Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. 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 immune paradigm of MS, and continues the 15 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, December 3, 2015

Confrontation

I was minding my own business, internally humming a John Philip Sousa march to keep up my pace (yes, I am a marching band nerd), as I hiked along the trail near our home.  Up ahead, about 25 yards ahead of me, I saw a coyote searching for prey in the underbrush.  It wasn't one of the scraggly coyotes we usually see in our neighborhood, it was rather large and well-fed predator.  A fighter.  Instead of continuing on the trail, I made an immediate decision to turn around, and headed back towards the main road.  I was in no mood for a confrontation.  I know that most coyotes will scare if you make a loud noise and look big and threatening, which isn't too difficult for me as a rather sturdy opera singer.  Studying this particular animal, I didn't feel as sure of my human superiority.  I went the other way and avoided the confrontation.

Lately, I've been feeling bombarded by confrontations.  Maybe you do, too?   We live in an exceedingly argumentative, in your face world.  Perhaps it's always been so, but I think we're all acutely aware of this fact, thanks to social media.  Our "news" sources pick up on this basest human desire for conflict, and provide us lots of clickable headlines.  Folks feel comfortable posting the vilest comments, hidden behind screen names and walls of anonymity. The more provocative the headline, the more clicks.  It's no longer about presenting actual news, it is about framing occurrences in a particular world view with a large side order of opinion. Clicks are selling soap these days.

Politicians understand this, and we are deluged daily with verbiage that seems as though it was transcribed from a middle school bathroom wall.  It's beyond shocking, and more saddening is the fact that it appears to be connecting with people.  Our family visited Washington, DC last summer, and I was moved to tears as we read President Lincoln's words inscribed on his memorial.  Will we ever hear this kind of intelligent, thoughtful discourse again?   We need to expect better from potential world leaders.

We all sense the precariousness of life.  Confrontational ideologies and words lead to avenging with guns and bombs.  As our population grows and natural resources become more scarce---water, clean air, trees, food, and yes, even oil---we are going to have to figure it out.  It is going to take a concerted effort.  May we be led, as Lincoln quoted Dickens in his inaugural speech,  by "the better angels of our nature."

For those of us who have been advocating for research and treatment in venous disease and multiple sclerosis, the initial push back and confrontation first came as a surprise, but is now a given.  When I brought Dr. Zamboni's research to Stanford University, I truly expected MS specialists to greet this research with enthusiasm and interest.  My naivete soon gave way to an understanding that research for a disease which already had 20 billion dollar a year pharmaceutical model would be guarded by the gate keepers of industry.  Why learn about MS etiology and help people, when there's already so much money being made on drug treatments?

As advocates for expanded MS research, we've all dealt with this confrontation and controversy. We've written letters to politicians and researchers, confronted MS specialists at rallies or conferences, made videos, replied to badly researched and one-sided news stories,  posted studies and research online,  raised money for clinical trials,  put on international conferences, started non-profits,  and shown up for each other.  At times, it's felt hopeless and exhausting.  But the truth is, we've all made a difference.

We may not have confronted the coyote head-on, but we have found ways around him.  By not going away and showing up.  By supporting research and sharing information with each other. By being encouraging and kind.  We just kept moving.

My walk took longer than normal today.  Because I chose to avoid a confrontation, I had to back track and head out to the road.  But that was just fine. I was able to talk to two of my neighbors and share gardening and health chit chat.  I got more exercise, hummed my Sousa march a bit longer, got more sunshine, and had this thought, which I've now shared with you.  Finding ways around confrontation, whether online or across the holiday dinner table, can sometimes reap wonderful rewards.

"In the confrontation between the stream and the rock, the stream always wins.  Not through strength, but through persistence."  Buddha


Peace,
Joan









14 comments:

  1. I remember when you dispaired, and we all have, but we regroup ourselves, remember our courage and keep on speaking - like ripples, we can't know exactly where our voices go, but they go somewhere. And somewhere there will be a real answer. Thank you so much for your voice. It gives my voice hope.

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    1. thanks to you, Sheryl, for your encouragement. We're all in this together. xo

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  2. Very well put Joan. Your determination on finding our way is exactly what has kept me going! You are the best and one of my heroes <3. Thank you again and again. Sending you a huge virtual hug. I wish it was in person though. xoxo

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    1. we'll get that in person hug one day, Shirley! Until then, thank you for all the encouragement over the years. We're still here!!!! xoxox

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  3. It has been an amazing-unexpected-but-precious benefit of this struggle to come to know warriors like you, Joan.
    Gratitude beyond measure.
    Carol S.

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    1. I'm so glad to know you and Scott, Carol....thank YOU for everything you are doing with AFRF. You're changing the dialogue. Big hugs from here.

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  4. Joan you do well in speaking up truths . Thank you from UK from me

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  5. Merry Christmas from UK . I was born on Christmas Day and care about others with MS like you do too

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    1. thanks for all of your advocacy and hard work, Lynne! Happy almost-birthday. May this coming year be filled with blessings. xo

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  6. Thank you always Joan from UK too for so much hard work you do I pay attention to

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  7. Thank you always Joan from UK too for so much hard work you do I pay attention to

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  8. Cara Joan, anche io, anche se, non direttamente interessato ma potenzialmente, sempre, perché siamo tutti vulnerabili in questa misteriosa vita che , giammai richiesta da nessuno di noi, viviamo attimo per attimo, e che, attimo per attimo, potrebbe essere stravolta da patologie a noi ignote e che il nostro intelletto-creatività-ricerca, senza condizionamenti da DOGMI Certezze Fedi e/o, da aberranti-ignobili Business, potrebbe risolvere e/o porre rimedio provvisorio, in attesa di soluzioni definitive, rendendo l'Uomo, sempre più un essere di Valore e giammai di solo successo.

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  9. I'm Canadian. I still feel fear regarding the politics in the USA and the lack of proper medical care here if you have MS. I try to keep informed about both issues and keep my strong thoughts to myself. I try to be positive on both accounts. I'm on a roller coaster ride with both and don't always keep my thoughts to myself or positive. That's when I know fear has hold of me. Joan, your words are soothing and comforting yet filled with positive action. I will remember this brilliant quote you have shared and your thoughts. Like some others, I needed your words of wisdom. Thank you.💖

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    1. Perfect love drives out fear, Bev. Hold fast to that when the dark thoiughts come. You live your life as a committed caregiver for Greg. You are love in action, every single day. Let that be your guiding light. Love to you.

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