I hope that you and your families and friends are surviving this most challenging time. Please let me know how you are faring in the comments. I've thought about our group members many times, praying that you've been able to stay sane and somewhat healthy, safe at home.
Jeff and I remain well. We continue to follow The Endothelial Health Program, more rigorously than ever. Exercise, sleep, sunshine, lots of fruits and veg, time in nature, laughter, meditation and music are helping us stay healthy and sane. We are in touch with our family via Facetime and phone calls. Work, meetings, and social interactions now happen on Zoom. We get outside every day for exercise, recreation or yard work, while maintaining social distancing and mask wearing in public. We have several family members who have lost their jobs. I retired and took my studio singing pension early at 58. Thankfully, Jeff continues to compose and has several projects in the works. You can hear his beautiful music on the new Netflix documentary Athlete A.
We realize how fortunate we are not to have to work outside our home to make a living. We are deeply aware that this has been an extrememly difficult time for all, most especially our front line workers, service workers, hourly wage earners, as well as our underserved minority communities, and those with underlying chronic illness and disabilities.
This kind of unrelenting stress and anxiety is hard on people with MS. So is not able to see your doctors or physical therapists, get massages, treatments, or visit with friends. It's hard not to go to a religious group gathering, a family event like a wedding, or simply go outside for a change of scenery. All of these situations are impactful, and can affect your health. In the midst of this, I hope you are able to find activities that bring you a bit of sunshine and joy. I've seen many MS friends taking joy in gardening, listening to music, enjoying family, and being in nature.
Over the years, you all know I've handed out a lot of unsolicited advice. I've tried to back up the medical advice with peer-reviewed and published science, not just anecdotal stories. That's why I always include links to medical journals in my posts. I've joked about being your bossy Mom, and telling you how to eat or stay active. But this time of forced stillness has given me the opportunity to ask myself WHY I have felt it so important to share all that we learned to help Jeff heal.
So much of what we click, hear and read today is about identity and narrative. There are thousands of falsehoods, conspiracy stories, invented tales, all created to mislead society. I've been horrified to see what people are being persuaded to believe, especially in regards to this current pandemic. Experts, researchers and scientists who have trained and have insight are being discounted for heresay, anecdotal evidence, and downright dangerous advice. This has happened throughout human history, when experts and intellectuals have been portrayed as "the elite," in order to sow discord in society. A rise in populism around the world has put us in a very dangerous situation, where the average citizen no longer believes in scientific evidence. Whether flat earthers, QAnon, anti-maskers, climate deniers; all deny scientific evidence in favor of a belief system that makes sense with a chosen story.
Believe me, I get the irony. Jeff's healing experience has been thrown in the heap of anecdotal evidence and heresay. The entire CCSVI investigation has been portrayed as quackery, and the vascular connection to MS and benefit of lifestyle intervention is still downplayed, even though the research began in medical journals and continues to be published. But I contend that our understanding of lifestyle and vascular intervention in the healing process of MS continues to build evidence, and is based on the earliest scientific discovery of the central vein sign, discovered by Rindfleisch in 1863, and still seen today a a reliable biomarker in MS. Inflammation in MS occurs around cerebral veins. That's the truth. We still do not know why. https://ejrnm.springeropen.com/articles/10.1186/s43055-020-00185-3
So, who am I to even comment on any of this? I'm surely not an expert, I have no medical degree or training. I should have shut my trap years ago, not gone up against MS specialists or challenged my husband's neurologist. I certainly should not have written or shared anything online. I have participated in the exact same narrative creation and populist rhetoric I find so abhorrent today. I have spun a tale, and sowed confusion. I am exactly part of the problem. Ironic, huh?
I would suggest readers follow the ongoing work of the International Society of Neurovascular Disease, for continued research into the heart/brain connection. These researchers are continuing to advance the science behind CCSVI, vascular contributions to dementia, and the impact of lifestyle on the heart brain axis in all diseases of neurodegeneration, including MS. https://isnvd.org
Also keep your eyes on the work being done at UCSF at The Gladstone Lab. Researchers there are honing in on toxic blood particles found in the MS brain, and linking the clotting protein fibrinogen to inflammation and decreased myelin repair.
Do we get to pick and choose our truth? Or is there an ultimate reality, beyond our personal narratives? Our dear friend, theoretical scientist Brian Greene, has a brilliant new book Until the End of Time, in which he attempts to explain the emergence on life on earth. Simple, right? Brian's own life work helps me put things in perspective. Evolution and entropy are tensions bound by gravity. Gravity is the real, measurable force which binds us all--stars and humans alike. There is mathmatical truth in gravity. As Brian states, "Life is physics, orchestrated." Listen to Brian explain it, better than I ever could.
But even in this truth, Brian admits we still do not have scientific proof as to WHY humans are conscious beings. I have a theory on this, as a religious person who believes in a creator God, but I don't have an equation.
I would submit that even in this unknowing, there is still a core of scientific fact. I cannot chose to ignore the rules of gravity, even though I might not like them, or don't completely understand them. There are so many brilliant people like Brian, experts and reseachers, who will spend their lives exploring topics we can never understand. These exceptional minds are working on COVID19 today. Do we ignore them, simply because they work in difficult concepts? I may not know the mathematical formulae which prove gravitational force, but I still live in a world governed by gravity. I may not like the fact that I have to wear a mask or distance myself right now, but I trust the trained epidemiologists exploring the corona virus.
Listen to the experts. Believe the smart people. Think critically. Question when individuals spout out theories formed "in my gut," as opposed to in a lab. When we get on an airplane, we all want the most experienced captain in the cockpit, not the most charismatic one. We want our surgeon to be the one who's the most well-trained, not the one who entertains us.
Most importantly, don't listen to me. Find your own team of doctors and specialists who you trust, who can take care of you, who will tailor your lifestyle program to suit your needs. That's the truth.
Here's hoping we all get through this,
Thank you always from me here in the UK.Stay safe .ReplyDelete
Hi Lynnie! Good to hear from you, encouraging friend. Stay healthy in the UK. xoxDelete
As usual Joan what you say is so true. It is not an easy world these days. However I am thankful to be in Canada where most of the advice we receive is well researched and scientifically, not politically, driven.ReplyDelete
Hi Penny, Good to hear from you! You are fortunate to have a governmental system that provides health care and relies on scientific evidence. I realize this created frustration during CCSVI investigations, but during a global pandemic, a centralized a-political response is essential. STAY WELL!!!!! xoxox JoanDelete
Not every gov't relies on scientific evidence. In Italy they treated thoudands MS patients using ccsvi procedure and it's being done free of charge - sponsored by national health system. I'm lucky I speak Italian and can read about it, but you can Google translate it too.ReplyDelete