And then I dreamt:

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

And then I dreamt:

Postby 1eye » Tue Mar 22, 2011 5:00 pm

And then I dreamt:

I dreamed again last night. It was one of those all-night dreams. I could not tell you whether I was awake or asleep, except that Petey the poodle barked, and I was awake after that. I think you may only remember your dreams if you wake up in the middle of them.

Anyway, in the first dream, I was in Washington. My grandmother lived there, and worked for a Congressman from Michigan, Bill Broomfield. In 1956, Broomfield was elected as a Republican from Michigan's 18th District to the United States House of Representatives for the 85th and to the seventeen succeeding Congresses, serving from January 3, 1957. I had my picture taken with my family in his office. I think Kennedy was running against Nixon.

You know how dreams seem to segue better than television or the movies? Well, this one did, while we were looking at the White House. I mean we were in some room that looked like a living room. Then the segue happened, and I was at my desk in the second grade. A nun popped her head in the door and motioned for our teacher to come and speak to her. They spoke quietly outside the door, and when the teacher came in she was crying. She told us we were all to go home, and then said a very odd thing. She said the president of the United States had been shot, and she didn’t know if he was even alive.

Somehow, it was arranged, that I was already home. I had the dreads, that I always felt when something momentous, and not entertaining, was on TV. I had felt the same way when I had wandered in, to where my parents were watching late TV news. They did not look up. The newscaster said that Martians had just landed in Washington, and there was live coverage, where the army was standing by, and the spaceship was about to open. I was terrified.

That had only been a movie. This was real, I knew. While I was watching, the man Lee Oswald, who had had something to do with John Kennedy’s murder, was shot and killed. To me it was like watching a frightening police show, but not as exciting. Very dreadful, and not at all fun.

Another segue happened. I was watching an old black and white television which belonged to my other grandmother, who had a room built on to the back of our house. Grandma didn’t like black people. Every time a black person came on the television, she would always say the same tired old stuff. We knew she couldn’t help it, that she was just old. This time, though, she was watching, and so were my parents. They shushed us kids, because they wanted to hear. Martin Luther King was talking to a lot of people in Washington D.C. He kept talking about dreams.

As he was doing so, my father closed the front door behind him, as he arrived home from a hard day’s work at the University. He put down his briefcase and gave my mother a kiss. He said he had had bad news, a letter from Paul, one of his star students, who had been over at our house carousing at parties. In addition to his scholarship, Paul could sing and play the guitar.

Dad told mom that Paul had come down with an ailment called MS. He told her Paul was going blind. The dream then segued again, this time to a late evening, when both of my parents we taking turns reading out loud into a microphone. They were making tapes to send to Paul. They were special tapes, which included all the paragraphs, page numbers, everything on the page, of a book Paul was doing a dissertation on. It was strange, to hear all the commas and other punctuation, spoken aloud along with the words.

That was when Petey the dog barked and woke me up. It was about three A.M. After about a half hour of poking, my wife Suzanne carried him out to the living room and put him in his bed. He commenced his attention-getting cough. He sounds just like my mother. He was her dog, and we inherited him when she died.

He kept that up for about forty minutes, before I went and slammed the bedroom door. I did not sleep, though. I was thinking about slavery, and poverty. I have not known anything like black slavery, or the subsequent oppression. I have been poor, living from hand to mouth, and on the street. It was only much later in my life, when I was successful, married, lost my father, and had two children of my own, that I became a slave.

I had thought that I was safe from that, because I was a middle-class white male with a college degree, and lived in the ‘Free World’. I had not known that slavery comes in many forms, and can strike down anyone. It all depends on luck. If you happened to be in the wrong place when a white man was hunting in the African bush, or in recent years when a business man was recruiting Thai prostitutes, or when doctors were looking for drug trial participants, you too could join us.

Living in the ‘Third World’ has nothing to do with it. The colour of your skin has nothing to do with it. Medicine has nothing to do with it. Money and pride have something to do with it. Someone called it the Dark Side of Science. That, too, has to do with it. In this ‘Free World’, where people talk a good game about human rights, about democracy and freedom, we have encountered the medical-industrial complex. We are in the hold of a trans-Atlantic slaver, and some of us are sick and dying.

When I was younger, people like Pierre Trudeau and David Lewis talked about Universality. They spoke as if it were something like skin, which you got just for being born human. They talked as if, at least us Canadians, already had it. I certainly had had my share of its benefits, what with hospitalization, elections, unemployment insurance and so on.

Later on, when I joined the CCSVI/MS slave community, I had no idea that these were just fancy words, and that not even written laws could give them life. It turned out they depend, like a lot of other things we take for granted, on social convention, habitual practice, and consensus.

The result you all know only too well, especially if you are a Canadian with CCSVI. You have had the misfortune to arrive on the wrong side of history, in a world where neurologists rule, and science, evidence, and experience take a ride with you at the back of the bus. You are no more powerful than a leper in New Brunswick in the nineteenth century.

What can be done? Maybe nothing. Maybe people will continue to prescribe and to insist you pay them for the Tysabris and the Galenas, Rebifs, Avonex’s, etc. Maybe you will continue to suffer and die, like my dad’s student Paul, and like Bill Peart, and like 400 other Canadians every year, this year included.

I have a dream: that all people who have been diagnosed with various types of MS from all the Canadian provinces and all the Canadian territories, can get tested for CCSVI.

I have a dream: that all the Canadians who want the venoplasty procedure for CCSVI can get it, with the same assistance from the various health care insurance providers as if they had had a car accident.

I have a dream: that all the people who have been diagnosed with various types of MS from everywhere in every State of the United States of America, and every State in the World can get it, with the same ease that a Canadian can get a flu shot.

I have a dream: that brethren, fellow CCSVI sufferers, their families, friends and caregivers, from that land to the south of us, that beacon of Freedom and Hope, the United States of America, will rise up and join their fellow sufferers on Parliament Hill in Canada, on the fifth day of May in the year of our Lord two thousand and eleven, calling, crying for the decent care a fellow human being should be able to get, in her or his own town, referred by her or his own family doctor, including the angioplasty procedure for CCSVI.

Let liberation ring.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby soapdiva884 » Tue Mar 22, 2011 5:23 pm

Let liberation ring! I too have the same dreams!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Lyon » Tue Mar 22, 2011 7:11 pm

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Last edited by Lyon on Fri Jun 24, 2011 6:50 pm, edited 1 time in total.
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Postby Cece » Tue Mar 22, 2011 7:16 pm

I hope that is not sarcastic, because I do as well.

Let liberation ring!!
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Postby HappyPoet » Tue Mar 22, 2011 8:06 pm

Wonderful writing, thank you.

Let Liberation Ring.
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Postby Lyon » Tue Mar 22, 2011 8:07 pm

..
Last edited by Lyon on Fri Jun 24, 2011 6:49 pm, edited 1 time in total.
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liberation

Postby zinamaria » Tue Mar 22, 2011 8:23 pm

leye,

I am very moved by what you have shared with us here, especially that it was from your dream life. I am a heavy dreamer, always have been and almost always remember them, whether I wake in the middle of them or not. I guess you could say I have a relationship with my dreams, which is very special. I have always felt sad when someone has said to me: Dream? I don't dream, or I don't remember them if I do. They are such a nourishing aspect of our existence, I think.

What strikes me tonight as I read your dreams is the richness, the texture of your dreams. There is so much there and I do not believe in such a thing as a standard interpretation of dreams, but I do think one can make their own interpretations, to try to find what it is a dream might be trying to tell us. And I venture to say, that you are remembering your dreams enough to articulate them in such a heartfelt manner is a sign, perhaps, perhaps, that you are healing.

I want to thank you again for this open display of what is clearly not only a 'talent' for writing, but something shared from those deeper wells of existence (which is what all writing is about) that is always such a mystery; what feels to me like deep caring not only for freedom, but for humanity. Indeed, you have dream, and that dream is a vision.

z
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Postby Shannon » Wed Mar 23, 2011 6:01 am

Funny, as I was just logging on to TIMS asking myself, "Why do I feel the need to come here everyday and read?" I had the thought "because I want SO BAD to be liberated, that's why!" I loved your post because it's what so many of us with MS are now feeling. Maybe it is just like what the blacks during MLK were feeling. Let down...underrepresented...cast aside. I have hope, but one thing I feel like I don't have, is time. Time to wait for liberation to ring! Thanks for sharing your dream. :D
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Postby David1949 » Wed Mar 23, 2011 11:00 am

In Canada you cannot get Liberated because your government won’t let you.
In the US, we are restricted in being liberated because some Institutional Review boards (IRBs) prohibit it. Dr. Haacke’s office is at Wayne State University in Detroit Michigan. I’ve inquired as to whether I could be tested there for CCSVI. The answer is no. I have it on good authority that the local IRB won’t allow it. (You can only be tested for CCSVI as part of the IRB approved study for which I am too old) So what is an IRB? Wikipedia gives this info:

“An institutional review board (IRB), also known as an independent ethics committee (IEC) or ethical review board (ERB), is a committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the research subjects.In the United States, the Food and Drug Administration (FDA) and Department of Health and Human Services (specifically Office for Human Research Protections) regulations have empowered IRBs to approve, require modifications in planned research prior to approval, or disapprove research.”
Source http://en.wikipedia.org/wiki/Institutional_review_board

Note that the IRB derives it’s power from the FDA i.e. government. So once again government is interfering with our ability to be liberated.

To those of us at TIMS, Liberation means the treatment to liberate our blood flow from CCSVI. But if we want to be liberated from CCSVI we must first be liberated from excessive government.
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Postby 1eye » Wed Mar 23, 2011 11:18 am

I'll see you all on the Hill. You may not recognize me without the wheelchair I had to be pushed in last year. I'll try to figure some distinguishing mark.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: And then I dreamt:

Postby prairiegirl » Wed Mar 23, 2011 2:31 pm

1eye wrote:I have been poor, living from hand to mouth, and on the street. It was only much later in my life, when I was successful, married, lost my father, and had two children of my own, that I became a slave.
I had thought that I was safe from that, because I was a middle-class white male with a college degree, and lived in the ‘Free World’. I had not known that slavery comes in many forms, and can strike down anyone. It all depends on luck.

Some pretty profound musings here, 1eye. Thanks for the thought-provoking post!
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Postby blossom » Wed Mar 23, 2011 7:24 pm

1eye, life can be a nightmare and many things taken away. but, noone can take our dreams away.

i enjoyed your post. your wit and creativity is much appreciated.
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Re: And then I dreamt:

Postby griff » Sat Mar 26, 2011 8:20 am

1eye wrote:And then I dreamt:

The result you all know only too well, especially if you are a Canadian with CCSVI. You have had the misfortune to arrive on the wrong side of history, in a world where neurologists rule, and science, evidence, and experience take a ride with you at the back of the bus. You are no more powerful than a leper in New Brunswick in the nineteenth century.

What can be done? Maybe nothing. Maybe people will continue to prescribe and to insist you pay them for the Tysabris and the Galenas, Rebifs, Avonex’s, etc. Maybe you will continue to suffer and die, like my dad’s student Paul, and like Bill Peart, and like 400 other Canadians every year, this year included.

I have a dream: that all people who have been diagnosed with various types of MS from all the Canadian provinces and all the Canadian territories, can get tested for CCSVI.

I have a dream: that all the Canadians who want the venoplasty procedure for CCSVI can get it, with the same assistance from the various health care insurance providers as if they had had a car accident.

Let liberation ring.

Hey 1eye, first I had similar thoughts about neurologists as you do and I put the blame on them for not letting us get the ccsvi operation. However, now, that I went through one treatment I feel that it is not only the fault of neurologists that they have this opposition to the operation.

First of all I had to experience that with over 2 years of experience with CCSVI we still do not get well documented sound results and what is even bigger problem that you can hardly get any thorough anwser from the IRs about their techniques used and the associated risks before the operation. As for the after-treatment and follow-ups, that just does not exist. So then, can we blame neurologists saying that ccsvi operations are done recklessly and only for financial motivation. How can we convince them if our IRs show no sigs of wanting any documentation of our condition? How many of us did get MRI before the operation and several months after the operation about his MS laesios? Did any of you get assessed for EDSS before the operation and after that in ceratain times? I know there are some places but it is not the typical. IRs say they are treating CCSVI and not MS, but then what is CCSVI? If you do not monitor symptoms how the hell you know that you treated something well?

So, I think there is a great idea, the CCSVI that should be followed up in the correct way and in the best interest of the patients and not for the financial gains for the clinics. If we do not know the effect and risk of something for sure how can we charge people for such an extra profit and why do they not care what is going with us after the operation? Do they really want to find out the association between ccsvi and MS? I talked to several IRs who have been interested in starting ccsvi operations but after visiting one CCSVI clinic and examining their reults they decided not to do so. They said that things have been very poorly recorded. Of course, neurologists are sceptical, but then let's convince them, but not this way!!!
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Postby Cece » Sat Mar 26, 2011 8:42 am

Welcome to the forum, griff! From what I can tell, there are doctors doing research and doctors simply doing procedures. Dr. Zamboni has said that we should seek treatment within studies or research, which includes any doctor doing registries. Dr. Hubbard comes to mind, as does American Access Care. Dr. Siskin is doing a bit of both, by having a group that is part of a study but also doing straight-up treatments for other patients. He has published on those patients, so that counts, actually. Dr. Arata's group is just doing the procedure afaik. There are many factors we should take into consideration before getting the treatment, one being if our results will add to the body of knowledge, but other factors are price, convenience, if our insurance is accepted, what anticoagulation and techniques the doctors use, experience, etc.

Any patient who wants their data to be collected should remember to send an email to Dr. Hubbard's group requesting the packet for the patient-centric registry! These forms can be brought to whatever doctor does your procedure.
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Postby MS_HOPE » Sat Mar 26, 2011 9:00 am

Cece wrote:Any patient who wants their data to be collected should remember to send an email to Dr. Hubbard's group requesting the packet for the patient-centric registry! These forms can be brought to whatever doctor does your procedure.


Good point, Cece. Hubbard Foundation may be reached at hubbardfoundation@gmail.com. Their website is www.hubbardfoundation.org, and they're also on Facebook.


I was given the Hubbard Patient-Centric packet at my CCSVI treatment appointment at Vascular Access Centers (Dr. McGuckin). I hope they're giving that to all their patients, and that everyone participates. I'm also recording my experience at www.ccsvi-tracking.com, which I encourage others to do, so we don't have to wait for the published studies to get a better sense of how CCSVI treatment is working for people.

Griff, I hear you, and agree. There are definitely IRs out there who are not interested in treating the patient, but only the vascular blockages they find. Without tracking results, how are they to learn and improve outcomes? Buyer beware.

On the other hand, not everyone can travel to one of the very few centers that are doing studies right now. Not an ideal world, but things are moving rapidly..
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