The way forward

We've all learned a great deal about how to live well in advocating for better MS treatments.
One important lesson I've witnessed is that healing is not about making money.  We will never heal disease if we put dollars before people.

Doing the same thing over and over again and expecting different results is the definition of insanity.
Our world is insane.  We sense this, and we know things must change.  But we become overwhelmed by the immensity of the situation.

The health of our own selves, our neighbors and our world depends on our awakening to this need for change.  We cannot sit by and be passive, or wait for some politician or celebrity to fix this.  There are no caped crusaders coming.  For those who are believers, we know that our creator asks us to take care of others, and to love our neighbors as ourselves.  We are all going to have to care.  If you've read this far, chances are you also care.  So, consider the rest of this post a bit of encouragement to keep going.

In the past twelve years, since Jeff was first diagnosed with MS, I've seen very little movement in the understanding of MS etiology, or what causes MS.  We've seen over 10 new pharmaceutical treatments come on to the market, with varying degrees of success in addressing only one type of MS, relapsing remitting.  All of these drugs are based on the unproven theory of an errant immune system which needs to be beaten down, modified, or ablated.  But not one drug has addressed the underlying loss of gray matter integrity, or neurodegeneration--- which is behind MS disease progression.  Understanding the vascular connection to MS has been underfunded, and in the case of CCSVI, only funded to be debunked.  This is because it is difficult to monetize a new, cardiovascularly focused lifestyle.  There is not one pill to heal the endothelium, or increase the brain's perfusion and lymphatic drainage.

Even with all of the negative influences of social media: the bickering, the false narratives, the hacking and use by foreign agents to create chaos---even with all of this darkness, there has been the light of connection.  People have found help for their most pressing concerns.  We've seen people care enough to share good information on wellness and lifestyle modifications, as well as the vascular treatment modalities, and this has changed lives.

Ordinary people have shown up, created the conferences, gone to the meetings, walked alongside others.  Some even made movies, wrote books, funded research,  found doctors, walked the walk and showed others an "alternative" way to treat MS.   And because of all of these efforts, those newly diagnosed with MS are doing better.  When Jeff and I meet newly diagnosed people these days, they ALL know about and implement healthy diet plans, optimize vitamin D levels and sunshine exposure, exercise, meditate, and employ good sleep habits.  They believe they can change their lifestyles and affect their health.  And they do.  We might forget, but this focus on lifestyle modification is new!  link

Here's a wonderful upcoming conference on alternative MS treatments in BC, Canada this October 19th, hosted by the Canadian Neurovascular Health Society
https://www.cnhs.ca/copy-of-2018-neurovascular-health-c

Beyond the pharmaceutical world, we've watched other wealthy and powerful corporations put their bottom line above human life.  From the fossil fuel industry, to the rise in private prisons, the industrial-military complex, the gun manufacturers, and industrial food producers.  These industries create products which are not benign.  They make money harming our bodies, our water, land and air.  They have changed our planet, perhaps irrevocably.  They make money exploiting our fears.

In my lifetime, the world's population has doubled---from 3.5 billion to over 7 billion humans.  And there will be more people coming.  Projections are for 10 billion humans on earth by 2050.  Considering a human beings' value in terms of money-making potential-- as a creator or consumer---will no longer suffice.  Dividing people into groups of good/bad, legal/illegal, white/brown, Christian/Muslim/Jew/non-believer will not work.  There will be more and more climate change refugees, as people will be forced to leave their drought stricken homelands in search of water, food, life.  Building higher walls, creating harsher penalties will not stop the flow of humans seeking survival.  They are us.

We will have to ask ourselves, how can we create a world which will sustain life, and not focus on depleting our resources for financial gain.  How can we be leaders in the change?  How can we share and care for our neighbors as ourselves?

"We need knowledge of how to share."  I highly recommend you watch this short, inspiring video.
Link to Vandana Shiva discussing the Way Forward


Encouraging YOU to find the way forward.
Joan

Lessons learned from The Biggest Little Farm

When Jeff was diagnosed with MS in 2007 and I began reading about Multiple Sclerosis disease etiology,  I wondered why more and more people were being diagnosed in recent decades.  Was it simply better means of diagnosis, thanks to MRI technology?  Or was there something more, something about our modern lives that contributed to rising rates of MS?

When I looked at all of the things that had changed over the last two centuries, and how these environmental changes and MS were linked, I found the connection I was searching for in the endothelium.  link  The Endothelial Health Program was created as a means to restore endothelial cell health, and it addressed all of the environmental factors connected to MS---all of the things we could change in our lives. link   And in the ensuing years, researchers have published on this connection, as well.  Western lifestyle and MS -- Intestinal permeability, food additives and MS  --
The Western diet/lifestyle and disease

It has been a journey for me and Jeff, and so many of you, as together we learned how to incorporate nature, sunshine, organic nutrition, outdoor exercise, better sleep habits, reduced time with technology and stress, and increased time with family and mindful living.  Our recent friendship with farmers John and Molly Chester, creators of Apricot Lane Farms and the documentary The Biggest Little Farm, (which Jeff scored), has reaffirmed all that I intuited over a decade ago.  Our health as human beings relies on the health of our surroundings.   All that we breathe, eat, drink, take in and love becomes part of us.

I hope you have an opportunity to see The Biggest Little Farm on a big screen.  link  This film is all about the inconnectiveness of life on planet earth, the importance of healthy soil for healthy food and healthy lives, and living in harmony with nature.  It is very much like the description below, of life lived before the industrial revolution.  I hope you can find ways to make these changes in your own life.  I hope we can ease the pain of MS in our lifetime.  And I hope we can heal our planet.  Because we are all connected.

Here is a section from The Endothelial Health Program I wrote in 2008, about the change in our modern lives, and the impacts on health.  

Be well,

Joan

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Life as it been lived for thousands of years

You and your husband get up from bed as the sun rises and the rooster crows. You get dressed and head outside together to milk the cows and feed the livestock. You work the pump at the well, get a drink of water, which comes from a fresh spring underground. The physical exertion of pumping water and carrying it, lifting the feed and milking the cows has worked up a good sweat. You gather some fresh eggs from the henhouse, and head inside to cook breakfast. The meal includes coffee or tea made with spring water, fresh milk from the cow, eggs and toast with apple preserves, jarred last fall.

The children rise, get dressed, eat together and are soon out the door to walk to school. Your husband heads off to his work in the barn.  There is laundry to be washed and hung on the line and gardening to do. You spend over two hours out doors, in the sunshine.  Again, hard work and more exercise. This is not a life of leisure!

Fresh fruits and vegetables are eaten in season and canned and jarred for off season.  There isnʼt meat every day, but fish from the stream or chicken from the henhouse are served. Grains are whole, and flaxseed is added to the bread. Root vegetables and greens are plentiful. Mealtime is spent together as a family. After dinner, and after the dishes pots and pans are cleaned, the family sits together and reads or plays board games. Soon the sun sets and itʼs time for bed. Everyone is tired from the dayʼs activities and ready to sleep.

21st Century--Our Modern Life

You rise in the dark to the incessant buzz of the alarm clock. Itʼs a quick shower in chlorinated city water and blow dry before heading to the kitchen to make a pot of coffee. You get your water from the tap and microwave a breakfast sandwich of processed ham and cheese to go. You check your e-mail on the laptop and holler to wake your husband and the kids and hurry them up- thereʼs no time to waste! They get dressed, grab their backpacks and eat their microwaved breakfasts as everyone piles into the van.

Itʼs off to school where you drop them at the door. Then you get back on the freeway to sit in traffic. Love those fumes! Youʼre starting to get a headache. Trapped on the road, you try to make good use the time by calling clients and checking your phone. Your stress levels are now through the roof of the van. You get to the office late and have to deal with everything that has been piled on your desk. No time for the gym, and lunch is going to be a bag of peanut M&Ms and a can of Coke. You never see the light of day, except through your office windows. By the time you get home, itʼs dark and the kids are fighting over the Playstation.  You still need to make dinner. Your husband has texted you, heʼs running late and will miss dinner...again.

You pile the kids back in the van and head to a fast food place. Itʼs drive through and the kids donʼt mind. Youʼre famished and get a double cheeseburger, since you skipped lunch, how could it hurt? You get everyone home and get the kids doing their homework. Itʼs nine pm before you know it, and your husband finally gets home. He walks in and just wants to sit in front of the TV, heʼs exhausted. You get the kids bathed and into bed. Itʼs 11pm before you fall into bed, head pounding. You have trouble sleeping, and it seems like by the time you finally drift off, the damn alarm is ringing again!

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I do not mean to over-romaticize or idealize the lives of men and women from centuries ago. Theirs was a very different experience, and it was physically and emotional demanding. People got sick then, very sick, and many died premature deaths. But not many suffered from chronic diseases. Our modern lifestyle is much easier in many ways-- we have automated appliances to do our labor, vehicles to transport us, and conveniences our great, great grandparents could only have dreamed of. 

Our modern lifestyle has disrupted many natural and hormonal patterns; such as the circadian rhythm. We no longer use the sun to tell us when to rise and set. And doctors are seeing a deficiency of vitamin D (the hormone made by our skin when exposed to sunlight) linked to many diseases. Not coincidentally, lack of sunshine is one of the causes of endothelial dysfunction.

Here are some of the modern issues which are harming our endothelium:

1. Oxidative stress- Our bodies constantly react with oxygen as we breathe and as our cells produce energy. Our utilization of oxygen is a two-edged sword.  We need oxygen to survive, but as a consequence of using oxygen, highly reactive molecules are produced known as free radicals. These are electrons which have lost their partner in our breathing or energy process, or from outside influences, and they are now on their own. Unpaired, these free radical electrons damage the endothelial wall and make it permeable. Free radicals disrupt the balance of nitric oxide. In most instances, our body has enough of a supply of antioxidants from food to neutralize these molecules, but if the body is depleted, or there are too many coexistent factors, there is injury to the endothelium and a change in the balance of NO.

Some external factors which can dramatically increase the number of free radicals in our bodies and influence NO when we ingest, inhale or come in contact with them are:

Plastics, especially PCBs and BPA (1)

Smoking and second hand smoke

Smoking reduces nitric oxide in the blood vessels and causes an increase in ADMA, the modified amino acid which puts strain on the heart. Nicotine also causes vessels to narrow, so that less oxygen is delivered to the heart. Platelets become stickier, and therefore clot formation is increased. Smoking raises the level of carbon monoxide in the blood, which increases the risk of injury to endothelial cells. (2/13)

Metals exposure such as mercury and cadmium (3)

Air pollution, especially diesel exhaust (4)

Chlorine found in public drinking water (5)

2. Eating Bad fats

Heavily saturated trans fats, hydrogenated fats and chemically-altered fats damage the endothelium. (6)

3. Stress

Cortisol, the hormone released into the body when we are under acute stress, impairs endothelial production. (7)

4. Sleep deprivation- Lack of restful sleep, due to obstructive sleep apnea or simply not enough time in bed, creates endothelial dysfunction and constricts blood flow.

5. Acute Bacterial or Viral infections -

Chlamydia pneumonia, Lyme disease, Sepsis, Staph, EBV

All of these infections can become chronic as the endothelium is weakened, bacteria and viruses enter the tissues and the immune system is unable to fight (8)

6. Low Vitamin D levels-

A lack of sunshine and dietary vitamin D injures the endothelium (9)

7. Low Vitamin B12 levels-

Anemia/low vit. B12 creates high levels of homocysteine in the blood (a sulfur containing amino acid) which damages the endothelium A strict vegetarian diet that excludes all meat, fish, dairy and eggs, or an unbalanced diet of processed foods could create low vit. B12 levels and damage the endothelium (10)

8. High intake of glucose-

Ingesting too much glucose in the form of simple sugars increases endothelial cell death and increases oxidative stress (11)

9. Sedentary Lifestyle

Lack of physical exertion, especially cardio-vascular exercise, damages the endothelium (12)

For research cited:
http://ccsviinms.blogspot.com/2009/08/endothelial-health-program-august-26.html

The Chester Family

The Healing Power of Music

Most, but maybe not all, of you know that I'm a professional singer by trade.  I studied classical voice at the Eastman School of Music, where I also met my husband Jeff.  I've sung with the New York Philharmonic, the San Francisco Opera Company, the Los Angeles Master Chorale, but the majority of my career has been as a studio singer in LA.  I've sung on a lot of film and TV scores, albums, commercials.  Heck, you may have even heard me, and not realized it.   link to credits

Music continues to be my passion.  But my interest in music has changed over the years.  Especially as I watched how music affected Jeff.  After his diagnosis with MS, it was listening to music which would ease his neuropathic pain and calm his anxieties.   When he recommitted himself to his craft of composition, conducting and performing, I watched him heal.  Music was part of his new lifestyle.  One which incorporated a new way of eating, exercising, meditating, living.  His venoplasty procedure at Stanford allowed him even more energy to pursue his passion.  We watched his brain heal on subsequent MRIs.   Link to Jeff talking about music, CCSVI and MS

Music is universal. The images I've linked below are from a recent study.  They show six different human brains listening to music, while scanned with fMRI. The brains on the left listened to J. S.  Bach's first invention-- a gorgeous classical work which is a 2 voice fugue, originally composed as an exercise for Bach's sons.  Here is the great Glenn Gould.  link to Bach's 1st Invention

The people whose brains were scanned were not musicians, or at all familiar with the piece. However, there is activation across most brain regions, as shown by the orange color of activity on the scans. Notice how the images all look almost exactly the same, no matter the age, socio-economic status or health of the participant. Bach touched their brains in the same way.  Bach made their brains become alert, energized, activated. 

Orange= Activation

Blue= Oxygenation

On the right are the same peoples' brains listening to self-selected music-- which they chose because they loved how it made them feel. Notice how now the brain is activated in different regions, but the effect is one of calming and oxygenation--as shown by the color blue. This is the power of the music we love on our brains---it calms and soothes us, releases our emotions, heals us.

Why is this important? Physicians are now using self-selected music in psychiatric hospital settings to calm and "medicate" patients, and give them hope and healing. Music therapists are using different playlists to work with stroke patients, to help them regain balance, brain function, and health. Music is being employed as medicine.  link

I saw this in action last year, in a ground-breaking hospital, where a classically trained composer and fellow Eastman alumnus,  J. Todd Frazier,  has created a program which is changing music therapy.   New imaging modality is showing us what happens to the human brain on music.  He believes we were created to be music makers, listeners, participants. Music is essential to humanity.  link to more info on J. Todd Frazier

Here is the abstract for the published paper the fMRI image is taken from.  Todd was one of the authors on this study.  While in Houston, I also met with Dr. Karmonik,  the world renowned MRI imaging expert behind these studies---and he is not a musician, but he has become a believer in the brain altering power of music.  https://www.ncbi.nlm.nih.gov/pubmed/27464741

 "The researchers found distinct brain activation patterns for the different music pieces. The self-selected pieces, which Frazier says were quite diverse, brought about significant activity in the emotion and memory centers of the brain, while unfamiliar music activated attention and memory areas. Karmonik notes that, despite such different self-selected musical pieces, the patterns of brain activity were remarkably similar.

“We showed a similar connectivity pattern in the brains of these individuals in the self-selected music,” he says. “This is important because it shows it’s the music. That music really drives all of these brain processes even if you are of a different age, gender, or background. That familiar music really seems to do something for everybody.”

Having spent time with J. Todd Frazier, in meetings and in the hospital he has changed,  I've become a believer.  Todd's original desire was to prove the importance of music education---he was frustrated by the perception that music was not essential in schools, that music was merely entertainment.  As the son of a physician, he knew better, and set out to change this perception.  But now his mission is even greater.  He wants to use music to heal.

Since meeting Todd, I've wanted to bring this program to other hospitals, to more patients, to future music therapists and researchers.  And that is why I became more involved as a trustee at the University of Rochester.  Thankfully, other trustees and administrators agreed with Todd.  The Eastman School of Music and University of Rochester Medical Center will now begin a collaborative music and medicine program, to further understand and utilize the healing power of music.  

So, what can you do, today, to incorporate this science?  I would recommend putting together a 30 minute playlist of your very favorite music.  This should include music you are very familiar with, music which makes you feel something beautiful.  Every day, when you need to relax --go to a quiet place and listen to your familiar music playlist with headphones.  Breathe deeply and let the music wash over you.  You are oxygenating your brain. 

You should also explore new music in styles that you enjoy, but are not as familiar with.   When you are feeling terrific and energized already, try listening to this new music.  Let it further activate and stimulate your brain.  Try dancing or moving to the music in any way you can.  You are increasing neuronal pathways.

I hope this science gives you some hope and encouragement.  We can do so many things to heal our own brains--by adding music to nutrition, exercise, sunshine, meditation, sleep.  Our complete solution to chronic illness will never be found in one pill or infusion.  Healing means living in a new way.

Be well,

Joan 

What happened?

It's been awhile since my last blog entry.  It's not for lack of published research on the vascular connection to MS, as there are new studies showing slowed (hypo) perfusion in the MS brain link a breakdown of the blood brain barrier preceding lesion formation link and further evidence of the importance of cardiovascular health in maintaining brain volume for pwMS.  link

The hiatus was simply because Jeff and I have been busy. We've been traveling, performing, giving masterclasses, celebrating our son getting married and receiving his master's degree, and enjoying living.  Jeff remains active and continues to jog, hike and bike.  He has been very busy with composing commissions, including a song cycle for the St. Louis Symphony, a symphony for the New West Symphony, and new chamber and dance works.  Some new scoring projects to look out for in 2019 are the documentary "The Biggest Little Farm" and a new series for ABC called "Grand Hotel."   Trust me, we know we're blessed.  When Jeff was first diagnosed with MS in 2007, his prognosis was pretty dire.  We do not take his health, or our lives today, for granted.

I wanted to write this post to share a very important paper I first read several years ago.  It was written in 1988--over 30 years ago!   I believe it can help us answer the question as to what happened to CCSVI?  

The entire paper is here: Malcom Nicolson and Cathleen McLaughlin :Social constructionism and medical sociology: a study of the vascular theory of multiple sclerosis

The authors are responding to a critique of their work, which stated that societal hierarchies really didn't influence medical research, and needn't be considered.  The writers disagreed with this critique, and in this paper they show how medical research and treatment are developed with a societal bias.  This bias depends on who claims ownership of a particular disease and what their specialty is.  A researcher's area of knowledge and expertise decide how a disease is viewed and treated.

From the paper:

Scientists cannot therefore devise scientific theories solely in the light of their direct immediate experience of phenomena. They base new knowledge upon the relevant data and upon their pre- existing beliefs and theories. We understand the unknown in the light of what we already know - which, of course, in tum has its roots in training and in prior socialisation. Different observers, therefore, produce radically different cognitive worlds because modes of observation, and the points from which observation takes place, differ.

And the authors use multiple sclerosis as their empirical case study---by outlining how the neuron-centric neurologists had ignored and even deliberately buried the evidence of the vascular system's impact on brain health, in order to focus on their own immunological view of the disease and their  pharmaceutical immune modulating treatments.

This is from the abstract:

A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease in structural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of observation, and the points from which observation takes place, differ. It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated.

The vascular links to MS have long been known, since Rindfleisch first saw the central vein sign through a microscope in 1863.  CCSVI was not the first vascular treatment to be "debunked" by neurologists using badly designed and obviously biased studies.

As the paper states many times, vascular specialists are not as powerful as neurologists, and rarely are able to respond to these dismissals or badly replicated stabs at their research.  They are paid less, receive less funding for their research, are less respected.  We've seen them disparaged as "plumbers."  Neurologists comment that this is because blood vessels are not as complex as the brain.  And yet, ironically, it is a lowly central vein sign which is 100% accurate in diagnosing MS lesions.
The Central Vein Sign 

Before Dr. Zamboni was ever called a quack, Dr. Tracy Putnam, the founding neurologist of the National MS Society, was maligned for using a newly discovered blood thinner, dicoumarin, to treat his MS patients.  Neurologists were quick to point out that the blood thinner did not help all people with MS, and Putnam's work was therefore invalid.  All of his prior work, his blocking venous return in dogs and creating MS lesions, his understanding of the venous system, was rejected in toto.   Because the new and exciting science of immunology was gaining traction and research funding.  link

After that, Dr. Roy Swank received the "quack" treatment in the 1960s, for suggesting a cardiovascularly healthy low fat diet and exercise could help MS patients.  Even though Swank showed improvements in the vast majority of MS patients who remained on his program, neurologists tossed his research in the trash, mocking him and claiming his studies were not valid.  link

Dr. Franz Schelling, an Austrian physician published a complete review of prior vascular MS research, and asked important questions as to why the jugular foramen opening and venous returns in skulls of people with MS were vastly different from normal skulls.  He research took place at the University of Innsbruck in the 1970s, and his original paper would be published, and is frequently cited by vascular and anatomical researchers, but not neurologists. ( link   link  link )

He then studied cerebral lesions and found a mechanical connection between venous reflux and lesion presentation in the brain and spine.   Dr Franz Schelling produced a Poster Presentation - The Discovery of the Venous Origin of Cerebral Multiple Sclerosis - at the Second European Congress of Nuclear Magnetic Resonance (NMR) in Medicine and Biology.  He was there to encourage other researchers to look at what he had discovered in people with MS  link to poster

Highly recommended and thorough research, which was tossed in the bin with nary a response or curious inquiry from neurologists, and a tragic portrayal of quackery, once again.
link to Schelling's research

The paper on Social Constructivism focuses on another doctor who was similarly dismissed.  Dr. Philip James had the same exact treatment of his hyperbaric oxygen MS studies in the 70s and 80s.  First, he was labeled a quack, then neurologists attempted to copy his studies, changed his protocol and (no surprise!) couldn't replicate his results.  Again, research tossed into the garbage.  This pattern of debunking vascular studies has a long, sordid history.

As the accounts of new experiments and fresh clinical trials are published, each side is able to place its own interpretation upon the results. The early hyperbaric oxygen trials were badly organised and poorly controlled. The results were thus easy to dismiss, particularly since multiple sclerosis is often marked by spontaneous remission, regardless of medical intervention. 

What is most important to take away from all of this is that each of these older "debunked" treatments----HBOT, diet, exercise, blood thinners (such as aspirin) are now scientifically recognized as helpful to people with MS, because of their affect on cerebral blood flow.   And people with MS often utilize some or all of these treatments, without realizing their connection to vascular MS research.  Are these treatments cures?  For some, they can stop MS disease progression. But MS is a wildly variable disease, and these treatments do not work for all.  Does that fact invalidate the research?  I don't think so.  But I'm not a neurologist.

I had hoped people would recognize that venoplasty was not being called a "cure" for MS.  It was simply another treatment--like exercise, diet, lifestyle, meditation, sleep, etc-- which could potentially improve cerebral blood flow, heal the endothelial layer of blood vessels, maintain gray matter and slow MS disease progression.  No surprise,  neurologists went ahead with ill-conceived and flawed studies, in order to debunk Dr. Zamboni and shut it all down.   Better to kill the theory and debunk the messenger,  than attempt to understand the connection.

Even after all of this unnecessary drama, it makes me happy to see people wth MS sharing their knowledge and encouraging each other on social media.  People with MS are healthier today because of this collective knowledge.  I still have hope that the ISNVD will further define the connection between the larger veins, cerebral perfusion and MS, and how to treat CCSVI.  ISNVD website   And maybe someday, neurologists will admit that the engorged central vein-- first seen with a microscope in 1863 and now part of an MRI MS diagnosis-- is important to understand, even if it's only a lowly blood vessel.

I can hope,

Joan