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.



12.25.2016

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." 


12.19.2016

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.

12.10.2016

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

12.07.2016

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!) 

12.02.2016

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.

12.01.2016

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.

SO FEAR AND HOPE ARE BATTLING IT OUT


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.

11.29.2016

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.

11.10.2016

Disease and Positive Thinking

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

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

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

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

Taughannock Falls State Park

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

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

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

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

11.03.2016

Why I Like the Multiple Sclerosis Association of America

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

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

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

11.02.2016

MS Medication: Choice or Necessity?

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

Creating an Exacerbation Timeline to Track Multiple Sclerosis

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



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

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

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

11.01.2016

Keeping Up With the Workouts

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

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

Recent Reading and MS

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