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.


Prison, School, and Work

As you can tell from this video and from the one I posted a week or two ago, I've been spending some time on my prison bus. Fixing up the floors has taken some time, but it's been time well spent. I've been teaching myself to weld, which has been a longterm goal/dream, and the bus is shaping up. Plus, my welds are getting better ... slowly.

The bus comes out of the State's department of corrections, and I realized the other day that my key to the bus's lock is almost identical to the key to my office. I work for the State, too, so I guess they use a lot of the same locks and keys. The potential symbolism of the fact that both keys are the same did not escape me.

The other thing that's just so stirring and odd is the fact that school buses are used for prison buses. I mean, it's all just about human transportation, I guess, but whenever schools and prisons are overlaid it gets you thinking.

Time on the bus has been relegated to evenings and weekends, but that's been enough. It's coming along.


Exercise and Attitude Inspiration

I can't help but post this upbeat exercise and attitude inspiration video:

Zack Ruhl simply pushes it, does everything he can with what he has, and keeps his attitude up. Love it. 


Rust on the Prison Bus

The prison bus project is turning out to be ... a big one. Not in square feet or anything like that, but in terms of the overall complexity involved in orchestrating so many systems in such a small space. This past week I've been fighting rust and trying to clean up the metal sub-sub-floor, but all the while I've been thinking about systems.

Whereas a house needs one electrical system, the bus will have two ... and multiple power sources. The plumbing, similarly, drains in two directions: black and gray tanks, as opposed to one simple sewer line. And hiding the back sides of all of these systems in such a small space will involve some art.

So these weeks involve rust remediation, but also lots of planning. I'll post some layout pics as they come together.


Controlled Burn

I guess it's appropriate that Melissa and I helped out some friends with a controlled burn this weekend, as my right leg has been having it's own controlled burn all week. I'm thinking it's a rekindled lesion getting excited, as that leg has given me every kind of sensation imaginable in the past. But one never knows when a controlled burn will turn into a major flare, with MS, so I've been trying to chill out, rest, and do my "8 things" religiously.

And what brought on this controlled burn (in my leg)? This is total speculation, as one never knows, but a week-long cold thingy (with fever) seems to have thrown my system out of whack, and the leg started burning just a few days after my cold subsided. Maybe the fire will go out as fast as it started.


Prison Bus


  • finding a 40-foot prison bus for sale on Craig's List
  • the fact that the bus fit in our driveway
  • the array of artifacts left behind in the bus by the folks at the Department of Corrections
  • how fun it is to drive

I've started overhauling the interior, and should post something about that soon. In the meantime, here is a video tour of the bus in its original, person-hauling state.



I'm Not a Bike

After riding my bike to campus today, I came across a video of this bike that has been tweaked in a variety of ways to mimic/reflect some of the more prominent MS symptoms. On my ride, I rode quickly and smoothly. I enjoyed the feel of the cool wind on my face and the subtle spray of mist. I have MS and that was my experience on my bike. The video portrays quite a different story:

While I appreciate the quality of the video itself and the effort to literalize the experience of having MS for those without the disease, there is no one "MS experience." This is mentioned in the video -- that is, the fact that the disease hits people differently -- and yet the wonky bike represents the disease with a bounded set of characteristics. 

Some with MS can't do anything even close to riding a bike. Others of us ride with ease (at least for now). This MS-altered bike is somewhere in the middle of that continuum of experience, and while I understand the impulse to make the bike and the video, the project certainly flattens the experience of having MS.


What Happened to All the MS Blogs?

I started blogging in 2001, posting semi-regularly about my bus rides. Yes, bus rides. It was mundane and silly and I didn't even use a blogging platform at first (though they existed). Over the years, I've had blogs dedicated to everything from my Etch-a-Sketch pictures to building a house to found notes I've encountered on the street. And like many teachers, I've compelled various groups of students to blog about various things. So this is all to say that while I've done my share of blogging, I'm a newbie to blogging about MS.

When I started blogging about my experiences with and thoughts about MS, I had the impression that there was a thriving community of MS blogs and bloggers. There were even "MS Blog of the Year!' awards circulating. But now that I'm a year or so in (and yes, this blog had previous themes in previous lifetimes; it's only in this past year that it's really become "an MS blog"), I'm either missing the thriving MS blog and blogging community -- or it's not there.

As I peruse various MS-themed blogs, I find stories of people doing well: and as a result, they're not blogging. But there are sadder stories of others with challenges that keep them from blogging. Other blogs appear to have simply fallen quiet. As I know so well, we bloggers tend to sometimes leave our blogs over time. I wonder, is the incentive just not there when it comes to blogging about MS? I mean, YouTube channels dedicated to everything MS are thriving and multiplying. There are dozens of them. I have a few videos up on YouTube myself.

And so it is that I'm left wondering: where are all the MS bloggers? I'll have to try harder to find you.


A Guy With MS Walks Into a Neurologist's Office

A guy with MS walks into a neurologist's office.

The neurologist says to the guy "So, how you been feeling?"

The guy says "Well, doctor, I've actually been feeling really good. I haven't had any exacerbations or real problems in a year and things seem to be going really well for me."

"Any symptoms at all?" asks the neurologist.

"Not really," says the guy with MS. "I mean, I have a bit of peripheral sensation stuff that is residual from previous events, but I've been feeling really good. I was having exacerbations every few months, and they've completely stopped."

"Well," says the neurologist. "It's clear to me that you need to start taking a medication."

"Really? Which one?" asks the guy.

"Any medication. It doesn't matter which one. You just need to be on something."


This "joke" happened to me yesterday when I visited my neurologists. No new lesions on the MRI. It made me think of Joseph Dumit's book Drugs for Life.

Needless to say, I didn't start taking something. What I'm on seems to be working just fine.


MS Mentors

When I was first diagnosed with MS, I was reeling. The diagnosis seemed bleak, the advice from my doctors was inconsistent and troubling, and I didn't know anyone with MS. So I immediately started looking for mentors. Mentoring is funny: I think we tend to think of mentors seeking out their mentees, but in many cases it's the other way around. If you want and need good mentoring, sometimes you need to look for it.

First I found Phil, a guy in my local community who had a story that had many similarities to mine. We met, talked, and he described something that was invaluable to me: his path through this disease. Then I met Susan, a fellow academic who helped me think of useful ways to navigate the profession with regard to MS. I also talked with Sharon, a family friend with a lot of perspective on MS: she's had the disease some 40 years, has pursued a non-pharmaceutical treatment approach, and is incredibly positive.

I met with some of these mentors face-to-face and others via the phone or online. And there are others: people I've chatted with on YouTube, mainly, as there is so much sharing and discussion about the disease on that site. Every one of these mentoring relationships has been extremely valuable to me as I've worked toward sorting out my feelings, perspectives, plans, and approaches.

And today I had the chance to meet Sharon in person. She and I were called to Colorado for a funeral (my stepdad; her uncle), so it wasn't the cheeriest of meet-ups, but it was a meet-up nonetheless. I'm in my mid 40s and Sharon is in her mid 60s, and we're both doing very well. Yes, we both have this disease. And yes, we both have a few impairments. But overall we're both thriving. Seeing Sharon means seeing future possibility, longevity, resilience, and hope. It was a great meeting.


Multiple Sclerosis FaceBook Groups

There are groups for most things on Facebook, and multiple sclerosis is no exception. The main (drug-promoting) MS organizations have their groups, as do a wide array of folks who are invested in alternative treatments. Scrolling through the list of MS groups, you also find an array of localized and smaller groups: "I am, love, or miss someone with MS: 50 members." "Multiple Sclerosis Smiles: 60 members." "African American Multiple Sclerosis: 23 members."

Over the past year, I've joined several of these MS FaceBook groups, stayed in a few, and posted things from time to time. Like most Facebook groups, there are distinct cultures in them all, recognizable personalities, and the occasional heavy-handed admin. Some of the groups are more serious than others, and only a few are all that active (in terms of posts-per-week).

While I can't say that I've "found the perfect MS group" on Facebook just yet, I do appreciate the way these groups transcend the dynamics of my local MS support group. The groups don't seem controlled by the admins all that much. Instead, it's just folks like you and me posting about what's relevant at the time.


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.