2019 UPDATE: 12 years since dx. Continued healing of lesions on MRI. No new lesions. Gray matter structures are all healthy and normal. We're a couple years older, but this post remains relevent today. Be well.
2017 marks the 10 year anniversary of Jeff's MS diagnosis.
Today, at age 53, Jeff is conducting concerts around the world, back to performing as a jazz trumpeter, writing scores for films and TV shows, composing commissions for worldwide orchestras, ballet companies and choirs. He can still jog, work full days, and he gets around just fine. Most days, he forgets he even has MS. We are thankful, grateful and astounded.
But, you quickly say... Jeff is an outlier, a very blessed anomaly and surely his healing is anecdotal. MS is different for every one, and Jeff was fortunate to get a "mild" course of MS.
You may well be right, and we can accept that. (Although we don't think over 20 lesions on the brain and spine and a loss of mobility was "mild" and neither does his neurologist.) I do believe we've been blessed, but I'd also like to humbly suggest that maybe Jeff's miracle recovery might be available to others--not all--but to some with MS.
In 2007, I began following the bread crumb trail. The first crumbs were Jeff's serum results at diagnosis. His blood was hypercoagulated, he had high liver enzymes and blood spots (petechiae) on his shins. He was not a healthy guy, even aside from his MS. He was about 15 pounds overweight, had not been exercising or moving much from his desk chair. He had trouble walking after his first MS flare, as his left side was numb and he couldn't balance. He spent most of the day in bed, as he had overwhelming fatigue. He ate a lot of cheese, dairy, processed meats, sugary sweets and drank coffee and diet Dr. Pepper. He didn't get outside or see the sun. He was depressed and not well. And I was desperate to help him. I prayed constantly.
I saw a connection between Jeff's blood results, his poor health and his MS diagnosis. I believed it was a problem with his vascular system. I went to the library, found books by Dr. Swank and others, and read more and more published research online. I saw that modern researchers had found a link between endothelial cells (lining all 60,000 miles of our vascular and lymph systems) and the breakdown of the blood brain barrier in MS. I also learned about the connection between heart health and brain health. And I created the Endothelial Health Program for Jeff, to address these issues.
Let me be honest here-- I truly pissed off my husband---because I changed his life and (at first) he really didn't like it. I cleaned out our kitchen, began serving only whole, organic foods, got rid of junk and processed food and soft drinks, grains, sugar and dairy, and made him get on the elliptical machine and back outside. I began corresponding with a cardiovascular specialist at Stanford University, and shared my program with him. He thought it made sense and asked me to stay in touch. I would soon send this doctor research from Italy; Dr. Paolo Zamboni's study on CCSVI in MS. Jeff would be treated with venoplasty by his colleague at Stanford in 2009, and the benefit from that procedure has been profound and long-lasting. Jeff's gray matter atrophy has reversed on MRI, his gray matter is normal, his lesions have shrunk, and his MS is in remission.
Life has gone on. I've tried, along with hundreds of other advocates, to help others receive venoplasty treatment and to spread the word on the vascular connection to MS. We've had some success, although not as much as Jeff and I had hoped. Powerful immune ablating drugs continue to get the money and press, and I honestly don't think this will ever change. Money is our God in the US and other developed, industrialized nations. We worship authoritative, powerful men with large bank accounts. We give corporations our trust and pledge allegience to them, hoping we might have some of that money, some of their power, some of their knowledge. But it's a sham. We are only consumers and customers to them. They take advantage of our fear. They want us to buy their wares for life.
Each of us is responsible for our own health, our own lives, our own souls. No powerful, authoritative man will ever save us. It is only in doing the small, imperceptable things for ourselves and each other, that we will be helped. The little kindnesses, the home cooked meals, the sunshiny walks with our family, the trips to the gym or physical therapy, the hugs and prayers and affirmations. Stress reduction and good sleep. The support of community. Positive, kind dialogue and the conscious choice to avoid cruelty. Real and meaningful face to face relationships. Forgiveness and love. This is how we heal.
I'll turn 55 this year, and I have selfishly and whole-heartedly enjoyed the recent focusing on my own health, my own family, my own voice. Returning to singing on stage has been a dream come true. Our son is engaged to be married next year (!!!), I'll be performing with Jeff in Europe this spring, I've got other missions to fulfill. Jeff and I are enjoying our bonus round. Life is really, really short. We don't know what tomorrow may bring, but today is pretty good.
There are amazing new resources available today for people with MS. Dr. George Jelinek, Dr. Terry Wahls, Matt and Ashton Embry and others have medical degrees, books, lectures, podcasts---they will continue to get good info out there. They've got real skin in this game. The ISNVD is on the trail, they are going to publish and change our understanding of MS and other diseases of neurodegeneration. Results from Italy and Australia placebo controlled venoplasty trials are coming later this year, Marie Rhodes' book is still the best publication on CCSVI available. CCSVI Alliance website is still up and chock full of good info. The Annette Funicello Research Fund is supporting great studies, The Canadian Neurovascular Society is also bringing this research forward, Dr. Franz Schelling's work is all still true. The Gladstone Institute is on the right path with the study of coagulation and MS. Dr. Jony Kipnis will unlock the brain's immune system. Stem cells will eventually be the answer for neurodegenerative disease repair. I'll keep this blog online as long as I'm able. And I may even write up a post now and then, if I see something of value. But honestly, I think it's all here already. Please read and share the info I've blogged, whatever you find resonates and is applicable in your own life. And if it hasn't helped you, I'm sorry---and I truly hope you find your own answers.
Thank you for every kind word, every message of support.
Come see us if we perform in your town! I'd love to get a hug.
From Rindfliesch's discovery of the central vessel in the MS lesion in 1863, to CCSVI and the CNS lymphatic discovery. 160 years of research on blood flow, CSF, lymph and perfusion of the central nervous system. Because the heart and the brain are connected.
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 26, 2017
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