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, January 24, 2019

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 



Wednesday, January 2, 2019

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







Saturday, May 5, 2018

Hope in China-- a new clinical trial

Over the past couple of years, I have been following a group of Chinese researchers from the Beijing Institute for Brain Disorders.   This group is using stents to repair slowed jugular venous flow, reduce collateral veins, improve intracranial hypertension and cerebral perfusion in a variety of patients.

My interest in this area comes from the fact that my husband was treated this same way in 2009.  His benefits from jugular stenting continue, as he has had no new white matter lesions.  He sleeps soundly, dreams, and wakes refreshed.  He had a huge reduction in headache.  His visual loss has ceased.  His fatigue has been reduced.  His gray matter atrophy has been reversed.  He has had no MS progression in eleven years.
Here is the publication on his treatment at Stanford
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164629/

The Beijing Institute for Brain Disorders was founded in 2012, in the hopes of using new technologies to prevent and repair neurological disorders.  The group of neurosurgeons have published  that jugular venous stenting is a safe and effective procedure, which is helping a variety of patients with neurological disorders.

They have seen intracranial hypertension, headache, visual disturbances, and tinnitus improved in 15 patients who had stents implanted in their jugular veins.
https://www.ncbi.nlm.nih.gov/pubmed/29114973

Because of their preliminary study, this group is now undertaking a randomized clinical trial in Beijng with 60 participants, utilizing stents in jugular veins of patients with jugular vein stenosis.  link to clinical trial

Here is what they will be looking at over the course of one year.  (Please notice how the secondary outcome measures are similar to measures used in Multiple Sclerosis clinical trials--and similar to my own husband's benefits from treatment.)

            ++++++++++++++++++++++++++++++++++++++++++
Primary Outcome Measures  
Correction of internal jugular vein stenosis (IJVS) and abnormal collateral veins 
[Time Frame: baseline, 1, 6 and 12 months ]
The status of internal jugular vein blood flow and collateral veins will be evaluated by imaging modalities, mainly including: Jugular Vein Doppler Ultrasound, Magnetic Resonance Venography (MRV), Computed Tomography Venography (CTV) and Digital Subtraction Angiography (DSA)

Secondary Outcome Measures  :
The evaluation of cerebral spinal fluid (CSF) pressure 
[Time Frame: baseline, immediately post-stenting, within 1 month ]
CSF pressure will be assessed by lumbar puncture

The evaluation of headache 
[Time Frame: baseline, within 1, 6 and 12 months ]
The intensity of headache will be assessed with the Headache Impact Test-6 (HIT-6  The evaluation of tinnitus [ Time Frame: baseline, within 1, 6 and 12 months ]
The severity of tinnitus will be assessed by the Tinnitus Handicap Inventory Questionnaire (THIQ)

The evaluation of the severity of papilledema and other ophthalmological conditions 
[ Time Frame: baseline, within 1, 6 and 12 months ]
The severity of papilledema will be assessed based on Frisén papilledema grade (FPG) criteria; the assessment of other ophthalmological conditions including visual acuity, visual field, and fundus etc. will be based on visual acuity chart, visual fields picture, and optical coherence tomography (OCT) etc.

Changes in cerebral white matter (WM) 
[ Time Frame: baseline, within 12 months ]
The characteristics of WM will be evaluated by Magnetic Resonance Imaging (MRI).

The evaluation of cognitive function [ Time Frame: baseline, within 12 months ]
Cognitive function will be assessed with the Mini-Mental State Examination (MMSE), the Montreal Cognitive Assessment (MoCA) and/or the Modified Telephone Interview for Cognitive Status (TICS-M).

The evaluation of mental status [ Time Frame: baseline, within 12 months ]
Mental status will be assessed with the Hospital Anxiety and Depression Scale (HADS). The HADS score ranges between 0 and 21 for either anxiety or depression. A cut-off point of 8/21 is indicated for anxiety or depression.

The evaluation of sleeping status [ Time Frame: baseline, within 12 months ]
Sleeping status will be assessed with the Pittsburgh Sleep Quality Index (PSQI) and/or the Athens Insomnia Scale (AIS). The PSQI score provides an overall score ranging from 0 to 21, where a cut-off score of ≤5 denotes a healthier sleep quality. The AIS score provides an overall score ranging from 0 to 24, where a cut-off score of <6 denotes a healthier sleep quality.

The extent of disability or dependence in the daily activities 
[ Time Frame: baseline, within 12 months ]
The extent of disability will be assessed by the modified Rankin Scale (mRS). (Score 0-no symptoms; score 1-no significant disability; score 2-slight disability; score 3-moderate disability; score 4-moderately severe disability; score 5-severe disability; score 6-dead.)

                             +++++++++++++++++++++++++++++++++++++++++
Finally, here is a brand new published review from this same group, 
"Understanding jugular venous outflow disturbance."
link

I have read the full paper, and am confidant that this research group knows what they are doing, what they are looking for, and what the stakes are.  By removing Multiple Sclerosis from the equation, they will be able to proceed, without the interference of pharmaceutical interest--which has daunted the study of CCSVI.

Thanks to the Beijing Institute for Brain Disorders for taking on this very important study.

Joan