Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the auto-immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Thursday, September 10, 2020

MAGNIMS consensus recommendation: Measure brain and spinal atrophy in MS

Readers of this blog have already learned about the importance of monitoring their gray matter.  Volume loss, or the shrinking of tissue, is also referred to as atrophy and neurodegeneration.  I explain this process in more depth here: link  The MRI measurement of atrophy has been proven to be more indicative of MS progression, when compared to white matter lesions.  (The fact that we still use a seventy year old mouse model to measure white matter lesions for MS drug efficacy boggles the mind.)  This paper advises that MS specialists look at other MRI markers to understand how treatments might be impacting loss of tissue and MS progression.

A consortium of international MS experts published this review earlier in the year, right before COVID, and I missed it.  It was not sponsored by any specific drug company.  The MAGNIMS study group (Magnetic Resonance in Imaging in MS) was comprised of MS experts from seven countries.  I highly recommend discussing this research with your doctor, to make sure you understand how your own gray matter is doing.  

link to MAGNIMS study in Nature

The authors discuss lifestyle factors which impact brain volume. I like to call these factors "the things we can change."   There are things we can do today to maintain our gray matter.  The heart brain connection is real, and vascular health impacts our brains.

Many lifestyle factors, including physical activity124, influence estimates of brain volume. A higher level of alcohol intake has been associated with a higher rate of brain atrophy over a 6-year period115 and with a specific pattern of regional involvement of the white matter and grey matter125. A similar effect has been described for cigarette smoking and substance abuse (for example, marijuana use)115,126. Many systemic conditions, such as diabetes, chronic kidney disease, hypertension, obesity and vascular conditions can also accelerate brain atrophy115,127,128.

Please notice the mention of vascular conditions.   All of this is new.

I've written about how Jeff's gray matter atrophy was reversed thanks to vascular and lifestyle intervention.  This post is from 2018 Celebration!   Jeff's good health continues in 2020, and he is still hiking, biking, composing, and active.  He's also down to his high school track star weight (178!) and has built up muscle tone.  He remains my inspiration.  Our goal, God willing, is to stay healthy and active, and live to see the end of this pandemic.  We work on managing the things we can change--by eating whole foods, moving every day, getting sunshine, staying connected to family, praying, meditating, making music, laughing, helping others, and letting go of the factors beyond our control.  I've mentioned the serenity prayer before.  link Written in the trying 1930s by Reinhold Niebuhr, American theologian, it is a reminder to take each day at a time, especially as we face difficult times. 

Here is to getting through this- with renewed health-- physically, emotionally, spiritually.

with love from smokey California,


Thursday, August 6, 2020

Living in a post truth world

Hello dear readers,

I hope and pray 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, hoping and praying that you've been able to stay sane and somewhat healthy, safe at home.

Jeff and I remain well.  We stay at home and 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 well.  We are in touch with our family via Facetime and phone calls.  Work and social interactions now happen online or on Zoom.  We get outside every day for exercise, recreation or yard work, while maintaining social distancing and wearing our masks.    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.  And I keep coming back to the importance of telling the truth.

So much of what we hear and read today is about spinning a 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 narrative. 

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.  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 populist rhetoric I find so abhorrent today.  I have spun a narrative, 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

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 an incredible 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. 
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 pilot.  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,

Tuesday, April 7, 2020

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.
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:

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!!!