10.11.2017

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.

9.15.2017

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.

9.04.2017

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.


8.19.2017

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.



7.13.2017

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. 

5.29.2017

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.


5.23.2017

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.

#1


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

Abstract
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.

#2


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.

OBJECTIVE:
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).

METHODS:
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.

RESULTS:
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="">
CONCLUSIONS:
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.

5.21.2017

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.

5.15.2017

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. 

5.04.2017

Movement Inspiration Video

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



4.26.2017

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.

#FuckMS

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.

3.09.2017

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.

3.01.2017

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. 

2.28.2017

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.

2.19.2017

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.


1.24.2017

Prison Bus

Surprises:

  • 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.

 




1.20.2017

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.

1.17.2017

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.

1.12.2017

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.

1.07.2017

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.

1.01.2017

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.