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, February 13, 2020

Thank you, Anne.

Dear Anne,

I love and admire you.  I hope you knew that.  I think I told you, but now I'm not sure.  I love your boundless energy, your keen sense of justice, your brilliant mind, your ability to translate difficult concepts into language we can all understand.  I admire how much you care about other human beings, and advocate for the sick, the poor, the marginalized, those without a voice.  I relish reading anything you write.  I will continue to read and re-read your book and articles and e-mails.  I so wish there would be more.
Link to Macleans articles
Link to "The Meaning of Wife"

I simply can't imagine the world without your clarion voice, your wit, your tenacity.  I can't imagine how your closest friends and family will cope with the loss of your presence in their lives.  How they will deal with your much too soon, unbearable passing.   I just heard from your friend, in a grief stricken voice mail (oh, I've had to make those phone calls when my brother died, and it's simply unbearable.) I do remember meeting him in Rochester with you, when you came from Toronto to see us and talk to us about Jeff's CCSVI treatment.  It was such a joyous time for us all--it felt like rebirth.  Springtime budding in Rochester, music, good food, laughter, hope.

And there have been the conferences together, e-mails, and phone calls.  Difficult times full of controversy and medicalese and renewed and then dashed hopes.  The last two years, I was so frustrated, and I know you knew that.  I lashed out at you, angry that you were simply writing the truth.  I felt betrayed, and we talked, and you forgave me.  I'm so glad we made amends.  Just as I'm glad that I did the same with my brother, before I lost him.  You inspired me to keep writing, to not give up. But you also knew that, for my own sanity, I had to step back.

You dug in and included the history of the vascular connection to MS in your writing about CCSVI.  Everything you wrote was always sourced with links to publications, quotes from doctors, a balanced approach to telling the story.  link  link  link

Thank you for interviewing Dr. Michal Schwartz and for getting her research out into the larger public.  link   You knew it was her research that first inspired me to look at immune cells as protective for the brain, and we bonded over the fact that a brilliant woman had, no surprise, been dismissed by so many powerful men for questioning dogma.  link 
And over time, her theory is being proven, again and again. Someday, boosting specific immune cells and combining lifestyle and vascular intervention may well end neurodegenerative disease.  
link to Professor Schwartz's research

You called us the "impatient patients"....which was simply a perfect description of the frustration that grew out of CCSVI clinical trials halted or mangled, and the influence of pharma.  But many of us  knew it wasn't over.   link

Which is why it's hard for me to grasp your passing.  There's still more to the story, many more truths for you to write.  So much more.  Dammit.

Thank you for everything.  I learned so much from you, Anne.
Love to all those who loved you.
May we advocate for others, in your memory.

May we heed "the urgent call for compassion as the last-gasp remedy for systems on the brink—politics, health care, civil society, the planet itself." (written, as only you could say it, Anne.)


Joan










Sunday, February 2, 2020

Endothelial Health goes mainstream...

.... and you can stream a new documentary to learn more.

Thanks to my son and daughter in law for the head's up on the documentary, THE GAME CHANGERS    https://gamechangersmovie.com

Presented by James Cameron, Arnold Schwarzenegger, and Jackie Chan  — a revolutionary new film about optimum health and strength.  You can view it now on Netflix.

My family told me I needed to watch it, because it was documenting what I have been harping on for years.  My son saw me change his Dad's diet and lifestyle, and has heard me discussing this topic for over twelve years.   Mainly, the importance of endothelial health, and how eating plants full of anti-oxidants and phytonutrients increases nitric oxide availability, helps endothelial cells, and increases blood flow to all of our body, most importantly our brains.   

Nutrition is a very large componant of my program, which also includes physical activity, good sleep, sunshine, meditation, probiotics, minerals, smoking cessation, and laughter.   Each and every one of these measures is known to increase nitric oxide, which relaxes our blood vessels and increases blood flow.  This is how we can combat the hypoperfusion, or slowed and restricted cerebral bloodflow, seen in MS, Alzheimer's, dementia and Parkinson's.  These are things we can do for ourselves.  

This new movie is focused on elite athletes who utilize plant-based diets to achieve optimum strength and endurance.  And while I do not specifically advocate a vegan lifestyle in The Endothelial Health Program,   I suggest that people with MS favor whole foods and plants, to increase nitric oxide. (There are conflicting views on animal protein within the field of experts, and I DO NOT go into the weeds on this topic.)  My approach has always been to look at positive environmental measures people with MS can take to feel better.   And eating more plants will help accomplish that goal.

In the film, Dr. James Vogel, co-chair of the NFL subcommittee on Cardiovascular Health, discusses the importance of eating plants to increase available nitric oxide and increase blood flow.  He even speaks of the endothelium, and uses the image shown below. (YES!)

Truly, The Endothelial Program works.  Jeff remains on it.   He's still jogging, biking, writing music, traveling, living life, with no MS progression, no new lesions, and a reversal of his gray matter atrophy.  His most recent MRI shows continued healing of his brain, now 13 years since his diagnosis.

With the help of our vegan son and daughter in law, we have learned how to incorporate even more plants into our diet, boosting nitric oxide and reducing inflammatory foods.   Like jackfruit (google it!), legumes, tempeh, and lots more greens.

My hope for all of us, as we begin a new decade, is that we can take care of ourselves, our families, our communities, and discover that there are many things we can do to improve our own health and the health of our planet.

Be well,

Joan 


Monday, January 20, 2020

China continues to lead the research

New research from neurosurgeons in Beijing looks at how the veins impact brain health.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6932895/

As most of you know by now, the arterial side, or blood flow delivery, receives all of the research.  We have scans for the carotid arteries which are routinely given for stroke and cognitive dysfunction in aging populations.  But this new resarch looked specifically at how jugular venous stenosis impacted cerebral perfusion, or the amount of blood flow exiting the brain.

It has seemed obvious to most of us that consideration of venous health must be determined in diseases of neurodegeneration.  Sadly, this is not so in western neurology.  North American and European neurology remains content to ignore venous health.

Hypoperfusion, or slowed blood flow, remains a constant finding in people with multiple sclerosis.
http://www.ajnr.org/content/early/2018/01/11/ajnr.A5504
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6416892/


In this new research, Chinese neurologists studied those with cerebral venous stenosis (CVS) as well as patients with arterial stenosis (CAS) and those who had both arterial and venous stenosis (CAVS)

From the publication:

Cerebral venous stenosis (CVS) mainly results from extracranial venostenosis (internal jugular vein stenosis, IJVS) and intracranial venostenosis (cerebral venous sinus stenosis, CVSS) []. Previous publications have described its typical clinical manifestations such as headache, noise, visual impair, sleep disorder and dysphrenia []. It can be confirmed by magnetic resonance venography (MRV), computed tomography venography (CTV) and digital subtraction venography (DSV) generally, however, the presentations of brain tissue and perfusion-metabolism status are not fully known. Furthermore, since covered by CAS, some venous stenosis may be misdiagnosed. As for these patients, only treating on arterial stenosis is far from adequate, in contrast, restoring the patency of venous outflow is the key to relieve the refractory neurological symptoms. The aim of this study is to describe the clinical characteristics and imaging findings in CAS, CVS and CAVS, in attempt to further aid the differentiation of these disorders in the clinical settings.

Cerebral arterial stenosis (CAS) plays an important role in chronic cerebral circulation insufficiency (CCCI) []. Persistent reduced cerebral blood volume and flow cause ischemia and hypoxia in the brain tissue, leading to various brain dysfunctions []. Chronic cerebrospinal venous insufficiency (CCSVI) has also been confirmed to contribute to neurological deficits and impose a significant impact on cerebral arterial circulation to some extent []. In theory, CCSVI plays a causative role in pathogenesis of CCCI as well. Venous outflow disturbance may raise the pressure in arterio-venous anastomoses and affect the blood flow (CBF) and volume (CBV) in the arterial system subsequently []. Advanced neuroimaging can confirm vasculopathic diagnoses, but clinicians often neglect to further explore the disorders as they related to venous vasculopathy. This leaves many patients with rather severe venous stenosis-related ailment untreated and in a great deal of suffering.

And what did they find?

Neurological impairments including sleep disturbance, hearing disorder, visual disorder, headache, tinnitus, tinnitus cerebri, dry or puffy eyes, neck discomfort, dizziness, anxiety or depression and nausea or vomiting were commonly seen in CVS and CAVS group. The incidences of subjective memory decline were almost same among three groups.

It is now eleven years since Jeff was treated for his severe jugular venous stenosis.  His previous symptoms of headache, fatigue, heat intolerence, dizziness, sleep disturbance, and sleep apnea have remained resolved.  He is able to jog, work, engage in outdoor activities, travel, live life.  He has had no further white matter lesions, and his gray matter atrophy has reversed.  His brain continues to heal, as many lesions have shrunk or disappeared.  For this, we are thankful.

I am also thankful that the ISNVD continues to study venous stenosis and MS diagnoses.  I am thankful for the Chinese researchers who are helping their patients, and looking at how treating venous stenosis heals the brain. 
Here are a few of their publications on treating jugular venous stenosis, and outcomes.
https://journals.sagepub.com/doi/10.1177/0300060519860678
http://www.ijcem.com/files/ijcem0042381.pdf
https://onlinelibrary.wiley.com/doi/full/10.1111/cns.12859

I am not hopeful for North American and European research, however, as the MS drug companies are forecast to be a $40 billion dollar industry by 2026.   link

Stay well, keep moving, get UV rays, eat whole foods, engage in community, remain positive and keep your eyes on the horizon.

Joan

Here are some of the images from the Chinese publication



Here is my husband's MRV from Stanford 5/09, prior to his stenting treatment to open his jugular veins.  Notice the curly collateral veins running alongside the pinched jugulars.  This is what venous stenosis looks like.  He did not have an MRV after treatment, but he did have his cerebral blood flow transit time measured and his hypoperfusion was reversed.