Monday, December 13, 2010

Christmas Past Still Sweet With Memories

Isaac with his guitar getting ready to go to Disneyland on "a Wish".
Pictures of Minnie and Minnie drawn by Isaac's sister who came on "the wish" as well.
It was an amazing trip.















Christmas Poem from Yesteryear (1968)

Catch the spirit of Christmas on anybody’s face
is it sad?
is it happy?
is it out of place?
for those who cry on Christmas Eve
they have no one to care
it’s ‘sposed to be a happy time
for them the tree is bare
so if you see someone who’s lost
take them to your heart
give them love and warmth and cheer
of Christmas give a part.

by me R-A H. (then 11 years old))
now R-A N (older than 11:)!!!!
Merry Christmas everyone
and a Peaceful New Year!!
Today, December 16, is Isaac's birthday.
He always wished for snow when he blew out the candles on his birthday cake.
It has been blue skies here and no snow at all..green grass and no sign of the white stuff in sight.
This morning he got his wish.
It started to snow and tonight it continues to fall.
Thank you, Isaac! Happy Birthday son, you got your wish.

Saturday, October 16, 2010

Thoughts

There is a lot of info coming out of the conference in Sweden that is met here and there with panic and anxiety.
That is the difficulty without back up medical knowledge most people can't extrapolate the info into anything that makes sense to them.
If they all take a deep breath and someone like Dr. Sclafani or Dr.Sandy MacDonald provided an analysis of the "news" it would be helpful to the MSers that I see having meltdowns.
We as a large group of people need to stay calm and focused otherwise we are in danger of sounding "histrionic" and therefore invalidated.
I get deeply outraged with the pandering of our lives.
I have never and will never "give over" authority of my life to unscrupulous "self-appointed" experts of an old paradigm of medicine or methods of research.
It is time to move on.
"The old boys/girls club" truly needs to give way to the young, brilliant minds now emerging.
There are a few of us "older mavericks" that think outside the box...but a lot of the stale types are here as well.
Corruption and compromise of ethical standards is unfortunately alive and well in our Canadian Medical System.
How very tragic.
Must be a very big cash "cow" and ego "pay off" propelling the oppression of a group of people not unlike countries that Canada criticizes for their roles in Human Rights violations.
We as Canadian's apparently will approve the purchase of stealth fighter jets to the tune of 16 billion dollars!
Yesterday was my 53rd BD and I am happy to report that I had a great day and I STILL HAVE A BIG MOUTH AND AN ATTITUDE TO MATCH!!
I am still here but many of our "community" are not.
by R-A N.  October 16, 2010

























Sunday, October 10, 2010

THE COWBOY AND HIS LADY

http://www.youtube.com/watch?v=QYU3995mieo
"Have I Told You Lately That I Love You"
(Mom and Dad's favourite by Jim Reeves)

The Cowboy and His Lady
The cowboy on his appaloosa rode
to see his lady fair
with eyes of blue and cheeks of rose
and shining golden hair
He doffed his hat and swept it low
and said with certain pride
"I'd be an honoured cowboy Ma'am
if you'd be my precious bride".
The lady smiled that sweet, sweet, smile
and looked him in the eyes
then said to calm his trembling heart
"We'll marry at sunrise".
So now together in the dawn
they ride toward the sun
the cowboy and his lady fair
have joined their hearts as one.
By Susy-Q
John and Laura
November 21, 1987
In honour of your memories, Mom and Dad
and happy BD Dad,
 on what would have been your 93rd birthday
October 10, 1917--March 25, 2008
extra special 10/10/10



 
 
 
 
 
 
 
 
 
 
 
 
 
 
"The Cowboy and His Lady"

Monday, October 4, 2010

SANDHILLS

      "Sandhill Cranes"       "Reifel Bird Sanctuary"    Ladner, BC   















(photo courtesy of me)

Sandhill


In the grey clouded dawn
I stroked my way to your side, dipping, swirling and calling your name
images of your crumpled body cradled in the rust stained grasses
and the flocks responding to the clarion trumpet
calling us to return to the warmth of Mexico
they left without us and I waited by your side until harbingers alit beside your silent magnificence
the last one here, and I waited by your side another day
another day
another day
and now I fly alone with your memories under wing
and call for you to come with me
another day
another day
another day




R. Neil   
October 4th 2010







Saturday, October 2, 2010

IRON LADY

Iron Lady
Oh, am I made of metal?
Hear me speak
Or do I have no tears?
Hear me creak
For I am like the “Tin Man”
With no oil
and I labour long and hard
and so I toil
from dawn to weary dawn
with chains of grey around my neck
onward, weary onward, do I trek
I cannot die to release my pain
I am imprisoned for another’s gain
For my soul is ransomed
To fill the captor’s coffer
And no one hears my voice
And my pathetic offer
“I would do anything to have a choice!”
“Just listen to us…we want a say”
“So we can live another day”
“Oh..please, oh please, release us from the yoke”
“We have laboured long enough"
"It is not a joke!"
”Once upon a time I ran in meadows lush and deep"
.........
Today I cannot follow you, the grass has grown too deep
Instead I twist and turn and wonder where to go
As the road is long and lonely with nothing left to show
I feel the iron settling and pooling in my brain
And soon I won’t hear anything not even the glorious rain
       
By R.Neil.......
Photo courtesy of Danial Neil.......taken at Crescent Beach
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Metal
met•al n.
1. Abbr. M
Any of a category of electropositive elements that usually have a shiny surface, are generally good conductors of heat and electricity, and can be melted or fused, hammered into thin sheets, or drawn into wires. Typical metals form salts with nonmetals, basic oxides with oxygen, and alloys with one another.
2. An alloy of two or more metallic elements.
3. An object made of metal.
4. Basic character; mettle.
5. Broken stones used for road surfaces or railroad beds.
6. Molten glass, especially when used in glassmaking.
7. Molten cast iron.
8. Printing Type made of metal.
9. Music Heavy metal.
tr.v. met•aled also met•alled, met•al•ing also met•al•ling, met•als also met•als
To cover or surface (a roadbed, for example) with broken stones.
________________________________________
Iron:
One of the most abundant metals on Earth, is essential to most life forms and to normal human physiology. Iron is an integral part of many proteins and enzymes that maintain good health. In humans, iron is an essential component of proteins involved in oxygen transport. It is also essential for the regulation of cell growth and differentiation. A deficiency of iron limits oxygen delivery to cells, resulting in fatigue, poor work performance, and decreased immunity.
On the other hand, excess amounts of iron can result in toxicity and even death.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
mettle
n
1. courage; spirit
2. inherent character
on one's mettle roused to putting forth one's best efforts
[originally variant spelling of METAL]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 medal

a small flat piece of metal bearing an inscription or image, given as an award or commemoration of some outstanding action, event, etc.
vb -als, -alling, -alled US, -als -aling, -aled
(tr) to honour with a medal
[from French médaille, probably from Italian medaglia, ultimately from Latin metallum METAL]
Medallic adj

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Metal (Iron) Suit of Armour
Mail, sometimes called by the neologism"chainmail" made of interlocking iron rings, which may be riveted or welded shut is believed to have been invented by the Gallic people in Eastern Europe about 500 BC


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Meddle
 1. (usually foll by with) to interfere officiously or annoyingly
 2. (usually foll by in) to involve oneself unwarrantedly
 To meddle in somone’s private affairs
 [from Old French medler, ultimately from Latin miscēre to mix]
 meddler n
 meddling adj
 meddlingly adv
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
“When I am grown to man's estate
I shall be very proud and great.
And tell the other girls and boys
Not to meddle with my toys.”
"Robert Louis Stevenson"
~~~~~~~~~~~~~~~~~~~~~~~
IRONY
i•ro•ny
1/ [ahy-ruh-nee, ahy-er-]
–noun, plural -nies.
1. the use of words to convey a meaning that is the opposite of its literal meaning: the irony of her reply, “How nice!” when I said I had to work all weekend.
2. a. Literature in leterature a technique of indicating, as through character or plot development, an intention or attitude opposite to that which is actually or ostensibly stated.
    b. (esp. in contemporary writing) a manner of organizing a work so as to give full expression to contradictory or complementary impulses, attitudes, etc., esp. as a means of indicating detachment from a subject, theme, or emotion.
3. Socratic irony.
4. dramatic irony.
5. an outcome of events contrary to what was, or might have been, expected.
6. the incongruity of this.
7. an objectively sardonic style of speech or writing.
8. an objectively or humorously sardonic utterance, disposition, quality
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
How Common is the "MS Hug?"
This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.
What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abnormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.
What Does It Feel Like?
Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be : As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
Focused in one small area (usually on one side or in the back) or go all the way around the torso
Worse when fatigued or stressed
Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure
How Severe Can It Get?
Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack…………………………
Or it can feel like this picture
Sorry for those that are sensitive but this is what it feels like to me
(Kind of like molten lava circulating in between my ribs)
Bolts of burning pain and fire under my skin and in between my ribs

Also like this
 A neo-medieval torture instrument
An iron maiden (German: Eiserne Jungfrau) is a torture device, consisting of an iron cabinet, with a hinged front, sufficiently tall to enclose a human being. It usually has a small closeable opening so that the torturer can interrogate the victim and torture or kill a person by piercing the body with sharp objects (such as knives, spikes or nails), while he or she is forced to remain standing.
  Persons accused of heresy, or of blaspheming God or the Saints, and obstinately refusing to confess their guilt, were conducted into this cellar, at the furthest end of which, numerous lamps placed around a recess, threw a variegated illumination of the gilded halo, and on the figure with a banner in her right hand. At a little altar standing opposite to her, and hung with black, the prisoner received the sacrament, and two ecclesiastics earnestly besought him, in the presence of the Mother of God, to make a confession. "See," they said, "how lovingly the blessed Virgin opens her arms to thee! On her bosom thy hardened heart will be melted; there thou wilt confess."
All at once the figure began to extend its arms; the prisoner was led to her embrace; she drew him nearer and nearer, pressed him almost imperceptibly closer and closer, until the spikes and knives just pierced his chest.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The MS “HUG” feels like an “iron maiden” to some of us.
We think that the release of our blood flow
would take the pain away!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
VENOPLASTY FOR ALL!!!!!!!!!
“DRAIN THE BRAIN”
THE CCSVI PROCEDURE IS A HUMAN RIGHT!!!!!!!!!!!!!

MOUNT IRON in NEW ZEALAND

In the geology world, Mount Iron is a 'roche moutonnée' - an elongated knob of bedrock that has been carved and smoothed by an overriding glacier. The mountain is oriented in the direction of the glacier's flow. The upstream stoss side is gently sloping and smooth; the downstream or lee side is steep and rough



!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
“BIG IRON”
Marty Robbins (excerpt)
To the town of Agua Fria rode a stranger one fine day
Hardly spoke to folks around him didn't have too much to say
No one dared to ask his business no one dared to make a slip
for the stranger there among them had a big iron on his hip
Big iron on his hip
It was early in the morning when he rode into the town
He came riding from the south side slowly lookin' all around
He's an outlaw loose and running came the whisper from each lip
And he's here to do some business with the big iron on his hip
big iron on his hip
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
WHAT IS PIG IRON?
The vast majority of PIG IRON is produced and consumed within integrated steel mill complexes. In this context the term “pig iron” is something of a misnomer: within integrated steel mills, blast furnace iron - hot metal - is transferred directly to the steel plant in liquid form. The term “pig iron” arose from the old method of casting blast furnace iron into moulds arranged in sand beds such that they could be fed from a common runner. The group of moulds resembled a litter of sucking pigs, the ingots being called “pigs” and the runner the “sow.”
MERCHANT PIG IRON is cold iron, cast into ingots and sold as ferrous feedstock for the steel and metal casting industries. It falls into the category of ferrous metallics, of which iron and steel scrap comprises by far the largest volume, others being direct reduced iron [DRI], hot briquetted iron [HBI] and various other “alternative iron” materials. Merchant pig iron is, by definition, produced by dedicated merchant plants all of whose production is sold to external customers. Some integrated steel mills produce blast furnace iron that is surplus to their internal requirements and this is also cast into ingots and sold as merchant pig iron.
Merchant pig iron comprises three main types: BASIC PIG IRON, used mainly in electric arc steelmaking, HAEMATITE PIG IRON [also known as FOUNDRY PIG IRON], used in mainly in the manufacture of grey iron castings in cupola furnaces, and NODULAR PIG IRON, used in the manufacture of ductile [also known as nodular or spheroidal graphite - SG] iron castings. Pig iron contains at least 92% Fe.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Flatirons
The Flatirons are rock formations near Boulder, Colorado. There are five large, numbered Flatirons ranging from north to south (First through Fifth, respectively) along the east slope of Green Mountain, and the term "The Flatirons" sometimes refers to these five alone. Numerous additional named Flatirons are on the southern part of Green Mountain, Bear Peak, and among the surrounding foothills.
The Flatirons were named by pioneer women after the flat, metal irons used to press their clothes









~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
LIST OF THINGS
   MADE OF IRON
   like a "Cast Iron Pan"






and a "Dutch Oven"




and iron furniture

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
and devices such as "the iron lung" that people were put in originally to treat coal gas poisoning in the 1800's and then it was revised for poliomyelitis from the 1930's and on through the polio epidemic ....to help people breathe, they were routinely put inside this for extended periods of time.
 Their diaphragms were not inflating to fill the lungs with oxygen because of weak and failing muscles therein.
Iron lungs created "negative pressure" and the lungs were assisted to breathe.

I AM LOST~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
and I am getting very,very angry...!!!!!!!!!!!!!!
Want a muffin?????????

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
all right...I will leave this page with these final thoughts
IRON IS VERY USEFUL; BUT NOT AS POOLS, COAGULATING AND RESTRICTING BLOOD FLOW, COLLECTING IN THE BRAIN OR ANY OTHER ORGAN WHERE IT DOESN"T BELONG...THE BRAIN WILL INFLAME!!!! AND IT WILL SEE THE IRON DEPOSITS AS FORIEGN OBJECTS......SO SCARS (PLAQUES) WILL FORM as a response of our bodies to a perceived invader AND WE GET STIFF AND TRAPPED IN OUR HELMETS OF IRON (AND A VERITABLE "SUIT OF ARMOUR")
and it feels like we are from another planet************
LIKE THE MARTIAN WHO IS OFFERING MUFFINS AND WANTS TO DESTROY OUR
PLANET!!!!!!!
BECAUSE WHEN YOU ARE UNDER "ATTACK"....WHAT ELSE ARE YOU GOING TO DO?

SIT DOWN WITH THE "INVADERS" AND OFFER THEM TEA AND MUFFINS!!!!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
how about amazing structures made of iron  like "The Eiffel Tower"
do I have an "Eiffel" in my brain??


 

















THE TIN MAN SAYS "WE NEED UNRESTRICTED BLOOD FLOW "
(and EFA's and Primrose Oil and salmon oil and EPA's)





STEEL RAILS

 "Railway in North Delta/Burns Bog"
photo courtesy of Danial Neil

THE END................

Tuesday, September 28, 2010

NEW YORK CONFERENCE




http://www.youtube.com/watch?v=esaTBMV6EyI




photos courtesy of Ruth-Ann Neil
White Lake and surrounding area
of the area above Oliver BC

Thursday, September 23, 2010

A GREAT MAN and a RENAISSANCE COWBOY


http://www.youtube.com/watch?v=7-UP26qH9Jc

Please click and listen
~~~~~~~~~~~~~~~~~
"God Must be a Cowboy At Heart"
             Dan Seals
~~~~~~~~~~~~~~~~~~~~~~~
A campfire some coffee from a tin cup in my hand
Sure warms the fingers when it's cold
A-playing an old guitar a friend I understand
Sure smoothes the wrinkles in my soul
A-sleeping in the moonlight a blanket for the bed
Leaves a peaceful feeling in my mind
Waking up in the morning with an eagle overhead
Makes me want to fly away before my time
And I think God must be a cowboy at heart
He made wide-open spaces from the start
He made grass and trees and mountains and a horse to be a friend
And trails to lead old cowboys home again

Night life and big cities is alright for awhile
Sure makes you feel good when you're there
But the country's so pretty it goes on and on for miles
Takes away my troubles and my cares
And I think God must be a cowboy at heart
He made wide-open spaces from the start
He made grass and trees and mountains and a horse to be a friend
And trails to lead old cowboys home again

And trails to lead old cowboys home again

October 10th, 1917 to March 25th, 2008
in his 91st year
Dad will be remembered for his gentleness, kindness, unconditional love, integrity and amazing strength of heart and soul.
Cowboy, soldier, outdoorsman, businessman, his life led him through pathways that many of us only dream of.
He found joy and adventure in every step he took. He had child-like curiosity and was always eager to embrace something "new". Dad was rich in family and friends and happily collected new "people".
He "retired" and wondered how he ever had time to work, as he set off to create more "jobs". He lived his life "on purpose" every day.
We have very large footprints pointing the way for us to follow, we feel your touch, your breath, see your smile, hear your laugh, and we know that we are truly loved.
Thank you Dad for your life and ours.
Ride on.

Monday, September 20, 2010

CBC's "The Current" Sad Reporting on MS "Liberation Procedure"

To CBC's "The Current".
In response to your show on September 20th 2010

Good morning


I must say that I was shocked and disappointed in the conclusion to the program presented on "liberation therapy" this morning.
The first components to the story of "opposed" medical breakthroughs" was stellar however the conclusion after listening to the "snake venom","bee sting" analogy was less than stellar.
I always look forward to "The Current" as a part of my morning but this morning when I heard the last sentence in the program I crossed the room and shut off my favourite program/station.
The medical system's territorial reluctance to expand their very lucrative "cash cow" to hands on treatment of a vascular component to the symptomology of MS are just as tragic and disgusting as the breakthroughs that were cited and were initially opposed.Your interview of Doctor Jock Murray( neurologist at Dalhousie University author of textbooks on MS as well as 200 "papers" published on the same) was featuring his "carefully measured voice" talking about "fatigue" in MS as a predominant feature of this disease.
I agree..but if you have compromised circulation and stenosed veins that are improperly formed or missing, you will have the symptoms of hypoxia (oxygen deprivation) and although the human body will compensate by building collateral blood flow..eventually that will be compromised at some point.
Fatigue of the CNS and the human body will result.
I live with "MS". I am tired every day..my hands and feet turn purple, red and blue.
I cannot regulate my body temperature very well and I am very conscious of everything I do in terms of energy balance and expenditure.
All of the DMD's currently offered by neurologists (not all)and promoted by the MS Societies and pretty aggressive marketing by pharmaceutical companies..are very tragic since the latest released statement shows that CRAB's have little or no efficacy in treatment for MS with a cascade of side effects and a huge monetary cost to patients and the health care system and governments. At least $20,000 dollars a year alone and then add in the other costs of another drug to counteract the side effects of the first and the "snowball" continues.
Venoplasty is a simple technique used everyday in the entire world for a variety of reasons from varicose veins to treatment of failing and compromised veins in kidney dialysis patients. The cost of venoplasty is $1500.00 per procedure..and it can be repeated if need be.
Our Canadian and world wide Vascular Surgeons and Interventional Radiologists are ready to provide this treatment as an option to relieve debilitating "MS" symptoms
Look at the "conflicts of interest" in CIHR and the money exchange happening in the arenas "controlled" by neurologists and heads of societies that purport to represent us when they have a very clear vested interest to maintain us as "helpless" ineffectual people that aren't able understand what is good for us.
Do your research and look at the research that is being done right now
http://www.direct-ms.org/
Apparently we are an ignorant populace, the people with MS in Canada all 50,000 to 77,000 of us!
Please, Anna Maria, do more research for us!!!
You have shown me over and over your ability to unearth oppressed information and expose the oppressors
It is not "sham science"....if it were a new "drug" it would have big press!!!!
Here is a statement by the Society of Interventional Radiologists
http://ciraweb.org/sites/default/files/2010-08)ms_position_statement.pdf
I believe that there is a very large body of egos entrenched in our medical bodies of so called "experts" that are reluctant to "move over" or share the stage.
I feel trapped by the current state of affairs in Canada when a simple procedure is being offered overseas with good results
"but not in Canada" and I cannot have venoplasty in Canada because I have MS.
Something very wrong with that picture!
Discrimination and "authorized" bullying.
I want the right to choose and be helped in Canada!!!
Talk to Dr. Sandy MacDonald in Barrie, Ontario..listen to his presentation in front of the Parliamentary SubCommittee on Neurogical Disease
http://for-greet.squarespace.com/journal/2010/6/1/the-ccsvi-battle-continues-with-emotional-pleas-to-canadian.html
Thank you for listening and all the best to you and yours.

Friday, September 17, 2010

Beauty and Strength

photo by Ruth-Ann Neil

"Tenderness and kindness are not signs of weakness and despair
but manifestations of strength and resolution."
-Kahlil Gibran

Thursday, September 16, 2010

WAITING FOR CHANGES IN THE MEDICAL SYSTEM

for some of us the wait is too long
This picture is a graphic statement that illustrates the stark reality that faces us when we are denied basic human rights and a simple medical procedure.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


"We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one's predicament into a human achievement. When we are no longer able to change a situation--just think of an incurable disease such as inoperable cancer--we are challenged to change ourselves."

Victor Frankl.....from Man's Search for Meaning
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


"We will find a way...and if we are continually denied, we will become even louder! We will continue to laugh and love life and our families for as long as we can and we will not be invalidated or dismissed by people who are practising oppression!!
Support change and the new tomorrow that waits for all of humanity.
We who live with MS are worthy of life on our own terms"!!!


Ruth-Ann Neil    
September 16, 2010

Wednesday, September 8, 2010

GENTLE CCSVI REBELS..by Mary Berukoff

How the Gentle CCSVI Rebels Will Win the MS Liberation War...7 Reasons Why


Mary Berukoff

How the Gentle CCSVI Rebels Will Win the MS Liberation War...7 reasons why

Truth must be experienced rather than told because language fails to convey belief and is only the barest shadow of reality...Plato
A Tale of Woe and Hope about a Profiteer’s Conspiracy, Personal Health Freedom and a New Medical Paradigm

Who are these gentle CCSVI rebels? They are nurses, engineers, real estate developers, psychiatrists, teachers, farmers, accountants, business owners, lawyers, physiotherapists, and insurance brokers. They are mothers, fathers, wives, husbands, sons, daughters, sisters, brothers, and friends. They have said yes to health freedom against forces that would control them. They want to change to a more compassionate world that listens and cares.
They share a common bond…they are prisoners of a devastating disease called Multiple Sclerosis. It may relapse and remit or slowly progressively get worse to total disability. Who will be next? If you are young or female you may have greater chance to be next. If you are among the unfortunate who are struck, it will feel like a civil war has broken out inside your body. For ensuing years, over a lifetime you will develop problems with walking, talking, seeing, thinking, pain, urinary control, fatigue, spasticity.
You may lose your wife or husband in a divorce (very common), family, job, ability to write or drive, the privacy of your home. You may lose your self-esteem, dignity and independence. When you are finally bedridden, unable to swallow, the ravages will be complete. And there is no cure, and, until recent events, very little hope.
Therein begins the struggle for humanitarian and equal health rights against a conspiracy that keeps sick people sick as long as possible for profits.
The MS affliction was first recognized 150 years ago but what caused it has been debated ever since. Up until the 1930s, the prevailing thought was that MS was initiated by venous congestion (Dr. Putnam). But a new theory using animal models (EAE) was put on the table when monkeys were injected with brain extracts from rabbits and developed scarring possibly caused by immune cells interaction. It was this theory that took hold that MS was an auto immune problem. It proposed that the body’s own immune cells caused the inflammation which damaged the fatty myelin sheaths around the neuronal axons of the brain and spinal cord. This demyelination lead to scarring and lesions which caused a broad spectrum of mental and physical manifestations.
Interestingly enough, over 135 years, some doctors continued to note again that certain vascular abnormalities caused plaque formation similar to MS, but these early observations were limited by lack of 3-D imaging tools such as the ultrasound which are now readily available.
The autoimmune brain damage theory fell into the realm of NEUROLOGY...the study of disorders of the brain, spinal cord and nervous system and neurologists claimed it as their specialty. In fact, as this story unfolded, an ownership held with such an iron fist that no other doctors could take it away without a battle. Study by study, a research Fortress was built to actualize the hypothesis that the body’s own immune cells attacked the neurons, creating cellular deficits that needed to be modulated. New drug therapies were created for progressive subtypes to disarm the natural-turned-rogue immune system and protect the brain from these marauding autoimmune cells. But for most sufferers, decades of research could not stop onset, progression or prognosis of this catastrophic disease. However, new drugs poured out to treat new prototype genetic markers and ongoing disabilities and, like one stone at a time, added reinforcement to this Fortress although all drugs had the disclaimer that the precise way they acted on MS was unknown.
There was inevitable bridge building...in a physical sense to supply these drugs and in a symbiotic economic sense. The peak performance would result in ten billion dollars annually spent by patients or covered by health plans to drug manufacturers based on neurologists’ prescriptions who also received a percentage of sales.
It was a natural collusion with a host of pharmaceutical companies keen to set up their labyrinth of laboratories to explore numerous drug therapies. Various breakthrough remediating agents appeared in the marketplace: Avonex, Betaseron, Rebif, Copaxone. Campath, Zenapax, rituximab, dirucotide, cladribine, dimethyl fumarate, estriol, statins, minocycline, teriflunomide, and many more.
Because of the use of chemical agents large randomized clinical trials were initiated to enroll, allocate, follow-up and do a “blinded or non-biased” analysis of data. The larger the base, the easier it was to find the required 9% short term positive feedback. Stock market prices rose and fell on these trials and sales of drugs. Their clarion call rang out “drug side effects are better than disease risks.”
Throughout the years, many patients looked toward a charitable organization originally set up to help their disability needs and raise funds. But, as business grew, tall walls appeared behind which sat clinical neurologists acting as scientific advisors as well as various hand-picked board and staff members with rudimentary medical understanding, if any. In fact, neurologists had an obvious vested financial interest to maintain the status view of MS as autoimmune and several served as paid advisors for Big Pharma…Serono, Berlex/Schering, Biogen, Biotec and Teva.
This “charitable” organization fed their brand of information to the public, determined what research to do, and what overall policies to lobby the government. In fact, 50 % of public funding went into administrators’ pockets. The sharpest blow was when their executives with no medical education, degree, or experience could take a responsible voice in making the most important decisions about the quality of life and death for MS patients.
In fact, this one charity had paid out nearly NINE million dollars for one neurologist’s research on how to turn the body’s own stem cells to produce myelin using chemotherapy to obliterate the old system and re-planting a new immune system from spinal cord stem cells. The results of this experiment seem to be buried in archives now.
This non-medical charity built other natural collusions with pharmaceutical networks who also contributed funding and research grants. They even managed to build a bridge to Institutes of Health Research with an open advisory road to top Federal Health Politicians. Occasionally some outrage would spark in these hallowed halls such as when a director of a habitually bad drug company was appointed to the Governing Council for Health Research. This Big Bad Pharma who had been proven to “persistently engage in illegal marketing practices, bribing physicians and suppressing adverse trial results” and had been “fined $3 billion in criminal convictions” now had a representative on the privy council to the top Federal Minister!
How else could Profiteer’s Conspiracy be defined within this Fortress? This was a collaborative network to create synergy and tools for better and stronger drugs where BIG PHARMA gave money to charitable societies and research institutes appointed by duly elected governments who now could influence policy makers.
It was the only Behemoth Conglomerate in town and it grew more powerful sustaining itself on the broken bodies and lives of MS citizens. They were the gatekeepers to the SICK ONES who remained confined to these experimental drugs, paid out exorbitant new drug bills, and burdened the country’s health care system.
But what happened next defies life and death. A seismic paradigm shift appeared and shook this Fortress to its very foundation.
What was evident was that this reigning monopoly and drug funnel myopia were now to be judged by international medical peers in the name of medical advancement and humanitarian rights.
What was not self-evident were the layers of bureaucracy, the buck-passing, and the degree of infiltration this Conglomerate had made into the corridors of government and mass media itself.
It was late last year when a different kind of news blew over the land. On the horizon, appeared a team, led by an Italian vascular surgeon and researcher called Dr. Paolo Zamboni, with an opposing theory. His long term research suggested that MS involved a vascular circulatory problem referred to as chronic cerebrospinal venous insufficiency or CCSVI. This new theory and evidence showed that the majority of MS patients had restricted or blocked veins and by opening them with a common balloon angioplasty, that the majority of patients experienced various degrees of improvement.
The possibility that a biological mechanism such as abnormal flow of blood through the Central Nervous System could possibly damage nerve tissue and lead to scarred lesions and immune responses rather than the body’s own destructive auto-immunity caused a tidal wave in the MS community. What if, Multiple Sclerosis was a vascular or plumbing problem better treated interventionally rather than with life-long immunomodulatory drugs? It was a Liberation of Hope based on Liberation of Proper Blood Flow.
It was undoubtedly one of the biggest breakthroughs in MS history in the past decades, if not ever. On one hand, there was major international support and continued research to see if vascular blockages in the veins could be associated with an increased risk of disability progression in multiple sclerosis. But, on the other hand, a small handful of countries, who particularly touted fair and just societies, and their governments, academia, hospital boards and charities locked the doors to any innovative research outside of their buttresses. Ethically and morally, long suffering MS citizens had no explanation. Financially, the shadow of the Fortress was upon them.
The good news was, worldwide, there was growing interest by insightful researchers to further investigate this plausible biological pathway to rationalize this terrible disease. CCSVI was readily recognized as a syndrome in which blood flow from the brain was compromised and that it is a disease state that by itself required treatment. Different research groups put together imaging studies using magnetic resonance venography to show more than 95% of MS patients also have narrowed or blocked veins. This became the accepted gold standard for the determination of CCSVI.
Around the globe, clinics were setup to treat these restricted veins with minimal invasive balloon angioplasty. MS sufferers now were reporting better benefits unmatched by any known MS medication.
The Society of Interventional Radiology (SIR) announced its support for clinical research to determine the safety and effectiveness of interventional treatments. These are the same doctors who do angioplasty on blocked arteries for 2 million people per year world wide.
Teams of researchers started teaching doctors and technicians how to test for vein abnormalities using ultrasound. Fully fledged protocols by eminent physicians for both testing and treatment were required. World renowned research scientists offered symposiums to discuss the research and relationship between CCSVI and MS.
Hundreds of MS patients rallied at legislatures across the country. Thousands of letters were written to health ministers and politicians…some of whom took up the call to welcome a new treatment protocol for their citizens.
But in the Fortress, there was fury and vitriol…never before witnessed in the medical community.
Mainstream neurologists criticized their peers, with fears and outright false statements, crying out this is a hoax, a fraud, an overwhelming lack of evidence and you can’t balloon veins...they will collapse. It was clear that neurologists simply did not have the training to deal with the meaning of bilateral jugular stenosis or venoplasty.
Two research papers suddenly appeared in the Annals of Neurology denouncing the connection. (Doepp et al study). They were widely publicized and also flawed in that they only looked at a very small part of the jugular, and scanned in only one plane rather than multiple planes. The rebuttals by renowned scientists were not unpublished in the same papers. Such omission of other important data and literature was most troubling.
Interventional radiologists with 35 years experience were put under review by Internal Review Boards to see if patients could be harmed with vein angioplasties.
Vascular surgeons who opened up restricted MS veins were censured and their clinics closed down but they could still open up non-MS vein restrictions.
Some pharmaceutical companies tried to hasten their latest trials to fast track new drugs. They could stand to lose untold billions in their sales of drugs designed to suppress the immune system. There were no profits to be made with balloon angioplasty.
One “charitable” lobbyist proudly petitioned his government to hand over 10 million dollars for MS research. Part of that was received for 7 CCSVI labeled studies awarded to neurologists to find IF blocked veins really did exist. No treatments were allowed. Side by side, stood an experienced vascular surgeon who also said that the CCSVI blood flow problems were real, but he was not granted any research funding.
Media and newspapers called the new procedure experimental, controversial, risky, blind alleys, high-tech faith healing…even a unicorn fantasy. They spun out a consistent web about one previous migrating stent and one death which the family attributed to drugs rather than surgery. But angioplasty was not experimental and was accepted as medical treatment without the MS equation. Positive results were termed “placebo” and tossed about like leaves in an autumn windstorm. Most had not walked this dark downhill MS tunnel of devastated lives and dreams.
And so it came to be that a camp of CCSVI rebels started to appear. First, with curiosity, people did basic MRI investigations and, indeed, discovered restricted veins and significant blood flow delays that seemed to validate the new theory. Second, they found themselves trapped in a bureaucratic maze. Family doctors could not support their referral requests to open their constricted veins because only neurologists could do that, but wouldn’t. They could not understand why their neurologists, trusted for years, would not have welcomed a new, safe, low cost and potentially effective option for MS treatment given the very low effectiveness of the current drugs.

They became the medical untouchables branded with both MS and CCSVI. They were prisoners of their own disintegrating disease and prisoners in a conspiracy that allowed no endovascular intervention that other citizens could readily receive. There were no other options. Without treatment, the total disability clock kept ticking. There was no hope with lifelong drugs.

Bravely, a few dared to escape the Fortress, to travel at great personal expense to foreign clinics to open their diagnosed venous blockages and report their improvements.
It started with one, two, three people...then hundreds grew to thousands. They documented their liberation journeys in reports and videos…impressive anecdotal evidence that CCSVI beat any drug statistics they had ever seen.
Their clarion call was, “Proper blood matters and we deserve to be treated like everyone else.”
And still there was no compassion from the Fortress. But shortly, it faced three huge frontal attacks.
First, their Main Weapon of Attack was self serving, double-speak CLINICAL TRIALS. This was the methodology by which the Fortress had thrived in the past. Only 10 more years of research could usher in enough scientific proof to validate treatment. People must be submitted to controlled, double-blind randomized trials that may work for pharmaceutical agents but do not work as well for individual structural or biological deficits. Find 50% of MS people and a group of non-MS people with similar profiles and comparatively image their veins. No trials...no evidence...no evidence...no funding...no funding...no trials.
Second, the MENTALITY where neurologists thought they owned the disease was fundamentally wrong…as a patient you were not allowed any second opinions and no choices. All MS patients were banned from interventional procedures until their research proved its efficacy. They had done everything possible to exclude any new opinions on committees or studies...even with blatant pharmaceutical conflicts of interest. They now had to answer whether the physical health of MS patients was more important than their financial health. This became a Medical Act and human rights issue and the basis of legal civil actions.
Third, the INTERNET and the unprecedented power of SOCIAL MEDIA were also underestimated. CCSVI sites opened up a channel of real empowerment that helped to democratize knowledge, foster openness, break down barriers, and connect people. Daily, at the grassroots level, people questioned and re-evaluated theories and personal experiences. Forums and blogs gathered a data base of research and such a sheer number of positive testimonials following this procedure. Patient advocacy was also rewriting medical history.
Finally, now that the characters, plot and themes have been disclosed, the seven reasons why CCSVI Rebels will win this MS Liberation War will be better understood.
Reason One. This struggle is based on a just, reasonable society that excludes greed, ego, and profits.

We want a reasonable society outside the shadow of the Fortress and fear of backlash where one professional doctor, a neurologist, should be able to say to another professional doctor, a vascular specialist or to a MS patient,
“I have my theory...my 60 year old curriculum. You may follow it, if you want to and take the FDA approved drugs. But I will also accept the fact that I do not know everything about this perplexing disease. I will refer you to get a second opinion, if you wish.”
We want a primary care system where interventional radiologists will work with neurologists and medical issues will be best decide by qualified doctors from all disciplines not bandied about by lobbyists or politicians.
Reason Two. This struggle will continue in the name of scientific studies where treatment is not exclusive from CCSVI research. Perhaps clinical medical research has become something much different from real scientific research, motivated more by prestigious universities and corporate finances with double standards...just look at the advertisements and side effects. The people pay for it with insurance premiums, drug prices, and taxes. CCSVI, or faulty veins, is a condition, not a treatment. There are abundant data now that demonstrate that a significantly higher % of persons with MS have CCSVI as compared with the general population. More rigorous, peer reviewed studies need to progress with angioplasties on neck veins, performed elsewhere in the body as a standard of practice – both with and without stents – for more than a decade. Vascular specialists who understand vein abnormalities and blood flow must be allowed to do research beyond what neurologists believe that CCSVI is not a causal MS factor. But, what if, the possibility exists? Preserve us from this maddening hypocrisy that the keepers of the Fortress supplicate their serious concern for patients’ risk-free safety with their own focused clinical trials and approved drugs. At this time, self assessment and personal anecdotes are the only validation factors we have until the Fortress opens its heavy doors and allows proactive CCSVI researchers and doctors to do their work.
Reason Three: This struggle will continue in the name of ethics and the Hippocratic Oath…physician, do no harm. It has been postulated for decades and overwhelming current evidence shows that it is more reasonable to assume that CCSVI precedes autoimmunity. Therefore, a person who is newly diagnosed with MS, cannot be denied access to diagnostic tools by professionals and immediately get all the necessary veins fixed and tracked as a social and moral right. Biological mechanisms such as narrowed veins or arteries need to be treated with mechanical interventions before any arsenal of life-long drugs only to be used as a secondary precedence.
Reason Four: This struggle will continue on the world wide internet. Passionate cries will be shared by individuals who call out to the dungeon keepers: “How can so few hold back the health and well being of so many. I just want to cry when I think that this is my life and my body and they want to drug me and radiate me with chemo drugs all in the name of science. I AM NOT A LAB RAT!!!!!!”
“The mark of MS makes me feel like a concentration camp victim discriminated against in my own country.”
“When researching drugs, the real nature of double-blind study needs to have both sick people and non-sick people to act as controls for evaluation. So does this mean that the best way to evaluate the MS-VEIN connection is to take Non-MS people and partially clamp their veins as controls and see if MS symptoms develop over 10 or more years. Any volunteers?”
A letter addressed to Canada on the death of a young father and husband who died from MS complications waiting for an angioplasty.
Patients have suffered through nearly 60 years of animal based research (EAE) without finding better answers. Perhaps we need to find a new model?
Reason Five: This struggle will continue to enter political arena.
Voting taxpayers will “take to tax” their politicians in charge of health budgets that divert nearly 50% of annual expenditures when alternative treatments that cost $1500 one time can possibly replace disease-modifying drug costs of 20,000 to 30,000 dollars a year paid by tax payers. Imagine the strangle hold of this Fortress when governments, ruled by Health Authorities, actually abide by these astronomical costs, and rising. Plus add the cost of social programs, housing and homecare, much of which could be eliminated with improved symptoms from better blood flow.
Reason Six: This struggle will persevere through the context of change. We acknowledge that Change is a process comprised of “three stages of development”: a thesis, giving rise to its reaction; an antithesis, which contradicts or negates the thesis; and the tension between the two finally being resolved by means of a synthesis.” There have never been absolute medical algorithms...just relative hypothesis of what may work better. If the neurologists feel besieged now, how will they feel when vascular anomalies become necessary priorities for drug free treatment for MS? It is understandable that they may not want to go back on years of training and prescribed therapies but they must restructure their Fortress in order to integrate this new paradigm and work with multi-disciplines and growing world wide objective testing before and after treatment with adequate follow-up…the true nature of scientific advancement.
Reason Seven: This struggle will continue because people have a new perception of reality. Disease is not caused because the body lacks certain drugs and only drug replacement can restore the body’s homeostasis. After decades of drug proliferation, their efficacy is now debatable and every leading medical institution has noted, liver damage, once rare, is now the leading cause for withdrawing a drug. Liver testing is a booming industry. Imagine a life-long sentence to MS drug overload. A certain new MS oral drug has already caused 12 deaths and 63 cases of brain infection. The better focus is better understanding of individual biology or physiology with imaging and basic mechanical intervention when possible. What if, as early evidence indicates, that Multiple Sclerosis is the tip of only one iceberg? What if, there is a connection between venous restrictions and other neural problems such as Alzheimer’s? So, here’s the undisclosed reaction. Yes, is this why Big Pharma’s legions are fighting tooth and nail to protect the Fortress, their shareholders, and their million dollar lifestyles on Big Incurable Sickness?
We are a rapidly growing band of gentle CCSVI rebels…at least 75 new people daily unblock their veins, just not in our own country. We will not be confined by Profiteer’s Conspiracy without compassion within the Fortress. New non-profit societies will arise with the mission to help individual health choices not berate or block them. A proper diagnosis of vein blockage or stenosis and reflux will follow with angioplasty. We will applaud the pioneering doctors who are reversing this vascular condition and reporting a growing field of evidence. We will continue to step away from our canes and scooters and enjoy dramatic results such as a restored ability to hike, bike and run marathons. We will praise patients who are finding new symptom relief such as less fatigue, brain fog, and remission from their MS. We are not vulnerable misguided patients who need to be saved by long winded clinical trials. We are informed, articulate, quite aware of risks versus benefits and, for the first time, we see this breakthrough as one of the most exciting MS medical discoveries with a real light of hope…no miracle catheter or cure…just a liberated feeling that we can be our own masters once again in our family’s eyes and legacy.

(photo courtesy of Danial Neil)













We will take our connections and influence and continue speaking out, looking for a balanced truth and democratic rights. We are no longer hostages and proclaim our freedom. Now we must connect and work hard to break the hostage mentality of our Medicare system. Our first class doctors must not be shut down by the forces of the Fortress but allowed to shine on the world’s stage of new research, discovery and celebration. Our country and our citizens deserve better.

Mary Berukoff

Lindsey Kuglin's opinion from the Walkerton Herald-Times

Feds abandon MS sufferers in Canada

By Lindsey Kuglin
writing for the Walkerton Herald-Times
http://www.walkerton.com/

It’s horrifying to watch a young and healthy person deteriorate so rapidly, that person is like an old and frail version of themselves in a matter of months.
Those who know someone with multiple sclerosis are very familiar with this disturbing picture.
Researchers don’t know why, or how the debilitating disease attacks. After 200 years they still don’t know what it is.
News out of the federal health ministry last week says to those of us waiting for a cure that they don’t want to find out.
Health Minister Leona Aglukkaq announced last Wednesday that they won’t fund a promising clinical trial for the so-called “liberation therapy.”
That’s a pretty hard pill to swallow for those affected by the disease.
She said that the therapy, which involves angioplasty of veins in the neck, is too risky because it’s based on an unproven theory.
So prove it.
Why, when Canada has one of the highest rates of multiple sclerosis IN?THE?WORLD, are we not the ones to hold clinical trials? Why are we relying on someone else to find the cure?
An Italian physician, Paulo Zamboni, has put forward the theory that blocked veins in the neck or spine cause iron to build up in the brain, and he says that’s the cause of MS. He proposes to open the veins by inflating small balloons in them as a treatment.
Canadian Head Research Institute Dr. Alain Beaudet said that the procedure is too risky to try on Canadians. So Canadians are trying it themselves.
Many of our desperate citizens are going overseas and spending thousands of dollars for liberation therapy.
In a country, as rich as we are, and given that we have 55,000-75,000 people living with MS, there should be no reason that they’re going to India for the treatment.
Here in Canada, MS is treated with a course of daily medication that, according to my brother-in-law living with MS, costs about $1,500 a month. And those drugs just ease the symptoms, they don’t fully treat them.?But under the drug haze, the symptoms are still there.
My brother-in-law is 32 years old, and he can’t walk the couple blocks to the store. He falls down a lot, and somehow, he’s able to laugh it off, but it’s not funny at all.
How discouraging it must be to not be able control your body, and then when something comes along that might help, to be shut out. But Aglukkaq hasn’t had the last word. MS?patients are going to rally on Parliament Hill on Sept. 22 to try again.
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In other news, a cure for a bleeding heart has been found, and the feds were the first in line for it.
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http://www.walkerton.com/editorial/article/92011
Photo courtesy of Danial Neil

Monday, September 6, 2010

Litaneutria Minor; Agile Ground Mantid

Litaneutria minor, or the agile ground mantis, is native to the drier regions of the southern Okanagan Valley and some dry, desert areas in the U.S.

Also referred to as L.Minor and is a small “praying mantis”.
It likes to perch (sit) very still on antelope bush (which is also endangered less than 10% left in British Columbia.)
It preys upon other insects (moths,flies,grasshoppers katydids and crickets) but also upon it’s own species.
Cannibalism is most common during mating season, if it occurs, but is not common in most mantid species.
Ground mantids have been observed “chasing down” prey instead of adopting the “hold perfectly still”approach.
The ground mantis is very aggressive in the insect world and will defend itself against predators or “prey” that is putting up a fight.
It will make itself appear larger than life by stretching it’s arms out all the way and standing really tall to frighten off predators.
The males have diaphanous wings and the females, smaller wings. They are capable of short bursts of flight usually near their ‘habitat” such as the antelope bushes.
They can adapt their colouring to their environment to remain “safe” from predators.
They can be predated upon by spiders and other insects when they are in the “nymph” stage of maturity.
They are also prey as well to birds, snakes, and other native predators.
In the late summer and fall the female ground mantid lays her eggs. They are small “egg masses” and are sometimes on the ground or attached to low bushes or ground cover.
She might lay more than one “capsule” with 50 to ~400 eggs.
The nymphs are mature in about 13 weeks.
Female ground mantid lives ~156 days and Male ground mantid ~47
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Mantid


Praying on the ground
Praying ground mantid
agile and running after prey
Praying for sustenance
Praying for antelope bush to remain
for prey to come and prosper for millenia
Silent cycle of prayer
Pray


by Ruth-Ann Neil
September 5, 2010

photo courtesy of Danial Neil
picture taken just above Oliver, BC

Wednesday, September 1, 2010

THE TWINS ARE BACK!!!!!!!!!

TEN BIGGEST LESSONS LEARNED FROM MY BROTHERS’ CCSVI VENOPLASTY in MEXICO


These are some personal thoughts (no advice) about a recent trip to the Clinics of the Heart in Los Cabo San Lucas. I accompanied my twin brothers who have been diagnosed with CCSVI as well as MS, to open their vein restrictions there. Yesterday, they returned home, proud of doing the treatment and looking forward to their "new legs" and lives.
Lesson 1: What a number of different people are affected with MS…but who wants to be 30 years old and sentenced to a wheelchair existence? Some had suffered for 53 years...some had been diagnosed for just 4 months. Farmer’s wives, lawyers, accountants, real estate developers, business owners, insurance brokers, health care workers, even a physiotherapist who at one time cared for MS patients…it didn’t matter the occupation or environment. MS had struck them all at various stages. Some were bound in wheelchairs or scooters...others had leg braces and canes, some shuffled along with help of partners.
No one seemed to have the illusion that treatment for CCSVI was a magic catheter or wand. Thoughts of liberation were linked to small steps of improvement. Articulate understanding of the issues…intelligent conversations…Nothing is working for me...and I’m getting worse. I’m having reactions to drugs. Why not open our blood veins...that’s all we ask for. I just want to play with my children again.
There was a community of shared feelings...instant bonding. It was commented about the numbers of wives and husbands still supporting their spouses...families who persevered together.
Only words for the MS Society were frustration, disappointment and betrayal.
Lesson 2: The treatment protocol was similar for all 17 people that week. Each person received a MRI with venography, Doppler Ultra Sound of neck veins and neurological assessment scale of 8 functions.
The medical staff was efficient and understanding.
The catheter insertion was a tiny opening. The opening of the balloon was temporarily painful but dealt with medication if too uncomfortable. If an occluded vein proved too difficult to open, then as a last resort, a stent was used. A couple people did receive it.
After the treatment, the next day, the neurological test was reviewed again to check for signs of improvement. If no improved evidence, then the doctor would want to do another treatment.
Lesson 3: The number of varied responses following treatment was to be expected. Everyone talked about the unique treatments to open their veins and degrees of recovery. This was logical because each person started with various symptoms, suffered for different time periods, with different prior health status.
Here are some of the comments shortly after the treatment:
I can see the veins in my hands again...
My daughter’s mouth droop is gone...
My hands and feet are warmer...
The purple discoloration in his foot is gone...
My sense of well-being is clearer...
My numbness on my side is gone…my fingers don’t tingle...
I couldn’t do this before...quick two-step or pirouette....
I don’t have to take bladder control meds...
I can do some of my yoga poses...
Why is everybody’s response so different?
Is it the duration of disease…months versus years?
Is it because of physical fitness prior to treatment? More weight or less weight?
Is it degree of stenosis? Procedures varied from one and half hours to four hours.
It certainly seems, logically, the sooner this condition is treated…the faster the recovery with proper blood flow can be expected.
Lesson 4: A big surprise was the unexpected nature of twin brothers’ irregular veins. The imaging and actual venoplasty showed very similar restrictions and blockages in both jugulars and azygous veins. Could be this be a genetic factor here? However, both brothers have widely differing symptoms at the beginning and different results after treatment. It would seem that similar vein structures didn’t seem to play a part in development of MS symptoms.
Therefore, what kind of practical information can neurologists hope to conclude by studying veins for the next two years when twin brothers can have such similarities and differences?
Lesson 5: Another exciting possibility that warrants more investigation is physiotherapy following venoplasty. On one hand, patients get the benefits of normal circulation and vein reflux control. But on the other hand, for people like Matt, who had increasing problems walking with a spastic left leg, now some exciting possibilities were seen with physiotherapy. It makes total sense that leg muscles that haven’t been used properly for years now need to be restimulated to make original connections to normal walking.
In fact, this is exactly what happened. A registered physiotherapist did some neuro-stimulation on his left thigh quads and noticed his tibia anteriors (front leg muscles) were also interacting. He could curl his left foot toes with the neurostimulators on or off. She was amazed because it showed there was nothing wrong with the nerves in his leg but they needed more reconditioning to reprogram the brain to correct footdrop and inversion spasticity.
Can this be the other side of the coin…proper circulation then proper stimulation for reco-ordination and mobility?
Lesson 6: No doubt, there is a worldwide medical revolution happening. A young MRI radiologist said he wanted to be known as an imagist because the growing medical emphasis is to image the body to see internal structures and implications for disease. The focus is to try and correct abnormalities versus taking a host of synthetic drugs that often mask symptoms at best...at worst, create a cascade of side effects. Correct structural problem…correct body’s own homeostasis.
What causes veins to constrict or azygous veins to twist seems largely unknown.
It is understandable why neurologists are standing their elitist ground on their 100 year old theory about autoimmunity. Nobody likes to be wrong. Some have even refuted images of better blood flow. Double blind studies are a scientific paradigm but when a new theory takes flight without need for prescription drugs and side effects and such informed patient advocacy, then due diligence must be paid to honor patients’ choices for care.
Lesson 7: There is so much more scientific research needed. But for the first time in history, putting together a data base of empirical evidence is on the shoulders of people who have undergone the procedure. What is Health Canada doing? Still looking to see if venous problems exist...still investigating equipment to image veins correctly…as mentioned by Dr. Traboulsee (head of UBC MS Clinic) on a recent radio show as to why he couldn’t accelerate his research. Still planning a double-blind randomized study where 50% MS patients have blockages and 50% of non-MS patients do not with “blinded” radiologists is no longer feasible in the vortex of world research.
How can any doctor image veins, find blockages and leave untreated. Would any doctor find angina or atherosclerosis in arteries and leave untreated? Do you have to be a rocket scientist to know a healthy circulatory system includes function of both arteries and veins?
Even the latest scanning techniques do not always show vein abnormalities...the true test to find and open restrictions is via a catheter.
The latest 2.4 million dollars awarded by MS Society for “imaging” will probably turn out to be a stop-gap, superfluous red herring. Dr. Traboulsee pointed out that he has funds to study veins but no research money to treat them. Even more hopeless is when his research partner, Dr. Knox, admits she doesn't know how to test patients to see if they have blocked veins which “may or may not be related to MS.” It is so indescribably sad to note other doctors are applying their knowledge and training new doctors while Canadian authorities are still trying to find similarities or the proper equipment.
Lesson 8: Most importantly, true CCSVI research really begins after the venoplasty. Currently, foreign clinics can only make initial observations and the patient is gone without the opportunity to study long term evaluations of improvements. They are shortchanged in their ability to report their clinical data. What if, there is restenosis? What exercises help to restore normal activities? Is medication to be continued? What after care is available with family doctors? How can medical documents to be shared in professional communities?
Lesson 9: A special thank you to Dr. Moguel. His reputation as one of the world’s top cardiovascular specialists is well deserved. He worked to open stubborn veins for as long as he could and stenting was an option only in the most difficult cases. The procedures were scanned, documented and will be shared as reports within the medical community. He attended one of the group suppers to see "patients getting healthier and being happy." What a special opportunity is being missed by Canadian doctors!
Special gratitude is given to the other doctors, nurses and technical assistants who applied rigorous testing, procedures and understanding to their foreign patients. Who would dare cast the first stone that the Mexican health system is lesser than ours because they are not restrained by bureaucratic mazes to prove constricted veins even exist? The doctors found 100% of MS patients had vein restrictions of one degree or another and did something about it.
My brother, Matt, is now walking without a cane…and our little town is impressed.
Lesson 10: As you can see, the journey opened more questions than answers. There was nothing observed that first-class Canadian doctors could do as well with the greater benefits of proper clinical follow-up and a chance to celebrate a return tohealth. Ten years from now, with exponential growth, more formalized training and maturity of technique, these foreign clinics will probably continue to lead the research. Our country has fallen behind the learning curve, not because our cardiovascular surgeons and interventional radiologists aren’t also brilliant, capable and eager to learn. Other countries understand that it is the entrenched neurologists with non-adaptive mindsets and non-medical MS Society directors who have appointed themselves guardians, allocate research grants, influence decision makers in order maintain nice salaries with approved drug therapies.
   I felt embarrassment, not pride, in trying to explain why an advanced country like Canada is discriminating against its own citizens. What is wrong with our society as a whole when Facebook and YouTube become a medical source of information? How has this severe medical reversal happened…when patients need to gather clinical evidence to show their doctors how new scientific discoveries work…instead of doctors “doing no harm and helping their patients.” Stop this hunkering down mentality imposed by neurologists and non medical lobbyists that Canadians must cross this "experimental, controversial territory" by themselves. This is not a competition. The MS Society must back off playing “house doctor.” Canadian vascular and interventional specialists deserve better. Canadian citizens deserve better. World wide science and advancement and co-operation will make our world a better place and our right place in it.

PPS: Dr. Traboulsee ...something else to add to your research data file. My twin brothers had CCSVI treatment in Mexico. Now both are thinking about starting a local contracting business versus possible institutionalizing for one brother. How would your “wonderful drug therapies and stronger ones yet to come” stand up to this CCSVI therapy?    sincerely, Mary Berukoff
















Photo courtesy of Danial Neil