A Day in the Life at the NIH Triali

Nothing ever goes exactly as planned in the NIH. This is an observation, not a criticism. Sometimes, a change in plans works to my advantage. When my husband and I arrived promptly for my seven a.m. appointment, I was told my eight a.m. MRI would have to be rescheduled. There weren’t enough technicians. My husband and I are adept at such situations. My body’s fickle insurrections have given us plenty of exposure to the changing of plans.

My first appointment was to review the revised consent form with the magnetically charming nurse Naomi. Within five minutes chatting over the forms she’d told me enough about life in DC for me to recommend Chimamanda Ngozi Adichie’s novel Americanah. As it turned out, Naomi had read that book and loved it, loved it so much she’d read it non-stop through a red-eye flight to Dubai, forgoing in-flight movies, forgoing sleep.

It was Naomi’s job to inform me that I would not be getting better care at the NIH than I could get at my local neurologist. I adore and admire my local neurologist. But I ask any of you with MS: does your neurologist have time to assess your condition for four hours? The level of care just does not compare. And more importantly, my visit to my local neurologist is designed to help only me. An NIH visit is designed to help multitudes.

Naomi told me I might be eligible to be paid $200 for my spinal tap. (There is usually no payment involved in a clinical trial, just reimbursement for food and travel.) I was open to this change of plans.

After I saw Naomi, I saw Dr. W. The last time I’d seen her, she’d been displeased by how easily she could push against my leg. She’d uttered one syllable, “weak.” I’ve been working  on my leg strength ever since. This visit, I gave her sufficient resistance. But she simply gave me a new area to work on. “You have shitty balance. You can improve that. Practice!” I’d improved my strength. You can bet I’ll improve my balance

Dr. W proposed a change of plans even more extravagant than Naomi’s $200 compensation. She noticed I’d just had a spinal tap the year before. She consulted the timelines of the studies I’m in, and declared I wouldn’t have to have a spinal tap this year, after all. This piece of news was an order of magnitude more exciting than the prospect of a spinal headache, and two hundred bucks. “I am your advocate,” she declared. We fist bumped.

Next came  the auxiliary scales. I performed the same battery of tests I always do—I did worse on some, better on others—all in all, it seemed a wash. Dr. W will be calling me next week when the data is in.

Further updates on this visit will have to wait until tomorrow. I am tired, my legs are crawling with electric pain, and my husband and I are planning to get up early and take the Metro into DC tomorrow to visit a museum.

Thanks for reading!IMG_0049

#WEGOHealthAwards

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TRAP Reboot

My husband and I are waiting at our gate for our flight to Dulles. I’ll be back at the NIH (National Institutes of Health) tomorrow morning at 7am to start anew with the TRAP trial.
This trial is exciting, because it is trying to address the woes of those of us who are no longer deriving much benefit from MS drugs.

MS drugs are most effective when they are started very early in the disease process. Over time, their efficacy declines. While FDA approved MS drugs have varying rates of success at preventing relapses, none of them are all that great at penetrating the brain tissue, where inflammation hides. The longer you have MS, “compartmentalized inflammation” insidiously drags you down, even as your MRI shows no new lesions.

The TRAP trial is investigating four inexpensive time tested medicines to see how effectively they work to counter the stealthy decline within cells in those of us with the progressive form of the disease.

The four drugs are: Pioglitazone, Montelukast, Losartan, and Hydroxychloroquine.

The trial is testing the performance of these drugs when taken alongside standard MS drugs, so as not to abandon whatever potential benefit the standard MS drugs may confer. When I’d first signed up for the trial, I’d been on Zinbryta. When Zinbryta got pulled from the market in February, I was instructed to stop taking the supplementary medication from the trial as well. Now that I am on a steady course of Tecfidera, it can be paired with one of the four investigatory medications when I start the trial anew.

Tomorrow they will be running a battery of tests on me at the clinic. I will be interested to see if I’ve been on a plateau since I stopped taking Zinbryta and the TRAP medication, or if the plateau has been…dipping a bit. No matter what news I get, I’m going to keep running up the down escalator as fast as I can. I’m not going to passively rely on medication. My own wellness program includes: a Wahls Diet, so many supplements, mini-weight lifting, meditation, yoga, walks with the hubby and dogs, deep friendships, and meaningful work that supports others.

Which reminds me, thanks for reading this blog. And deepest thanks to those who have endorsed my nomination for Patient Leader in the #WEGOHealthAwards, as well as those who have gone so far as to link to my video. Reading your passionate testimonials makes me feel like Tom Sawyer spying on his own funeral!

I Am Creating Change By…

Endorse Me! 

There is still time to endorse my nomination as a Patient Leader for the #WEGOHealthAwards. If I were to be selected, I could extend my reach  with movers and shakers in healthcare  to advocate for people with disabilities. 

If you haven’t already, please follow this link to navigate to my nominee profile at #WEGOHealthAwards. Under my picture on the right-hand side of the page will be an “endorse” button. Clicking this button will submit an endorsement. While you are there, take a look at some of the other outstanding candidates. As I understand it, you can endorse more than one person. If you know of an outstanding patient advocate in your community, you can nominate them here.

I am so thankful to The Clifton Writing Workshop members who sat through my first improvisation of this speech. And I am beyond thankful to my friend Maria Ramos, who directed and filmed the final product. If you like this video, please share!

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A Pat on the Back from Ms Lab Rat

On June 23, I finally realized I shouldn’t reduce my blog to being just about me as a person with MS. I’ve got a lot more going on than a chronic disease. When I’m not telling my own stories, I’m working to help others tell their stories. And often enough, my students have successes that ought to be shared. I vowed on this post,  ” From now on, when one of my students deserve a pat on the back, I’m going to go ahead and pat.”

Guess what?

A long time member of  The Clifton Writer’s Workshop, a group I facilitate, just had a fine editorial published in The Cincinnati Enquirer.

I do hope you follow this link and read Andrea Rotterman’s nuanced piece about a her dual roles as gun owner and gun violence survivor. She labored over this essay, because she wanted to get the details right. All too often, the press presents gun ownership as an issue that is black and white. I love that her editorial ends with questions, not answers.

Does a link to an editorial on gun violence belong on a blog about multiple sclerosis? Gun violence is a more pervasive health problem in this country than multiple sclerosis. There’s only about 10,000 new MS cases diagnosed a year. The CDC published data showing 38,658 gun deaths for 2016, including suicides. It seems to me it should be easier to eradicate gun deaths than it’s been to eradicate MS.  But as Andrea’s editorial shows, nothing is as easy as it looks.

I’m so proud of Andrea for joining in our national conversation. It takes a lot of guts!Head Shot

If you like what I do, please endorse me on the WEGOHealth page to amplify my voice and the voices of the chronically ill.  Thanks for reading!

My, oh my, How My Blogging Has Changed

When I first created Ms. Lab Rat, it was all about me. I didn’t think to read other blogs or comment on them, because I’d thought I had the big answer. I was participating in a clinical trial for an MS drug that seemed to have stopped multiple sclerosis in its tracks. I’d gone from having a really severe case of relapsing remitting MS to an MS in remission, and to a large degree, my life was restored to me. I’d figured, as soon as this drug hit the market, the MS community would be transformed. Everyone would board the Zinbryta rocket ship and we’d all blast off into recovery. That’s not what happened. Zinbryta, which was so helpful to me, caused a few cases fatal encephalitis in others, and was pulled from the market.
I was left with no answers. Just questions. Like, what drug would I turn to next? Or, could I treat MS exclusively through diet? I started reading other blogs, and learning so much about the incredible resourcefullness and resilience in the online patient community. These days, I value my time as a reader and commenter as much as I do as a blogger. I am thankful for all the other bloggers out there who are getting out of bed each day (or not) and taking the time to share their struggles and strategies. Faithful readers and commenters, I am grateful to you, too!
It’s been a journey.

“Look at the Pretty Flowers!”

Setting: Early Evening

My husband is walking our two houndmutts as I, with my sticks, am trying to keep up.

HUSBAND: So what’s the itinerary at the NIH? Do you get the spinal tap the first day, or the second day?

ME: The second day. My last visit they gave me the spinal tap the first day, which was ridiculous, because then I had to perform all the evaluative tests the second day while I was still recovering and had a mild spinal headache, so obviously my scores would have turned out lower than optimal. But in a twisted way I’m kind of happy those scores were probably lower than they should have been, because now my decline won’t look so steep, since this time they’ll be testing me before they drain my spinal fluid.  I’m kind of self conscious about my pronounced decline.

HUSBAND: (Glances down the street.)  Look at the pretty flowers.

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ME: (laughing) Like you ever say, ‘Look at the pretty flowers.’

We walked on. It was a pleasant walk, after all.

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There are a lot of pretty flowers in our neighborhood.

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The Overgrown Road of Laupāhoehoe

To live successfully with multiple sclerosis, you must become an artist of improvisation. You never know when (or how) your body is going to horrify you next. MS is, I dare say, a master class in mortality. Gentle reader, we are all on the same conveyor belt, heading for the same destination. Some of us just get to have a more challenging experience resisting the inertial pull as we dodge hostile takeovers on random locations throughout our nervous system.  We need to be flexible. We need yoga. And that is why, every morning of my stay at the Temple of My Dreams, I’d leave the downstairs living quarters and make my way up the stairs, and then up the ramp, to the second floor entrance to the yoga studio.

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Once I reached the pillars, this is a glimpse of what I’d see to my left:

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I wish you could hear the ocean, as I did. Or the breezes. Or the birds. I would sometimes see glimpse a cat (or two) on my approach to the temple entrance on the second level.

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The temple itself was inhabited by a black cat.

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This cat is apparently very used to partnering in yoga.

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Ostensibly, the cat and I had the studio to ourselves. But if you’ve ever taught me yoga, or shared a pose with me, be assured, I snuck you in, too. The studio was spacious. And full.

There was a reason our family had chosen to visit The Big Island. When my husband graduated college, he and his dad celebrated with an epic two day climb / one day descent of the massive volcano, Mauna Loa. What better way to celebrate our son’s graduation from Vassar than to follow this tradition? Once we learned our son had signed on with a start-up in Beijing, it seemed only logical to give him a head start on the twelve hour time change with a ten day vacation in a time zone six hours closer to Beijing time. As parents, we’d do anything to ease a transition that is in many ways absolute. We knew our son would be starting a life far outside our areas of expertise. Our opportunities to ameliorate  his life challenges were drawing to a close.

During the planning phase, my husband kept bringing up the issue of what I would do during the Father/Son volcano expedition. Sorry, I am not the volcano vanquishing MS superhero you might find on an advertisement or some other blog. (Though I’d love to be!) I’m a fairly ecstatic swimmer/snorkeler,  but in the past I’ve gotten in some trouble overheating on the beach. My husband is accustomed to being my superhero. What would happen if I were to get stranded snorkeling while he was busy scaling the volcano with our son? His idea was to set me up in some luxury hotel for the haole (white) tourists on the dry side. No thank you! I wanted to choose my own adventure.

Meanwhile, the adventure my husband and son had chosen was going up in smoke—or more accurately—in vog. (Vog being the term for smoke that comes out of an active volcano.) As packages arrived at our house with backpacks and state of the art camping equipment, so daily updates arrived in our in-boxes on the steady eruption from Mauna Loa’s sister volcano, Kilauea. My husband kept expecting the eruption to end. But the goddess Pele didn’t seem to be running out of lava. As the date for our vacation grew nearer, he finally called the Park Service, and learned all the trails were closed. The men in my life would have to cancel their epic hike of Mauna Loa. No problem. They too, are flexible. They, too, have to live with MS. My husband found an achievable walk: an eight mile hike on Pu’u wa’awa’a. Achievable—for them, anyway. I hate to write that my eight mile hike days are gone forever. I’ll say this much: the day of the Father/Son hike, I would still have to find my own way.

But once we arrived at the AirBnB, I knew it had everything I needed for a blissful day on my own.  I could do yoga, at my pace. Break for writing. Break for meditating. Break for sitting on the lanai, soaking in the sights and sounds of the garden. Break for walking down to the beach. A five minute walk. An achievable walk. I’d have plenty to do while my husband and son took their achievable hike.

One morning, as I was leaving the yoga studio, I got a text from my husband. He’d taken a walk on an overgrown road that ran along the mountain side of the Jodo Temple. My son and I had refused to go with him. It looked like this:

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My husband texted that you could see the ocean from the road. The views were incredible. We should come! So we did. The views were incredible.

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Sure, there was a landslide to scurry over. But everywhere: island foliage in all its exuberance. Over a low wall of carefully assembled lava rocks: a view of the ocean. And after an eighth of a mile or so, the unmistakable sound of a waterfall. The air got cooler. We found ourselves under a leaf canopy, staring up at this:

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A little farther along, we stumbled on a second waterfall.

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My husband said, “All this for us? You’ve got your paved road in the wild. Our own private waterfalls.”

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All that for us. For me. You’d better believe I returned on the day of the Father / Son hike. It was just the perfect mix of challenge and beauty and wild wild wonder. At just the right temperature. Mahalo, Pele. Thank you. It all worked out just right.