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.


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.


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). 


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. :)


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.

MS and Exercise

I got inspired by Mike Pendlebury to post a tour of our workout room. It's always been a fun space, and has evolved over the years to suit different things that we're doing. The video is absent the music, the loft ping pong, and silliness of what we call "the wacky workout" -- but the video serves as a general overview.
Lately I go back-and-forth between watching various YouTube videos tagged things like "MS workout" and "MS exercise" -- and avoiding the videos all together. To be perfectly frank, which is hard when it comes to this topic, it's hard to see how physically debilitating this disease can be. Simply put, the many realities of MS are hard for me to watch and read about -- and yet, I want to know everything about this crazy disease.
Things have been hard for me at times, but then I watch a video of someone who's trying to learn to walk again, or trying to think straight, or describing the agony of daily life ... and I come to feel that
1) my experience with MS is somehow lightweight or fortunate (there's some guilt there)
2) that bad things are almost certainly coming (there's some fear there)
So it's unfortunate, I think, that negative and dreadful thinking can emanate (for me) from so many inspirational videos. Greg Kirkpatrick, for instance, has posted some amazingly inspirational videos about his struggle with MS. Watching him go through his challenges and triumphs, however, I start to wonder (and worse, worry) about what may be in store for me in the future? I want to stay positive. I must stay positive. And yet I worry.
So then I exercise. Moving my body, hanging, swinging, jumping, running, skipping rope -- it brings me back to the momentary experience of being. And everything is somewhat loosely better. At least for a while.