低。
Marian Simka, PhD, from the Department of Vascular and Endovascular Surgery at EUROMEDIC Specialist Clinics in Katowice, Poland, also presented interventional data on a total of 587 endovascular procedures — 414 balloon angioplasties and 173 stent placements — in 347 MS patients, looking specifically at safety.
波蘭Marian Simka醫師已經為347名MS病患進行了一共587次的靜脈擴張手術，
其中414次為氣球擴張，173次的支架擴張。
但截至目前為止，也出現了幾個不幸的例子：
Stanford University School of Medicine in Stanford, California.加州（1個例子）： 支架滑落至心臟 stents can migrate, pushed down from the neck toward the heart.
Bulgarian medical clinic 保加利亞（3個例子） ：在支架附近形成血栓 a blood clot had formed around the stent. stents have blocked with blood clots
Clinica Biblica in Costa Rica，San Jose 聖荷西, 加州（1個例子）：have a mesh stent inserted to prop open a vein in his neck and a blood clot formed around the stent in the vein
MS人注意，要作靜脈擴張術之前，請三思，建議目前最好不要使用支架擴張。國外有4位例子顯示相對的風險，血栓發生的可能而惡化以及支架安裝不穩所造成的風險。
目前使用氣球擴張風險相對支架擴張而言較低。
好消息: 罕病法修法三讀通過 強化罕病防治
本次「罕見疾病防治及藥物法」修法重點如下：
1. 為加強政府辦理罕見疾病防治研究之主動積極權責，政府應辦理罕病防治與研究。
2. 為確保罕見疾病防治研究業務得以順利推動，正式將罕見疾病預防、篩檢、研究之相關經費入法，明訂於主管機關應編列預算補助之項目。
3. 為舒緩罕病家庭長期使用居家醫療器材之經濟壓力，本次修法亦將居家醫療照護器材費用列入公務預算補助項目。
4. 為擴大罕病法預算並穩定其財源，本次修法更促使菸品健康福利捐之分配收入挹注於補助經費中。
[罕見疾病防治及藥物法修法條文對照表]
在看過修法後的結果，我相信未來對於相關的罕見疾病 如多發性硬化症等的疾病，至少會減少研究經費不足上的窘境，對於想要針對罕見疾病做研究的醫師和相關醫療機構，也是一個好消息。
所以國內針對腦內靜脈循環異常CCSVI 和多發性硬化症MS 的關聯 的正式研究和實驗應該是一個更大的助益。
期待這ㄧ點能夠早些進一步被釐清！能對相關病友有所幫助。
偉哉! 罕病基金會！
1. 為加強政府辦理罕見疾病防治研究之主動積極權責，政府應辦理罕病防治與研究。
2. 為確保罕見疾病防治研究業務得以順利推動，正式將罕見疾病預防、篩檢、研究之相關經費入法，明訂於主管機關應編列預算補助之項目。
3. 為舒緩罕病家庭長期使用居家醫療器材之經濟壓力，本次修法亦將居家醫療照護器材費用列入公務預算補助項目。
4. 為擴大罕病法預算並穩定其財源，本次修法更促使菸品健康福利捐之分配收入挹注於補助經費中。
[罕見疾病防治及藥物法修法條文對照表]
| 現行條文 | 99.11立法院三讀通過版本 |
| 第六條 中央主管機關得委託辦理罕見疾病之防治與研究。 | 中央主管機關應辦理罕見疾病之防治與研究。 |
| 第三十三條 中央主管機關應編列預算，補助依全民健保法依法未能給付之罕見疾病診斷、治療、藥物與維持生命所需之特殊營養食品費用。其補助方式、內容及其他相關事項之辦法，由中央主管機關定之。 補助經費，得接受相關單位或團體之捐助。 | 中央主管機關應編列預算，補助罕見疾病預防、篩檢、研究之相關經費及依全民健康保險法依法未能給付之罕見疾病診斷、治療、藥物與維持生命所需之特殊營養品、居家醫療照護器材費用。其補助方式、內容及其他相關事項之辦法，由中央主管機關定之。 前項補助經費，得由菸品健康福利捐之分配收入支應或接受機構、團體之捐助。 |
在看過修法後的結果，我相信未來對於相關的罕見疾病 如多發性硬化症等的疾病，至少會減少研究經費不足上的窘境，對於想要針對罕見疾病做研究的醫師和相關醫療機構，也是一個好消息。
所以國內針對腦內靜脈循環異常CCSVI 和多發性硬化症MS 的關聯 的正式研究和實驗應該是一個更大的助益。
期待這ㄧ點能夠早些進一步被釐清！能對相關病友有所幫助。
偉哉! 罕病基金會！
2010年11月18日 星期四
病友提供的藥物能夠協助有比較好的睡眠品質
介紹兩種藥物，病友可以進一步詢問醫師是否台灣有此藥物以及是否通過衛署核准
1.Low Dose Naltrexone 那曲酮（低劑量的Naltrexone）：睡前使用，劑量：1.5 mg~4.5 mg
FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.
美國FDA核准的藥物（低劑量），可幫助自體免疫以及中樞神經系統異常的病症
與MS適應症狀的關係：
People who have Multiple Sclerosis that has led to muscle spasms are advised to begin LDN treatment with just 3mg daily and to maintain that dosage.
適用於肌肉經欒（抽搐;抽筋）
Patients who are exposed to undue fatigue, heat, or a febrile illness may demonstrate a recurrence of prior symptoms, stemming from an area of old neurologic involvement. These areas tend to have increased irritability of nervous tissue surrounding old healed MS scars ("plaques"). Such an episode may be very transient and may not represent a true relapse.
適用於過度感到疲累;倦怠; 發熱的症狀
相關連結：http://www.lowdosenaltrexone.org/ldn_and_ms.htm
http://www.lowdosenaltrexone.org/
2. Gabapentin 鎮頑癲 (輝瑞大藥廠股份有限公司)/康平癲 (瑞士藥廠股份有限公司)
建議：睡前使用
Gabapentin was originally approved in the U.S. by the Food and Drug Administration (FDA) in 1994 for use as an adjunctive medication to control partial seizures (effective when added to other antiseizure drugs). In 2002, an indication was added for treating postherpetic neuralgia (neuropathic pain following shingles), other painful neuropathies, and nerve-related pain.
1994通過美國FDA核准，適用於癲癇，止痛，特別是神經相關的疼痛症狀。
Gabapentin (brand name Neurontin) is a pharmaceutical drug, specifically a GABA analogue. It was originally developed for the treatment of epilepsy, and currently, gabapentin is widely used to relieve pain, especially neuropathic pain.
兩種藥物據病友服用之後有獲得較好得睡眠品質，
相關連結：
http://en.wikipedia.org/wiki/Gabapentin
http://www.google.com.tw/search?hl=zh-TW&client=firefox-a&hs=Ci0&rls=org.mozilla:zh-TW:official&q=gabapentin%E5%89%AF%E4%BD%9C%E7%94%A8&revid=1327609393&sa=X&ei=G-XkTKO-KoLyvQOS7PiYDQ&ved=0CIMBENUCKAA
http://www.ntuh.gov.tw/PMR/Lists/List14/Attachments/87/10253009-200612-34-4-197-208-a.pdf
再次強調：請務必先閱讀以上相關連結後，再詢問醫師和醫師討論是否適合自己的症狀，並且以合法管道取得，切莫隨意購買或擅自服用，避免不必要的副作用或者是藥物上癮症狀產生。
1.Low Dose Naltrexone 那曲酮（低劑量的Naltrexone）：睡前使用，劑量：1.5 mg~4.5 mg
FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.
美國FDA核准的藥物（低劑量），可幫助自體免疫以及中樞神經系統異常的病症
與MS適應症狀的關係：
People who have Multiple Sclerosis that has led to muscle spasms are advised to begin LDN treatment with just 3mg daily and to maintain that dosage.
適用於肌肉經欒（抽搐;抽筋）
Patients who are exposed to undue fatigue, heat, or a febrile illness may demonstrate a recurrence of prior symptoms, stemming from an area of old neurologic involvement. These areas tend to have increased irritability of nervous tissue surrounding old healed MS scars ("plaques"). Such an episode may be very transient and may not represent a true relapse.
適用於過度感到疲累;倦怠; 發熱的症狀
相關連結：http://www.lowdosenaltrexone.org/ldn_and_ms.htm
http://www.lowdosenaltrexone.org/
2. Gabapentin 鎮頑癲 (輝瑞大藥廠股份有限公司)/康平癲 (瑞士藥廠股份有限公司)
建議：睡前使用
Gabapentin was originally approved in the U.S. by the Food and Drug Administration (FDA) in 1994 for use as an adjunctive medication to control partial seizures (effective when added to other antiseizure drugs). In 2002, an indication was added for treating postherpetic neuralgia (neuropathic pain following shingles), other painful neuropathies, and nerve-related pain.
1994通過美國FDA核准，適用於癲癇，止痛，特別是神經相關的疼痛症狀。
Gabapentin (brand name Neurontin) is a pharmaceutical drug, specifically a GABA analogue. It was originally developed for the treatment of epilepsy, and currently, gabapentin is widely used to relieve pain, especially neuropathic pain.
兩種藥物據病友服用之後有獲得較好得睡眠品質，
相關連結：
http://en.wikipedia.org/wiki/Gabapentin
http://www.google.com.tw/search?hl=zh-TW&client=firefox-a&hs=Ci0&rls=org.mozilla:zh-TW:official&q=gabapentin%E5%89%AF%E4%BD%9C%E7%94%A8&revid=1327609393&sa=X&ei=G-XkTKO-KoLyvQOS7PiYDQ&ved=0CIMBENUCKAA
http://www.ntuh.gov.tw/PMR/Lists/List14/Attachments/87/10253009-200612-34-4-197-208-a.pdf
再次強調：請務必先閱讀以上相關連結後，再詢問醫師和醫師討論是否適合自己的症狀，並且以合法管道取得，切莫隨意購買或擅自服用，避免不必要的副作用或者是藥物上癮症狀產生。
2010年11月17日 星期三
如果..
這是我今年度投稿至 第九屆文薈獎──全國身心障礙者文藝獎 的另一個新詩作品
因為得到多發性硬化症心有所感而創作的
分享給大家欣賞...
因為得到多發性硬化症心有所感而創作的
分享給大家欣賞...
如果
如果，人生可以重來
我將不會重蹈之前的覆轍
我將會好好的善待自己的身體
如果，人生可以重來
我將不會把金錢和物質看得比我的健康還重要
如果，人生可以重來
我發誓絕對不要坐回輪椅
如果，人生可以重來
每天規律的作息和運動將是我日常生活守則
只是，人生只有一次，無法重來
既然如此，我只有竭盡我所能，回復到往日的時光
不論有多麼艱難，我相信一定有明天！
一年一度的 MS 健走，慢跑，遊行活動
請見以下連結
http://myemail.constantcontact.com/Walk-towards-a-cure-for-MS--exciting-updates-for-2011.html?soid=1101245877983&aid=s_YS6XVtb78
在國外(北美)每年都有這樣的活動共在15000個地區舉辦，主要目的不僅是聚會，加油，募款，並且希望個世界能夠沒有MS多發性硬化症。
Greetings!
http://myemail.constantcontact.com/Walk-towards-a-cure-for-MS--exciting-updates-for-2011.html?soid=1101245877983&aid=s_YS6XVtb78
在國外(北美)每年都有這樣的活動共在15000個地區舉辦，主要目的不僅是聚會，加油，募款，並且希望個世界能夠沒有MS多發性硬化症。
Greetings!
Joining a Walk MS event in your area is an incredibly powerful way for you to make your mark against MS.
Join 15,000 area residents who care about people affected by MS by participating, volunteering or recruiting walkers in 2011.
Join 15,000 area residents who care about people affected by MS by participating, volunteering or recruiting walkers in 2011.
2010年11月15日 星期一
靜脈擴張術必須小心注意的事 重要!
引述:CTV.ca News Staffate: Saturday Nov. 13, 2010 10:00 PM ET
MS patients warn of complications after 'liberation'（Stent problem 因為放置支架於頸靜脈中而再次造成血栓）
日前有3位MS病患出國遠赴保加利亞去作靜脈擴張手術，因為放置了支架（stent)，造成了血栓的可能而再度造成症狀的惡化。在此特別請病友注意，若你準備作靜脈擴張手術，盡可能請不要裝支架於靜脈內。以目前我所知道的案例當中，症狀有惡化的多屬於裝置支架的臨床例子。目前支架安至於靜脈當中並不是非常成熟的技術，成功率仍需要再考慮和討論。只建議病友採用氣球擴張的方式。台灣的MS病友請放心，若欲進行靜脈擴張手術的話，北榮目前沒有也不建議使用支架。詳細新聞請見以下報導：Three multiple sclerosis patients who went outside the country for the "liberation treatment" are warning other patients to make sure they have follow-up care in case they return with complications.
One of them is longtime MS patient Jan Wexler, who went to a Bulgarian medical clinic in June. Doctors there performed an angioplasty on one of her jugular veins in her neck and the azygos vein in her chest, using a catheter-guided balloon to open up veins in the neck, in an effort to improve drainage from the brain.
During the treatment, the doctors placed a metal mesh stent inside the jugular vein to try to prop it open.
For about a week after the treatment, Wexler says she felt great, saying the weight of her symptoms lifted.
"I could sit up perfectly straight in my hospital bed, I could raise both of my arms way above my head," she remembers.
But a week later, the improvements disappeared and Wexler was more disabled than before.
She returned to Bulgaria in July, where doctors found that all the veins were now blocked more than before the first treatment and a blood clot had formed around the stent.
Now, Jan says her health has deteriorated. She is weaker than ever, she can no longer cook or drive, and she needs help bathing.
Wexler says she now regrets ever getting the treatment.
"If I knew that I was going to get worse, I would not have had it done, of course," she says.
Betty Taylor, a single mother of two from Edmonton, also travelled overseas for the treatment. She too went to Bulgaria in June where she underwent two angioplasties, one to open her azygos vein and another on a jugular vein. After her jugular vein blocked up again within days of the first treatment, doctors went in again and inserted a stent.
"I noticed an immediate improvement. Overall, I had more energy I felt better and I was just looking forward to feeling, you know, a little better every day." Betty remembers.
"Right after the treatment I would say I felt 25 per cent better. Within a couple of weeks of the treatment, I definitely felt about 50 per cent better."
But she thinks either the stents have blocked with blood clots, or the veins have re-narrowed, because the benefits of the treatment are now gone.
"I feel worse than before the treatment. Yes, right now I do," she says. "I have no idea what's going on. I just know something is not right and it needs to be fixed."
The Italian surgeon who developed the "liberation treatment," Dr. Paolo Zamboni, used balloon angioplasty to open the veins. He found in his preliminary studies that about 47 per cent of patients saw their veins re-narrow.
Other vascular doctors and interventional radiologists who have started offering the procedure in various clinics around the world have also seen the re-narrowing. So some have been using stents to try to keep the veins from re-narrowing.
Dr. Zamboni doesn't endorse this and has discouraged the use of stents. He notes that patients who have stents inserted for other procedures usually require blood thinners and careful monitoring for blood clots afterward.
There is also the danger that the stents can migrate, pushed down from the neck toward the heart. That has already happened in one patient who was treated In California. That patient required open heart surgery to remove the stent.
While some MS patients are reporting significant, long-lasting improvements after travelling abroad for the liberation treatment, a small but growing number of serious complications are being reported.
One severely disabled Canadian MS patient who was treated in a foreign clinic using a stent developed complications and returned to the clinic for follow-up care. He died shortly after. While CTV News attempted to reach the man's family to learn more, our phone calls were not returned.
Earlier this week, Dr. Yves Robert of the Quebec College of Physicians warned that his members were hearing more of these problems.
"We are seeing patients with significant thrombosis," he told reporters in Montreal.
"It is felt that the number of complications are badly monitored internationally and likely under-reported," he said.
Most foreign clinics offer little or no follow-up after the procedure and few ensure that patients have proper treatment when they return home. Patients who run into problems are left to seek medical care at home, but some are reporting that Canadian doctors won't treat their "liberation" treatment-related complications.
Taylor says when her MS symptoms worsened, she went to her doctor to ask what to do.
"I did not get any help. I specifically did ask one doctor that I see if I could get a referral to a local vascular surgeon just to have someone to talk to about the symptoms I was experiencing. I was given the response. ‘No.' I would not get a referral. "Because I have MS, they are not entitled to be treating me in terms of vascular disease," she said.
Francine Deshaies also developed serious clots after angioplasty treatment in Poland.
"I thought I was dying. I was really scared because it was really painful and I didn't know what to expect," she says
She went to a hospital in Montreal where she says she was told "no vascular doctor" would see her. She eventually found a specialist who's treating her with blood thinners and she now says she feels better than ever. But she has a warning for other patients seeking treatment overseas.
"Follow up is the most important thing. When you come back you've got to see a doctor. If you don't have a doctor or follow-up, you better not go. If you have a problem, you are done," she says.
Earlier, this week, doctors in Quebec discouraged patients from seeking the treatment overseas until formal studies are completed. But the doctors say that given the possibility of complications of blood clots, patients who choose to go abroad will get follow-up care.
The message from doctors in other provinces isn't clear.
Meanwhile, Taylor is booked for another procedure in November where she hopes an American doctor will deal with her complications and give her a lasting improvement.
Wexler is also hoping to find a way to deal with her situation at a clinic in California. She still believes the treatment will have merit for many of those with MS. But she has her own advice for MS patients eager to get the endovascular treatment and are willing to travel anywhere for it.
"I would say if you can wait until there is more out there, because you don't want to get worse. That's the thing," she says.
2010年11月13日 星期六
從來沒想過
這是我今年度投稿至 第九屆文薈獎──全國身心障礙者文藝獎 的新詩作品
因為得到多發性硬化正心有所感而創作的
分享給大家欣賞...
從來沒想過
從來沒想過，自己的人生是如此的不平凡
從天堂墜落地獄
從來沒想過，自己的人生是如此的罕見
必須要面對無法治癒的疾病，而她竟是如此的折磨人
從來沒想過，原來身體竟是可以如此不受到自己的控制
肌肉無時無刻都處於緊繃僵硬的狀態下
夜晚來臨，無數次的抽筋經孿伴我入眠
從來沒想過，無法控制自己的大小便竟是如此的不便
和如此的狼狽
從來沒想過，病症隨機的發作竟然成為人生中最大的恐懼
每天只希望能夠再看見明日的太陽，
活下去成為人生中唯一的夢想和希望
從來沒想過，坐在輪椅上是多麼的不便
從來沒想過，成為路人注目的對象
就因為從來沒想過，這才是人生。
很可惜，連佳作都沒有，這表示，有很多身心障礙者的文筆都相當好呢！
人生有很多都是沒有想過的~!
因為得到多發性硬化正心有所感而創作的
分享給大家欣賞...
從來沒想過
從來沒想過，自己的人生是如此的不平凡
從天堂墜落地獄
從來沒想過，自己的人生是如此的罕見
必須要面對無法治癒的疾病，而她竟是如此的折磨人
從來沒想過，原來身體竟是可以如此不受到自己的控制
肌肉無時無刻都處於緊繃僵硬的狀態下
夜晚來臨，無數次的抽筋經孿伴我入眠
從來沒想過，無法控制自己的大小便竟是如此的不便
和如此的狼狽
從來沒想過，病症隨機的發作竟然成為人生中最大的恐懼
每天只希望能夠再看見明日的太陽，
活下去成為人生中唯一的夢想和希望
從來沒想過，坐在輪椅上是多麼的不便
從來沒想過，成為路人注目的對象
就因為從來沒想過，這才是人生。
很可惜，連佳作都沒有，這表示，有很多身心障礙者的文筆都相當好呢！
人生有很多都是沒有想過的~!
2010年11月10日 星期三
MICHAEL LORTIE的故事
來看看MICHAEL LORTIE的故事
請看最下面的影片就可以知道他恢復的情形
或附上影片連結：http://www.ckwstv.com/index.cfm?page=news&id=3639
MICHAEL LORTIE CONSIDERS HIMSELF A NEW PERSON--- HE SAYS HE IS NOW ABLE TO DO THINGS THAT UP UNTIL RECENTLY HAVE BEEN OUT OF REACH.
MIKE LORTIE:
" NOW I CAN SEE COLOURS, AND I SAW THE COLOURS THE VERY NEXT DAY."
LORTIE CAN NOW SEE OUT OF HIS LEFT EYE--- HIS SPEECH--- AND MOBILITY ALL IMPROVED DRASTICALLY.
SEPTEMBER 16TH WAS THE DAY LORTIE'S LIFE CHANGED.
HE DECIDED TO GO TO COSTA RICA TO RECEIVE A CONTROVERSIAL SURGERY CALLED LIBERATION TREATMENT.
THE 20 THOUSAND DOLLAR TREATMENT, DEVELOPED BY ITALIAN DOCTOR PAOLO (PAULO) ZAMBONI, IS BASED ON THE THEORY THAT BLOCKED VEINS IN THE NECK ARE LINKED TO M-S. BY OPENING THOSE VEINS, MOVEMENT WILL BE RESTORED FOR PEOPLE WITH THE DISEASE.
MIKE LORTIE:
"I LABELED IT RIGHT FROM THE BEGINNING TO EVERYBODY, A JOURNEY TO FREEDOM AND IT IS LIKE FREEDOM."
ACCORDING TO LORTIE, THE LIBERATION TREATMENT HAS ALREADY WORKED WONDERS.
THIS IS THE 45 YEAR OLD WALKING BEFORE THE TREATMENT.
AND THIS IS HIM WALKING AFTER THE TREATMENT.
MICHAEL LORTIE:
"THE DROP FOOT IS PRETTY MUCH GONE AND SINCE THE PROCEDURE I HAVE NOT WORN MY LEG BRACE WHICH IS A REALLY NICE FEELING NOT TO HAVE TO PUT IT ON EVERY SINGLE MORNING."
AILEEN YOUNG:
"THE COLOUR IN HIS FACE AS SOON AS HE CAME BACK INTO THE ROOM HE WASN'T THE PASTY PALE COLOUR HE HAD ROSY CHEEKS AGAIN HIS BROWN EYES JUST SNAPPING, HIS SPEECH WAS ALMOST INSTANTLY SMOOTHER HIS SENTENCES THEY FLOWED HE WASN'T SEARCHING FOR WORDS."
MORGANNE CAMPBELL:
"THERE ARE NEARLY 75,000 CANADIANS LIVING WITH MULTIPLE SCLEROSIS--A DEGENERATIVE DISEASE THAT ATTACKS THE MYELIN SHEATH--WHICH SURROUNDS THE NERVES IN THE CENTRAL NERVOUS SYSTEM.
THE DISEASE IS PROGRESSIVE, STRIKING MOSTLY YOUNG PEOPLE BETWEEN THE AGES OF 15 AND 40."
THE CONTROVERSIAL SURGERY HAS RECEIVED MIXED REVIEWS FROM THE WORLD'S MEDICAL COMMUNITY.
DR. ROBERT ZIVADINOV:
"IT WILL TAKE A NUMBER OF YEARS TO UNDERSTAND IF THERE IS ANY VALUE IN SUCH AN APPROACH."
LIBERATION TREATMENT IS CURRENTLY NOT AVAILABLE IN ONTARIO.
THAT'S WHY HUNDREDS OF MEN AND WOMEN LEAVE CANADA EVERY MONTH AND HEAD TO COUNTRIES THAT OFFER THE EXPERIMENTAL PROCEDURE.
MIKE LORTIE:
" WHAT'S THE PRICE OF FREEDOM, WHAT'S THE PRICE OF YOUR HEALTH"
THE PROVINCE OF SASKATCHEWAN STARTED TO FUND CLINICAL TRIALS THIS PAST JULY-A FIRST IN CANADA.
SOME MEMBERS OF THE ONTARIO'S CONSERVATIVE GOVERNMENT WOULD LIKE TO SEE THE PROVINCE FOLLOW SASKATCHEWAN'S LEAD AND BEGIN VIGOUROUS TESTING.
STEVE CLARK:
" I REALLY THINK ALL OF THE PROVINCES NEED TO MOVE FORWARD, WE NEED TO BAND TOGETHER AND WE NEED TO DO THE CLINICAL TRIALS BECAUSE THESE PEOPLE ARE DESPERATE FOR HELP. "
BUT ACCORDING TO THE M-S SOCIETY IN KINGSTON, MORE TESTING NEEDS TO BE DONE BEFORE THE PROCEDURE IS BROUGHT INTO CANADIAN HOSPITALS.
MARIE WELLES:
" THE POSITION OF THE MS SOCIETY IS "CCSV"I IS IT'S NOT PROVEN BUT IT'S NOT DISMISSED."
THE MS SOCIETIES OF CANADA AND THE UNITED STATES HAVE INVESTED OVER THREE MILLION DOLLARS INTO FUNDING RESEARCH PROGRAMS AND CLINICAL TRIALS INTO DR. ZAMBONI'S TREATMENT.
MARIE WELLES:
"THEY'VE BEEN WORKING VERY CLOSELY WITH THE GOVERNMENT OF CANADA TO EXPEDITE THAT THIS GETS ROLLING VERY QUICKLY."
EVERYDAY IN CANADA THREE PEOPLE IN THE COUNTRY ARE DIAGNOSED WITH MS...FOR THEM, EVERYDAY COUNTS.
UNTIL A CURE IS FOUND, THE CONTROVERSIAL LIBERATION TREATMENT BRINGS HOPE FOR THOSE BATTLING THE PROGRESSIVE DISEASE. MORGANNE CAMPBELL CKWS NEWSWATCH KINGSTON.
MICHAEL LORTIE:
" IT TRULY IS AN EXPERIENCE AND IT'S SOMETHING THAT I WOULD NOT CHANGE FOR THE WORLD."
成功實驗性的手術Experimental surgery a success
摘自Experimental surgery a success - News - The Advertiser
Cora Ward，一位罹患多發性硬化症達33年的女士，上個月從波蘭做完靜脈擴張術後，體驗到了驚人的進步。她可以彈指了。
His studies of chronic cerebrospinal venous insufficiency (CCSVI) determined that the symptoms of MS could be alleviated. According to the MS Society of Canada, the condition involves "a hypothetical disruption of blood flow in which the venous system is not able to efficiently move blood from the central nervous system, resulting in increased pressure in the veins of the brain and spinal cords, which in turn results in damage to these areas."
Local woman experiences amazing improvements
Cora Ward在手術後展現的笑容
Point Leamington resident Cora Ward returned home from Poland last month after receiving the controversial Liberation treatment to treat symptoms of MS, a disease she has had for 33 years.
Local woman experiences amazing improvements
Cora Ward can snap her fingers. For most people, the simple act of clicking their thumb across their fingers is something they are able to do naturallyCora Ward，一位罹患多發性硬化症達33年的女士，上個月從波蘭做完靜脈擴張術後，體驗到了驚人的進步。她可以彈指了。
For most people, the simple act of clicking their thumb across their fingers is something they are able to do naturally. But for the 50-year-old Point Leamington resident, it is something she has not been able to do for over two decades.
對許多人而言，彈手指是一個再簡單不過的事，但是對50歲的她，無法做這個動作已經20年了
She has suffered from multiple sclerosis (MS) for the past 33 years.
In mid-October, she returned from Tychy, Poland, where she underwent a controversial surgery known as the Liberation treatment to hopefully alleviate symptoms of the disease.
“Before, when she went to get out of the car, (her husband) would have to stop the car, get out, open her door and turn her. When she stopped that day, he never got a chance to stop the car before she got out." - Yvonne Janes
“They do (the procedure) and then they want you to lie in bed for six hours,” Ms. Ward said. “I felt my fingers right away. When I woke up I said ‘oh! I can feel my hands!’”
再經過靜脈擴張術後，躺在床上約6小時，我立刻可以再度感覺到我手指的存在，當我睡醒後，喔，我可以感覺到整隻手了!!
The new technique, developed by Italian researcher Dr. Paolo Zamboni, came to light in late 2009.
The treatment involves an angioplasty-like procedure to open the blocked vein with a small balloon.
Ms. Ward was able to travel to Poland thanks to the fundraising efforts of people in her hometown and surrounding areas who provided her with close to $15,000. The community came together for walk-a-thons, bake sales and concerts to raise the money.
Cora Ward能夠旅行到波蘭，是因為在他家鄉許多人的募款活動(遊行，賣烘培食物，舉辦音樂會)讓她能夠到波蘭進行15000美金的手術。
And the community was waiting for her at the bridge in Point Leamington on Oct. 16 when she returned.
Yvonne Janes has been involved with several fundraising initiatives for Ms. Ward.
珍妮就是為了她參與募款的人，
Residents of the town were excited for her return, she said.
鄰居們對於他的回復都很激動也很興奮。
“She started to cry when she saw everyone,” Ms. Janes said.
當Cora Ward看到鄰居們隨即懷著感激的心情激動得落淚
“Before, when she went to get out of the car, (her husband) would have to stop the car, get out, open her door and turn her. When she stopped that day, he never got a chance to stop the car before she got out. Everyone was amazed at how fast she got out of the car.”
Ms. Ward has experienced significant results from the procedure, which helped open blockages that doctors treating her in Poland said had closed 80 per cent of the vein on the left side of her neck and 20 per cent on the other.
醫師告訴Cora Ward他的靜脈接近80%的窄化程度(只剩20%)
When asked by the Advertiser whether her positive outlook and faith assisted in the results, she said the surgery itself was amazing.
“I don’t think so,” she said. “Because the things you saw over there was fantastic. One girl was done with me – she used to have to drink through a straw and she had tremors. After she only had a slight tremor, nothing like before. I am sure faith and a positive attitude has a lot to do with it, but she was changed.”
Ms. Ward said she had requested to be included in a study announced by the provincial government in September into the surgery, however to date she has heard nothing from the Department of Health in that regard.
“I called (for the trials) and told them I was going to Poland. Nothing was set up before I went on Oct. 8,” she said. “I called again and told them I was back. The doctor in Poland sent a CD of the procedure and the information on the blood flow before and after. I am very frustrated. They have the equipment and they have the people who know how to do it. What are they waiting for? They came out and said it, everybody was really excited that our province was going to help do something for people and it has gone nowhere.”
For now, Ms. Ward is simply enjoying her newfound ability to perform tasks most people take for granted. As she speaks, she alternates between crossing her legs and swinging them like a child, both simple acts she was unable to do a month ago.
She said her whole body has improved and she heartily recommends the treatment to other MS patients.
“I was like a piece of cardboard before - now it is not like that,” she said with a smile.
“I would say to anyone who is thinking about it – go. Your life is changed.”
我會對正在思考這個手術的任何人說: 去吧 你會改變你的生活!
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