Welcome! This blog contains research & information on lifestyle, nutrition 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 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

Sunday, October 18, 2015

Community

I'm fortunate enough to be at the Canadian Neurovascular Health Society Conference this weekend.  I say fortunate for many reasons.  I have the gifts of mobility, financial resources, and free time necessary to get on a plane and fly to another country to have this experience.  And the older I get, the less I take this for granted.  I'll go down to breakfast soon, and hear Dr. Zamboni address us, via Skype!
https://www.facebook.com/CanadianNeurovascularHealth

Sandra Birrell and her husband Landon, along with the incredible CNHS board and dozens of volunteers and supporters, have put on a tremendous event.  The venue is wonderful, the food has been nourishing, the speakers are all interesting and passionate, and my fingers are flying on the keyboard.  There is something here for everyone.  It's wonderful to see old friends and new, and to share and connect and be physically together.

I don't have MS.  I found this whole world of activists and disease specialists because I love someone with MS.  So, I always feel a bit strange and slightly self-conscious receiving thanks for my work.  Which happens whenever I get out to these wonderful events and see people who have been part of our virtual community for six years now.

I am more convinced than ever of the vascular connection to multiple sclerosis.  As the new, ground-breaking research continues to come in---on the lymphatic vessels of the brain, on the connection of the gut to the brain and the microbiome's influence on our blood brain barrier, and on the fact that all it takes to create MS is blood on brain tissue.  All signs are pointing to the connection.  And I have to admit, there is a bit of ego gratification in hearing the word "endothelium" coming from the speaker's podium.  I am proud of having a part in encouraging this discussion...yup, proud.  I think that's OK, but this fact also embarresses me.  Because, in all honesty, I know that all of this has been a gift.  And I feel compelled to continue to share and encourage.  None of us can do this in a vacuum.

Thanks to Amy, Sharon and Carol, and our discussion at dinner last night, I really got this message loud and clear.  If you have found any inspiration or motivation from this blog, please share it.  By that, I mean, get the information out to other people with MS.  You don't have to make them read my verbiage, simply be for them the kind of friend you think they need.  The kind of friend you need.  Can you encourage them to eat a more healthy, veggie and fruit-filled diet?  Can you be there for them, to take a walk, help with learning about supplementation and the blood tests needed to monitor Vitamin D levels or B12 levels.  Can you listen to them, help them deal with day to day stress?  Teach them a few deep breathing exercises, or strategies that have helped you get to sleep and stay asleep.  You know, all the stuff we share on line.  Because in the end, the spreading and sharing of this encouragement and knowledge in our communities--in all its forms--will be what means the most.

The science will come in.  It took 70 years for the EAE mouse model of MS to become a 20 billion dollar a year pharmaceutical machine.  This establishment fortress is not going to fall overnight, or even in a decade.  But that wall is beginning to collapse, as we remove one false brick at a time.  MS is many different things to each individual, but the strategies to keep people well are being outlined.  Good spinal and cerebral perfusion, good sleep, exercise, whole food nutrition, UV rays and Vitamin D, a healthy microbiome and probiotics, toxin and allergen removal, spinal and muscular alignment.  This is the foundation of the new approach to managing MS.  Focus on the individual, functional medicine, healing of the vasculature----and dealing with mechanical issues which inhibit healthy blood, CSF and lymph flow.  You can follow one of the many plans and diets being published and sold and be a loyal acolyte to a specific individual,  or you can go free-style, and find your own way.  Just know that the basics remain the same.

It's the community effort which is creating this new world.  The volunteers who put flowers on the table or stuff envelopes, send out e-mails, book venues and speakers.  The people who post on twitter, FB, and blog about the research.  The patients who learn about new treatment modalities and share their knowledge with others with videos and books and speaking engagements.  Every individual has a specific part to play, a talent to share.  That means you, too!

This is what community looks like.
Joan


8 comments:

  1. Joan ... you are a gift to many.
    Thank you. xoxo

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    1. That reminds me of a joke in our family...When Jeff first heard the phrase "the gift of MS", he laughed and asked me if that meant he could return it! :-) Hugs and thanks to you, Shirley. xo

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  2. You are so wonderful , you just like our eyes and ears in these conferences not only letting us know what is going on but explaining them too. Thank you

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    1. thanks, Vahid! Will have a write up of important points from the speakers in the next day or so. Glad to help.

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  3. So glad to have finally met you in person! Always grateful for your hard work and encouragement!

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    1. Wonderful to meet you, too, Lori! So glad to see you doing so well in person. Keep sharing your incredible CCSVI healing story.

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