"My MS Story" Video

For the past several months, I've been watching a lot of "My MS Story" videos on YouTube. It's a really cool phenomenon and self-disclosure genre: people talking to the camera in many different ways about their experiences with the disease.

Some of the videos are long, and others are even longer -- spanning several segments. As you might imagine, similar themes keep popping up, like misdiagnosis, for instance, and medication, diet, and so on. I haven't looked to see if other diseases have versions of this "My Story" video thing going on, but the videos about MS are amazing. 
"My MS Story" Videos on YouTube
So, after fumbling through a few takes, I finally posted my own video version of "My MS Story" to YouTube. I put it online in March of 2016, and now think it might be time for an update: 
One odd thing about posting this "My MS Story" video is that the story keeps growing and changing, but the video is fixed back there in March of 2016. So I guess it's a kind of time capsule of that moment: one that was filled with angst, information overload, and plenty of searching for what to do next. 

Daily Walking

I used to be a runner, running marathons for years and logging all kinds of mileage. I ran the streets, the woods, and everything in between. By accident, after about 25 years of running, I transitioned over to walking, and now walk about six miles a day. Sometimes more. Some times a bit less. But nearly every day, Melissa and I are out walking. Some people talk about "giving up running" or "having to give up running." I just walked away from it.
Having learned that I have MS, I tend to think that this regular walking routine is one of the best things for me. Long and usually pretty fast, we walk around town, or around new towns that we visit, or through whatever countryside we find ourselves in.
I recently tested out a new GPS tracker, as part of my reviewing side project, and created this map of our walk. Half way through the walk, we met up with our good friend Amy and walked the lower part of the figure 8 with her. Walking and talking. That's what we do.
I talked with them a bit about my reading today about the "number needed to treat" metric, something I'll likely post more about later.


"Suffering from MS" & The Affordances of Disease

I tend to think that how we say things matters a lot, and the phrase "suffering from MS" or "suffering from multiple sclerosis" has never really felt right to me. Of course, MS isn't the only thing that people suffer from, and it can involve a fair amount of suffering, but to necessarily and matter-of-factly introduce suffering into a linguistic equation seems pretty final.
If you've seen the short film about Kayla Montgomery or read about her, then you know that while she "suffers" from MS, Kayla also triumphs as a runner because of it. (Or at least she did when the film was made.) In the case of Kayla Montgomery, MS is taken up as having certain affordances that enable her to do things she could not otherwise do. When she heats up and her MS pseudo-exacerbates, she can run harder. 

An "affordance" is just a fancy way of saying a possibility or potential. The affordances of a thing are all the things that can be done with that thing, and when it comes to diseases in general and autoimmune diseases in particular, a disease might be said to have certain affordances.
This is a different way of thinking about disease, it seems to me, and it might not always work or make sense, but it certainly contrasts with the idea of only and entirely "suffering from a disease." When we suffer from a disease, it gets the best of us. When we discover and exploit the affordances of a disease, we find things we can actually do because of or with the disease. This may sound naively optimistic, but I like something about this kind of reframing. 
It may only be that some folks with Grave's Disease can pop their eyes, and while it may be nothing more than a parlor trick -- but it seems like an affordance of that disease that some have fun with and enjoy it. Kayla Montgomery finds that because of the way her heat-induced pseudo-exacerbations work, she can run through the pain.

For me, I'm still exploring the affordances of MS and working daily not to think that I'm "suffering from" this disease. There certainly has been suffering, and there will likely be more to come, but there have also been many calm and pleasant times between the rough bits. If I were to list three things that I've actually taken from MS and see as positive things, it might look something like this:
  1. a heightened commitment to purposeful living
  2. an understanding of my physical, emotional, and psychological limits
  3. a tangible, vivid realization that the future is unclear and may very well be unpredictable


My Big 8 (for living with MS)

In my immersion (almost a year now) in information about MS -- and here I'm talking academic journal articles featuring MS research, books about the disease, social network stuff, and several conversations with doctors -- I get the sense that there are two main ways people tend to think about treating multiple sclerosis: with drugs and with diet.


The doctors I've met with just want me to take drugs, and everyone "alternative" seems to be recommending a new diet. I get that, which is to say that I think I'm coming to understand those two perspectives. But I'm reluctant to think that everything important in terms of the treatment of MS can be boiled down to drugs and diet.


For nearly a year, I've been exacerbation free. This means no new symptoms, no episodes, no flare-ups, and no additional impairments. It's only been under a year, but I think (and believe) that this "good year" has had something to do with what I've been doing. Yes, I've attended to my diet. No, I haven't gone on any medications for MS. But I've also attended to a whole host of other things.
These are the eight things I've been doing/attending to in summary form.


For me this has meant restructuring my job away from the more stressful activities (administration) and toward the things that don't stress me out (research). It's also meant reducing stressors such as not getting enough sleep, not eating irregularly, or even getting a sunburn. Since learning I have MS, I've also learned to recognize stress in some pockets of my life where I was previously comfortable allowing  stress to lurk. Regular patterns of daily life, I think, help reduce stress -- and I've begun to follow those patterns, weaving my life around a stable structure.


Even my pill-pushing neurologists agree that low vitamin D levels are not good for people with MS. When I was first diagnosed with MS, I got my D levels checked (a simple blood test I ordered online) and mine came in under 20 nanograms/milliliter. That's low, which is not surprising since I've spent most of my adult life avoiding the sun due to a history of skin cancer. So my neuro recommended I get more D in supplement form, and my levels have come up. Getting more sun is an option for some, but I find the supplements are more easily regularized.


I've exercised regularly my whole life, so I didn't need to "start exercising" or anything like that when I learned I had MS. However, I did start exercising differently. For me, this comes back to what I said about stress. Whereas I used to engage in stressful forms of exercise (big workouts sometimes; extreme physical adventures at other times), I now workout in very patterned and predictable ways: I walk just under 6 miles every day, and I do strength training (a patterned workout) three days a week. I would not want to underestimate the vitality that comes from such a routine.


Again, this comes back to stress reduction in some ways, but since learning I have MS I've slept a lot more. I now regularly take naps during the day (sometimes even for just a few minutes), and I try to get to bed by 10 every night. This early bedtime (it used to be closer to midnight) increases the likelihood that I'll get 7-8 hours of sleep each night, and I like that. Sometimes, MS demands a nap or more sleep. But this patterned and planned approach to rest is my attempt to be a bit more pro-active, banking rest ahead of what can be my body's desperate need for it.


My relationships have been incredibly important to me, especially since learning that I have MS. In people I find support, recognition, questions, challenges, and accountability, and though it's a cliché, "I couldn't do it without y'all." I've also found that various online communities have been great places to get and offer support, so I'm glad to have stumbled upon other MSers online. For me, one of the biggest challenges has been getting to a point where I accept this disease; talking with people has been the best way to make it real and get to(ward) that goal of acceptance.


Multiple sclerosis is a complicated disease, and some key things are not entirely agreed upon in the scientific/medical community: namely cause and treatment. Of course, there is a good deal of research and knowledge, but no "one clear cause" or "one clear treatment." Perhaps because of this, there is as much variation in the non-medical community of alternative-medicine advocates. Some will tell you that MS is caused in the gut, while others will tell you it's a result of environmental toxins. While it's been hard to sort through so many voices and ideas about MS, I do think this work of taking in information has been valuable. I've found some consistent messages, for instance (Swank leads to Jelinek leads to Wahls), and that's reassuring. Particularly when meeting with my neurologists and opposing their recommended treatments, I've found information was essential to maintaining my well being.


Whereas I used to love to sweat, now I avoid it. Whereas I used to enjoy a pile of blankets at night, now I go for a thin sheet. I'll never take another warm bath again. I even avoid hot showers, and I feel much better because of it. I know that not everyone with MS struggles with the heat, but I know I do -- so staying cool has been a big plus. I've also invested in some "cooling technologies," and those seem to be helping.


And the last thing I'll mention is diet, because I truly believe that it comes last in importance after everything else. I've shifted to a blended adaptation of Wahls' suggestions, following a  strict regime of eating raw fruits and veggies, lots of omega rich oils and foods, and nothing processed and very little cooked. It's a low salt diet, as well, and one that works to vary foods by color and nutrients while still tasting good.

MS Inspiration ... and Construction Work

I don't think I've mentioned this on this blog before, but I fancy myself a bit of a builder. Melissa and I built our own house (chronicled on our house-building blog), and then I've built things such as my "boat barn" and more recently what I call my "backwoods shelter." 

When I'm building a structure, I guess I'd say I feel a sense of purpose, and clarity, and peace, and entirely consumed in the task. It's the feeling consumed that I like the most: it simply draws me in and I'm entirely part of the project until it's done. 
So it was reassuring and interesting for me to see, when watching an episode of the British home refurbishing show Grand Designs, that Angelo Mastropietro is another home builder with MS. This is a pic of his place: a cave house in Britain. 

If you haven't seen the episode of Grand Designs where Angelo builds his amazing cave house, the full thing is on YouTube here (at least for now):
The episode focuses a bit on Angelo's MS, giving him space to talk about a recent flare-up and then describing the cave remodel project as that much more amazing because of his disease. He works tirelessly on the house, especially during the excavation phase, and it's certainly not the typical representation of someone "suffering from" multiple sclerosis. But the physicality of building, as Angelo describes it, is relaxing to him and something he enjoys.
As as a follow up on this story: In the Grand Designs episode, the cave house seems to be presented as Angelo's future house. In other online features of the place, it's described as his getaway. Now it seems that you can rent out the case for just under £200 a night: http://www.therockhouseretreat.co.uk Seems like a cool place to stay.


What Optic Neuritis Looks Like (Halloween Edition)

If you haven't had optic neuritis, you might not know what it looks like. Or maybe I should say, you might not know what it's like to look when you have optic neuritis. 
I've had optic neuritis three times now, all associated with multiple sclerosis, and should say right off the bat that no two episodes (for me) have been identical. The first time I had it, it was "just" painful with no real vision loss. The next two episodes involved vision loss. (I've also suffered from diplopia due to a palsy to the 6th cranial nerve, but that's something for another post.) 
The following image, doctored in PhotoShop, is my best effort to show what it's been like for me to look through my eyes when I have optic neuritis. The image at left is full clarity, the image at right is my rendering of what I have seen when suffering from optic neuritis. Some people also have color blindness (of various kinds) when the optic nerve is inflamed and/or being gnawed on by the white blood cells, but I haven't experienced that. 

So at right you should see an image that is darker/dimmer, a bit blurred, and then inconsistent: splotches abound that are darker and lighter. Fortunately, for me, I've generally had one eye working while the other is dimmed and screwed up, so it hasn't been impossible to see. 
So what's it like to experience vision loss due to optic neuritis? Of course, I can only speak for myself, but in a word I'd say disorienting. Clichés like "You never know how much you rely on your vision until you lose it" come to mind. My job, I quickly realized, is entirely vision-based. And then the vision loss is not just optical, it becomes psychological, as it's a daily reminder of the larger challenges and causes associated with having MS. 
Fortunately for me, most of my vision loss has been temporary. (Yes, I'm knocking on wood while I write this.) Losing the ability to see in a periodic way is both unsettling and relieving: unsettling because you never know when it's going to happen, but relieving because it's tended to come back. Another cliché: today I can see clearly enough to doctor up some images in PhotoShop and post a bit about optic neuritis. It's a good day.  

Modified Wahls Protocol Diet

(This is a slightly modified and revised version of a post I put up earlier this year.)

The Wahls Protocol diet has been pretty hot in the alternative-leaning MS community for a while now, as it's the next thing in treating multiple sclerosis from a non-pharmaceutical perspective. Wahls certainly offers an alternative to traditional forms of treatment, which typically involve taking pharmaceutical medications. The "big thing" before Wahls came along was the Swank low-fat diet. And there have been other books focused on MS and diet, as well. All of these books are not entirely out of sync, though Wahls's project certainly has its own features and points of emphasis.

Most would agree that one reason the Wahls diet has gained popularity is because of her astounding TED talk. Even if you don't have MS or any other autoimmune disease, the TED talk is powerful and persuasive. The woman could barely walk before starting on her diet, and her approach to eating seems to have enacted a miracle for her. This is an era when talking well in the TED style goes a long way, and Wahls does a great job.

Before talking a bit about how I've modified the Wahls diet(s) for myself, as someone with multiple sclerosis, I should also say that I've written a detailed review of The Wahls Protocol over on Amazon.com. In that review, I attempt to represent the main themes in the book and cover what I see as her main ideas. I try to be measured in the review, though some of Wahls's rhetoric really drove me nuts while reading the book.

Note that Wahls herself doesn't really encourage modification of her diets, as she's pretty firm on the three stages/tiers of her diet plan. However, I'm in the midst of tweaking her suggestions and those of others to make my diet work for me, my health, and my version of the disease.

Here's My Modified Wahls Diet

Supplements, taken in the morning: Omega-rich fish-oil pills, B-complex, D3 supplement (now 5k units; will likely taper down on that soon), probiotic

Breakfast: Quinoa, homemade granola, berries, fruit, flax meal, hemp meal, cacao nibs, bee pollen, sometimes some coconut or almond milk

Morning Juice: Every other day (roughly), homemade juice made of 1 apple, several carrots, some celery, and miscellaneous greens (UPDATE: I'm not doing this much anymore, but would like to get back to it ... so am leaving this up as a reminder for myself to get back to juicing)

Morning Snacks: fresh fruit

Lunch 1: copious salad of dark greens, cabbage, avocado, colored veggies, onion, nuts, tofu, brewers yeast, oils (hemp, flax, olive), and homemade salsa

Lunch 2: same as lunch #1, but with salmon or tuna instead of tofu

Afternoon Snacks: more fresh fruit

Dinners: A lot like lunch, but often includes such things as roasted veggies, homemade humus, lentils, homemade soup, sweet potatoes, squash, and the usual array of oils (hemp, olive, flax)

After dinner snack: fruit (melon if we can find it) and/or chia in coconut milk

~ ~ ~

So, you can see that it's not exactly any one of the three Wahls Protocols. Her diets are all based on blended breakfasts, which I haven't really gotten into. She's also a staunch advocate of large-scale carnivorousness, and I'm very new to eating meat of any kind (having been vegetarian/vegan for the past 25 years). Integrating salmon and tuna into my lunches every other day has been a big step for me.

Wahls is also very measured in her eating: all of her staged diets include very specific volumes of dark greens, sulfurous veggies, fruit, etc. I'm not much of a measurer just yet, so I'm just eating quantities that feel right and conform a bit to previous eating habits for me. I want to eat what makes sense, but also what feeds me. I'll post in the future about my reflections/reactions to this new diet.

Having been eating this way for [several months] now, it's too early to say how it feels to me in a physical way. For me, what I'd described here is not a huge divergence from what and how I've been eating for the past 25 years. (I'm now 45.) However, there are some tangible differences in what I'm eating now when compared to my past eating habits, so I'm hopeful that there may be some positive results in terms of my health -- even if that means that things aren't getting worse.