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

Friday, March 27, 2015

Changing the things we can change

It's springtime.  Hopefully, you're beginning to notice the change of season where you live.  Days are a bit longer, temperatures are rising, the sun is more visible.  Buds appear on trees and flowers, chirping birds return to nest, colors become more vibrant.  The air is scented with blossoms, people smile more,  take off the layers of clothing, say hello.  It just feels like a fresh start.

Springtime always brings a sense of new beginnings for me.  Much more so than New Year's resolutions, in springtime I find myself resolving to move more, eat better, take care of myself with more regularity.  I also find myself willingly cleaning out the garage and closets.  There's a reason why we call it spring cleaning, right?  Who wants to do that in the winter?  I open up windows, crank the tunes, and get rid of the clutter.  As the season changes, so do we.  Change is good.

The "serenity prayer" is all about change.  It is attributed to American theologian Rienhold Neibuhr and has become familiar to most of us.  Alcoholics Anonymous and other 12 step programs use it.  The prayer contains the following lines, which have become a mantra and daily meditation for me, as I pull weeds, garden or walk the dog.

Give me the serenity to accept what cannot be changed,
The courage to change what can be changed,
and the wisdom to know the one from the other.

We all know that there are certain things we simply can't change.  Like how tall we are, who are parents are, and what happened in the past.  I can't change the fact that my son is getting older and living on his own now.  My nest is empty,  and that's a reality.  But I can choose how I respond to the quieter house and my pangs of missing my son.  I can turn it into gratitude, for the fact he is becoming the responsible adult I've always longed for him to be.   We all have the ability to change how we perceive today and our own personal challenges.  How we view about the past, how we relate to our family and others.  And how we take care of ourselves.

More and more researchers are publishing on the fact that MS is a disease which is greatly affected by "environmental factors".  This is just the scientific way of saying "how we live."  This doesn't mean that people give themselves MS according to their lifestyle.  Absolutely not.  I really want to reiterate this.  You don't give yourself MS.   This is not about blaming.  There are genetic factors we do not yet fully understand, which cannot be changed.

But this new resarch DOES mean that changing the things you can may help you feel better, slow progression, and in some instances, reverse MS damage.  Environmental factors can really make a difference.

Recent research also shows that people with MS have much higher levels of endothelial dysfunction than normal people.  Just a scientific way of saying that there are blood markers which show that the cells lining the blood vessels in people with MS are damaged and dying, and are not allowing blood to flow in a normal, healthy way.

So, why does endothelial dysfunction matter in MS?  It's been linked to slower cerebral blood flow (called hypoperfusion) and less oxygen feeding the brain.  Endothelial dysfunction causes damage to the central nervous system.

We need healthy endothelial cells to regulate healthy blood flow to the brain.

Here's a list of things that, in most instances, can be changed, to help endothelial cells heal and increase cerebral blood flow.  Please read this list and take it in without feeling accused.  Take it in as it is intended, in a nurturing,  (OK, maybe a bit nagging), yet encouraging way.

1. Exercise.  Moving the body creates "shear stress' by making the heart pump blood more strongly.  This flow over endothelial cells heals them.  Inactivity kills endothelial cells.  Whatever you can do, just do it!

2. Keeping extra weight off.  Obesity is linked to endothelial dysfunction and less cerebral bloodflow.

3. Reducing stress.  Cortisol is a known endothelial cell destroyer.

4. Reducing intake of simple sugars and glucose.  Sugar kills endothelial cells.

5.  Increasing UV rays exposure and vitamin D levels.

6.  Increasing nutrients from plants.  This will increase antioxidants and phytonutrients, which heal endothelial cells.

7.  Quitting smoking.  Cigarette smoke destroys endothelial cells.

It's not a coicidence that all of these environmental factors which harm endothelial cells are also linked to faster progression of MS.  And these are the environmental factors most mentioned in recent MS studies.

Are there things on this list you can change?
Please share with me in the comments---I want to know and maybe encourage you.

Happy Spring cleaning.  
For your closets, and your endothelium and your mind!   :)


Saturday, March 21, 2015

My brother Jason

Every single time someone casually suggests, in person or via the internet, that I should go back to medical school, I imagine my brother Jason laughing riotously.  Because he actually did go back to medical school, after establishing himself in another career, and I saw, first hand, how hard he worked.  He would say,  "Go for it, Joan!  Ha!!  Good luck with the MCATs!!"

Jason and I share a birthday, March 23rd.  This year, he would be 48,  and I'll turn 53 on Monday.  But without him.   I got to be his big sister for forty wonderful years.  It wasn't long enough.

Jason died in a single vehicle motorcycle accident in September, 2007.  Six months after my husband Jeff was diagnosed with multiple sclerosis.  That was the hardest year of my life.  But I write today to honor the incredible things Jason did during his too short life and to leave a living memorial for my brilliant, loving brother.  Because anything I do to encourage medical research is dedicated to his memory.  And I want my readers to know him.  It also might help explain my passion (obsession?) for medical advances in brain health,  and my desire to educate and help others heal.

In the early nineties, Jason was living in Florida after college, working as a head chef in a very busy kitchen at a successful restaurant.   Jason had a grand mal seizure while standing at the giant commercial stove, probably barking orders at his sous chef.  He fell forward, hit his head and collapsed on the floor.  911 was quickly called, and Jason was taken by ambulance to the nearest hospital.  He was stabilized, but he was in a coma.  His girlfriend Becky called us to let us know, and my family convened from around the country to be with Jason.  I don't remember much from that trip.  It was too hard to see him as he was in the hospital. There were bedside tears, and lots of talking to Jason.  We were all encouraging him to hang in there, but maybe he could wake up or open his eyes?  We told jokes, we rubbed his arms and held his hand.  His girlfriend, who was in nursing school at the time, half-jokingly told him, if you pull through this, we're getting married!  Maybe it was that message, maybe it was the prayers or our presence, but Jason awoke from his coma, groggy and with a headache, after three days.  He didn't remember much of the incident, but he knew two things for sure.  He was marrying Becky, and he was going to go back to school, to learn how to save peoples' lives.  Just as his life had been saved.

Jason soon began as an emergency medical technician.  He was the first call guy, and saw a lot of difficult situations.  Car accidents, gunshot wounds, heart attacks and strokes.  It was a stressful job, and for someone who had just been told he "might" have epilepsy and needed to watch his stress levels, it was wearing.  He eventually decided to go to nursing school,  just like his newlywed bride.  He came out for medical exams and a visit to see us in Los Angeles, and I remember him sitting at my desk, textbooks open, notebook at the ready.  His photographic memory was really helping him get all of the knowledge.  He aced his exams and was a licensed RN in no time.

He worked in hospitals, and ended up finding his calling in nursing homes, where his strong muscular body and gentle loving spirit found their place.  He did the heavy lifting and moving of immobile patients. He would be the one that would sit with the lonely patients.  Those who had been forgotten by family and friends.  He sang to them, made them laugh, touched them and helped them deal with their overwhelming pain and fear.  He saw many people cross over and was the last human touch they would ever feel.   I can only imagine his patients were waiting for him, arms wide open, as he went home.  This image brings me great comfort.

When Jeff was diagnosed with multiple sclerosis, it was Jason I called.  I needed to know what to do, I needed to know what the future would hold for us.  Jason was very candid about the people he had cared for who had MS.  He had made home visits and treated patients with MS in the nursing home.  Jason had moved up in his career and was now working as a nursing home administrator.   He helped us make decisions about Jeff's care, and encouraged me as I began looking into some of the vascular issues I had noted at Jeff's diagnosis.  But he wanted me to be prepared.  He promised me that when things got too tough, he and his new wife Tammie would be there for us.  He even said they would relocate to California, to be Jeff's caregivers, if necessary.  Six months later, my brother Jason was dead.

Still, I know Jason sees Jeff now, and delights in his good health.  We would not need to consider home health care or a nursing home, because Jeff was given the gift of remission and a healing of his brain.  I believe that this was a gift from God.  I know many people rankle at professions of faith, but I'm too old to care anymore.  Heck, I'm turning 53!  I deserve to be able to share my thoughts on faith and prayer.  I understand what "to pray unceasingly" really means.  It was during those tearful, pleading months after Jeff's diagnosis, I was given direction and strength.  I would breathe in help us, breathe out, thank you.  And after losing Jason, I continued on my own, reading everything I could on the history of multiple sclerosis, and on the new, cutting edge research.  I felt a vocation, literally a calling I could hear, to press on, to write what I was learning, and to share how Jeff was doing.  It wasn't always easy going public, but it felt necessary.

Some think that losing a loved one grows easier with time.  But those are people that haven't faced death quite yet.  Those are the platitudes you get on Hallmark cards.  They are intended to be kind and comforting, but they simply aren't true.  You do not stop grieving, you simply learn how to cope.   And the peace you do get, it really does passeth all understanding.  I've heard the death of a loved one best described as losing a limb.  The phantom pain reminds you of what was, before the loss.  You have to just get up and learn how to function again, without the limb.  But you do not forget.

Writing has been part of my healing.  I rejoice in seeing people take in the recommendations of The Endothelial Health Program, or treatment for CCSVI, and finding their health.  Your healing helps my heart heal.  And for those who have not found healing or answers in the vascular connection, we all press on, together.  MS is different for everyone. No one will be left behind.

If you want to give me and Jason the best birthday present ever, please donate your time, energy and money to researchers who desperately need your funding.  They do not have pharmaceutical dollars backing their hard work.  They need all of us to do the heavy lifting.  These volunteer organizations will put your hard earned money to good use.

Jason would give you all a gigantic bear hug, as he did to everyone he met.  And he would tell you all to take care of yourselves, because you matter.
We both say thank you,


Jason, Adam and Joan, siblings in 1969

Joan, Adam and Jason, now with Joan's son in 2001

Wednesday, March 11, 2015

2015 ISNVD Conference Abstracts---research breakdown

The International Society for Neurovascular Disease (ISNVD) will be convening for the 5th Annual Conference in Naples, Italy at the end of March.  Abstracts for the presentations have been made available online here:

There are many more new presenters and international researchers attending this conference.  The ISNVD continues to grow in its membership and influence.

While neuroimmunologists stubbornly insist that there is no connection between diseases of neurodegeneration and circulation, this illustrious group of international researchers is showing that we are only at the beginning of understanding the impact of blood flow on brain health.

Here is my layperson's breakdown of the research abstracts and presentations.

2D and 3D analysis of vessels in the retina and the brain
Prof. Bart ter Haar Romeny, Ph.D.1,2
1Eindhoven University of Technology, Eindhoven, the Netherlands 2Northeastern University, Shenyang, China
This research is using the imaging of blood vessels in the eye's retina to get a picture of how blood is circulating throught the central nervous system. The blood vessels in the retina give an early picture of how brain diseases and breakdown of the blood brain barrier might be developing. Scanning the eye is easier and more cost-effective, as well.

Venous dysfunction and neurodegenerative diseases
Chih-Ping Chung MD PhD
Taipei Veterans General Hospital, National Yang Ming University, Taipei, Taiwan
Dr. Chung and his group have been studying the venous vasculature in relationship to brain disorders for over a decade. He has spoken at a few of the ISNVD conferences now. His new research focuses on how venous abnormalities are linked to white matter changes and how venous drainage impairment leads to dysfunction in Alzheimer's Disease.

Blood storage within the intracranial space and its impact on cerebrospinal fluid dynamics
Clive B Beggs 1, Simon J Shepherd 1, Pietro Cecconi 2 and Maria Marcella Lagana 2Medical Biophysics Laboratory, University of Bradford, Bradford, BD7 1DP, UK  Fondazione Don Carlo Gnocchi ONLUS, IRCCS S. Maria Nascente. Milan, Italy 
This study measured blood flow throughout the cardiac cycle by using MRI to visualize the flow in the necks of 14 healthy adults.  This study found that it is cerebrospinal fluid (CSF) which controls the volume changes inside the brain.  CSF interacts with the cortical veins to facilitate how much blood is stored.  This is an important finding, because any disturbance in venous outflow of blood and CSF will change the blood storage inside the skull, potentially leading to reduced cerebral circulation.

Advances in Treatment Strategies of Extracranial Venous Disease
Hector Ferral, MD
Senior Clinical Educator NorthShore University Health System
Dr. Ferral has been treating people with CCSVI for a few years now. He has also been an attendee and presenter at the ISNVD before. His new presentation will be looking at the technical advances being made in vein measurement and treatment of CCSVI.

Imaging of Brain Microvascular Disorders: lessons from the CADASIL model.
Hugues Chabriat, MD PhD;Department of Neurology, GH Lariboisiere, APHP, INSERM UMRS1161, University Paris 7 Denis Diderot, Paris France.
This research uses imaging to look at how the small vessel disease related to stroke and dementia develops and progresses.

Endothelin- 1 as a potential target for chronic brain hypoperfusion
Jacques De Keyser, MD, PhD, Free University of Brussels (VUB), Department of Neurology, Brussels, Belgium
This study is near and dear to my heart, as it is looking at how ET-1, a marker of endothelial dysfunction, is related to slowed blood flow in the brain, called hypoperfusion. People with MS have much higher levels of ET 1 in their blood than normals, and much slower cerebral blood flow. We also see this marker elevated in a number of neurodegenerative diseases, like Alzheimer's. In this study, the researchers used bosentan, a blood pressure medication, to treat ET 1 levels. This treatment increased cerebral blood flow in pwMS, and lowered ET-1 levels. (But bosentan has side effects, and is not easy on the liver. Much better, in my opinion, to lower ET-1 levels by addressing endothelial dysfunction, through diet, exercise, and lifestyle.)

TBI and hemodynamic changes in the brain

James R. Stone, MD, PhD
This presentation is looking at how traumatic brain injury induces ischemia, or a low-oxygen state, in the brain. TBI also changes cerebral blood flow and can cause a break in the blood brain barrier, igniting the immune system. New research is showing how explosive devices can cause TBI, even without direct physical contact.

Ultrasound contrast imaging of brain hemodynamic and perfusion Marcello Mancini, M.D.
Institute of Biostructure and Bioimage – CNR
Naples, Italy
This presentation will be looking at how new MRI and ultrasound technologies are allowing researchers to view cerebral circulation in MS.  People with MS show signs of hypoxia (low oxygen) injury and thrombosis (small clots) in the small veins of the brain. New technologies are allowing us to see that cerebral transit time is slowed in MS. 

Imaging of the Microvasculature
E. Mark Haacke, PhD 
Dr. Haacke, a presenter at all of the ISNVD conferences, returns this year to discuss how his invention of susceptibility weighted imaging (SWI) and MRA can be used to study the neurovascular system, and clarify the relationship between the venous sytem and CSF.

Update in computational fluid modelling of the brain
Mauro Ursino
This presentation is using mathmatical and computer models to simulate the complex mechanisms affecting cerbral circulation. Using these models shows how postural changes and stenosis in extra cranial arteries and veins can change upstream intercranial circulation.

Clinical Applications of Venous Treatment
Dr. Michael Dake, Stanford University
Dr. Dake, last year's ISNVD president and a founding member, will be presenting on the contributions of 2014 studies which have enhanced understanding of how endovascular and open surgical treatment of venous abnormalities has affected patients with MS, Alzheimer's disease, Parkinson's, POTS and other pathologies.

The Heart Brain Connection
MJ Daemen
Dr. Daemen is the keynote guest speaker. He is a neurocardiologist, a member of a new field of experts who are bringing together an understanding of how the heart and brain affect each other. As a member of the Dutch Heart Foundation, his group is looking at how cardiovascular disease is influencing cognitive function and cerebral circulation.

Paolo Zamboni, Francesco Sisini, Erica Menegatti, Giacomo Gadda, Mirko Tessari, Mauro Gambaccini
Vascular Diseases Center, University of Ferrara, Ferrara, Italy 
Dr. Zamboni's group is using ultrasound in the B mode (brightness mode) to measure the pulse wave in the jugular vein.  The way that the wave form looks is currently used to monitor for heart disease, however Dr. Zamboni's group is using this technique to find CCSVI.

Is there a role for mast cells dependent synthesis of Endothelin-1 in neurodegenerative diseases?
Pedro D’Orléans-Juste-1, Louisane Desbiens, Denis Gris-2
Departments of Pharmacoly-1 and of Pediatrics-2, Faculty of Medicine, Université de Sherbrooke, Sherbrooke, PQ, Canada
We know that levels of ET-1 (a marker of endothelial dysfunction) and mast cells (tissue cells of the immune system) occur in higher levels in people with MS.  This study uses the mouse model of EAE as well as a human isoform to study how mast cells found in the vicinity of spinal lesions are involved in the synthesis of ET-1.

Venous abnormalities in Meniere's Disease
P.M.Bavera; P. Cecconi; D. Alpini; F. Di Berardino 
This presentation will be using slides to show the correlation and differences between Meniere's Disease and MS, in regards to CCSVI imaging.  There are specific characteristics to the venous abnormalities seen in Meniere's.

Advances in Idiopathic Intracranial Hypertension Pathogensis: a Focus on Sinus Venous Stenosis
Roberto De Simone, Angelo Ranieri
Headache Centre  Dpt. of Neurosciences, Reproductive Sciences and Odontostomatology University of Naples “Federico II”
This research is focusing on how stenosis of the venous sinus is related to idiopathic intracranial hypertension (IIH)  There is a feedback loop which appears to occur in this situation.  The venous sinus collapses, cerebrospinal fluid pressure builds, which creates more compression.  Endovascular stenting of the venous sinus is a currently approved treatment to end this cycle of stenosis and hypertension.

In Endothelial function, the glymphatic system and New Drug Development
Endothelial dysfunction in neurodegenerative disease

J. Winny Yun, Emily Stevenson, Seiichi Omura, Fumitaka Sato, Ikuo Tsunoda, Alireza Minagar, Felix Becker, Trevor Castor, Adam Xiao, J. Steven Alexander, LSUHSC-Shreveport Molecular and Cellular Physiology, Microbiology, Virology, Neurology, Shreveport, Louisiana, USA.
Dr. Steven Alexander from LSU returns to the ISNVD to again discuss the endothelium in neurovascular disease. There is a vascular association of specific biomarkers found in MS. This new research is looking for a means to regulate these neurolymphatic markers, to help those with neurovascular diseases.

Fluid Dynamic Influences on Cerebrovascular Endothelial Activation Responses
Dr. Alexander and the LSU team look at how blood flow over endothelial cells affect their health. Laminar shear stress (regular blood flow) over endothelial cells is essential to their function. Disrupted flow causes endothelial cells dysfunction and death. Shear stress alterations could lead to a break down of the endothelial layer in the brain, and create a disturbance in the blood brain barrier and inflammation.

Cardiovascular risk factors and neurodegenerative disorders
Dr. Robert Zivadinov
Buffalo Neuroimaging Analysis Center, Department of Neurology, University at Buffalo, State
This research finds an association with cardiovascular risk factors (smoking, obesity, inactivity, high blood pressure) and MS.  MS patients who had one or more CV risk factors had higher lesions loads and more brain atrophy.


Sunday, March 8, 2015

New research on the Heart-Brain Connection in MS

More and more researchers are looking at the connection between heart health and brain health in Multiple Sclerosis.  It was seven years ago I first contacted cardiovascular and endothelial specialist Dr. John Cooke at Stanford University regarding my theory that serum markers of endothelial dysfunction might be pointing to a connection between the heart and brain in MS.

Dr. Cooke was very kind in responding to me, and said that the research I had compiled appeared to point to an association, but that the MS specialists he talked to at his university asserted the autoimmune nature of the disease, and the lack of connection between the heart and brain health in MS.  At that time, not many researchers considered endothelial dysfunction a component on MS disease progression.  Endothelial dysfunction was a known contributor to heart disease and stroke, however researchers weren't really looking at it in terms of diseases of neurodegeneration.

In fact, when I wrote about the endothelium, most lay people and even some medical people I spoke to had never encountered the word, but thankfully, this is changing. The endothelium is the largest secreting organ in the human body.  It is the layer of cells which line the 60,000 miles of blood vessels that nourish our bodies.  When endothelial cells are damaged and die, we see markers of this in the blood.  Endothelial health is essential to the health of the body's organs and tissues.  The heart and brain included.

Today, more and more MS researchers are considering this connection.

There is about 30% higher risk of the myocardial infarction in patients diagnosed with multiple sclerosis (MS) than in people without MS. Increased risk of cardiovascular disease development positively correlates with levels of serum markers of an endothelial dysfunction, and may give rise to a global cerebral hypoperfusion. It appears that these complications precede progressive loss of axons, which mechanisms are complex and should be linked to a loss of β2 adrenergic receptors on astrocytes of demyelinating lesions. Consequence of this deficiency, the cause of which is not known yet, is a decline in energy metabolism of axons. Moreover, the loss of these receptors is linked to a reduced redistribution of potassium ions by astrocytes, glutamate excitotoxicity and increase of calcium ion concentration in the axon with subsequent activation of necrotic processes. In addition to immunological aspects we should take into account also parameters of the functional state of endothelium when appropriate targeted therapy for patient is considered. http://www.ncbi.nlm.nih.gov/pubmed/25702293

Serum markers of endothelial dysfunction which can be regularly tested are levels of c reactive protein (CrP), hypercoagulation (SED rate, ESR), and fibrinogen or thrombin (d dimer).  In fact, researchers already know that all of these blood markers are found to be high in people with MS.  When Jeff was diagnosed in 2007, his serum numbers for these markers were sky high.  Which is why I started this line of inquiry in the first place.

Another new study has found that people with MS who also had one or more cardiovascular (CV) risk factor (obesity, smoking, inactivity, hypertension) had higher lesion load and more pronounced brain atrophy.

Patients with MS showed increased frequency of smoking (51.7% vs 36.5%, p=0.001) and hypertension (33.9% vs 24.7%, p=0.035) compared with HCs. In total, 49.9% of patients with MS and 36% of HCs showed ≥2 CV risks (p=0.003), while the frequency of ≥3 CV risks was 18.8% in the MS group and 8.6% in the HCs group (p=0.002). In patients with MS, hypertension and heart disease were associated with decreased grey matter (GM) and cortical volumes (p<0.05), while overweight/obesity was associated with increased T1-LV (p<0.39) and smoking with decreased whole brain volume (p=0.049). Increased lateral ventricle volume was associated with heart disease (p=0.029) in CIS.
Patients with MS with one or more CV risks showed increased lesion burden and more advanced brain atrophy.

What does this all mean?  Living a cardiovascularly healthy lifestyle benefits more than the heart.  It can keep the MS brain from atrophying and delay progression.
These are all things that can be done today with nutrition, exercise and lifestyle which will maintain brain health.

Here's the program I created for Jeff, based on the connections I saw all those years ago.  He's still on the program, and it's still helping him keep his serum numbers in the normal zone, with no MS progression.

I hope this might encourage you to learn more about the connection between your heart and brain, and your amazing endothelium!