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.


Lacking Clarity

I got some scans this week: a full MRI of my brain and spine. It took forever and was hot in the tube, but I wanted to do it in the event that the images revealed anything. For me, this was a follow-up MRI. Like many people with MS, I've been scanned before, and the idea behind a repeat scan was to do an assessment of my lesions. The simple logic behind this kind of annual scanning goes something like

more lesions = more disease activity
fewer lesions = a miracle

Like every other time I've endured an MRI, this time I got home afterwards and looked at my scans. I've found I can usually open the images themselves (one by one) in Photoshop, and most PCs will run the scanning software provided on the disk. Here are a few of my images:

Sitting in my neurologist's office in Chicago last January, I had no problem reading the images. He'd scroll through them on his giant monitor, and they were as legible as any map. But sitting at home on my laptop, scrolling through the images on the disc, everything seemed newly opaque. Did my doc have some special software or something? Was I looking at the wrong images? It was hard to tell.

There are so many things I could say about this experience of submitting to another scan. There is my concern about the cost of maintaining the magnet, the energy used, and the helium it takes to keep the thing cool (details on this info here). There is the fact that my insurance company still hasn't paid for last year's scan. And then there is the question of whether or not any of it is medically necessary. I question, too, the way this form of self-tracking (the scan) can end up seeming more important than the other forms of self-tracking that are seemingly much more subjective (like my journaling). But the thing that I think about the most is just how much these scans lack clarity.

The images themselves lack the visual clarity I was hoping for, in that I find them hard to read and see and ultimately interpret. They also lack clarity when it comes to the course of this disease. More lesions can mean more activity, it's true, but more activity can also not register in the form of visible lesions. Simply put, such scans can be misleading. And it's for that reason that I'm partially kicking myself for getting this recent scan.

A PRACTICAL NOTE: For anyone else with heat sensitivity, note that it can be very hot in the tube of an MRI machine. And it heats up the longer you're in there. Try not wearing the hot gowns they like to put on you. Try asking the tech if you can get a fan directed on you. I got a fan this time around, and it was much better. You might even be able to lie on an ice bed like this one (image links to Amazon; yes this pad is designed for dogs; but I use mine all the time and it's great) while in the tube.


Disease and Positive Thinking

John, my father-in-law and good friend, came down with type 1 diabetes in his 50s. This is the form of diabetes where your pancreas simply conks out. If he doesn't take insulin injections, John dies. Like most people with type 1 diabetes, he found out the hard way: a massive sugar spike wound him up in the hospital.

While the other people I know with type 1 diabetes tend to eat like most people do and modulate/monitor/control their sugar levels with insulin injections throughout the day, John is all about taking the least amount of insulin possible. He does one injection (very few units of insulin) in the morning, and then controls his sugar/carb intake by eating  a regimented diet consisting of low carbs, carefully monitored calorie intake, and the same foods each day. He follows a food calendar of sorts, eating the same things on Monday/Wednesday/Friday, say, and then another set of similar foods Tuesday/Thursday, and so on. And it works for him. John's sugar levels have been incredibly stable since he was first diagnosed, as in zero spikes, and he's remained quite healthy.

We were sitting around talking about his diabetes and the newly regimented eating habits (he used to eat much more spontaneously), and he said something I'll never forget:

"Contracting type 1 diabetes is the
best thing that ever happened to me."

Taughannock Falls State Park

When John said this, I had been newly diagnosed with MS. I simply could not fathom saying anything even remotely similar about my own situation. For John, coming down with diabetes meant huge changes in his eating practices and a new focus on stable routines in daily life. The disease was scary and life altering, for sure, but also empowering for him. Oddly enough, he's healthier in many ways -- fitter, leaner, more vibrant -- than he was before his pancreas died.

When John describes his own condition as a positive thing in his life, everything about having MS for me was too new, too shocking, too scary, and too depressing. But at this point, 18 years into having this disease and almost one year into knowing for sure that it's long been the cause of my symptoms, I can almost say that having MS is ... if not the best thing that could have happened to me, at least a positive source for inspiration. I mean, I'd be lying if I didn't say that I wish I didn't have the disease. But at the same time and quite a bit like John, I feel that I'm thriving ... not merely living in the clutches of this disease. At the moment, MS isn't "something I suffer from." It's something I live with.

And like John, this is likely because my response to MS has not been simply to try to go on living in the same ways I had before. Instead, my response has been to change everything: things at work, things at home, my daily routines, travel, hobbies, and much of what I eat. Foodways are powerful things, and for the first time in my life mine have become regular, repetitious, and free of many foods that clearly weren't working for me. These new foodways (which I've described on this blog before) seem to be nourishing many other parts of me.

So I'm not fully ready to own that powerful statement that John made about his disease. But it's starting to resonate within me.


Why I Like the Multiple Sclerosis Association of America

When I was diagnosed with MS, I found myself stumbling into and reading up on a variety of pages posted online by the National Multiple Sclerosis SocietyWhile the National Multiple Sclerosis Society certainly does a lot in the area of MS, I've increasingly gotten the feeling that it functions as an arm of the pharmaceutical industry. You can see this bias in the description of "Complimentary and Alternative Medicines" as risky, for instance, while "Treating MS" via conventional means is approached much less skeptically. Here's an annual report from the National Multiple Sclerosis Society regarding funding from pharmaceutical companies; it looks like the National Multiple Sclerosis Society is pulling in just over $10 million annually in big-pharma money.

I see the  Multiple Sclerosis Association of America as a rather different type of group. The MSAA provides free cooling equipment for folks with MS, free MRIs for those who can't afford to get needed scans of the brain and spinal cord, and sponsors various activity-based fundraisers (swims, for instance). The MRI fund was just re-established in 2016, after being offline for a while.
It's not that the MSAA is all about living with MS drug-free or anything like that (they have plenty of pharma-related info online and in print), it's just that they seem to do immediately helpful things for folks with MS. So it's a cool organization that I'm hoping to stay connected with.

In a future post, I should talk a bit about MS Australia, another national MS society. From what I've seen, MS Ausralia has a different character still, sponsoring a variety of public lectures (some of which are online). 


MS Medication: Choice or Necessity?

First, a bit of an apology: what is to follow is both a bit polemical and very long. But I felt like writing, so here goes:
I was recently meeting with my in-town neurologist, and he was pushing me to go on a drug. Big time. Which drug did he want me to take? He said it didn't really matter. He just wanted me to get on one. If it didn't work out, he'd bump me to another one. Three of the four neurologists I've seen, all MS specialists, have all taken the same position, very assertively insisting that I start on a "disease modifying therapy." One recommended Copaxone. Another advised Tysabri -- until learning of my high JCV load. Copaxone came up again, as did Gilenya -- but my chronically low white count (neutropenia) would likely not work with that one. So they can't decide; they just want me on something.
"I'd estimate that about 99% of folks in the U.S. with MS are on some form of medication for it," my in-town neurologist told me, then repeated that that was an estimate, as such a percentage would be hard to determine.
And yet, the idea of taking one of the existing drugs for MS still doesn't sit well with me. As I've mentioned on this blog before, I first started experiencing numbness in my appendages eighteen years ago, and my first bout of diplopia (6th cranial nerve palsy) was six or seven years ago. I was only (finally) diagnosed with MS this past year, but I've had MS for a good long while, and by all accounts -- even those of my various neurologists -- I'm doing quite well. I have a few neurological hiccups, it's true, but am in great shape (if I do say so myself) for a guy of 45 with or without the MS.
So why would I start taking drugs? Joseph Dumit, in his book Drugs for Life (links go to Amazon), argues pretty convincingly that the entire U.S. medical establishment has moved toward prescribing a litany of pharmaceuticals based entirely on calculated risks. Yes, as a guy in my 40s who has had MS for a good long while, I am at risk for all kinds of hellish bodily and cognitive experiences. But to treat my symptoms now would be to treat nothing, as I have no symptoms -- or very few.
I am always having to remind myself that whether or not to take drugs to treat MS or any other disease should be up to the individual. No one "should" or "must" pursue any treatment -- that should be a choice. At least that's how I see it. And with MS drugs being so potentially dodgy -- low success rates, wild side effects -- I think it's crazy to push them on anyone.
 As everyone in the MS community seems to know, Terry Wahls insists in her book that diet can do amazing things for those with MS, and yet she still advises that folks follow their doctor's orders and take a disease modifying therapy (drugs). This strikes me as a strategic cop out in her book, as she likely doesn't want to alienate her fellow practitioners. George Jalinek does the same thing in his book: he insists that Swank had it right and that diet (among other things, like getting some sun and staying healthy in other ways) is a great way to curb exacerbations -- and yet Jalinek still says that readers should follow their doctor's orders and take the drugs.
Given all that I've seen and read, I see some people doing well on the drugs, and others not so much. Now averages (as Joseph Dumit describes) might show that those on MS disease modifying therapies tend to do generally better than those not on the meds ... but then my doc is telling me that almost no one is not on the meds. So how do we know what MS even looks like and presents itself as in a healthy, active, diet and stress and rest and Vitamin D conscious person?
It seems like most of us with MS turn, at one point or another, to the trope of "living proof." The person who runs marathons and has MS is "living proof" that one can pursue hard-core athletics and manage the disease. The person whose brain fog has been dissipating is "living proof" that Gilenya really works. And the person who eats glutenous foods and has a flare-up is "living proof" that gluten provokes swelling.
I'm reluctant to say, then, that I'm "living proof" that someone with MS can be quite healthy and not take any form of medication. This might change tomorrow. I am, however, tired of being told that pursuing a disease modifying therapy is  something I absolutely need to do. I don't think it is irresponsible for me to ignore such suggestions; I think it is my choice. It's my body, my life, and my MS -- and from everything I've read and seen and heard from others, I remain extremely skeptical that any of the current medications would be productive in my particular, unique, individual case. And it is with that mindset that I move on, at least until tomorrow. 

Creating an Exacerbation Timeline to Track Multiple Sclerosis

I recently posted a video about what I call my "MS Exacerbation Timeline." Basically, this is a way to track exacerbations over time, attending to factors such as time of year, frequency/interval, etc. 

As I try to express in the video, I've found that this form of self-tracking can be both empowering and revealing. In particular, I find the chart I made that simply tracks flare-ups over time to be useful; the other valuable chart, for me, is the one that reveals which times of year are better and worse.

And hey, check it out: I'm moving into both my 18th year of have MS and my 10th month exacerbation free. (Melissa would have me knocking on wood right now, just for saying that.) The thing about having a good period, as I have been, is that it's both wonderful and nerve wracking as I find myself worrying and wondering about what's next. So it's time to calm the mind, keep doing what I'm doing, and simply enjoy the progress of time.

One final note: I've been growing my list of links ("blogs that I follow") over at the right. If you're on that list and would rather not be, just let me know! And thanks for blogging and vlogging. :)


Keeping Up With the Workouts

Over the summer, I came across this article about a determined runner with MS

In my teens and twenties, I competed in several triathlons before doing four marathons and an ultra (the Doc Holiday 35-miler), and through those amazing experiences thoroughly got long-distance and competitive running into ... and then out of my system. 
I loved it and I have no urge to return to it. As I mentioned in an earlier post, a few years ago I walked away from running and jogging, and I haven't looked back since. That's both because I love walking so much and because I've pretty consistently been pursuing a body weight workout routine.
I try to change up the workouts every few months, just to keep things from getting stale. I'm currently on a day-on, day-off routine with three main days in rotation: 1) a focused pulling day (various pull-ups and rows), mixing in leg work; 2) a focused pushing day (various dips and push-ups), mixing in leg work; and then 3) an improvisational movement day, working my whole body as I feel inspired to do so (typically circuit based). This iteration of the routine is feeling pretty good, and I likely won't change it for a spell.
And then I walk every day.
So what about the blood-brain barrier? Well, I tend to think that regular movement and strength-based exercise is working for me. At least for now. 

Recent Reading and MS

I was reading a lot about MS for a while there, and simultaneously consuming a lot of content online (videos, blogs, journal articles, etc.) -- then kind of backed off because I felt like the intake of info was clouding my vision of self and future.
But I recently returned to the book Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery by George Jelinek, and I'm reminded that it's a very positive and uplifting text. I'll post a more thorough review here soon, but basically I just appreciate the work Dr. Jelinek does to synthesize so much MS research and make it digestible for a general audience. With so much scientific knowledge behind paywalls, locked away in scientific articles, making so many findings accessible is a pretty democratic move. It's a generous book and an optimistic one, focusing a lot on Swank's diet-based research/work and insisting that everything but drugs gets overlooked by the medical community.
This has flowed very fluidly into reading Joseph Dumit's Drugs for Life: How Pharmaceutical Companies Define Our Health (Experimental Futures). I'll also post a thorough review of this book here soon. The big ideas grounding the book are pretty powerful: Dumit focuses on how the pharm/med establishment has come to view so many of us as in need of pharmaceutical intervention ... for life.
Dumit's book has me thinking about how well I'm doing physically and how this current state (which I'd call a healthy one) does not square with the insistence, which I've heard recently from several neurologists, that I commit to a life on drugs. So I'm becoming increasingly skeptical about a life on drugs to "combat" MS, and these books are giving me some ways to think through that stance.
Otherwise things are going pretty well. You know, I was diagnosed with MS several months ago, and at the time I was simply buzzing with anxiety, worry, and negativity. It was really hard. With lots of help, work, and time, I'm feeling much better about the whole thing. By this I mean I'm feeling more comfortable and/or at terms with the diagnosis. And then I'm feeling really great physically: lots of walks and a regular workout schedule are simply feeding that good feeling. So while there are waves of anxious MS worry, the tide is out at the moment -- and that's just fine with me.

MS and Exercise

I got inspired by Mike Pendlebury to post a tour of our workout room. It's always been a fun space, and has evolved over the years to suit different things that we're doing. The video is absent the music, the loft ping pong, and silliness of what we call "the wacky workout" -- but the video serves as a general overview.
Lately I go back-and-forth between watching various YouTube videos tagged things like "MS workout" and "MS exercise" -- and avoiding the videos all together. To be perfectly frank, which is hard when it comes to this topic, it's hard to see how physically debilitating this disease can be. Simply put, the many realities of MS are hard for me to watch and read about -- and yet, I want to know everything about this crazy disease.
Things have been hard for me at times, but then I watch a video of someone who's trying to learn to walk again, or trying to think straight, or describing the agony of daily life ... and I come to feel that
1) my experience with MS is somehow lightweight or fortunate (there's some guilt there)
2) that bad things are almost certainly coming (there's some fear there)
So it's unfortunate, I think, that negative and dreadful thinking can emanate (for me) from so many inspirational videos. Greg Kirkpatrick, for instance, has posted some amazingly inspirational videos about his struggle with MS. Watching him go through his challenges and triumphs, however, I start to wonder (and worse, worry) about what may be in store for me in the future? I want to stay positive. I must stay positive. And yet I worry.
So then I exercise. Moving my body, hanging, swinging, jumping, running, skipping rope -- it brings me back to the momentary experience of being. And everything is somewhat loosely better. At least for a while.


"My MS Story" Video

For the past several months, I've been watching a lot of "My MS Story" videos on YouTube. It's a really cool phenomenon and self-disclosure genre: people talking to the camera in many different ways about their experiences with the disease.

Some of the videos are long, and others are even longer -- spanning several segments. As you might imagine, similar themes keep popping up, like misdiagnosis, for instance, and medication, diet, and so on. I haven't looked to see if other diseases have versions of this "My Story" video thing going on, but the videos about MS are amazing. 
"My MS Story" Videos on YouTube
So, after fumbling through a few takes, I finally posted my own video version of "My MS Story" to YouTube. I put it online in March of 2016, and now think it might be time for an update: 
One odd thing about posting this "My MS Story" video is that the story keeps growing and changing, but the video is fixed back there in March of 2016. So I guess it's a kind of time capsule of that moment: one that was filled with angst, information overload, and plenty of searching for what to do next. 

Daily Walking

I used to be a runner, running marathons for years and logging all kinds of mileage. I ran the streets, the woods, and everything in between. By accident, after about 25 years of running, I transitioned over to walking, and now walk about six miles a day. Sometimes more. Some times a bit less. But nearly every day, Melissa and I are out walking. Some people talk about "giving up running" or "having to give up running." I just walked away from it.
Having learned that I have MS, I tend to think that this regular walking routine is one of the best things for me. Long and usually pretty fast, we walk around town, or around new towns that we visit, or through whatever countryside we find ourselves in.
I recently tested out a new GPS tracker, as part of my reviewing side project, and created this map of our walk. Half way through the walk, we met up with our good friend Amy and walked the lower part of the figure 8 with her. Walking and talking. That's what we do.
I talked with them a bit about my reading today about the "number needed to treat" metric, something I'll likely post more about later.


"Suffering from MS" & The Affordances of Disease

I tend to think that how we say things matters a lot, and the phrase "suffering from MS" or "suffering from multiple sclerosis" has never really felt right to me. Of course, MS isn't the only thing that people suffer from, and it can involve a fair amount of suffering, but to necessarily and matter-of-factly introduce suffering into a linguistic equation seems pretty final.
If you've seen the short film about Kayla Montgomery or read about her, then you know that while she "suffers" from MS, Kayla also triumphs as a runner because of it. (Or at least she did when the film was made.) In the case of Kayla Montgomery, MS is taken up as having certain affordances that enable her to do things she could not otherwise do. When she heats up and her MS pseudo-exacerbates, she can run harder. 

An "affordance" is just a fancy way of saying a possibility or potential. The affordances of a thing are all the things that can be done with that thing, and when it comes to diseases in general and autoimmune diseases in particular, a disease might be said to have certain affordances.
This is a different way of thinking about disease, it seems to me, and it might not always work or make sense, but it certainly contrasts with the idea of only and entirely "suffering from a disease." When we suffer from a disease, it gets the best of us. When we discover and exploit the affordances of a disease, we find things we can actually do because of or with the disease. This may sound naively optimistic, but I like something about this kind of reframing. 
It may only be that some folks with Grave's Disease can pop their eyes, and while it may be nothing more than a parlor trick -- but it seems like an affordance of that disease that some have fun with and enjoy it. Kayla Montgomery finds that because of the way her heat-induced pseudo-exacerbations work, she can run through the pain.

For me, I'm still exploring the affordances of MS and working daily not to think that I'm "suffering from" this disease. There certainly has been suffering, and there will likely be more to come, but there have also been many calm and pleasant times between the rough bits. If I were to list three things that I've actually taken from MS and see as positive things, it might look something like this:
  1. a heightened commitment to purposeful living
  2. an understanding of my physical, emotional, and psychological limits
  3. a tangible, vivid realization that the future is unclear and may very well be unpredictable


My Big 8 (for living with MS)

In my immersion (almost a year now) in information about MS -- and here I'm talking academic journal articles featuring MS research, books about the disease, social network stuff, and several conversations with doctors -- I get the sense that there are two main ways people tend to think about treating multiple sclerosis: with drugs and with diet.


The doctors I've met with just want me to take drugs, and everyone "alternative" seems to be recommending a new diet. I get that, which is to say that I think I'm coming to understand those two perspectives. But I'm reluctant to think that everything important in terms of the treatment of MS can be boiled down to drugs and diet.


For nearly a year, I've been exacerbation free. This means no new symptoms, no episodes, no flare-ups, and no additional impairments. It's only been under a year, but I think (and believe) that this "good year" has had something to do with what I've been doing. Yes, I've attended to my diet. No, I haven't gone on any medications for MS. But I've also attended to a whole host of other things.
These are the eight things I've been doing/attending to in summary form.


For me this has meant restructuring my job away from the more stressful activities (administration) and toward the things that don't stress me out (research). It's also meant reducing stressors such as not getting enough sleep, not eating irregularly, or even getting a sunburn. Since learning I have MS, I've also learned to recognize stress in some pockets of my life where I was previously comfortable allowing  stress to lurk. Regular patterns of daily life, I think, help reduce stress -- and I've begun to follow those patterns, weaving my life around a stable structure.


Even my pill-pushing neurologists agree that low vitamin D levels are not good for people with MS. When I was first diagnosed with MS, I got my D levels checked (a simple blood test I ordered online) and mine came in under 20 nanograms/milliliter. That's low, which is not surprising since I've spent most of my adult life avoiding the sun due to a history of skin cancer. So my neuro recommended I get more D in supplement form, and my levels have come up. Getting more sun is an option for some, but I find the supplements are more easily regularized.


I've exercised regularly my whole life, so I didn't need to "start exercising" or anything like that when I learned I had MS. However, I did start exercising differently. For me, this comes back to what I said about stress. Whereas I used to engage in stressful forms of exercise (big workouts sometimes; extreme physical adventures at other times), I now workout in very patterned and predictable ways: I walk just under 6 miles every day, and I do strength training (a patterned workout) three days a week. I would not want to underestimate the vitality that comes from such a routine.


Again, this comes back to stress reduction in some ways, but since learning I have MS I've slept a lot more. I now regularly take naps during the day (sometimes even for just a few minutes), and I try to get to bed by 10 every night. This early bedtime (it used to be closer to midnight) increases the likelihood that I'll get 7-8 hours of sleep each night, and I like that. Sometimes, MS demands a nap or more sleep. But this patterned and planned approach to rest is my attempt to be a bit more pro-active, banking rest ahead of what can be my body's desperate need for it.


My relationships have been incredibly important to me, especially since learning that I have MS. In people I find support, recognition, questions, challenges, and accountability, and though it's a cliché, "I couldn't do it without y'all." I've also found that various online communities have been great places to get and offer support, so I'm glad to have stumbled upon other MSers online. For me, one of the biggest challenges has been getting to a point where I accept this disease; talking with people has been the best way to make it real and get to(ward) that goal of acceptance.


Multiple sclerosis is a complicated disease, and some key things are not entirely agreed upon in the scientific/medical community: namely cause and treatment. Of course, there is a good deal of research and knowledge, but no "one clear cause" or "one clear treatment." Perhaps because of this, there is as much variation in the non-medical community of alternative-medicine advocates. Some will tell you that MS is caused in the gut, while others will tell you it's a result of environmental toxins. While it's been hard to sort through so many voices and ideas about MS, I do think this work of taking in information has been valuable. I've found some consistent messages, for instance (Swank leads to Jelinek leads to Wahls), and that's reassuring. Particularly when meeting with my neurologists and opposing their recommended treatments, I've found information was essential to maintaining my well being.


Whereas I used to love to sweat, now I avoid it. Whereas I used to enjoy a pile of blankets at night, now I go for a thin sheet. I'll never take another warm bath again. I even avoid hot showers, and I feel much better because of it. I know that not everyone with MS struggles with the heat, but I know I do -- so staying cool has been a big plus. I've also invested in some "cooling technologies," and those seem to be helping.


And the last thing I'll mention is diet, because I truly believe that it comes last in importance after everything else. I've shifted to a blended adaptation of Wahls' suggestions, following a  strict regime of eating raw fruits and veggies, lots of omega rich oils and foods, and nothing processed and very little cooked. It's a low salt diet, as well, and one that works to vary foods by color and nutrients while still tasting good.

MS Inspiration ... and Construction Work

I don't think I've mentioned this on this blog before, but I fancy myself a bit of a builder. Melissa and I built our own house (chronicled on our house-building blog), and then I've built things such as my "boat barn" and more recently what I call my "backwoods shelter." 

When I'm building a structure, I guess I'd say I feel a sense of purpose, and clarity, and peace, and entirely consumed in the task. It's the feeling consumed that I like the most: it simply draws me in and I'm entirely part of the project until it's done. 
So it was reassuring and interesting for me to see, when watching an episode of the British home refurbishing show Grand Designs, that Angelo Mastropietro is another home builder with MS. This is a pic of his place: a cave house in Britain. 

If you haven't seen the episode of Grand Designs where Angelo builds his amazing cave house, the full thing is on YouTube here (at least for now):
The episode focuses a bit on Angelo's MS, giving him space to talk about a recent flare-up and then describing the cave remodel project as that much more amazing because of his disease. He works tirelessly on the house, especially during the excavation phase, and it's certainly not the typical representation of someone "suffering from" multiple sclerosis. But the physicality of building, as Angelo describes it, is relaxing to him and something he enjoys.
As as a follow up on this story: In the Grand Designs episode, the cave house seems to be presented as Angelo's future house. In other online features of the place, it's described as his getaway. Now it seems that you can rent out the case for just under £200 a night: http://www.therockhouseretreat.co.uk Seems like a cool place to stay.


What Optic Neuritis Looks Like (Halloween Edition)

If you haven't had optic neuritis, you might not know what it looks like. Or maybe I should say, you might not know what it's like to look when you have optic neuritis. 
I've had optic neuritis three times now, all associated with multiple sclerosis, and should say right off the bat that no two episodes (for me) have been identical. The first time I had it, it was "just" painful with no real vision loss. The next two episodes involved vision loss. (I've also suffered from diplopia due to a palsy to the 6th cranial nerve, but that's something for another post.) 
The following image, doctored in PhotoShop, is my best effort to show what it's been like for me to look through my eyes when I have optic neuritis. The image at left is full clarity, the image at right is my rendering of what I have seen when suffering from optic neuritis. Some people also have color blindness (of various kinds) when the optic nerve is inflamed and/or being gnawed on by the white blood cells, but I haven't experienced that. 

So at right you should see an image that is darker/dimmer, a bit blurred, and then inconsistent: splotches abound that are darker and lighter. Fortunately, for me, I've generally had one eye working while the other is dimmed and screwed up, so it hasn't been impossible to see. 
So what's it like to experience vision loss due to optic neuritis? Of course, I can only speak for myself, but in a word I'd say disorienting. Clichés like "You never know how much you rely on your vision until you lose it" come to mind. My job, I quickly realized, is entirely vision-based. And then the vision loss is not just optical, it becomes psychological, as it's a daily reminder of the larger challenges and causes associated with having MS. 
Fortunately for me, most of my vision loss has been temporary. (Yes, I'm knocking on wood while I write this.) Losing the ability to see in a periodic way is both unsettling and relieving: unsettling because you never know when it's going to happen, but relieving because it's tended to come back. Another cliché: today I can see clearly enough to doctor up some images in PhotoShop and post a bit about optic neuritis. It's a good day.  

Modified Wahls Protocol Diet

(This is a slightly modified and revised version of a post I put up earlier this year.)

The Wahls Protocol diet has been pretty hot in the alternative-leaning MS community for a while now, as it's the next thing in treating multiple sclerosis from a non-pharmaceutical perspective. Wahls certainly offers an alternative to traditional forms of treatment, which typically involve taking pharmaceutical medications. The "big thing" before Wahls came along was the Swank low-fat diet. And there have been other books focused on MS and diet, as well. All of these books are not entirely out of sync, though Wahls's project certainly has its own features and points of emphasis.

Most would agree that one reason the Wahls diet has gained popularity is because of her astounding TED talk. Even if you don't have MS or any other autoimmune disease, the TED talk is powerful and persuasive. The woman could barely walk before starting on her diet, and her approach to eating seems to have enacted a miracle for her. This is an era when talking well in the TED style goes a long way, and Wahls does a great job.

Before talking a bit about how I've modified the Wahls diet(s) for myself, as someone with multiple sclerosis, I should also say that I've written a detailed review of The Wahls Protocol over on Amazon.com. In that review, I attempt to represent the main themes in the book and cover what I see as her main ideas. I try to be measured in the review, though some of Wahls's rhetoric really drove me nuts while reading the book.

Note that Wahls herself doesn't really encourage modification of her diets, as she's pretty firm on the three stages/tiers of her diet plan. However, I'm in the midst of tweaking her suggestions and those of others to make my diet work for me, my health, and my version of the disease.

Here's My Modified Wahls Diet

Supplements, taken in the morning: Omega-rich fish-oil pills, B-complex, D3 supplement (now 5k units; will likely taper down on that soon), probiotic

Breakfast: Quinoa, homemade granola, berries, fruit, flax meal, hemp meal, cacao nibs, bee pollen, sometimes some coconut or almond milk

Morning Juice: Every other day (roughly), homemade juice made of 1 apple, several carrots, some celery, and miscellaneous greens (UPDATE: I'm not doing this much anymore, but would like to get back to it ... so am leaving this up as a reminder for myself to get back to juicing)

Morning Snacks: fresh fruit

Lunch 1: copious salad of dark greens, cabbage, avocado, colored veggies, onion, nuts, tofu, brewers yeast, oils (hemp, flax, olive), and homemade salsa

Lunch 2: same as lunch #1, but with salmon or tuna instead of tofu

Afternoon Snacks: more fresh fruit

Dinners: A lot like lunch, but often includes such things as roasted veggies, homemade humus, lentils, homemade soup, sweet potatoes, squash, and the usual array of oils (hemp, olive, flax)

After dinner snack: fruit (melon if we can find it) and/or chia in coconut milk

~ ~ ~

So, you can see that it's not exactly any one of the three Wahls Protocols. Her diets are all based on blended breakfasts, which I haven't really gotten into. She's also a staunch advocate of large-scale carnivorousness, and I'm very new to eating meat of any kind (having been vegetarian/vegan for the past 25 years). Integrating salmon and tuna into my lunches every other day has been a big step for me.

Wahls is also very measured in her eating: all of her staged diets include very specific volumes of dark greens, sulfurous veggies, fruit, etc. I'm not much of a measurer just yet, so I'm just eating quantities that feel right and conform a bit to previous eating habits for me. I want to eat what makes sense, but also what feeds me. I'll post in the future about my reflections/reactions to this new diet.

Having been eating this way for [several months] now, it's too early to say how it feels to me in a physical way. For me, what I'd described here is not a huge divergence from what and how I've been eating for the past 25 years. (I'm now 45.) However, there are some tangible differences in what I'm eating now when compared to my past eating habits, so I'm hopeful that there may be some positive results in terms of my health -- even if that means that things aren't getting worse.