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

Friday, November 18, 2016

Dr. Zamboni interview on Brave Dreams Trial

Dr. Paolo Zamboni is presenting at the Veith Symposium in New York City today.  He sat down for a live Facebook chat with CCSVI Alliance President, Sharon Richardson.   Here are some of the main talking points I jotted down while watching from my kitchen in California.  The video is available to all here:  https://www.facebook.com/CCSVI-Alliance-125892427429118/

It was good to hear and see these two, and their conversation was wonderful.  Sharon has become a well-versed advocate for those with MS.  The fact that she has MS and understands all of the medical terminology and scientific talk-- and takes it upon herself to travel and document this research--is so helpful for all of the laypeople around the world who wish to understand more about CCSVI research.  Thank you, Sharon!!!  You are a dynamo and we all appreciate you!!!  Thanks also to Florence D'Eon for all of her technological and photographic support.  She also has MS and travels on her own to document the science.  Thank you!!

The Brave Dreams trial is a scientifically robust, double-blinded, placebo controlled trial.  It is currently embargoed--meaning we will not know specific results until it is published in a peer-reviewed journal.  Because it is an interdisciplinary study involving neurologists, interventionalists, vascular and imaging specialists, it is going to take a lot of work to get the results vetted by all, and written up in a manuscript everyone agrees to.  Dr. Zamboni stressed that this is essential, in order to have the science taken seriously and published.

What we do know--this was a six center study throughout Italy.  200 subjects started the year long study, 125 people completed it.  They were mostly RRMS and some SPMS  (under 5.5 EDSS) who were investigated, treated (or not if they were in the sham control) and followed a year through completion of this study.  There were primary endpoints, which Dr. Zamboni explained were OBJECTIVE.  This means that these changes were not subjective, or based on patient's feelings, but were measurable by approved medical instrumentation.  These objective measurements included volume of bladder, visual acuity, timed walking and manual dexterity, as well as MRI lesion consideration.  All of these measurements were looked and compared during 3, 6, 9, and year intervals.  The first paper will report on these primary endpoints after treatment, and will hopefully be available next June.

As Dr. Zamboni stressed---this type of trial is unique and should become the gold standard for MS treatments.   NO drug trial has ever been weighted and measured in such a precise, objective way.

To the patients, Dr. Zamboni asked us all to "be patient".  There will be more coming on how CCSVI treatment improves perfusion and cerebrospinal flow, as well as how it helps with depression, memory, fatigue, and cognition.  This research is more "like an opera"--it is going to take cross-disciplinary collaboration and cooperation.  Across disciplines and countries.

For those who are out of wait---this news is frustrating.  For many of us, the time it is taking to gain scientific acceptance is far too long.  And as many have stated--how can having slowed venous drainage be good for the brain?  Shouldn't CCSVI be repaired?

There are other CCSVI treatment trials happening now or planned for the future at Alfred Hospital in Australia, in Canada, and through the ISNVD.   As to the comment that CCSVI science is "dead"-- many scientists agree that the study is just beginning.  To claim that vascular MS research is over, simply because this is taking time and hard work, is absurd.

The 2017 ISNVD conference will be in Taormina, Italy in May.  It will focus on the microbleeds and inflammation in the brain,  neurodegenrative disease, stroke, the heart brain connection and vascular interventions.  It will bring together international imaging specialists, neurologists and vascular specialists.  This will be a meeting of hearts and brains.  Patients, caregivers and laypeople are invited to attend.
link to ISNVD 2017

Onward,
Joan


Friday, September 23, 2016

Lipoic Acid improves MS and Endothelial Health

An inexpensive over the counter supplement, Lipoic Acid, has been shown to decrease brain atrophy and increase walking speed in people with secondary progressive MS.

Participants took 1200mg. of lipoic acid daily, while others took placebo.  And there were improvements shown in the pwMS--so much so, that neurologists are talking about it at ECTRIMS, in a recent oral presentation at the conference.

"There is a great unmet need to find a disease-modifying therapy for progressive MS. We wanted to look at lipoic acid as possibly filling this role since it's a small-molecule agent that, because of its low cost, could be readily available to anybody who needed it," said Dr Spain.

As I've written many times on this page, it is MUCH easier to test one supplement at a time against placebo, rather than having a trial for an entire lifestyle program.   This is why "gold standard" drug or supplement trials get all of the research dollars and attention.  So, it's at least nice to see a trial of a supplement which has no harmful side effects.

What is Lipoic Acid (LA), also known as a-lipoic acid (ALA) and how does it help people with MS? 

Lipoic Acid (LA) is found in almost all foods. Highest levels are found in organ meats, broccoli and spinach.  Tomatoes, peas and brussel sprouts also have higher levels of LA.

LA is an anti-oxidant, and prevents damage due to oxidative stress. 
It has been tested and found to be helpful for people with metabolic syndrome and diabetes---because it improves endothelial function. 

That's right.  LA helps the vasculature and blood flow.  You won't be reading that in any neurology press releases any time soon, but this is a fact.  LA increases blood flow, via dilation of vessels through endothelial health.  And this could account from the maintenance of gray matter and improved walking times in people with MS.  

But you know what is even better than simply taking LA or biotin or any other supplement?  Using an entire lifestyle program-- including nutrition, exercise, stress reduction, UV ray exposure-- which is shown to reduce oxidative stress, increase endothelial health and protect your brain.

It's not a pill,  it's a lifestyle.
Joan








Monday, September 5, 2016

Eating Food

I love food.  And because of this love, I've dealt with weight issues my entire life.  By the time I was 12 years old, I weighed in at 180.  A good weight for a "light heavyweight" prize fighter, but for a young girl in middle school, not so much.  As a result of this enthusiasm for food, I've tried a variety of ways to keep myself slim.  Liking boys and in turn wanting them to like me was the first motivator to join Weight Watchers.  It took almost two years, but I dropped 60 pounds.  By the time I was 14, I'd lost my baby fat, but had discovered the confusing world of dieting.

Diets do not work.  By that I mean, deprivation and punishment are no way to live.  Because as soon as you end the diet and return to "normal" life, the weight will return.  Trust me, I've yo yo'd enough to know.  That's why I always use the word "lifestyle."  Living in a particular way, with certain habits, is the only way to maintain health.

Food matters.  It is our means of taking in nutrition.  Our bodies rely on a good intake of antioxidants, which come from colorful plants and spices.  Envision blueberries' deep color or the vivid orange of curcumin.  The staining red of fresh beets and the deep green of kale.   We now know that our microbiome, the 2 pounds of bacteria which live in our guts, are responsible for the health of our brain.  The microbiome maintains our neuronal network, our neurotransmitters and hormone production. link to science  If we do not provide enough good prebiotic food for the good bacteria by means of colorful fruits and vegetables, we starve the good bacteria, and allow the bad to overtake the territory.  link  The survival of our microbiome, and in turn our brains, means choosing the right foods.

In 431 B.C., Hippocrates knew that food was the best medicine.


And there is a reason why researchers, like Dr. Terry Wahls, are honing in on the right diet to maintain the health and integrity of our bodies.  It's not because they are some sort of passionless creatures, attempting to take all of the fun out of eating, to make us suffer longer lives in healthy boredom.   It's because they understand the science behind nutrition, and they want to help us feel better.

There is a lot of confusing information out there.  We all read the news stories and click bait articles--DON'T eat bananas if you want to lose belly fat, ONLY drink lemon water with maple syrup, mix a protein and a carb, coconut oil is the way to beat Alzheimer's or the worst thing in the world.  Should I try paleo or vegan??? Wait, do coffee drinkers have less strokes or more cancer?  What the heck is gluten, anyway?  It's difficult to know what to believe.  And if you're like me, you don't want to take all the fun out of having a meal.  Sitting down with loved ones over a delicious meal is one of the true joys of being human.  We're not science experiments in a lab.

When I started changing up our family's meal plans almost ten years ago, I got a ton of pushback.  Let's just say that Jeff was not thrilled I stopped buying processed meats and cheese.  He loved both of these food groups so much, that he could have happily lived on sausage, cubes of cheddar, with a frosty diet Dr. Pepper to wash it all down. Suddenly, dinner was a piece of fish with a big leafy salad.  His "snacks" were now almonds and dried blueberries, or an apple.  Really???  What happened to the steaks and pasta with cheese?  And where was the mayonnaise?  Why, exactly,  couldn't he have a diet soda?  It's diet!!!  Let's just say, he was not happy, and I heard about it.  But I carried on, trying out new recipes and buying only organic and no prepared foods.  This meant more work for me, but I knew it would be worth it.

After about a year of this new lifestyle, we felt better.  We both lost our middle age love handles, our energy was better, we were sleeping well, we were staying active with less joint pain and better mobility. Less constipation, no heartburn, and our blood tests were coming back with astounding numbers.  No high CrP, low cholesterol, no inflammation, great liver enzymes, great vitamin D, perfect red and white blood cell counts.  Our doctor joked with us that if she just saw our serum markers, she'd think we were in our twenties. The truth is, we didn't feel deprived at all,  because we had found healthy substitutions for all of the foods we were missing.

Here's a few of our lifestyle hacks---the reason we still love to eat, and don't feel deprived.

Instead of:                     We have:

Crackers n'cheese    carrots, jicama sticks,
                                 pea pods w/salsa/guacomole

Potato Chips             home roasted
                                  sweet potato fries or home roasted kale chips

Ice Cream                 Yonanas
                                  frozen fruit dessert   http://yonanas.com

Pasta Alfredo           Eggplant moussaka
                                 w/garbanzo beans

Mayonaise               Hummus

Cold cuts                home roasted
                               organic chicken

Milk                     almond milk

Candy                   dried blueberries,
                              fresh strawberries, grapes

Bread/buns          corn tortillas
                            or lettuce wraps


You might notice that our substitutions look an awful lot like a Mediterranean Diet--and indeed, that's what we've grown to love.  (You can, too!!  link )  Tons of fresh fruits and veggies, less animal products, olives and olive oil, nuts and beans, LOTS of spices, and no more processed food.

I like to think of this lifestyle as Foods Made in Sunshine.  All of the ingredients we consume need sunshine in order to be produced.  Nothing originates inside a factory.  All of our food comes from the great outdoors.

I also like to think of this way of eating as "Yes, you can" rather than "No, don't have that!"  By replacing the mindset of deprivation with one of plenty and gratitude, we can enjoy what we eat, and not suffer with iceberg lettuce and a sad tomato slice, wishing it was something else.

Hope this is an inspiration for those of you wanting to try a new lifestyle.  Shaming never worked for me when I wanted to lose weight or feel better.  Deprivation wasn't the way for me or my family.  But finding positive and healthy ways to think about food has been the key.

Wishing you and yours health and wholeness.  And lots of happy eating.
xo
Joan