The Skinny on the WAhls VErses Swank Diet (WAVES Study)

Last week, I drove 475 miles to The Preventative Intervention Center at the University of Iowa to participate in Phase 1 of the WAVES (WAhls VErses Swank) MS diet study. My participation will last 36 weeks, assuming I make it through Phase 1, the Usual Diet Phase. If I do, I will be expected to visit the clinic every 12 weeks through the conclusion.

The WAVES study is open to people with relapsing/remitting multiple sclerosis (MS) who experience MS related fatigue. The purpose of the study is to compare two dietary approaches to see which diet is more successful at reducing fatigue. The hypothesis is that consuming one of the study diets will reduce MS related fatigue, improve energy and improve quality of life.

The bias of the experimenters for the Wahls diet remains unexpressed in the literature they hand out to us lab rats. (Well, the nitpicky can find bias revealed in the name WAhls contributing the first two letters to the WAVES acronym, whist the name Swank is contributes only one. I am not that nitpicky.)

On my next visit, I will be randomly assigned one of the two diets, and must then commit to following that diet exclusively. The twist: my super indulgent husband will also have to commit to following whichever diet, at least for every meal he has at home. Because this is a blind randomized study, I can’t let the administrators know which diet I’ve been assigned. This means, gentle reader, I can’t let you know either, on the very off chance that the study administrators don’t have anything better to do than check an amateur blog. (This is where I lose you, dear reader, and you suddenly remember you had meant to be curing cancer at the moment. Godspeed!)

While I can’t help but assume that the WAVES study is biased toward the Wahls Protocol, since Wahls herself designed it, I myself do not share this bias. Well…maybe a teensy bit. A very healthy, very active, once diseased Dr. Wahls does make a fine case for her diet in her TED Talk, which I watched to its completion many years ago. I am sure there is an equally compelling case for the Swank diet in the book I couldn’t bear to finish, which currently collects dust on my bedside table. (The issue of my reluctance to fully research either study will make another blog post eventually. Or a podcast.)

If I do get assigned the Wahls Protocol, I will be happy, because it is so intimidating and involved, I feel I will need the challenge of doing my due diligence as a Lab Rat to actually see it through. (In addition, I can lean on the professional assistance of the study nutritionist, who will assign me the diet and will keep this random assignment to herself.)

If I get assigned the Swank Diet, my husband, for one, will be happier, since he’s concluded (from his 14 second scan of the description) that this diet is more in line with the one we already follow. I am going to need his support, so I would be grateful for an option he finds palatable

Here are the diet descriptions, straight from the 22 page consent form:

“One diet is a low saturated fat diet that eliminates beef and pork and includes whole grains, fat free dairy, vegetables and fruits (Swank) and the other is a modified paleo diet (Wahls Elimination) that eliminates all grains, legumes (e.g., beans), eggs, dairy, and nightshade vegetables (tomatoes, potatoes, eggplant, peppers) and stresses more vegetables and meat in the diet.”

If you were assigned one of these two diets, which would you be more willing to follow for 24 weeks?

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Six Months

Note from the Rat: Reading over this 2012 blog post from my vantage point in 2016, I am so grateful to the NIH (National Institutes of Health), which has continued to supply me with the MS medication I have depended on to keep my Multiple Sclerosis in remission. This medication, which I refer to as  DAC HYP, will (hopefully) go to market with the name Zinbryta. In these intervening years since I wrote this post, all that was asked of me was that I have my liver functions checked locally every six months, and that I fly down to the NIH every six months to have more extensive testing; more bloodwork, a lumbar puncture, eye exams, typical neurologic exams, MRI’s. The length of time it is taking to get the drug approved has been very frustrating to me, as I know more and more people who have been diagnosed with MS who have no access to the medication that has worked so well for me (one brain lesion in ten years, vs many tens of lesions in the ten years previous.) My very dearest friend with MS, Debra C.,  died while waiting for access to this drug. The only comfort I can take from this long wait is that I, and the privileged few on the safety arm of this study, have accumulated more living proof that one can take this drug for years and years and years with no major side effects.  So here it is, my blog post from 2012:

 

I’ve got 6 months left on the NIH (National Institutes of Health) trial of DAC HYP. After that, I might not get further access to the drug that has kept the progress of my multiple sclerosis (MS) in check for the past 6 years.
I didn’t panic when I was told the money just wasn’t there to keep the trial participants on the drug. I probably should have. As my sister reminded me, “You think you’re doing OK, but that’s not you doing OK, that’s you on the drug.”
She’s right.
I know, because I get monthly reminders of me-off-the-drug. I can only inject DAC HYP once a month, but the effect usually seems to last only three weeks: the week preceding a fresh injection is a drag. Literally. I pretty much just drag my body around, propping it up until my next dose of DAC HYP, when the “real me” can take over again.
What will I do when there is no next injection?
I may be left dragging around a husk of myself until such time as the FDA approves the commercial release of DAC HYP. That process may take as long as two years.
How much damage can multiple sclerosis do in two years?
I can’t afford to find out. My central nervous system has undergone punishing damage already, from the many years I was on no drugs, followed by the many years I was on bad drugs.
Everyone I tell about the upcoming DAC HYP discontinuation has urged me to take another drug in its place. If I had thought there was a more effective drug out there, I wouldn’t be taking a trial drug, would I?
I’ve had plenty of disappointments with other MS drugs.
Some new ones have come out since I started my trial, and maybe those drugs will prove effective. Or maybe they’ll prove lethal. People have died on MS drugs. At times, my MS symptoms have been bad enough to make me indifferent to such a risk. The “real me”, the one on DAC HYP, doesn’t feel that desperate. We’ll see what happens when access to the “real me” runs out.
Somehow I’ve never envisioned a life after DAC HYP that would include sampling yet another MS medication. I’ve been hoping, I still hope, that I would live to switch out DAC HYP for the actual cure.
You see, I don’t want to medicate my MS. I want to vanquish it.
I’m not the only one. There is talk of an MS “cure.” It’s somewhat hyperbolic, but it’s also compelling. Dr. Wahls, a neurologist in Iowa City, used to suffer from a particularly aggressive form of MS that was rapidly debilitating and drove her into a reclining wheelchair. She fought back by eating every “brain food” she could think of, and by exercising as much as was physically possible. I wouldn’t say she is “cured” now, because I bet her lesions didn’t disappear, but she is certainly doing very well. She can stand for the duration of a TED talk. She is also biking to work, she is practicing medicine full-time, and she is starting a clinical trial to examine the effect of diet on MS. It could be, as she claims, that she has reversed a case of progressive multiple sclerosis. I hope so. Or it could be that she’s on the remitting cycle in a mislabeled case of relapsing remitting MS. I’ve ridden on the high of those cycles, myself, exercising like a fiend on my borrowed time. I’m sorry to say those times don’t last. I wish her the best. Especially since, in six months, the Wahls diet may turn out to be the best option I’ll have left.
But why wait six months?
I’ve been eating aggressively healthy brain food ever since I first heard of the Wahls diet, but now I will start eating healthier still. (This prospect terrifies my husband, who claims I already eat healthier than anyone he knows)
I am perfectly willing to trade DAC HYP for eight daily platefuls of kale, if that would help me. I am perfectly willing to lift weights, swim laps, and practice yoga with twice the intensity of my normal schedule. Indeed, how could it hurt? I can foresee only one downside to this course of action. I know I am perfectly capable of blaming myself for not trying hard enough if—or let’s face it, when—the disease strikes again.
Would blaming myself be so healthy? I don’t think so.
A number of good people have approached me to ask what I “do” to remain so healthy with MS. I say I exercise, I say I eat well, I say I do yoga. They tell me I have a “good attitude.” They tell me others, those sicker with MS, do not. That may just be oversimplifying things.
Here’s the deal: I’ve had access to a good drug. Others with MS have not. In six months, I will join their ranks. We’ll see if a mix of a “good attitude”, a good workout routine and good diet will be enough to see me through until DAC HYP goes on the market. I’m sure it’s all very necessary. I can only hope it will be sufficient.

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The Answer

In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.

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Visualization 3.0

My third draft of the Visualization essay, with thanks to Jeff Groh for coaxing out another thread:

For all my adult life, I’ve done my best not to be defined by multiple sclerosis (MS). It’s easiest to escape other people’s pity, and other people’s judgments, if they don’t know I’m disabled in the first place. Because I have relapsing/remitting MS, most of the time I can still get away with passing for a Normal. But only to the untrained eye.
No matter how gracefully I walk into a neurologist’s office for my annual evaluation, the dreaded heel-to-toe test invariably punctures my façade.
As soon as I place one heel directly in front of the other foot, I start to sway. My arms float up, like a gymnast…a gymnast on the Titanic. I tilt toward the left. I regain my balance…for one brief hopeful moment. I tilt toward the right. My legs start to buckle. Then twist.
It’s all very suspenseful.
Inside my atrophied little brain, I’m reminding myself of all these tricks I’ve been taught at yoga. I press into all four corners of my front foot. I root down into my tail-bone. I lengthen my spine. Oh yes. I breathe.
I lift my back foot. Gently swing it around my front foot. Start to set it down…
Oops.
Not again.
I tilt toward the right. A little too far. I break my fall…by breaking out of heel-to-toe.
Inside my atrophied little brain, I’m thinking that losing my balance is all my fault. I wasn’t…yogic enough. I didn’t make the right mind-body connection. Of course! Mind-body connection! Why didn’t I think of it sooner? What I should have done was visualize myself walking down the hallway.
Visualization. That’s the ticket.
I request another try.
This request typically inspires a panic.
“Oh, no, no, no. That’s fine. You don’t have to do that one over. I’ve seen enough.” And I wind up feeling like an out-of-work actor who has just asked for a re-try on a crappy audition.
The first time I took the heel-to-toe test, I made a lame joke. “I guess my tightrope walking days are done.” The joke fell flat. My stand-up comedian days were dead-on-arrival. Fine. I don’t want to play the role of the wisecracking patient with multiple sclerosis. I don’t want to be in that sitcom. Or even on that channel. I’d rather be on the yoga channel, floating two feet above the gleaming wooden floor without even noticing, a tiny, enigmatic smile on my placid face.
Yeah, right.
As soon as I got diagnosed with multiple sclerosis, I got it into my head that I could fight off the disease by learning yoga. My first yoga instructor told me I was being unrealistic. That was sixteen years ago. A lot of people with MS don’t last this long without ending up in the wheelchair. Maybe I’m still walking because I have a more mild form of the disease. Or maybe I’m still walking because of yoga.
I wish I knew. I just can’t say. I don’t have a control group; a clone or a twin sister with multiple sclerosis who thinks yoga is a complete waste of time.
What I can say is that my expectations for my balance are consistently higher than my performance in the heel-to-toe test.
My performance in my normal daily routine can be fairly convincing. I pass for a relatively fit healthy woman at least 90% of the time. In public. Before 8 pm. But still. I’ve got a good façade going. I’m fond of it. I don’t want that façade punctured. Which is why I don’t like the heel-to-toe test. Not one bit.
I never thought I could ever meet a person who could make my objections to the dreaded heel-to-toe test seem petty. That was before I met Dr. X.
I wasn’t supposed to be meeting Dr. X in the first place. My appointment was with Dr. Y. It so happened that Dr. Y was running behind, so she sent in a resident. Into the examination room wheeled…a black man…in a wheelchair. To see me: a white woman who felt irked every time she was asked to take the dreaded…never mind.
The instant I saw him, I realized I was operating on a cruel assumption…the assumption that losing my balance was a failure of my willpower, rather than just a manifestation of a cruel disease. I would never assume that this neurologist was a failure for being in a wheelchair. Why then, did I consider myself a failure for flunking heel-to-toe?
When Dr. X had me take the heel-to-toe test, I failed it, as usual.
But this time, failing the heel-to-toe test felt fairly privileged. At least I wasn’t stuck in a wheelchair. Dr. X would trade places with me in a flash.
Or would he?
Was Dr. X’s life really all that bad? Is mobility, or lack thereof, the decisive factor in anyone’s quality of life?
As we chatted afterward, I came to see that Dr. X’s life was actually pretty good. He was nearly done with medical school. He was on the verge of a lucrative career. He had a job lined up for him in his home state, where he could live near his beloved family of origin. His upcoming move wasn’t all he was looking forward to; he was getting married in a few weeks. His honeymoon plans included snorkeling in the Caribbean.
My atrophied little brain thought it appropriate to mention a book I’d just read, The Body Has a Mind of Its Own. I enthused about the data showing that visualization could improve sports performance, and shared my plans to visualize walking down my staircase without using the banister.
Dr. X’s response? “Use the banister.”
I take it Dr. X doesn’t visualize leaping out of his wheelchair. Or passing heel-to-toe tests. Dr. X is more focused on what his brain and his body can actually do. I’ll be the first to concede, his brain and his body can do quite a lot. So much for visualization. Maybe there’s something to be said for looking around, and seeing the world clearly. The world is a beautiful place, from any perspective. I bet the world looks spectacularly beautiful while snorkeling in the Caribbean.
Altogether, I left my examination with Dr. X a little less fearful, and a lot less judgmental, about the likelihood of my ending up in a wheelchair. I figured I was done freaking out about flunking heel-to-toe.
The funny thing is, the next time I took the heel-to-toe test, I did pretty well. When it was time to begin, I looked down the hallway, and thought, screw visualization. But some habits die hard.

I automatically deployed those tricks I’ve learned at yoga. I rooted down into my tailbone. I lengthened my spine. I breathed.
I pressed into all four corners of my front foot. I lifted my back foot. Gently swung it around my front foot. Set it down…
I didn’t tip.
I just kept on going.
One step. Two steps. Three. Four.
One foot in front of the other. Like any Normal would do it. Five steps. Six. Like any Normal moron. Seven.
My legs buckled. I swayed.
Eight.
I had to break out of it, or fall.
Old habits die hard. I called to my neurologist, “Sorry!”
And felt instant self-loathing.
My neurologist tilted her head. She looked puzzled. “What do you have to apologize for?”
Exactly.
Would Dr. X apologize?
I don’t think so.
“You’re right.” I agreed. “I have nothing to apologize for. So I flunked the heel-to-toe test. I have MS.”
She was still looking at me funny. “Actually, you didn’t flunk it this time. Your score was perfectly normal.”
Normal! Precious Normal!
That was just what I wanted, right?
Instead of feeling satisfied, I felt chagrined. I will only truly pass the heel-to-toe test when I don’t define myself by the results.

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