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
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