Living in a post truth world

Hello dear readers,

I hope that you and your families and friends are surviving this most challenging time.  Please let me know how you are faring in the comments.  I've thought about our group members many times, praying that you've been able to stay sane and somewhat healthy, safe at home.

Jeff and I remain well.  We continue to follow The Endothelial Health Program, more rigorously than ever.   Exercise, sleep, sunshine, lots of fruits and veg, time in nature, laughter, meditation and music are helping us stay healthy and sane.  We are in touch with our family via Facetime and phone calls.  Work, meetings, and social interactions now happen on Zoom.  We get outside every day for exercise, recreation or yard work, while maintaining social distancing and mask wearing in public.   We have several family members who have lost their jobs.  I retired and took my studio singing pension early at 58.  Thankfully, Jeff continues to compose and has several projects in the works.  You can hear his beautiful music on the new Netflix documentary Athlete A. 

We realize how fortunate we are not to have to work outside our home to make a living. We are deeply aware that this has been an extrememly difficult time for all, most especially our front line workers, service workers, hourly wage earners, as well as our underserved minority communities, and those with underlying chronic illness and disabilities.

This kind of unrelenting stress and anxiety is hard on people with MS.  So is not able to see your doctors or physical therapists, get massages, treatments, or visit with friends.  It's hard not to go to a religious group gathering,  a family event like a wedding, or simply go outside for a change of scenery.  All of these situations are impactful, and can affect your health.  In the midst of this, I hope you are able to find activities that bring you a bit of sunshine and joy.  I've seen many MS friends taking joy in gardening, listening to music, enjoying family, and being in nature.

Over the years, you all know I've handed out a lot of unsolicited advice. I've tried to back up the medical advice with peer-reviewed and published science, not just anecdotal stories. That's why I always include links to medical journals in my posts.   I've joked about being your bossy Mom, and telling you how to eat or stay active.  But this time of forced stillness has given me the opportunity to ask myself WHY I have felt it so important to share all that we learned to help Jeff heal.  

So much of what we click, hear and read today is about identity and narrative.  There are thousands of falsehoods, conspiracy stories, invented tales, all created to mislead society.  I've been horrified to see what people are being persuaded to believe, especially in regards to this current pandemic.  Experts, researchers and scientists who have trained and have insight are being discounted for heresay, anecdotal evidence, and downright dangerous advice.  This has happened throughout human history, when experts and intellectuals have been portrayed as "the elite," in order to sow discord in society.   A rise in populism around the world has put us in a very dangerous situation, where the average citizen no longer believes in scientific evidence.  Whether flat earthers, QAnon, anti-maskers, climate deniers; all deny scientific evidence in favor of a belief system that makes sense with a chosen story.

Believe me, I get the irony.  Jeff's healing experience has been thrown in the heap of anecdotal evidence and heresay.  The entire CCSVI investigation has been portrayed as quackery, and the vascular connection to MS and benefit of lifestyle intervention is still downplayed, even though the research began in medical journals and continues to be published.  But I contend that our understanding of lifestyle and vascular intervention in the healing process of MS continues to build evidence, and is based on the earliest scientific discovery of the central vein sign, discovered by Rindfleisch in 1863, and still seen today a a reliable biomarker in MS.  Inflammation in MS occurs around cerebral veins.  That's the truth.  We still do not know why.  https://ejrnm.springeropen.com/articles/10.1186/s43055-020-00185-3

So, who am I to even comment on any of this?  I'm surely not an expert, I have no medical degree or training.   I should have shut my trap years ago, not gone up against MS specialists or challenged my husband's neurologist.  I certainly should not have written or shared anything online.  I have participated in the exact same narrative creation and populist rhetoric I find so abhorrent today.  I have spun a tale, and sowed confusion.  I am exactly part of the problem.  Ironic, huh?

I would suggest readers follow the ongoing work of the International Society of Neurovascular Disease, for continued research into the heart/brain connection.   These researchers are continuing to advance the science behind CCSVI, vascular contributions to dementia, and the impact of lifestyle on the heart brain axis in all diseases of neurodegeneration, including MS.   https://isnvd.org

Also keep your eyes on the work being done at UCSF at The Gladstone Lab.  Researchers there are honing in on toxic blood particles found in the MS brain, and linking the clotting protein fibrinogen to inflammation and decreased myelin repair.   

https://gladstone.org/news/overcoming-obstacles-promote-repair-multiple-sclerosis

Do we get to pick and choose our truth?  Or is there an ultimate reality, beyond our personal narratives?   Our dear friend, theoretical scientist Brian Greene, has a brilliant new book Until the End of Time, in which he attempts to explain the emergence on life on earth.  Simple, right?   Brian's own life work helps me put things in perspective.  Evolution and entropy are tensions bound by gravity.  Gravity is the real, measurable force which binds us all--stars and humans alike.  There is mathmatical truth in gravity. As Brian states, "Life is physics, orchestrated."   Listen to Brian explain it, better than I ever could. 

 https://www.youtube.com/watch?v=YXfMN3mZa0Y   

But even in this truth, Brian admits we still do not have scientific proof as to WHY humans are conscious beings.  I have a theory on this, as a religious person who believes in a creator God, but I don't have an equation.

I would submit that even in this unknowing, there is still a core of scientific fact. I cannot chose to ignore the rules of gravity, even though I might not like them, or don't completely understand them.  There are so many brilliant people like Brian, experts and reseachers, who will spend their lives exploring topics we can never understand.  These exceptional minds are working on COVID19 today.  Do we ignore them, simply because they work in difficult concepts?  I may not know the mathematical formulae which prove gravitational force, but I still live in a world governed by gravity.  I may not like the fact that I have to wear a mask or distance myself right now, but I trust the trained epidemiologists exploring the corona virus. 

Listen to the experts.  Believe the smart people. Think critically.  Question when individuals spout out theories formed "in my gut," as opposed to in a lab.  When we get on an airplane, we all want the most experienced captain in the cockpit, not the most charismatic one.  We want our surgeon to be the one who's the most well-trained, not the one who entertains us.  

Most importantly, don't listen to me.  Find your own team of doctors and specialists who you trust, who can take care of you, who will tailor your lifestyle program to suit your needs.   That's the truth.

Here's hoping we all get through this,

Joan 

COVID-19, nitric oxide (NO) and your endothelium

You will be seeing more in the press on nitric oxide (NO), the 2 atom gas which is being trialled to treat patients in COVID-19.  Those who have read my blog for the last decade will know all about NO.  Healthy levels are the hallmark of a healthy endothelium.

Nitric Oxide (NO) is shown to kill the corona virus, as it engulfs invading viral particles in the human body.  This was demonstrated in the SARS outbreak.  https://pubmed.ncbi.nlm.nih.gov/15650225/

These new science stories will not be addressing the fact that we make our own NO in our bodies every single day, and that NO is the marker of endothelial health.  Instead, they will write about viagra.  Clickbait?  Perhaps.

Healthy levels of NO mean healthier erections.
link to published science "The Penis as a Barometer of Endothelial Health"

This is why you'll see viagra trialled to help COVID-19 patients.  It boosts nitric oxide levels (which boosts bloodflow to the penis as well as other parts of the body)   I know....I haven't written that before, because, well....TMI?   But we're well beyond that now...

Here is a good summation of how nitric oxide (NO) is being trialled to treat COVID-19, from the LA Times  link

Pre-existing endothelial dysfunction might be the reason older people, those with cancer, heart disease, diabetes, or autoimmune disease are more susceptible to COVID-19 virus replication, organ failure and cellular death. They do not have a robust population of immune cells, specifically T helper cells. Their endothelial cellular lining has broken down, and they have endothelial dysfunction.  This also means they have less available nitric oxide in their bodies.
link

The FDA has granted permission to use inhaled nitric oxide (NO) as a treatment for those with COVID-19.  Here is a Newsweek article, published today:
https://www.newsweek.com/what-nitric-oxide-how-gas-that-gave-us-viagra-could-help-treat-coronavirus-patients-1496520

But these treatments will not be available to us just yet, and they are being trialled on patients who have already contracted COVID-19.  

The good news:  You can heal and strengthen your own endothelial cells and increase nitric oxide availability. At home. Today.  You don't even need a little blue pill :)

Here is the Endothelial Health Program I developed for Jeff in 2008, to boost his nitric oxide levels and to heal his endothelial cellular layer.  http://www.ccsvi.org/index.php/helping-myself/endothelial-health

And here it is, in simple English

1. Movement. Daily cardiovascular pursuits are essential and healing. Shear stress, created by an active heart pumping flowing blood over endothelial cells, maintains EC integrity by increasing nitric oxide release. Inactivity allows endothelial cells to die. 

2. Stress reduction. The acts of deep breathing, the practice of meditation, yoga, prayer, all reduce endothelial cell damaging cortisol and increase healing, vasodilating nitric oxide.

3. Liver health. Decreasing liver damaging toxins--like alcohol, plastics exposure, chemicals, pesticides, heavy metals, drugs--and increasing liver protecting flavonolignans (like silymarin) and antioxidants found in fruits and vegetables, maintains endothelial cell health.

4. Sunshine and Vitamin D supplementation.  Skin makes vitamin D when exposed to ultraviolet B (UVB) rays from the sun. Because of sunscreen and our indoor lives, many people are not receiving enough of this potent hormone. And our circadian rhythm is affected. Vitamin D creates endothelial cell health by increasing nitric oxide. UV rays release nitrates from the skin, creating vasodilation. 

5. Sleep. Sleep deprivation creates endothelial dysfunction and cell death.

6. Eating whole, organic foods. Eating a diet of whole foods (unprocessed foods; foods that retain the natural state) provide ample levels of nutrition, vitamins and antioxidants. Antioxidants bind with free radicals to minimize the damage they cause to the endothelium. Vitamins B and C are hugely protective of endothelial cells. A lack of B vitamins increases homocysteine, which kills endothelial cells.

7. Eating healthy fats. Increasing omega 3 (DHA) fats found in fish, olives, flax seed, avocados, walnuts, etc. and decreasing transfats and highly saturated animal fats improves endothelial cell health. 

8. Probiotics and gut health. The endothelial cells of the gut's lining communicate with the rest of the body and rely on "good" bacteria. 

9. Essential minerals. Magnesium, calcium and zinc are all important in the preservation of endothelial cells.

10. Anti-inflammatory food sources, spices and herbs. Curcumin, Salvia, Ginko, and Garlic are all shown to decrease inflammation and regulate blood viscosity, preventing hypercoagulation, allowing for better shear stress. 

11. Reducing glucose and gluten. Sugary baked goods, simple breads, pastas and snack foods are damaging to endothelial cells. 

12. Smoking cessation. Please quit...smoking kills endothelial cells.

13. Laughter, joy, community, purpose, loving relationships. All of these things increase nitric oxide and improve endothelial health. 

Again, I am NOT a doctor. And you should consult your own doctors on best practices for YOU.Let me know how it goes.
Jeff and I are at home, thankful to be together, and still thankful for his health.

Stay well!!!

Joan

Thank you, Joan Embry

We have lost a brilliant, courageous and loving woman.  Joan Embry was deeply devoted to her family, as well as a movement for people with MS.  Joan passed away on April 1 (unexpectedly and unrelated to COVID-19)

As a trained nurse and nutritionist, Joan Embry worked tirelessly with her husband, Ashton Embry, to create a program which might help their son cope with his multiple sclerosis diagnosis.  Out of the love and concern for their son Mathew, the Embrys created Direct-MS, a proactive charity formed in 1998, with the goal of "providing information and strategies that could help reduce symptoms and even slow or halt disease progression."  DIRECT-MS link

The Best Bet Diet was a cornerstone development of the Embrys, based on scientific research compiled by Ashton Embry.  Matt quickly incorporated this diet over 20 years ago, and he credits his successful, progression-free life with MS to this program.  Here is Matt talking, enthusiastically and obviously wonderfully healthy, about the diet that changed his life.
 The BEST BET/MS HOPE DIET

This program would eventually be the inspiration for Dr. Terry Wahls program, as well as many others.  It was a post about the Best Bet Diet on an MS bulletin board regarding vitamin D that sent me off to PubMed to explore the connection with my husband's diet, exercise and sunlight exposure; as related to his vascular problems.  This eventually became The Endothelial Health Program.  I would learn years later that it was Dr. Roy Swank who was the grandfather of this approach to healing with MS, as he had noted the vascular connection and impact of diet decades earlier.  Dr. Swank was also the inspiration behind the Best Bet Diet.

The Embrys were at the very beginning of the empowered patient movement on the internet.  We would eventually connect over Dr. Zamboni's research into the venous system and CCSVI in 2009, after my husband had been treated at Stanford University.  The Embrys were curious about this research, and would begin the Canadian exploration into the vascular connection.  Matt would eventually be treated for CCSVI.

But the cornerstone of Direct-MS is the diet.  And as we all know---it's one thing to eliminate foods, but quite another to find foods and recipes that will keep us satisfied and fit into our lifestyles.  Dr. Swank was well-aware of this problem, and worked with his patients to create his program, as did the Embry family.

In the last year of her life, Joan was updating recipes and working on The Best Bet Cookbook, which Direct-MS, incredibly generously, gives away for free on their website.   You can download a free pdf of the book here:     The Best Bet Cookbook

The Embrys have never put profit or personal gain ahead of their message.  They have always been tireless advocates for better living for those with MS.  The few times we had together, in person, at The Canadian Neurovascular Health conferences or at our home for Matt's filming of Living Proof, were highlights in my advocacy work.

I can think of no better tribute to the Embry Family at this time, than to share their good news of hope and healing---by contributing to their charity, by downloading the Best Bet Cookbook,  or by watching, or rewatching, Matt's beautifully made documentary film, Living Proof https://www.seelivingproof.com

Please join me in lifting the entire Embry family up in prayer and intention, however you practice this in your own life.

As Jeff and I go out to work in the garden today, to harvest greens and soak up the sunshine, we recognize how fortunate we are to have so much, in the midst of global suffering and hardship.  We will say a prayer of gratitude, which includes the gift of the Embry family.  We deeply recognize the importance of family, food, health, love, connection and hope.

All of the things Joan Embry held precious in her own life.

Thank you, Joan.