MS and Stress

I've had some big life changes and events going down lately, many of them good, but with them has come a bit of stresssssss. T'he s-word, as I sometimes think of it, can be feared for people with MS. I say this because of my personal experiences with stress: many of my worst exacerbations have come during times of off-the-hook stress. The stress can take over, and with the exacerbation, only get worse.

Now, it's not just my own anecdotal experiences that lead me to mention the stress-exacerbation connection: There is at least a bit of work studying mindfulness, stress, quality of life, and multiple sclerosis. Popular articles like this one and this one also talk about the MS/stress connection. And then I've heard many others (mainly in online support groups) equate some of their exacerbations with times of uber stress.

But the thing is that life goes on and with it stressful stuff comes up. Stress can be limited, but it's unavoidable. I've talked on this blog before about how I've come to see stress in some new ways, too, since learning that I have MS: things like sunburns, for instance, lead to embodied stress ... and even things like eating something disagreeable or missing sleep can lead to a state of background embodied stress. Being cold puts stress on the body, as does being too hot.

But the kind of stress I've been simultaneously experiencing, coping with, thinking about, and trying to mitigate is the stress that comes from anxiety, fear, social change, interpersonal friction, and things like that. Most of my recent stress has been work related, and I've been reminded of just how real stress about things like money and access to health insurance can be. If it keeps you up at night, it's stress ... and I'm always worried it could lead to my next neurological degradation.

So, how do I de-stress?

Avoiding stress is nice, but when it's unavoidable, de-stressing becomes the only option. I do the typical things: rest, process the stressors by talking and writing about them, exercise, exercise some more, and try to keep to my usual rhythms (eating the same things at the same times, sleeping regularly, and so on). It seems to me that you've also gotta have faith that the stress will pass. That it will wash over you and not leave you ruined. I find myself saying "Whatever resilience I have will be enough to manage the stress." I've gotta believe that.

Several times now I've lost a good deal of my vision and eye control during bouts with the s-word. This time around, I'm hoping to see it through.


The Cost of Having MS

I recently sat down to read David Purlmutter's Brain Maker, a book about gut microbes and health, and was struck by his mention of the cost of treating someone with multiple sclerosis over the lifetime. Now, this cost was for someone receiving meds and whatnot, and it was in a certain location/time, but the figure was pretty high.

So I thought I'd look into other research about the cost of having MS. I guess I was struck by this because I've been struggling with some unpaid MRI bills for several months; these are bills that my insurance company first said they'd cover, then refused to pay, and has now (finally!) has agreed to pay ... only the insurance company is not actually paying the bills, but just saying they'll pay the bills. Groan/sigh/whatever.

So the cost of having MS. Such figures are always based on averages, of course, and no one with MS is that average person. But here are a few thoughts:

This study explored the cost of treating roughly 28,000 folks with MS in Brazil, finding that the total cost for the group was about $2.3 billion, averaging out to $13,000 per person. Sounds pretty affordable, I guess, given the fact that my most recent MRI bill was for $16,000. Another study titled "The direct costs of multiple sclerosis-study in the Czech Republic" finds that "The average total direct costs per patient per year are €4,838." By the way, the study authors note that nearly all of the costs were for drugs. But what about in the US?

If you go the drug-treatment route, the overall cost really depends on the drug you're on ... or drugs you're on. Drugs like Ocrevus and Tysabri are reported to cost over $50k a year -- though I don't have experience with these costs first hand, and I'm sure such costs would depend on insurance coverage. The results of one study were that "For RRMS first-line therapy, ocrelizumab [which is Ocrevus] dominated the other DMTs with an ICER of US$166,338."

But drugs aren't the only things that cost if you're treating MS. There are even costs associated with MS diets, which tend to call for pricey foods like berries, organic produce, line caught salmon, and whatnot. And then there are gym memberships and workout gear, if you go that route.

The nice thing, for me, about shelling out for special foods and workout gear, is that the spending works on multiple things in my life, not just MS. It's nice when an expense enables you to do something, or enjoy something ... that's how I've been trying to spend my MS-related dough.


Review: Living Proof Documentary

Matt Embry's documentary, Living Proof, is now online at Vimeo, Google Play, and iTunes -- and I was able to watch it last night for $4. Finally! Embry is the person at the center of the MS Hope site and set of free resources for people with multiple sclerosis, and the documentary has been showing at various theaters around North America for the past few months.

It's very much a documentary about the documentarian, so in that sense it has some things in common with films like Super Size Me and Roger and Me, but what surprised me about Living Proof is just how candid a look it is into Embry's emotional landscape. When I first watched his web videos over at MS Hope, Embry struck me as a pretty macho guy with an ironclad veneer that was probably lined with kevlar. And yet, Living Proof starts with Embry breaking down in tears, and it's one of many similar scenes in the film. Throughout Living Proof, he really takes his guard down. The movie is about a guy with a message, but it's simultaneously about a guy undergoing a struggle, facing his worst fears, and not knowing what to do next. You get the sense that he needed to make this film for himself as much as for all of us, and that's an interesting balance.

So, what's Embry's message for people with MS? He keeps it really simple in the film:

  1. Look beyond the empty promises of the current lineup of expensive and dangerous drugs that have been shown to do nothing to change the longterm coarse of the disease
  2. Follow an anti-inflammatory diet that's rich in veggies and fish and moderate in all other respects
  3. Take your vitamin D
Now, on this blog and on YouTube I've talked about the eight or nine things I have been doing to stay healthy with MS, but there is something digestible about Embry's much more concise message. With that said, I half wished the film had discussed the importance of things like stress reduction, rest, and avoiding the heat. 

Like all good documentaries, Living Proof is exhaustive: he talks to some who are truly suffering from the disease, and others who are thriving with MS. He talks with old folks and younger ones, and with an array of doctors who share his opinions about the MS Society being a promotional arm of the pharmaceutical industry. He even gets insights from other contemporary advocates for diet-and-exercise like Terry Wahls and David Lyons of the MS Fitness Challenge, so it's a film capturing many of the outspoken advocates for diet and exercise in the non-pharmacological treatment of MS. A few folks (like George Jelinek and Conor Kerley) are absent, but you can't do it all.

Like Roger and Me, Embry invites the MS Society of Canada to one of his public lectures to discuss/debate how their pill-popping and drug-injecting approach to the disease differs from his ... but it should be no surprise that they don't show up. Much of his movie is a condemnation of the MS Society of Canada, and it sounds a lot like the National MS Society here in the US, which is clearly all about funding academics and promoting expensive, dangerous, underproductive drugs.

What I like most about Living Proof is how, at its core, it is a protest movie. It is a protest against the view that having MS necessarily means total deterioration of the nervous system over time, and it is a protest against those (MS Societies globally and big-pharma) who only promote the money-making non-solution of dangerous drugs. Embry is a film maker, so he made a powerfully emotional and personal protest film trying to do just one thing: help people with MS cut through the clouds and clouds of misinformation about the disease.

Out walking the dog this evening, after finishing the movie, I kept thinking about other avenues for intervention: journal articles that need to be written questioning the overly narrow focus of MS research that I find in my monthly perusals of PubMed, an accessibly book that synthesizes the many very similar diet-based approaches to MS (Swank, Jelinek, Wahls, Embry), and other kinds of accessible online content and new media spaces. So that is to say that I felt inspired to act by Living Proof ... and to keep going with my approach to the disease, which is a lot like Matt Embry's.


My MS Story

In my annual tradition, I've posted another "My MS Story" video to YouTube. This is my third video so far, and I'm kind of amazed at how far I've come.


The Price of Care

As I'm going to see my MS specialist (a neurologist) this Monday, I wandered over to openpaymentsdata.cms.gov to see what kind of cash he's been bringing in from the pharmaceutical companies he works with ... in addition to his job as a professor and researcher at a major university hospital. This year is much like the last: he pulled in an additional $280,000, and most of the money came from the three of the biggest MS drug manufacturers.

My neuro's payments from last year look like this, and the top three are big in the MS drug market:

So, I guess it could be easy to conclude that these payments lead to bias. The drug companies pay him to represent their drugs, say, or conduct research studies, and he prescribes and promotes the drugs. But it may not be that simple: he may work with these drug companies and still act as an objective professional, only prescribing the drugs he sees as the best fit for his patients.

Having seen him for three years now, I know him to be an MS specialist with only one treatment method: pharmaceuticals. I return to him year-after-year, symptom and exacerbation free, and he tells me I'm taking a huge risk and need to get on "a drug, any drug." His medicine all comes in a pill or injection. We agree to disagree ... but I go back every year.

So, why see a neurologist if I'm not on a drug sold by one of his sponsors? I see him each year because he's quite good at reading my MRI scans. You know the ones: they appear legible to an extent, but lesions to him can look like nothing much at all, when I read the scan. But when he points them out, they come into focus. Plus, he has a better handle on the software that allows him to compare images from one year to the next.

So my relationship with this heavily funded MS doctor is fraught: I am concerned that he has that $280k clouding his vision. And yet, I appreciate what knowledge and expertise he does impart.


Conor Kerley

I've been intrigued by the medical doctors with MS work as advocates for alternative treatments and approaches to multiple sclerosis: George Jelinek and Terry Wahls are the two examples that I've talked about before, but I'd also add Conor Kerley to that list.

And it's worth noting that I have not come across examples of any medical doctors with MS who promote mainstream pharmaceutical treatments, but perhaps they exist.

From what I've been able to gather online, Kerley is a dietician whereas Wahls and Jelinek are clinical physicians. And Kerley was diagnosed at a much younger age (15, from what I've read) than Wahls and Jelinek. I'm still not sure what Kerley's PhD is in; perhaps it's related to nutrition. But what binds all three together is that (like Matt Embry, who I wrote about last time) they all advocate a non-pharma approach to the disease with similar suggestions relating to diet, vit D intake, and overall wellness.

I suppose all three exist under the "living proof" frame, as well, as they're people who are living and thriving with the disease. Their perspectives are in stark contrast to the "get on the drugs" regimens promoted by the National Multiple Sclerosis Society of North America. 

Next time I hope to write a bit more about the National Multiple Sclerosis Society of North America, as I've become increasingly perturbed by their approach. 


Living Proof

I'm eagerly awaiting the release of Living Proof, Matt Embry's documentary about life with MS, big Pharma, and (I'm guessing) his battle with the MS Society of Canada.

I'm kind of guessing at the contents of the film, actually, as I've only seen the preview and managed to read and watch snippets about the film. Here's a still from a recent article about the film:

I found the above image of Matt Embry interesting, as he looks like he's struggling a bit in the picture ... typically, images of him feature a man that is resolute, strong, and healthy. He's the guy behind MSHope, if you've been to that site and downloaded his materials.

Unlike Wahls and some others who have published books about their MS diets and wellness approaches, much of what Matt Embry has done for fellow sufferers of the disease has been free and online. I like that. You don't have to read a big book to get his approach; you can just watch one of his short videos. The MSHope page puts it out there, and if you follow Matt Embry's father Ashton Embry on Facebook, you get more of the same: overt and outspoken instructions on their view about how to stay healthy with MS.

What I'd really like to see, and I guess I could do this myself, would be a book or documentary about all the dozens (or more) of people who are living well with MS over decades: not just Wahls in her book or Embry in his documentary, but a broad overview of how so many of us seem to be thriving despite the disease. Wahls does appear in Embry's film, so maybe his movie does that.

The notion of "living proof" is a powerful one, but when it rests on just one or two cases for evidence or proof, it seems somehow suspect (to me) given the way that MS is so variable ... I guess the way sample size predominates as a measure of accuracy in the sciences makes me want more examples. At the same time, I share Emby's desire to proselytize about his diet (and I'm on a similar one) and approach, as I'm convinced that it helps.


What You Think You Can't Do

I'm going to tell you right from the start that this post is going to connect working on the ignition system in a prison bus with making major life changes relating to MS. So call it a bit of a stretch if you want to, but I'm going to do it.

I used to say that I didn't have the will power to follow a really strict diet. This may confuse you, because I've mentioned on this blog before that I was vegan for years and that's clearly a strict diet ... but if you put a bag of M&Ms in front of me during those vegan days, I would have gobbled them up. I had no will power, I told myself. No way to resist the temptation of those M&Ms.

So I was pretty confident that I couldn't keep to a super strict diet, and the truth was that I really didn't think I needed to.

Then along came my MS diagnosis, I read a few books about inflammatory diets, and the next thing I knew I was starting a super strict diet ... and then keeping to it. Without exception, I've been on my diet for nearly two years now. It's a thing I thought I couldn't do, but I'm doing it without a problem just because I applied myself ... and was a little bit scared.

So here's the connection to the prison bus: This week I replaced several components of the ignition system on the bus, rewired a few other components, and got the darned thing started again. Cars and trucks, these were things I just couldn't figure out. I was more of a woodworking guy, I told myself. Solving problems under the hood was something I thought I couldn't do ... until I did it.

And the nice thing about this prison bus renovation project is that it doesn't come from a place of fear. For me, it's just all about learning and doing something new that I thought was beyond me.


Kristy Lee, Cuz She Can Sing

I was perusing some My MS Story videos on YouTube, as I sometimes do, and I found a pretty powerful one by Kristy Lee. Then I realized that she's a singer-songwriter. And boy can she sing. I know this song isn't really about MS, but I kind of hear it that way.


A Busy Summer

As I've mentioned before on this blog, summers were getting increasingly rough for me over the past decade. This is because my summers were largely been defined by MS-related exacerbations, and they were getting more prevalent and intense ... until last summer. Last summer was great, as I was in the start of a full and wonderful remission. And this summer continued on in that way. Sure a few lasting symptoms plague me, and the heat can be rough, but the summer was not a time of challenge. Instead, it was a time of projects.

If you bounce over to my YouTube channel, you'll see that, over the course of the summer, I put up a handful of various project videos. There were various hiking related things going on, and then a few building projects. My favorite build of the summer (by far!) was this simple slate table. The stone came from a rough piece of slate that I'd been eyeing for several years, and the wood was well aged in my barn-wood pile for nearly five years.

The table evolved slowly and had various possible futures, but my typically fleeting patience paid off ... as the table turned out quite well.


Backpacking with MS

I've been backpacking all my life, having started out in Colorado in the '70s and persisted with it all through the years. Melissa and I have been at it over ten years, and we still go out every summer.

The first pic is from one of our trips to the Rockies in 2008. The second was taken last week.

For me, backpacking with MS isn't a whole lot different from backpacking before I had MS and/or before I learned I had MS. I actively work to stay cooler, now, and also try not to overdo it out there. But I did overdo it some on this most recent trip, and I enjoyed both pushing it and that utter sense of exhaustion. 

In my mind, there's something new about backpacking with MS: It's a persistent sense of gratefulness as I walk through those hills knowing that I have (so far; knock on wood) been incredibly fortunate to have the level of mobility that I do. Knowing that every step may be my last, as is true for everyone, I walk with immense satisfaction in the backcountry. 


My MS Story

A little over a year ago, I posted a "My MS Story" video and then posted a bit about it on this blog. If you're not familiar with "My MS Story" videos, there are now dozens on YouTube and they tell all kinds of stories about symptoms, diagnoses, treatments, and more. I've tried to learn about the disease through various angles and channels -- and these "My MS Story" videos have been one of the most informative and compelling streams of info.

Today I posted a one-year-update on my original "My MS Story" video. I wanted to disrupt the static nature of my story being something that could be captured in a single video at a single moment, and so it just felt right to record another video. My plan is to put one up each year, creating an ongoing log.


Two New Journal Articles on Diet and MS Find ...

The first article finds that vitamins D and B-12 may keep MS in check. Nothing else, really, about specific diets being good or bad.

The second shows improved mood.


Adv Nutr. 2017 May 15;8(3):463-472. doi: 10.3945/an.116.014191. Print 2017 May.
Influence of Diet in Multiple Sclerosis: A Systematic Review.

Bagur MJ1, Murcia MA2,3, Jiménez-Monreal AM2,3, Tur JA3,4, Bibiloni MM3,4, Alonso GL1, Martínez-Tomé M5,3.
Author information

Nutrition is considered to be a possible factor in the pathogenesis of the neurological disease multiple sclerosis (MS). Nutrition intervention studies suggest that diet may be considered as a complementary treatment to control the progression of the disease; a systematic review of the literature on the influence of diet on MS was therefore conducted. The literature search was conducted by using Medlars Online International Literature (MEDLINE) via PubMed and Scopus. Forty-seven articles met the inclusion criteria. The reviewed articles assessed the relations between macro- and micronutrient intakes and MS incidence. The patients involved used alternative therapies (homeopathy), protocolized diets that included particular foods (herbal products such as grape seed extract, ginseng, blueberries, green tea, etc.), or dietary supplements such as vitamin D, carnitine, melatonin, or coenzyme Q10. Current studies suggest that high serum concentrations of vitamin D, a potent immunomodulator, may decrease the risk of MS and the risk of relapse and new lesions, while improving brain lesions and timed tandem walking. Experimental evidence suggests that serum vitamin D concentration is lower during MS relapses than in remission and is associated with a greater degree of disability [Expanded Disability Status Scale (EDSS) score >3]. The findings suggest that circulating vitamin D concentrations can be considered a biomarker of MS and supplemental vitamin D can be used therapeutically. Other studies point to a negative correlation between serum vitamin B-12 concentrations and EDSS score. Vitamin B-12 has fundamental roles in central nervous system function, especially in the methionine synthase-mediated conversion of homocysteine to methionine, which is essential for DNA and RNA synthesis. Therefore, vitamin B-12 deficiency may lead to an increase in the concentration of homocysteine. Further research is clearly necessary to determine whether treatment with vitamin B-12 supplements delays MS progression.


J Am Coll Nutr. 2017 Mar-Apr;36(3):150-168. doi: 10.1080/07315724.2016.1255160. Epub 2017 Apr 10.

A Multimodal, Nonpharmacologic Intervention Improves Mood and Cognitive Function in People with Multiple Sclerosis.

Lee JE1,2, Bisht B3, Hall MJ4,5, Rubenstein LM6, Louison R1, Klein DT3, Wahls TL3,7.

The objective of this study was to examine whether participation in a 12-month multimodal intervention would improve mood and cognitive function in adults with progressive multiple sclerosis (MS).

In this one-arm, open-label feasibility trial, participants were prescribed a home-based multimodal intervention, including (1) a modified Paleolithic diet; (2) an exercise program (stretching and strengthening of the trunk and lower limb muscles); (3) neuromuscular electrical stimulation (EStim) of trunk and lower limb muscles; and (4) stress management (meditation and self-massage). Individuals completed measures of mood (Beck Anxiety and Depression Inventories) and cognitive (Cognitive Stability Index, Cognitive Screening Test, Delis-Kaplan Executive Function System) and executive function (Wechsler Adult Intelligence Scale) at baseline and 3, 6, 9, and 12 months after the start of the intervention. Dosage of the multimodal intervention was assessed at 3, 6, 9, and 12 months.

The more individuals participated in the intervention activities, the greater improvements they had from baseline to 12 months on self-report measures of anxiety (Beck Anxiety Inventory [BAI]; ps = 0.001 to 0.02), depression (Beck Depression Inventory [BDI]; ps = <0 .0001="" 0.03="" 0.06="" 0.09="" 12="" a="" adult="" after="" and="" anxiety="" associated="" baseline="" changes="" closely="" cognitive="" delis-kaplan="" depression="" diet="" dosage.="" echsler="" evident="" executive="" exercise="" fatigue="" few="" from="" function="" generally="" higher="" improvements="" in="" index="" intake="" intelligence="" intervention="" just="" later="" management="" modified="" months="" mood="" more="" not="" observed="" of="" ognitive="" p="" paleolithic="" period.="" ps="<0.0001" related="" scale="" significantly="" stability="" stress="" system="" than="" the="" to="" until="" were="" whereas="" with="">
A modified Paleolithic diet, exercise, EStim, and stress management intervention like this one has the potential to improve the mood and cognitive symptoms that can lead to considerable suffering in people with MS, potentially improving quality of life and function for people with progressive MS.


Time for the Bus

With the semester over, I've found some more time to work on the prison bus ... resulting in two new videos:

It's been a project that requires a lot of planning, with every step needing to happen in a carefully orchestrated sequence. So I've struggled a bit to keep everything happening properly and in order ... but oddly enough, making these videos has helped with that.

Today I'm working on the water system ... and then onto a finished floor.

MS Symbiosis

Sebastian, one of the MS-vloggers I follow on YouTube, recently posted about moving toward a loving stance in relation to MS. He talks about using Yoga to come to terms with his body including his disease, and I really connect with this.


In the comments, I wrote that "I really connect with what you say here. I've heard and read a lot about people "fighting a war against MS," but I really don't like that kind of confrontational and adversarial thinking. For me, to battle MS would be a wage war on myself. So I try to think about living symbiotically with MS. In some ways, and I can't believe I'm saying this, having MS is one of the best things that has happened to me. So I admire your perspective and share it."

A while back on this blog, I wrote about not (yet) being able to see MS in that way ... and that my buddy/father-in-law John sees having diabetes as an opportunity. But over time I've come to that place ... at least on my good days.


Chasing Satisfaction

I was out on the farm this past week, and I guess you could say I was chasing satisfaction. I got the old tractor running a did some mowing ... and then I cleaned up around our old, hand-dug well and installed a hand-powered pump I had ordered a few years ago and have been waiting to test out.

Here are videos from those two projects:

In both projects, I certainly found satisfaction. The freshly cut grass, the cool water gurgling out of the pump, and also the joys of making both videos. These things were just perfect. Simple pleasures to be sure, and perhaps all the richer for their simplicity. 

Sure I found my mind wandering (during the jobs) to MS, to what happens when I heat up, and to the ever daunting spectre of mobility/immobility. But those fears that I've talked about before on this blog didn't slow me down or diminish the satisfaction. Instead, on these days in spring in 2017, the pleasure was pure and simple and the MS wasn't slowing me down. This is, of course, something I was deeply thankful for. 


Movement Inspiration Video

A cool dance and movement inspiration video for today. For me, there's nothing quite like dance. 


Three New Videos Up

Look out, people! I've put up three new YouTube videos in the past week:

The first is about updating my shop, which is coming along nicely.

The second features the installation of ... new floors on my prison bus!

And the third covers the steps I followed in building a backpack for my drone. The backpack turned out pretty well.

YouTube Revenue Rant

There has been a lot of chatter and complaining on YouTube (by YouTubers) about diminished earnings. This is all in response to a recent downtick in ad revenue with some sponsors pulling ads from the platform. I find the complaining borderline laughable. That any content creator makes money on YouTube at all is still surprising to me. I mean, it's great to bring in cash from making YouTube videos, but if that income source is drying up it might be time to diversify, tap other revenue streams, or just get a regular job. I can see complaining about an employer lowering your salary. But YouTube dropping ad revenue seems quite different to me.


It was on Instagram where I first encountered the #fuckms hashtag. It was being used to tag posts featuring physical activity and vitality and health, all amid an MS diagnosis, so I quickly jumped on board and started using it. The #fuckms tag is definitely angry, and I'm not sure centering wellness on anger is a good idea, but I like its defiance and refusal to submit.

#fuckms is in use over on Twitter, as well. There it seems a bit more nuanced, as it's sometimes used to express the same kind of defiance ... but at other times used to capture frustration, sadness, and general woe about living with the disease. Similarly rich conversations under a "Fuck MS" header have taken place over on Reddit.

Of course, there are a few looking to make a buck off the #fuckms attitude and approach, with a few Etsy shops selling various wares with the hashtag. That always happens. 

So yeah: #fuckms. But as I've mentioned before on this blog, I don't intend to dwell in opposition to this disease. My intuition tells me that's somehow unhealthy in the long run.