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

Showing posts with label Matt Embry. Show all posts
Showing posts with label Matt Embry. Show all posts

Tuesday, September 8, 2015

Celebration!

UPDATE 2018---Jeff remains MS progression free eleven years after diagnosis, with no new lesions, and a continuation of healing.


Our family has some great news to share!  Jeff's new MRI shows a continued healing of his brain and spine.  His cervical lesions are now "less prominent" than they were on his last MRI in 2012, an indication of remyelination.   He has no new white matter lesions, and, most importantly, his gray matter structures are all healthy and normal, with no signs of atrophy.  This MRI shows actual healing---not placebo---when compared to Jeff's very first MRI in 2007, which showed gray matter atrophy and enhancing lesions on the spine and brain.

It has been 8 1/2 years since Jeff's MS diagnosis, and 6 years since his venoplasty treatment at Stanford.  Jeff remains physically and mentally active, and has stayed on the Endothelial Health Program.  He has had no MS progression.  We do not take Jeff's health for granted.  We are very thankful for the wonderful CCSVI community and researchers, and we consider this blessing of good health something which we are responsible to share. We want to stay involved in the neurovascular community at large, because we remain convinced that it is essential to look at the brain's blood, cerebrospinal fluid and lymphatic flow when evaluating treatments.  

MS is an inflammatory disease in which neurodegeneration and gray matter loss is the only correlate to disease progression.  The autoimmune hypothesis remains unproven.  All of the current drug treatments---now, a $20 billion a year industry--- are based on the EAE mouse model of MS, which relies on stopping immune activation in the central nervous system, and uses white matter lesions to measure "success" of a disease modifying med.  None of these meds have been shown to stop MS disease progression.

New research on the brain continues to come in, and points to the brain's reliance on the major draining veins to maintain gray matter structures.  MS specialists remain intransigent;  by refusing to consider how slowed venous flow and endothelial dysfunction might be affecting their patients' brain health.

Yet the evidence continues.  Outspoken advocates who have treated their own MS with cardiovascular means of diet, exercise and lifestyle changes continue to speak out and gain followers.  These individuals are pointing the way to health and healing for the MS brain.

Dr. Terry Wahls  http://terrywahls.com

Matt Embry  http://www.mshope.com

Dr. George Jelinek  http://www.overcomingmultiplesclerosis.org

Jeff Beal  http://ccsvi.org/index.php/helping-myself/endothelial-health


Even though each program has specific dietary differences (paleo, anti-allergen, low fat)---it's important to notice the lifestyle measures which these programs SHARE.

1. Healthy, whole foods, with plenty of colorful organic fruits and vegetables
2. Removal of processed foods and transfats
3. Smoking cessation
4. Increased intake of Vitamin D with UV ray exposure and supplementation
5. Regular cardiovascular exercise
6. Meditation or some form of stress relief
7. Consideration of the blood, CSF and lymphatic flow to and from the brain
8. Good quality and regular sleep
9. Maintaining a healthy weight
10. Addressing microbiome health with probiotics

There are things that can be done today, to help the brain heal.  Will these measures "cure" or "end" MS?  None of us know that for sure.  There may well be genetic factors which contribute to highly progressive MS, that cannot be completely addressed by these programs.  But we now have years and years of evidence compiling---Matt Embry is out the furthest with 20 years of no disease activity, George Jelinek is at 16 years, and Terry Wahls and Jeff are at eight years.

These numbers are impressive, and they matter.
Please be encouraged (which literally means, to give heart!!!)
The heart and brain are connected, and it's possible to take care of them.
You can do it, one day at a time,

Joan and Jeff




Saturday, February 21, 2015

Still skiing, Dr. Miller

This month is the 8 year anniversary of Jeff's diagnosis with Multiple Sclerosis.  (Although we now believe Jeff has had MS since childhood, when he lost his peripheral vision.  Throughout his life, he would exhibit other common MS symptoms, but he wasn't officially diagnosed until age 43.)

We are happy to share that he remains MS progression free, is still jogging, working full days, traveling the world, composing, performing and conducting,
and yes, Dr. Miller, Jeff is still skiing.

Neurologist Aaron Miller confronted me at the CCSVI Alliance table at the American Academy of Neurology Brain Fair in 2013.  He walked up to our exhibitor's table, looked me in the eye and laughed in my face.  "You can't possibly believe this!"  he sputtered.

I told him that for many, there was a vascular connection to MS.  That my husband had regained his balance and energy and was able to return to walking, then biking, then jogging and eventually skiing.  All thanks to his successful venoplasty treatment which repaired his stenotic dural sinus and jugular veins and his implementation of the endothelial health program.  Dr. Miller guffawed,  "That's ridiculous!   There's nothing to the vascular business.  Veins?  We've discredited it all.  Well, let's hope he keeps skiing! Ha!!"

He smirked at me as he walked back into the conference, where he was presenting on the latest oral drugs for MS.

"The future has never looked brighter for [people with] MS," says Aaron Miller, M.D., medical director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai Medical Center in New York City. And, he adds, "I anticipate that in the [near future], we'll have perhaps another four new multiple sclerosis drug treatments."
http://www.healthcommunities.com/multiple-sclerosis/treatment.shtml

Dr. Miller would end up backing away from one of the new oral medicines, Gilenya--after there were six deaths linked to the drug.

The deaths have “made me a little more cautious,” Aaron Miller, chief medical officer of the U.S. National Multiple Sclerosis Society and a medical director at New York’s Mount Sinai Hospital, told Bloomberg News. “I am not somebody who has recommended Gilenya as a first-line drug prior to these reports, and I’m still not recommending it as a first-line drug until we get more data,” Dr. Miller added. Miller treats about 800 patients and has prescribed Gilenya to about 30.
http://www.newsinferno.com/doctors-back-off-gilenya-amid-safety-woes/

Dr. Miller was ready to embrace these new oral MS medicines, which he admits were lacking data, and promote them at conferences and prescribe them to his patients. Yet he deemed my husband's pursuit of vascular health and repair of a venous malformation "ridiculous."

Are MS specialists really concerned about their patients' health?  If so, they might want to consider the following:

Matt Embry is now 20 years past his MS diagnosis, with no progression.  He still runs marathons and works full time.  He's offering his program, called MS Hope, for free.  He has a website and Facebook page, where the program his father, Dr. Ashton Embry, compiled for him using peer-reviewed MS research, is now offering continued hope and health to those with MS.
http://www.mshope.com

Matt, Dr. Terry Wahls, Dr. George Jelinek and many others are speaking out about how nutrition, lifestyle, exercise, UV rays, vitamin D and smoking cessation can help people with MS maintain health and mobility.  And they are publishing their results in medical journals.
http://terrywahls.com
http://www.overcomingmultiplesclerosis.org

The International Society for Neurovascular Diseases will meet in March to discuss the ongoing studies on cerebral perfusion and CCSVI.
http://www.isnvd.org/d/Napoli

The keynote speaker for the ISNVD conference is Dr. Mat Daemen, Professor at the Academic Medical Center in Amsterdam and Project Leader at the Cardiovascular Research Institute in the Netherlands.  His recent publication,  “The Heart and the brain: an intimate and underestimated relation” discusses the important relationship between blood flow and the brain, and the lack of understanding of this connection, due to the non-collaborative and myopic approach of medical research.

The apparent lack of appreciation of the link between cardiac and brain (dys)function is probably due to monodisciplinary approach by cardiologists and neurologists and by the reductionist approach of modern medical research.  
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547419/

Despite the MS treatment machine and pharmaceutical companies' best efforts, the vascular and environmental research continues.  Patients are finding healing and sharing with others.  People are donating money to directly fund the research which interests them and are participating in this grass roots movement.    There are things that people with MS can do for themselves today, which will make a difference in their disease progression tomorrow.

If I was an MS doctor and someone told me that their 50 year old husband with MS had returned to skiing after having trouble walking and balancing, I might sit down with them and learn more.
Not laugh in their face and deride them, wishing them ill.

If I was an MS Society and a young man from my country began sharing his program for health and healing after having had MS for 20 years, I might ask him to speak to people with MS and help them.  Not consider his information a threat.

If I was an MS researcher, and a world-reknowned vascular specialist (who was collaborating with NASA) could show me how venous reflux was impacting the brains of people with MS, I might work with him.  Not spend millions on studies ignoring his protocol, just to prove this condition didn't exist.

But I am none of those things.
I've got no money in this game.  Just skin, and skis.

Joan