The Continental Divide and The Boomerang by MTM photo 1

Shortly after moving to Portland, I began a quest to get an appointment at Oregon Health and Sciences University Neurology Department. I knew them as the department where Dr. Roy Swank had once been chair and also as the place that had conducted a study of patients with MS on the McDougall Diet. I had corresponded in e-mail briefly with one of the doctors involved in the study while it was ongoing in an effort to tell her about my blog. I called hoping to find a way to see her as a patient.

The process for getting an appointment involved sending my medical records and waiting for a review process to take place. I began that process, and then I waited. After several weeks I called to inquire, only to discover only one page of my records had arrived. The rest had been lost or had not gone through the fax machine and on to the right person.

I started the process over again, with a different fax number. This time I was told the review process would take a couple of weeks and I would be notified. After 3 weeks I called again and it seemed that they were ready to set up an appointment with me, but it wasn’t with the neurologist I had hoped to see. I was told she was no longer accepting new patients.

When the day for my appointment came, Mike drove me to the large off-campus building down near the Southwest waterfront where the MS Center is located. When I got off the elevator, I found myself turning into a reception room with plate glass windows that overlooked a panoramic view of the city. And within that view was the track for the Portland Ariel Tram, which runs about every six minutes nearly every day of the week, providing whoever wishes to ride it with a scenic ride over downtown Portland.

It was a spectacular opening to what I had hoped would be at least a somewhat spectacular appointment. It did turn out to be a rather life-changing appointment, but not in the way I had originally hoped.

First of all, when I checked in at the desk, I discovered there was a very extensive patient intake form that was supposed to have been sent to me in the mail, but which I never received. My head still reeling from finding the elevator and the actual office while Mike looked for parking, I sat down and tried to compose myself to answer many involved questions. But I had hardly been sitting a minute when I was called in to begin my appointment.

I am not good at answering questions on the spot about myself that I haven’t had time to think about. As I fumbled with the paperwork, my coat, and Romeo’s dog leash, I comforted myself with the fact that at least some of my history was now on the record with them.

But when the neurologist came in to see me, she informed me in a tone of almost irritation that there was only one page of medical records for me. This would have been the one appointment I had in 2014 after switching to a family practice in Moscow I could walk to from my new house there, since my long-time doctor had retired a couple of years before that, and the nurse practitioner he had recommended I see had also left. None of the records I had asked for in person over the phone had ever been received on the OHSU end and no one had bothered to tell me. The neurologist basically saw me in a medical record vacuum. There was no record of my original MRI, which is the only one I have ever had, because nearly 20 years ago it wasn’t general practice for patients with MS to have routine MRI’s, and it wasn’t something I could afford regularly anyway. Much of the cost of the original one was not covered by my insurance, and was eventually forgiven. It was a kinder, gentler time.

So without a properly filled out patient intake form or a history of my last 20 years with MS, the rather business like neurologist had to rely on my rather spotty ability to give her a personal narrative. I told her I had wanted to come to see if I could be a patient at a place where plant-based eating was at least known about and encouraged for some people with MS. I asked if she was familiar with the study. She said that she was. She also confirmed what I had seen on the McDougall forums: that although the patients with MS that participated in the study reported feeling better and having more energy, there had been no change in their before and after MRIs and thus no clinical evidence of any halting of the progression of MS. In addition to that, I learned no further studies were planned. This neurologist also volunteered her particular discomfort with the design of the study, which she did not consider rigorous enough.

I went through the physical neurological exam. I did better on all of it than I ever remember having done, and my walking time was considered “within normal range.” The doctor didn’t seem to take into account, however, as my long time doctor had, that Romeo was there the whole time and walked with me.

She didn’t disbelieve that I had been given the diagnosis of MS, but without medical records and original or follow up MRIs, she said she couldn’t be sure the symptoms I described could be attributed solely to MS.

Many people are very happy to hear they have “passed” as normal enough to elude a medical label. But the particular way this happened was actually very disturbing to me. First of all, I felt that OHSU had not done the due diligence they should have in following up with me about whether my records had arrived, especially since I had confirmation that they had been sent twice, and to the numbers I was provided with each time. Instead they just gave me the impression they had. And while the neurologist was not unkind, and I think she did understand I was telling the truth, she was the kind of exacting practitioner that wants to see clinical records as evidence. Regarding the life-long diagnosis of mild cerebral palsy, she didn’t even seem to believe that the decision made when I was 10 that I only needed to wear my brace at night could be accepted anecdotally. The orthopedists I saw who thought so and who are either long dead or retired didn’t seem to matter because she had no clinical record of it. My personal narrative, the pieces of it I could pull up on the spot, didn’t seem that convincing to her.

This appointment occurred right before Thanksgiving. So right after it, once again, I called the family practice where I had been seen for 17 years of my diagnosis to ask for my own copy of my medical records. I needed whatever  clinical history was available to hold in my own two hands, to say it was real, and to figure out how to present it next Fall when I am to be seen again.

Parts of that history are now gone forever, including the initial MRI that provided the diagnosis of MS, because it was all on paper records in the second half of the 90’s and no one seems to have kept the paper records at any of the doctor’s offices or the imaging center where the MRI took place when they went digital in 2000. But I now have a CD of 12 years of office visits and lab work from 2000-2012. The woman in charge of patient records was trying out a new technology to place records on a CD in a more workable format, and mine was the first test of whether the CD would be readable.

Fortunately, I could open the CD, and so I began reading backwards from 2012 what my doctor said about my visits all the way back to 2000. It’s odd to read your medical history backwards; nevertheless I saw documented evidence that I had improved with my way of eating and that the doctor saw it as a causal agent. That awakening in him had been gradual, but it was definitely there. There, too, were things I had struggled with: weakness, fatigue, and then the improvement in walking when Romeo came to me.

Missing is the swallow study that documents problems with my throat tiring or food going back into swallow too soon (I recently found a copy of that in a copy of my original Social Security application). Gone are the times I was so dizzy I had to crawl across the room. And absent are things I never told the doctor much about, because I either didn’t think of them at the time, or didn’t want to have to say them out loud.

February 14 it will be 20 years since I received the diagnosis of MS. I’ve had the diagnosis of mild cerebral palsy nearly all my life. The neurologist wasn’t impressed with a diagnosis of fibromyalgia given to me back in 2009 based on the pressure points, and I saw that my doctor may have not made a note of it at all in my file, though he definitely said to me that I had it.

I’ve never been one to really focus on clinical findings about myself or let them define me, but it was a little like as if I had suddenly found myself on that ariel tram, my legs dangling into the air with nothing to stand on while I looked out over a vast and strange new panorama. (Or maybe it was more like riding the ski lift up to the continental divide in the Rockies with my Dad when I was 17. My Mom and sister were afraid to ride the ski lift with us, but I had wanted to go with my Dad and be at that highest point in the continental United States, as if in so doing, I could see down both sides of the mountain range at once. There was no ground, but somehow the entire vista was the ground. The ride up to the summit is what  makes the summit worth getting to.

And now parts of that vista have gone missing, at least in official form. Along with a copy of the swallow study, I did find a copy of the letters my neurologist wrote dated the Valentine’s Day 20 years ago when he gave me the diagnosis.

“Ms. Maggi returns for follow-up of her new left-sided weakness with recurrent bouts of fatigue. We sent her for an MRI of the brain to look for evidence of multiple sclerosis. The MRI does show white matter lesions along the periventricular frontoparietal area with an orientation that is highly suspicious for multiple sclerosis.”

In a previous letter he writes that although he does see the cerebral palsy on the right side, and is concerned with my report that my left sided symptoms worsened with mild elevations in body temperature, he is ordering an MRI, but expects it to come back normal. So this finding is a bit of a surprise. Perhaps the new neurologist I saw in November would be vindicated by his diagnosis, which reads, “at this point, we would diagnose her as clinically having probable multiple sclerosis.” He goes on to say that given the relatively new onset of symptoms, he does not think I am a candidate for Betaseron, and therefore would hold on a lumbar puncture, since we had decided not to pursue “an aggressive therapy.” He recommends a year off of work, to see if the symptoms will improve. As it turned out, I did not improve enough in a year to return to work.

Neither did I return many more times to see this neurologist, since he was 90 miles from home, and I couldn’t drive. Besides there was also this reason, which I dramatized in my poem “Diagnosis”:

First time a doctor was younger than me.
He had to deliver such huge, hard news.
Second time we ran late for ninety miles.
The extra traffic on the interstate,
my bout of vertigo at the rest stop.
We’ll be there soon. The secretary
was nice on the phone but when we got there
she said he won’t see you today. You’re too late.
We fussed.  They relented. When he came in
the examining room, he started to talk
about the importance of coming on time.
I looked at him and said I’m sorry I’m late.
Do you think you could have a little compassion?
He looked down at his shoes to change his world.

–from If A Sparrow

Whether deemed clinically “probable” or not, the conditions we live with each day are real to us, just as the journey we make to improve those conditions can also come to define who we are.  Instead of focusing on the records to tell me the truth about myself, I had decided long ago to learn to listen to my body and try to follow its truth. Now the records have become so old or obsolete they have been deleted, without my knowledge. Those that remain reveal practices that are no longer considered current or, possibly, rigorous enough. Once again, I need to go to another level of courage to believe in the truth of my own story.

Lots of people have told me I should write a book from the entries in this blog. I’ve thought a lot about that, but silly as it sounds, I just couldn’t conceive of what the book would really be about other than a string of these stories I tell about my slow motion miracle process. But perhaps I am beginning to get a handle on why I’ve written these things down in journals and then here on the blog in the first place. The phrase that first came to me is “to affirm where I am in space,” which, I guess, is  another way of believing in the truth of my own story. Here, now, with my feet hanging over a vista that includes the loss of medical “proof,” a definition which seems to shift with the changing times, that intent seems more important than ever.

My watching of NOVA has helped me understand that space and time are not truly separate, so I guess I would amend that to “affirm where I am in space-time.” That’s especially important now that I know some of these original records will never reappear. Even my plant-based eating cannot be attributed to discovering Dr. McDougall or Dr. Esselstyn or Dr. Gregor or any of the other doctors. I simply decided after reading Dr. Swank’s MS diet book that I would try to do it vegan because it felt like the right thing to do. It was only months afterward that I stumbled on to what these other doctors had to offer, which helped me taylor an eating plan that was right for me.

I’ll never be a Star McDougaller. I need to do things Dr. McDougall discourages or opposes outright, like be sure I have that ounce of two of certain nuts and seeds (especially flax), and take vitamin D, especially in the winter, if I want to keep moving my joints without them becoming as brittle as twigs. And after my appointment at OSHU I know I won’t be part of a study they don’t plan to continue, and that they consider a plant-based diet only one of the many ways for MS patients to eat healthy, and one of the more difficult ones to follow, I might add, so all I’ll get is a general appreciation and encouragement to keep doing what I am doing. That’s the same thing the general practitioners I’ve seen say.

Even though I do not have all the records to prove it, or the exact plan from any one doctor’s advice to engender it, the changes I’ve seen in my slow motion miracle process are real, just as the difficulties are real, and the way they  have improved or the way I bounce back when they flare up are real,  too. Also real is the knowledge that if I did not take care of myself by eating this way I would go right back to being unable to hold a book open,  or the phone up to my ear, or keep my head erect without the support of a pillow. And that’s why I write about them here. To keep a record of what has been real for me in a multi-dimensional healing process as I’ve learned how to manage my serious conditions with food and a slow-paced lifestyle. It’s been my honor to share that record I keep here with such generous and supportive readers. The pieces of history I share here may not be the entire record, but they are the pieces of it that have come forward in my mind’s eye and heart to be remembered by writing them down, because they are the evidence that makes my experience authentic to me. That, it seems to me, is as important a summit as reaching the continental divide, or following up with MRIs that may or may not show what a neurologist sees as evidence.

As is always the case when living with cognitive slowdown, the perfect clarity of answers boomeranged back to me long after this appointment was over. It isn’t that I have foggy thinking, as one of the questions on the intake formed asked. It’s that my thinking about things goes slowly–and the more stimulation there is in the environment, especially surprise stimulation, the slower the cognitive processing goes. This was a great relief to understand at last. It’s all still there–it’s just going very slowly at times along a rather bumpy pathway. I’m not missing anything. I just have to be patient, and eventually whatever I need to know will arrive. That’s why I’ve given myself the weeks/months it’s taken me to articulate this blog post.

The same neurologist who diagnosed me with “probable”  MS 20 years ago left the Northwest a long time ago and practices in the Atlanta area. But I think he would agree with me that this style of cognitive slowdown or motor performance in the face of high stimulation environments is an overload for a damaged nervous system, and is thus a telltale hallmark of MS. In fact he is the one who first explained it to me that way, in addition to saying “I’m 95% sure you have MS.” And now, after 20 years of living with it, I know it’s true in my cells. This is the kind of record that can’t be discarded. This is the kind of record I live by.

I know many of you tell me how inspirational  my posts are for you, and I’m always happy to know that. But it’s also true that this inspiration sometimes springs from righteous anger that the truth of individual experience is not valued as a component of healing or even as a valid record of what has happened. “Patient reports. Patient describes. Patient denies. . .” such odd wording. Answering “no” to having a particular experience comes to mean instead that you “deny” it, as if it is testimony before an invisible grand jury. That denial somehow implies that you may in fact be having it and yet not know you are having it. It’s so sad and un-life-affirming.

So here I go into 2016, my 20th year of living with a condition people call Multiple Sclerosis. The neurologist I saw at OHSU postulated mine might be “benign.” Maybe she is right. But she has never seen me choke, or struggle to get across the room, or not be able to project my voice, or drop something out of my hands all of a sudden, or fall when I legs buckle under me, or lay on the bed while the room spins, or any other number of symptoms that are now more “benign” because of the way I eat, the help I get from my dog, and the pace at which I live. I’m not a person who likes to waste energy on anger, but that makes me mad.

However, I know I am not alone in experiencing this tendency of medical professionals  to invalidate anecdotal history and success with controlling symptoms without medication. For example, in Norman Doidge’s fantastic book on neuroplasticity, The Brain’s Way of Healing, he begins with a chapter about a man with Parkinson’s, John Pepper, who taught himself how to control his motor symptoms with a practice of conscious walking he devised himself. In the course of his story, despite complete medical records from his original doctor and neurologist, other neurologists were engaged by a support group he was part of to discredit his personal method of improvement, despite the fact that he was clear to say it was not a cure, that it didn’t make all his symptoms disappear, and that if he didn’t follow it regularly, the motor symptoms that did improve would come back.  Nor did he advocate patients come off their medication, although he himself had slowly succeeded in doing so over a course of years. They wanted to insist that he could not have had Parkinson’s to begin with. They succeeded in having him and his program and the book he was writing ousted from the group.

But that didn’t stop him. He went on, surmounting yet another misdiagnosis of an auto-immune condition, and the death of his wife by heart attack, coming back to his walking program each time other circumstances in his life have pulled him away from it, and worsened his Parkinson’s motor symptoms. And each time he returns to walking, he improves–again.

Dr. Doidge writes that “Walking, so natural, so ‘pedestrian’ (in the sense of ordinary), may not be a high-tech neuroplastic technique, but it is one of the most powerful neuroplastic interventions. When we walk fast, regardless of our age, we produce new cells in the hippocampus, the brain area that plays a key role in turning short-term memories into long.”

It’s sad that the neurologist I saw didn’t take into account my own regular walking program with Romeo as part of the reason my neurological exam may have gone so well. I had expected more from this place I had thought of as “pioneering” lifestyle treatment for MS.

Now that I think of it, it’s also sad that several years ago, the moderator on the McDougall forums was quick to be a mouthpiece about how nerve damage cannot be healed when a member with MS following the McDougall diet wrote with joyful enthusiasm that she had been able to run after a long time of not being able to. He chose, or maybe was instructed to mimic, Dr. McDougall’s careful party line about whether nerve tissue can heal or regenerate.

Reading Dr. Doidge’s two books, I now know neuroplasticity is much more complex than that, and while it can certainly be helped by what we eat, how we move and many other complex factors are also at play. Yet we still live in a world where most doctors, even ones who advocate healthy lifestyle choices, still rarely see beyond their own area or special agenda, beneficial though it may be. Thinking outside the box all too often simply implies another box has been constructed.

Each time I visit a doctor’s office, I will have to continue to stand up for myself and the individualized lifestyle choices that have helped keep me mobile. It may be true that the spotty medical records have “boomeranged” some potentially problematic consequences my way, that is if I see my story only in terms of what they see. Instead, though, I’ll do my best to think of my story not as the verb “to boomerang,” but the noun, which means, “a thrown tool,” “a curved flat piece of wood to be thrown so as to return to the thrower.” I throw my story as a tool, to hunt the truth, and help it return back to me.

Happy Valentine’s Day, Dear Readers. Just like my favorite song from the musical Damn Yankees, you give me heart.

Maria (moonwatcher)

 

 

, or if there is ever again some question about whether after all these years I deserve the benefits I paid into the system to receive

 

 

{ 21 comments }

Tempeh Sticks with Mustard Marinade

Before I tell you the story of the little transgression that gave rise to this recipe post, I want to remind you that my nutritional choices are based on my own subjective experience, which is dynamic, and can change over time. Therefore, it’s not medical advice, or even advice that strictly conforms to any one plant-based doctor’s eating plan. It’s just my account of living my experience of daily life and what I like to eat or cook to stay healthy. Beneath it all is the framework of Dr. Swank’s Diet for MS, again, with my own personal twists: eating vegan and cooking without oil. Sometimes, though, I post a recipe which contradicts with the subtitle of my blog banner, which reads:

Living Well with MS. Fat Free. Gluten Free. Soy Free.

This is one of those times. So I’ll tell you the story from my point of view, and also offer you a soy free option if you are so inclined.

As it turned out, in the 24 hours I celebrated my 60th birthday by eating out twice, both the Proper Plate and the Harvest Bowl I ordered had baked tempeh sticks as components. And as is always the case when I go to a public place, Romeo was at my side. He is a pro at waiting patiently while we humans sit and eat. As he’s gotten older, though, I make sure to bring him something soft to nap on, since the cement floors of trendy eateries can be very hard and cold for a streamlined aging body type like his. When we’re at home, like any good friend, he often waits to eat his own food until I’m eating mine. I’m so used to this, that even though it’s the last thing I should be doing in terms of being professional, I couldn’t help but slip him a few black beans and bites of tempeh as part of my birthday celebration. I kind of did it without thinking, like you’d share tastes of what you ordered with a friend.

I don’t usually cook tempeh at home, but Mike and Kelly make it a lot, and I’ve come to look forward to eating it at their house. Since I’ve moved to Portland, I’ve also discovered I can buy some that is locally made at the Alberta Cooperative Grocery near where I live. Since I enjoyed it so much over my birthday, this week I decided to try some of this local tempeh out at home. I threw together this mustardy marinade, and cut up the sticks to coat them in it while we went for a walk before dark.

Romeo is not a voracious eater, and he rarely actively lobbies me for whatever it is I’m cooking. That was mostly the former” job” of our golden retriever Tinne. She loved winter squash, and would lay herself down next to the back door near the stove and literally wait for it to come out of the oven. She’d eat the skins and anything else I’d give her. (She also used to steal pears off my pear tree.) I still sometimes think of her fondly and her digestive system that was akin to a garbage disposal when I’m scooping cooked squash out of it skin. Romeo, on the other hand, is largely indifferent to squash. He prefers sweet potatoes, but even those he rarely lines up for.

But this week after those clandestine bits of birthday tempeh, I discovered what he WILL line up for in the kitchen–the smell of marinaded tempeh baking in the oven. As I’ve written about before, though I don’t often post recipes using soy, as I get older, the extra calories, protein and plant estrogens in edamame, tofu, and tempeh seem to be very good for me.  One of the reasons I rarely buy tempeh, though, is that I don’t always want to eat it all myself. But now I know I won’t be eating it all by myself anyway, even if I’m the only human in the house. In fact keeping it around for more than a day or two might end up being the new problem.

Whether or not you are a crazy dog lady like me, sneaking food to your service dog in the restaurant when you know better, I’m sure you will enjoy this savory slightly spicy sweet low fat oil free marinade. If you’d rather use tofu, or even cauliflower steaks, I think you could spread slabs of those with this marinade and bake it too. I’m not sure the soy free tofu recipe I’ve posted would hold up to this kind of baking, but you could give it a try if you’re game.

 

Maria (moonwatcher)

{ 19 comments }

On The Street

January 16, 2016

In the short time I’ve lived in my neighborhood, it’s given me a lot of vivid lessons, both in its history, and in the now of its very sharp contrasts. Earlier in the year I expressed some preliminary insights into the experiences I was having in a couple of previous posts. Here are a few […]

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Gateway to the Sixties

January 12, 2016

The last time I can remember seeing the ocean, my son was just 8 years old. We had only been in Moscow a couple of years. My friend Joe knew I missed the ocean, so he suggested a weekend camping trip out to the coast. Brave man that he was, he was also willing to let […]

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Eight is the Magic Number

December 28, 2015

Back in the days when all of us little girls were read Cinderella over and over many times, shoe size was a marker for femininity. Small feet were considered dainty and especially feminine. I remember wondering what it might be like to have a tiny foot simply slide right into a beautiful glass slipper, have […]

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Vegan Christmas Biscotti Redoux (and Do You Hear What I Hear?)

December 19, 2015

Why, might you ask, would I revise a perfectly good Christmas Cranberry Biscotti recipe? Well, rest assured, my gluten free readers, it’s not because this recipe is any better than that recipe. It’s partly because I had some spelt flour I wanted to use, and mostly because I couldn’t find any almond or cocunut or […]

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A Beautiful Day in the Neighborhood

December 8, 2015

  When I first met the neighbor who is building this nifty zero impact house, she told me about an online community called Nextdoor. I signed up for it in my neighborhood, but haven’t posted anything, preferring instead to read posts that caught my eye and learn from them. On our morning walks, Romeo and […]

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One Bowl Mix and Bake “Pumpkin” Millet Pudding

November 23, 2015

One of the things I’m most thankful for each Fall is that it’s time to eat orange food. And one of my favorite orange foods since I was a little kid has always been winter squash. If I’m going to eat it for dinner, either stuffed or right out of the skin, two of my […]

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My Love Is A Red, Red Umbrella

November 15, 2015

Last Sunday my next door neighbor came over to go down into the basement with me to get some extra newspapers to help protect the floor when her new kittens arrive. She also offered to help me put the insulated cover of my patio spigot. It was raining pretty steadily and Romeo and I had […]

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A Different Kind of “Before” and “After”

November 3, 2015

  Recently a group I’m connected to on Facebook posted a mad flurry of “before” and “after” photos of folks successfully eating the low fat plant-based way. All of these involved weight loss, lots of them very dramatic. What’s going on?  I wondered to myself Where is all the food?–since that’s often my favorite part […]

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