Free Food For Drug Info: The Face of "MS Support"

It was my mother who first alerted me to the "free food for drug information" racket that is at the heart of the business surrounding multiple sclerosis. But once she described to me how these "free information sessions" work, I started seeing them everywhere. They are commonly advertised by my local MS support group, and here is a recent ad for one of the sessions:

While the language of the notice is vague ("your therapy"), what happens at these sessions is crystal clear: MDs who are paid by the pharmaceutical industry hype a particular MS medication. If "your therapy" involves rest, exercise, or anything other than a pill or infusion, then you'll find that these sessions are all about one thing: free steak with a pharmaceutical chaser. 

Now, don't get me wrong: I'm not opposed to my fellow MSers who choose to take meds. I may someday, too. What I am opposed to, however, are these insidious meetings that are listed as informational but are actually propagandistic. The free food is almost always steak or seafood or something else enticing but probably not ideal for those of us who should avoid inflammation ... and the doctors are paid to make a pitch. 

I'm sure the money is good for Dr. Wynn, who has a practice up in Chicago. Otherwise, he probably wouldn't make the trip down state to help us all out.  

Here's another similar flier sent out by my local "support group." 


Walking on Thin Ice

As the temperature plummeted here in the Midwest, a light rain fell ... and we got ice. Lots of ice. Ice on the trees, ice weighing down the tall grasses, and ice on the sidewalks. This meant that our usual walking route became a veritable ice rink, which I've tried to conquer via various traction cleats pulled from my collection. Having broken out the spikes, I made this comparison video.

We walk every day. I mentioned this a while back on this blog: Melissa and I (almost) never miss a day. Walking is our religion, our rhythm, our time to reset and set up. These daily walks (typically the same 6-mile route) are super valuable to us, so when things like ice and cold interrupt it's as if our collective pulse is threatened. On the coldest days, we'll take to the mall for "mall walking," and we even acquired a raggedy old treadmill if we ever find ourselves wanting to walk in the house.

Walking on the ice these past few days, frozen-faced in the dark, I've been reminded of how fortunate I am to be able to walk our route. One step gives way to another automatically out around the park, through the neighborhoods, and back home. The spikes are a wonderful innovation.


Recent Anti-Inflammatory Diet Study

Since I have access to a wide range of academic journal articles (through my job), I periodically check in on new multiple sclerosis research. This article caught my eye, as it's a short-term study about dietary intervention in folks with various kinds of MS.

In the study, a group of people with MS were put on a diet that matches up with most diets that are labeled "anti-inflammatory." The article reads: subjects were put on "a calorie-restricted, semi-vegetarian diet and administration of vitamin D and other dietary supplements (fish oil, lipoic acid, omega-3 polyunsaturated fatty acids, resveratrol and multivitamin complex)."

The problem with the study, which is the problem with most medical studies, is that it was too short. The people were only studied for months, not years, and you just have to look to Swank's data (reported in Jalinek's book) to see that diet only really started to reduce exacerbations after years, not months.

But what did the study find? In just a few months, there were no measurable neurological changes. No surprise there. However, the diet did register as anti-inflammatory, reducing apparent markers of inflammation in their systems. In the words of the 11 authors: "serum levels of the activated isoforms of gelatinase matrix metalloproteinase-9 decreased by 59% in primary-progressive multiple sclerosis and by 51% in relapsing-remitting multiple sclerosis patients under nutritional intervention." So there were immediate consequences of following the diet, just not (yet) consequences of neurological magnitude.

Here's the full citation to the article. Contact me if you want to read it and don't have access:

Riccio et al. 2016, March. "Anti-inflammatory nutritional intervention in patients with relapsing-remitting and primary-progressive multiple sclerosis: A pilot study," Experimental Biology and Medicine, pp. 620-635, doi: 10.1177/1535370215618462


Keeping on Track

This is a picture of me and my sister Jen taken in (I'm guessing) 1975 or 1976. She turns 60 this coming year and I'll be 46 tomorrow. So we've grown up and moved on (she's living in Scotland now), and we don't talk as much as we used to, but we had a nice long conversation this afternoon. After making our way through various topics, she asked me how my health is. (I've come to love it when people ask. That's something new.) I told her that, to my surprise, I've been doing really well. Then she asked me if I ever have any trouble keeping to my diet and everything else that I'm doing? I had to think about that. 

My ultimate answer? No trouble, really, but that's not to say that it isn't hard. And given how foodways work, it's particularly hard around the holidays. My "MS diet" (as we jokingly call it around our house) is pretty rigid, and it's not the kind of thing where I feel I can deviate even the slightest bit and still be following it. So I don't deviate. As in never. 

And that pretty much goes for the other rigid plans I'm following: the vitamins (D especially), the rest, the approach to exercise and stress, the heat management. So just like I don't indulge in hot baths just for kicks, I don't indulge in the foods that are not on my food plan. I just don't. 

And I'm not really sure how I do it. Up until about a year ago, I always described myself as someone without very strong will power. I'd say I'd have one beer and then I'd have two. And the same went with cookies and everything else that I really wanted to eat or do or indulge in. But now I simply don't. Before, I didn't have the fear of God in me. Now I do. 

I guess a good way to explain it is that my actions are informed by the same dueling forces I talked about in a previous post: fear and hope. I fear what might happen if I deviated from the track that I'm on, and I hope that the track that I'm on has promise (which is why I stay on it). 

May fear and hope, then, guide me into turning 46 and well through this holiday season. 

(This is another pic of me and Jen; this time from 1980 and in Greece, where she was doing some kind of internship as an archeologist. She's led a pretty cool life!) 


Erik Weihenmayer is Awesome

 I just got the chance to read an advanced copy of Erik Weihenmayer's new book on kayaking the Grand Canyon. Weihenmayer is simply awesome. As I wrote in my review of the book on Amazon, the story takes over 100 pages to get to the kayaking adventure, but that's because he's done so many other amazing things leading up to his white water adventure -- and they all relate to the moment that he gets in the boat.

I was psyched to see that there are some great videos online of Weihenmayer kayaking. Plenty of flips and rolls ... as he's always rolling with it. Reading the book is an exercise in thinking about ability, the senses, and a life driven by projects. It's an awesome read.


When Symptoms Subside

As I mentioned in one of my recent videos over on my YouTube channel, I haven't had an exacerbation in a while. At least, not one that has resulted in obvious symptoms of MS. I'm phrasing things carefully here because multiple sclerosis can be a trickster, with pseudoexacerbations seeming anything but pseudo and very minor symptoms actually being indicators of full-blown exacerbations. At least in my experience.

These months without new symptoms have been both great and filled with dread, leading me to think that there are two main ways that I've been thinking about this period of relative smooth sailing in the sea of MS -- and the two ways are mirror opposites of each other.

The first I call "the earthquake model," and it goes something like this: Because there hasn't been a problem, then something big must be building up. No minor quakes means that it's easy to get complacent. But the big one is surely coming, and it's going to be a huge seismic event. This model, by the way, is informed almost entirely by fear.

The second I call "the cure for cancer model," and it runs something like this: The longer it is that the disease lies dormant, the better it is. The longer I go without any flareups, the more dormant the disease must be and the more likely it must be that it's never coming back. My friend C struggled with breast cancer a few years back, and the cancer worked like this for her: two years after chemo she was worried, but five years out things were looking much more like she'd beaten it. And this model, by the way, is informed almost entirely by hope.


From everything I know about MS, neither model makes sense. MS doesn't build up in your system and then suddenly erupt one day, with more "pressure" building up over time. And MS also never fully goes away, as the two main characteristics of MS -- a breached blood-brain-barrier and an immune system that likes to eat the central nervous system -- don't suddenly vanish. And yet, these two models (and ways of thinking) continue to compete within me as I wander through daily life, going a day ... and then another day ... and then another without a flare up. Today could be the last. Or tomorrow. And so on.

As I said, these two models are informed by the counter valencies of fear and hope. Those are strong feelings, drives, and motivations. I suppose where I want to get, as I move along with MS, is to a place where neither the fear nor the hope are overpowering. Instead, I hope to be just calmly moving forward, accepting whatever is when it is.