Newly Diagnosed

Having heard from several people recently who've been recently diagnosed with MS, so thought I'd make a video dedicated to that topic. Like everything on my MS-related YouTube channel, it's a video entirely from my perspective and by no means definitive ... but it's an attempt to think through some important considerations when coping with a life-altering diagnosis.


Can You Stay On a Diet ... Forever?

I posted a new video about diet over on YouTube ... not my anti-inflammatory diet specifically, but a video all about why sticking to a diet doesn't always work out.

I've said this before on this blog: fear can be a powerful motivator, and a progressive, potentially debilitating disease is a force to be reckoned with.


Review of Ann Romney's MS Story

It may be the most unlikely book I've ever picked up, but I ended up getting a lot out of Ann Romney's memoir. Yes, it's an MS related story and I talk about it on my new YouTube channel:


5 MS Signs

I just posted a video talking about 5 multiple sclerosis related signs. As I discuss in the video, these are not markers of the disease or foolproof diagnostic tools. Not even close. But they can be part of the larger MS picture, and for me some of them are things I live with on a daily basis.

The video is below. The five signs I discuss are:
  1. Lhermitte's Sign
  2. the Babinski reflex
  3. Uhthoff's phenomenon
  4. Clonus
  5. Hoffman's sign


Review of "This Way Up," a Documentary About Mountain Biker Andy McKenna and His Experiences with MS

I was fortunate to watch the new documentary "This Way Up" this evening, and I say that I'm "fortunate" because it's an incredibly uplifting, important tale of one guy's experience with multiple sclerosis. To get right to it, let me say what I think is the most important thing about the film: It is yet one more testimonial of someone with MS choosing a better treatment approach than the array of so-called disease modifying MS drugs.

Like the look into Selma Blair's world that I was talking about in an earlier post, this is a film that reveals some of the hard challenges that MS can pose. It's a documentary that offers a snapshot of mountain biker Andy McKenna's life, and MS has hit him hard enough to cause tremors, numbness, sensation loss, and balance issues. The dude is a biker, so MS challenges to take away his ability to get out there on the open single track. But Andy stays on his bike, pushes through, and ultimately discovers a hybrid Swank/Jelinek diet. He also works on stress reduction and tries CBD oil.

This is a film about mindfulness, coming to accept the damaging power of MS if it's simply ignored, and a story of a group of friends coming together to support one guy with a hardcore challenge on his plate. The film runs about 30 minutes, is steeped in rich video shots of the Scottish countryside, and as a story is anchored by interviews with: Andy himself, Andy's wife Aneela, and a few close friends and colleagues. It's an intimate, local, manageable film. Since Andy is a mountain biker, you see him out on the trails riding hard, struggling at times, and always finding ways to find joy in the everyday. His joy is infectious.

I've talked quite a bit about those "My MS Story" videos here on my blog, and I obviously find so much value in them ... but one failing of "My MS Story" videos as a genre could be said to be their seriousness. It makes sense: people sit down to talk about a progressive, potentially debilitating disease, and what comes out is not all that uplifting. "This Way Up" counterbalances that seriousness. It's full of humor, laughter, smiles, and has a perspective on MS as anything but life ending.

For more on and by Andy McKenna, you can check out his  FB group. He's also on Instagram posting a steady stream of touching, hilarious, and intimate photos. 

* * *

If you wanna watch the film, the entire thing is on YouTube!


My MS Story, 20 Years In

Okay, as promised here is my 4th installment of My MS Story. I put that phrase in caps because these videos are a big phenomenon on YouTube, with people all over the world sharing their experiences with multiple sclerosis. I've gotta say that it's pretty amazing to be part of such a huge group story telling endeavor. 

New MS Themed YouTube Channel

With my main YouTube channel humming along and still a lot of fun, I decided to start up a second YouTube channel focused specifically on multiple sclerosis, health, wellness, exercise, food, and all things #livingwellwithms.

The reason for this new channel is that MS related videos have made less and less sense on my main channel, which has developed a strong building theme. YouTube channels have become niche, specialized content streams, and while I've tried to fight that a bit ... I think it will be nice to have a fresh new space to post MS related videos.

So yeah, as of today I have three videos and one subscriber. It's fresh, new, and kind of like an apartment that you haven't moved into.

But! This afternoon I'll be posting my 4th "My MS Story" video to the channel. This is part of my effort to update my story annually. It's been cool posting on this annual basis about the disease, and I'll likely post that video here in just a few hours. 


Selma Blair Interview

A gripping interview with Selma Blair just dropped, so I thought I'd post it here:


Selma Blair Hits the Red Carpet

You've probably seen the video as it was all over the news feeds this week: Selma Blair hitting the red carpet at a Vanity Fair Oscar party. One headline read "Selma Blair Hits the Red Carpet with a Cane." And reports were that this was her first big public appearance since her MS diagnosis this past fall.

But it's not like Selma Blair, to me best known for her role in Legally Blonde (but she's been in a ton of other stuff), has been in hiding or anything. She has a lively Instagram feed and has done a few recent interviews about having MS. But "the news" is what the news is, and I guess it made for a better story to make this recent appearance seem more like a post-diagnosis debut. 

It must be odd being a celebrity with a major disease: for MS, we've got Montel Williams, Ann Romney, Jack Osborne, and others ... but when you think of "celebrities with disease" people like Michael J. Fox probably come to mind. Hmmm ... lots of dudes on these lists. WebMD keeps this clickbaitish list of celebrities with MS, and it's also a list with mainly dudes even though MS hits women much harder than men. 

It's both tough and beautiful to watch Selma Blair do her thing on the red carpet. Tough because she's obviously struggling, and she's discussed publicly how she has a pretty wicked mix of sensory and movement related nerve stuff going on. (It also sounds like her diagnosis was a long time coming, much like my own.) But I say beautiful because she's out there courageously doing her thing in an industry where full mobility is likely taken for granted. 

What have I been up to? Well, pretty much the usual: walking daily, sticking to my version of the Wahls diet, and keeping after the building projects. Here's one of my most recent builds, which took just about all I've got given the cold and whatnot. But it was a joy to do.


New Book! Writing As Punishment in Schools, Courts, and Everyday Life

My new book is available for pre-order! I'm super excited to see that, as of today, Amazon has the book for sale on its site. The book won't be physically available for a few months, but it looks like Writing as Punishment will be released in hardcover and paperback simultaneously, which will make it much more accessible.

If you happen to read the book and peek at the acknowledgements, you'll see that I mention having some "health problems" that slowed me down a bit while I was writing the book. Since this is my MS blog, let me say a bit more about that:

I was actually half way through writing the book, with three of the five chapters drafted, when nerve issues hit my right side ... and then I lost much of my vision in my left eye. This was the winter of 2015. Optic neuritis took out my right eye next, and I can tell you that reading and writing of any kind was no longer happening.

Looking back on it now, the exacerbation was an odd kind of blessing, not because it stalled me out on the writing of the book, but because it was impetus for me to finally see a neurologist at a major research hospital outside of my relatively small town. That doc, down in St. Louis, didn't take long to diagnose me with multiple sclerosis, and from the symptoms it seemed like I'd had it for 17 or 18 years.

But what happened to the book? It took me about a year to get back to it. I considered not finishing it, but that jus didn't make sense. I'd get back to it ... I just needed time. When my vision had largely returned to normal ("normal"), and I was feeling much better on the physical side, I was only just figuring out how to cope with the disease. Emotionally and psychologically, a big diagnosis can take some time to figure out. Moving forward in life in a positive way took me some time. Book writing, for me, requires a positive head space ... and that would have to wait.

The positive head space finally returned and I spent another year or two researching those final chapters, writing them, and revising everything else. So yeah, Writing as Punishment was a tough one to finish ... but having read it recently as page-proofs, I love every page.

Here's the blurb describing the book:

Writing tends to be characterized as a positive aspect of literacy that helps us to express our thoughts, to foster interpersonal communication, and to archive ideas. However, there is a vast array of evidence that emphasizes the counterbelief that writing has the power to punish, shame, humiliate, control, dehumanize, fetishize, and transform those who are subjected to it. In Writing as Punishment in Schools, Courts, and Everyday Life, Spencer Schaffner looks at many instances of writing as punishment, including forced tattooing, drunk shaming, court-ordered letters of apology, and social media shaming, with the aim of bringing understanding and recognition to the coupling of literacy and subjection.
Writing as Punishment in Schools, Courts, and Everyday Life is a fascinating inquiry into how sinister writing can truly be and directly questions the educational ideal that powerful writing is invariably a public good. While Schaffner does look at the darker side of writing, he neither vilifies nor supports the practice of writing as punishment. Rather, he investigates the question with humanistic inquiry and focuses on what can be learned from understanding the many strange ways that writing as punishment is used to accomplish fundamental objectives in everyday life.
Through five succinct case studies, we meet teachers, judges, parents, sex traffickers, and drunken partiers who have turned to writing because of its presumed power over writers and readers. Schaffner provides careful analysis of familiar punishments, such as schoolchildren copying lines, and more bizarre public rituals that result in ink-covered bodies and individuals forced to hold signs in public.
Schaffner argues that writing-based punishment should not be dismissed as benign or condemned as a misguided perversion of writing, but instead should be understood as an instrument capable of furthering both the aims of justice and degradation.


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.