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
Subscribe to: Post Comments (Atom)
Bless you Joan Sapiro Beal, bless you!!!!!! Many of us would have given up without your shared knowledge, love and compassion for everyone. Go foward into the sun of your own amazing life, you deserve it. You have educated and cried and celebrated with thousands for 10 years....THANK YOU.�� I HOPE TO MEET YOU AGAIN ONE DAY FIR MORE AMAZING AND HEALING HUGS. I WISH FOREVER CONTINUED GREAT HEALTH TO JEFF, ANOTHER AWESOME HUMAN BEING. LOVE Bev and Greg too. I HAVE HOPE.ReplyDelete
Thanks so much, warrior Mom Bev!!!! Love to you and your beautiful Greg. I also have so much hope, and I appreciate your kind, generous spirit and positive energy. Yes, I'd love to see you and Greg again, and share more laughter and tears. Until that day, abundant blessings on you and yours.Delete
Dear Joan...You do not know me, but you have been a great friend to me, andcountless others. I go on research binges to try to learn about advances in knowledge about MS and real life changes that I can make to take control. On one of those on line binges, about 5 yrs into my diagnosis..I discovered thisisms.. and Cheerleader. You became my best resource.. posting, blogging and pasting links for others to follow. Providing cogent plain language translation of research papers and engaging in discussions. You actively campaigned for CCSVI and encouraged those of us who wrote letters and marched and advocated for vascular care for persons with MS. Wow! I did meet you briefly in Vancouver and expressed my admiration and gratitude for your contribution to the MS community. Your intelligence, resourcefulness, and dedication to helping Jeff recover are inspiring. Your generousity in using your time to share with, and educate and encourage others has been an extraordinary gift. This post suggests that you will be focussing on other important aspects of your life,but will keeps some contact with the community. Again I thank you and I wish you and Jeff much joy for many years to come. I look forward to updates.Delete
Thanks so much for checking in and posting those lovely and affirming words, Brightspot!!! I'm glad we got to meet in Vancouver. ThisIsMS was a great resource for me---I'm glad you stumbled on the site, and found worthwhile information. It's been rough watching nothing really change in the mainstream MS treatment approach during the past 10 years--especially with all we've learned about the importance of maintaining gray matter and the heart-brain connection--but I remain optimistic. Keep moving, eating well, getting your UV rays, dealing with life's stresses and issues as best you can. There are better days ahead. all best wishes to you and yours, JoanDelete
Hey Patricia---WOW! Dr. Patricia Grace-Farfaglia...truly wonderful news. So glad you have benefitted from Dr. Zamboni's discovery and all the new research. Thank YOU for taking time to compile CCSVI tracking data and publishing. Piles of research will eventually push this medical discovery from theory into reality. Keep finding ways to improve those endothelial cells, and keep defying the odds. You got this. fondly, JoanReplyDelete
Hi Joan, Well done and thanks for all the help that you gave to other families who suffer through this terrible illness. Thank you so much for taking the time and energy to share your learning and helping so many others get a "bonus round" too. Best wishes for the future.ReplyDelete
Thanks, Brian! Continued good health and hope to you and your family.Delete
Thank you so much for your tireless efforts over the last number of years. The world of MS has been turned upside down by your commitment. Did you realize 10 years ago that you would have created a world-wide movement for better health? Great people like you don't question what they do....they just do it selflessly.
You have my greatest respect Joan. Francine and I find this message important, so we will be initiation a translation today. I'll post it on our CCSVI-IVCC French page.
I know like you that "It's not over until it's over".
My deepest gratitude and appreciation go out to you and Jeff.
Love to you and your family, Christopher!Delete
Glad you and Francine will be translating this for our French-speaking friends. It comes from my heart. Better health, better living, better hope is available to all of us when we let go of fear, the need to dominate and control (which is, ironically enough, proven to be vasoconstrictive!) and live a life of love, forgiveness, kindness and respect (which actually dilates our vascular system! Oh, how I love science!!) Open hearts, open vessels, open lives. We only get these broken earthsuits for a few decades, we should enjoy them!
You are very kind, but none of this has been "selfless"--for learning these lessons has given me and Jeff more meaningful lives. And you're right, it's not over. The vascular science needs to be pushed over the goal line, and it will! But the struggle will never be "over", as humanity repeats the same sad loops of closed minds, closed hands and borders. The best we can do is challenge this "reality" and point to another way.
Hope to be able to see you in Canada in the future--and get more hugs :) So thankful for your compassionate heart and caring energy. YOU, Christopher, have continued to bring this info to others with MS...thanks for all you have done and will continue to do. LOVE, Joan
Hugss always from me here in UK always speak out .ReplyDelete