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

Sunday, February 9, 2014

ISNVD 2014--the big picture

Jeff and I are home from the intense sessions at the fourth annual International Society for Neurovascular Disease (ISNVD) conference.  We both commented that it was like being back in college---the amount of information presented was impressive and challenging, and by the end of the day, our brains were quite literally fried.  We are very thankful to Dr. Michael Dake, the current president of this group, for allowing non-medical folks (I call us the "laity") to sit in on the presentations.  It is very informative for those of us with "skin in the game" to hear where the research is going.

I had a chance to sit down with Dr. Paolo Zamboni and discuss the developments of the past five years.  It was September 2009, when we first met and talked about CCSVI research, at the Bologna conference.  Much has changed since that time, yet one fact remains the same---

We know that the extracranial venous system contributes to neurodegenerative disease, and in many cases, venoplasty to relieve CCSVI can improve neurological symptomology, by increasing cerebral perfusion and cerebrospinal fluid flow.

For those waiting for venoplasty treatment, the progress has been painfully slow, full of delays and frustration.  (The FDA approval of the Hubbard Foundation CCSVI registry is one beacon of good news!)  While many of these delays have seemed like simply a waste of time, some of the delays have helped the researchers understand the larger picture of cerebral hemodynamics--and the skeletal, muscular and truncular venous malformations which may contribute to restricted venous return.

We now know that CCSVI can affect those with Parkinson's and other neurodegenerative diseases.  This is not simply a problem in multiple sclerosis.  The diversity of specialties represented by the conference faculty was indicative of this change.  There were specialists in Alzheimer's research, traumatic brain injury, migraine,  panic attacks, stroke, TIA, and other neurovascular conditions.  All spoke of the vascular connection to their research, and the importance of the venous side of blood flow.  The jugular veins got a lot of attention---something that is a new development, thanks to Dr. Zamboni!

Participants heard research presentations on the cellular level of the endothelium in Alzheimer's disease process, where endothelial dysfunction begins prior to amyloid plaque formation.  Endothelial dysfunction is also implicated in the vascular connection to MS, where an increase of iNOS and a break in the blood brain barrier leads to inflammation and neurodegeneration.

There are still debates as to how to treat CCSVI--whether venoplasty is the best or only way.  I had a few opportunities to discuss the importance of lifestyle with Dr. Paula Grammas.  I first reached out to Dr. Grammas after reading her impressive research on endothelial dysfunction in Alzheimer's Disease.  Dr. Grammas considers the beta amyloid plaques, which have become the only focus of Alzheimer's research, to be a potential symptom of a larger problem--the miscommunication of endothelial cells.  I introduced her to the ISNVD, and was so pleased to hear her give the keynote presentation this year.

Dr. Grammas is a warm and thoughtful woman.  She was a pleasure to talk to. We discussed the anti-angiogenesis drugs that she will be looking at in clinical trials.  But we also discussed "the things we can change" today, in our own lives, without needing a prescription.  There are many known cardiovascular factors which increase our risk for dementia--including smoking, obesity, high cholesterol, inactivity, and stress.  And the best thing we can do for ourselves and our brains is maintain a healthy weight, eat a whole food diet, full of phytonutrients, move every day, not smoke, and reduce stress.  We also talked about the fact that healthy living is not about a "cure" for disease, but a means of prevention of disease progression.  The old adage, "an once of prevention is worth a pound of cure", is being proven in labs around the globe.

It was great to reconnect with friends who are patients and advocates.  The efforts of volunteers like Carol Schumacher and Sharon Richardson cannot be praised enough.  The doctors are always happy to see their patients---Dr. Dake was thrilled to see Jeff doing so well, and to hear him playing his trumpet at the ISNVD Gala.  It was a pleasure to see our Canadian friends--including journalists Avis Favaro and Anne Kingston.

I was thankful to have Jeff with me---for him to see the part of my world and work that has consumed much of my free time during the past five years.  As a friend commented, this research isn't "really his thing."  He is thankful for it, but it hasn't preoccupied him in the same way.  However, Jeff was touched and honored to sit with Dr. Zamboni, to hug and visit with other people with CCSVI, and to meet so many of the doctors who are changing the paradigm in neurovascular research.  I am thankful every day for his renewed energy, health, and our ability to travel together.  As I huffed and puffed, climbing those famous San Francisco hills, struggling to keep up with Jeff on our brisk daily walk...I marvelled at his health, and recommitted myself to helping other people with MS find hope and healing.



  1. Thank you Joan, for everything you do. XX

  2. Perfectly written, "in a nut shell", just what I needed!! Thank you Joan!!

    1. well, I am a nut, Bev...as you know!!! xoxoxo and a warm, Californian hug to you and Greg.

  3. Great summary of complex material. Thanks for all that you do.