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Some thoughts on MS, AI, and novelty human exoskeletons

Bambi the lobster mermaid on Coney Island will make sense by the end of the blog.
“Lobster” by Angus McIntyre, Creative Commons Attribution Noncommercial 3.0 Unported License

Yesterday I read a tweet from the MS Society UK that said “80% of people with MS are forced to give up work within 15 years of diagnosis. That needs to change…” The intention of the tweet seemed in part to be to raise awareness of the need for those diagnosed with MS to immediately go on and stay on disease modifying drugs, but the immediate effect on me was to do some math on the green paper towel sitting on my desk. It appeared that I had an 80% chance of being out of work by the end of 2027, which was a little earlier than I had expected retirement.

Whether it’s rational or not, I don’t really think I’ll be forced to do anything because of MS. I’ve been on disease modifying drugs since diagnosis—putting aside the pesky question of when I should have been diagnosed—and the only symptoms I’ve experienced during that time have been a few weeks of what at worst could be called a nuisance. Certainly I’ve not experienced disability. That, however didn’t stop me from noticing an article about Japanese robotics that could help disabled people that kept popping up in my social media feeds this week. I never clicked through; the knowledge that someone was working on it should I ever need it was comfort enough.

What I did click through on today is a piece by Gary Marcus about the current state of artificial intelligence, including the big news this week that DeepMind beat the European champion in Go, “a game that has been notoriously difficult for machines.” I started reading it thinking nothing about MS, spurred on only by my recently acquired interest in AI, nurtured by encounters with terrific film and literature on the subject. (My late-blooming interest in AI is a matter of much derision on the part of my lifelong sci-fi-loving husband.) But when I got to the part where Marcus recounts a talk by a graduate student of a deep learning expert on the same day the Go paper went public, I immediately felt a pang familiar to any patient of neurological disease who quickly learns the answers to most of her questions are “We don’t know.” Speaking about AI, the graduate student acknowledged “(a) people in the field still don’t really understand why their models work as well as they do and (b) they still can’t really guarantee much of anything if you test them in circumstances that differ significantly from the circumstances on which they were trained.”

In other words, AI sounds a lot like the human brain. And as with the human brain, it’s inevitable (as had been the fodder for the conflicts in countless sci-fi plot) that AI will be unleashed on the world before we ever understand it. It’s already been happening for a while with products like Siri and Google Now.

I’m less concerned about this than what Marcus poses at the end of his article: “The real question is whether the technology developed there can be taken out of the game world and into the real world. IBM has struggled to make compelling products out of DeepBlue (the chess champion) and Watson (the Jeopardy champion).”

As a person with a neurological disease that has the potential to impact both my motor and cognitive function, the one that’s more terrifying is the latter. Sure, not being able to walk is a horrifying prospect, but people are working on powerful exoskeletons I’ll soon be able to suit up in to handle that; I want mine to look like a lobster, just for the record. (Note to self: business idea for novelty human exoskeletons.) If AI scientists want to deliver a compelling product, how about one that will supplement cognitive skills in patients with neurological impairment? All I ask is she’s given a better name than Siri.


We Tell Ourselves Stories

Last night in the bathtub I read an article by Oliver Sacks about a man with lesions on his brain who developed alexia, the inability to recognize written language. It got me thinking about my very own lesions, and in turn MS, and in turn a man I met on the second night of the London to Paris charity bike ride. He and his friend joined husband and me over dinner at the hotel. He was wearing an orange T-shirt sporting the cheery star-spangled logo of the the MS Society, the charity I was also supporting, and when we got to talking I quickly learned that he suffers from MS. We exchanged disease synopses, much like you might exchange your reflections on a recent trip to Tuscany if you met someone and found out he or she had also just been there, had stayed in the very same villa as you as a matter of fact. (In this part of Tuscany there are wheelchairs and neurologists.)

I asked him about the time between the recurrence of his symptoms, a key factor in the diagnosis of MS. Once he gave me the answer I wanted – that his symptoms were so close together his doctor couldn’t tell them apart—I didn’t want to hear anymore. I had heard what I needed, which was that his experience with symptom recurrence was different than mine and, by extension, this meant I wasn’t going to develop MS. But he wanted, even needed, to tell me more. It was like he was performing a duty of care in dispensing his expertise on the disease to me, the potential new recruit. And so he told me more. More about the best doctors in the U.S., where he lived when he was diagnosed, and London. More about the need for a holistic approach to treatment. More about what an asshole banker he had been before he got the diagnosis, and how MS had made him a better husband and father.

I understand better than anyone that disease compels you to craft a narrative to rationalize it, and becoming a better man was the main arc of his story. And yet it was a story that made me uneasy the more I sat and listened, picking over my beef stew and pomme frites. It should have made me feel better. It was not my story after all. I was not, as far as I knew, an asshole, and was definitely not a banker or parent. And yet these facts establishing our separateness brought me none of the lazy comfort I’d allowed myself earlier when I differentiated this man’s fate from my own based on the rate of his symptom recurrence.

That night I wrote on my blog that I found the man with MS narcissistic and unlikeable, which of course in retrospect was unfair. Husband had surprised me that night by questioning my assessment of the man’s behavior since we usually agree on this sort of thing. He suggested my reaction was more about my discomfort with confronting MS than the man’s arrogance. And pain me as it might to say it, husband was right.

Cycling England Europe

London to Paris sur une Bicyclette Day 4: Beauvais to le Tour Eiffel

At breakfast on day 4 I noticed that husband and I seemed to be the only couple on the trip. Well, at least the only couple that started the ride that way. The other cyclists seemed to be girlfriends united by a cause—like the Help for Heroes ladies who had sons and husbands in Afghanistan—or a group of men united by their local pub, the beer from which played a pivotal role in encouraging them to think cycling 300 miles would be a laugh.

Within the first 10 miles of today’s ride I realized why couples were so scarce. We were powering up a long incline when husband announced for no apparent reason that he was not going on the f***ing motorway that was running perpendicular to us. Seeing as our route had not yet been on any motorways and the organizer’s insurance premiums almost certainly couldn’t withstand such a decision, husband’s proclamation struck me as nothing more than another moan in what had been a laundry list of complaints over the past 3 days. Thus far I had thought myself rather restrained in dealing with this sort of behavior. Husband would complain, I would grunt some sort of acknowledgment and then let it drop. But this time, what with the sore knees and the aching quads and no end to this hill in sight, I let rip. “Shut up. SHUT UP,” I howled as I hunched over my bike with renewed vigor. There was no more speaking between then and the water stop at mile 23.

Despite the tension, the cycling over the first 30 miles of the day was some of the most rewarding of the trip. The roads were busier than the previous day which precluded riding side by side, and thus conversation (which given our early spat, suited just fine). With the exception of two lengthy inclines the terrain was straight and flat. The combined effect was that I was focused and alert and able to settle into a rhythm. No thinking, just doing.

Closer to Paris it was stop and start as we rode in along the Seine through the industrial northwest of the city, inching towards our Finish line at the Eiffel Tower. Our planned victory lap up the Champs Elysees was nixed by the gendarmerie—it’s a good thing I enjoyed my Tour de France moment earlier in the week in Calais—and so we found ourselves sharing the Eiffel Tower with a swarm of rambunctious Perpignan rugby fans who were in town for the French championship. They were amped up, dressed in their team colours of red and yellow and drinking out of bottles or cups or Davy Crockett style flasks that they tried to squirt in our mouths in some sort of drunken show of solidarity. It looked like Paris had been overrun by a convention of Ronald McDonalds gone bad. We had our obligatory picture snapped in front of the Eiffel Tower and headed for the hotel.

The end of the adventure had been surprisingly unsentimental, flat even. I felt no need to lift my bike over my head in a victory gesture or hug or high five anyone as many of the others in the group did. My lack of emotion bothered me, and for the next few days in Paris I thought about why this was so. The prerequisites for tugging at the heartstrings had all been in place on this adventure: tales of tragedy, triumph over adversity, endorphins, and the city of romance for goodness sake! But in the end this experience was a visceral one for me, not a sentimental one. The value had been in the doing, and I had done what I set out to do. Many others could and would and will and do ride their bikes from London to Paris. And for four days at the end of May, I did too.

Cycling England Europe

London to Paris sur une Bicyclette Day 3: Abbeville to Beauvais

Today’s ride is the most scenic of the trip, with terrain that resembles the Cotswolds without the dry stone walls. Their absence makes me realize how much that stone defines the aesthetic of the Cotswolds, manifest in the churches and cottages and, of course, walls. After three days of eating and riding together, our fellow cyclists are starting to become as much a part of our landscape as those dry stone walls are of the Cotswolds. Not yet knowing everyone’s name, we’ve taken to privately calling them by their defining, sometimes annoying— everything seems annoying when you are going uphill on your third straight day of distance cycling— characteristic. I’ve already introduced smoking man and sweatpants-tucked-into-his-tube socks man, but they have now been joined by a cast of characters including:

    • Foghorn Leghorn, a twenty-something gung ho gal with a plum coloured bob and a booming voice she uses to indicate that she’s very pleased with herself.
    • Australian Man Eater, Foghorn Leghorn’s buddy on this trip who’s clearly on the prowl. I presume the squeaking bed springs coming from next door in the early morning hours of Day 4 mean she was successful.
    • The “Merely-a-Paper-Cut-Gals,” a trio of posh fifty-something birds who are shockingly athletic. My nickname for them hails from the French and Saunders sketch where the duo play a pair of country toffs who constantly sustain dramatic injuries and insist with quintessential English stiff upper lipness that it’s “merely a paper cut.”
    • The Sports Bores, a group of twenty-something uber athletic men who we only see in the morning and evening because they’re always miles ahead of us. They favor achingly tight red lycra and wear their men-from-the-future sports sunglasses with their civilian clothes in the evenings.
    • The Doofus, a ginger haired boy who’s joined Foghorn and Man Eater’s clique, and keeps falling over on his bike.
    • The Doo-lolly, a blond haired, Rubenesque gal who likes to zoom past you on the downhill then suddenly stop her bike in front of you on the uphill so she can get off and walk.

By the time we arrive at our motorway adjacent lodgings, we’ve created back stories for most of the group. We continue this form of recreation over a pichet of the motel’s house rosé. (Being France, it’s quite decent wine relative to what you would expect to find at your average British or American Motel 6. Do they even sell wine at Motel 6?). And just to prove we’re not horrible people we share our pichet with Foghorn’s table.

Cycling England Europe

London to Paris sur une Bicyclette Day 2: Calais to Abbeville

Day 2 and I use every piece of advice, from trite euphemism to true wisdom, to get me through the 78 hilly miles. There’s Larry, my L.A. yoga teacher and former zen priest telling me “so what,” when I complain my feet fall asleep during zazen (and, as it happens, when cycling excessive distances). Richard, the ex-Navy Seal/zen priest in training/workout instructor/and, more recently, cable television host of a program about the weapons of war for which he gave himself the nickname Mack, is also there. He’s shouting “not dead, can’t quit,” at me just like he did when I was doing push ups at 6:30am in the Santa Monica zendo. My colleague Ian is also on hand, nodding approvingly as I wash down my sixth Nurofen of the day with a dose of neat black currant cordial. Ian had advised me painkillers and a slow and steady pace would be my best friends for this bike ride, and so far he’s been right on both counts. The cordial and jelly babies are also reliable acquaintances.

The terrain today is punishing and scenic, and seems to be populated solely by lazy, white French cows who sleep in the meadows like dogs in the shade. The villages we ride through are ghost towns, with broke down mini-chateaus and those concrete bungalows with brightly painted shutters the French seem to favor. Later there are American scale stretches of agricultural land, so vast they make the Cotswolds seem like it’s engaged in boutique farming. Despite all the greenery it somehow feels desolate in these parts.

Over dinner at our hotel we are joined by a man and his friend who are riding for the same charity, the MS Society, that I am. We get to talking and I learn that he suffers from MS and was previously in a wheel chair. His story should be inspirational, but the more he talks the more I dislike him. I find him narcissistic and feel guilty about it, despite reminding myself that disease doesn’t discriminate when it comes to the likability of its victims. When we are back in our hotel room, I ask husband if he had the same reaction and am surprised when he tells me he liked the guy. Husband suggests my reaction might be more about my discomfort with confronting MS rather than the man’s arrogance. I decide to sleep on it.

Cycling England Europe

London to Paris sur une Bicyclette Day 1: Crystal Palace to the White Cliffs of Dover

An inauspicious start to the day when our mini cab driver arrives at our flat early, aborting my attempt to make coffee, then drops us at the wrong end of Crystal Palace park, leaving us roaming for 30 minutes looking for the starting line. Lose luggage tag and woman-from-the-future special bicycling sunglasses (later retrieved in the parking lot) in the process. When we finally do arrive at the check-in point I suggest to support staff they invest in some signage for future events in a tone verging on shouting. None of them gets hooked, which is a good sign: clearly they are well versed in dealing with drama queens, a skill that will come in handy over the next few days.

The whole thing reminds me of the time husband ran the Napa Valley marathon and we drove 26 miles from our hotel in Calistoga at 6am wondering why there was so much traffic going in the opposite direction so early in the morning. When we arrived in Napa we learned we were at the Finish line, so we stormed back up the highway to Calistoga arriving just as they were disassembling the Start line bunting. Support staff telephoned ahead to their colleagues to keep the first water stop open, and husband ran off into the morning mist like Forest Gump. He was so freaked out he finished in his fastest time ever, just over four hours.

Our late start doesn’t inspire such speed on the first day of our cycle ride. 90 miles later we arrive in Dover in the bottom 3 of our group of 70-odd, not counting the handful of people who got a lift in the van. The other laggard is someone I will come to know as smoking man thanks to his habit of lighting up at the top of hills. He and a rotund chap who wears his sweatpants tucked into his tube socks will become my frequent companions at the back of the pack on day 2.

90 minutes later we arrive by ferry in Calais and convoy the 1o or some unwelcome additional miles to the Holiday Inn on the outskirts of town. Young men with long hair and earrings step out from bars with names like Le Crypte, whistling at us and inviting us for a drink in accented English. This is the closest I will come to knowing what it feels like to ride through a French town on the Tour de France, so I savour the moment.


L is for Les Ions

Last year I went to the ballet at the Royal Opera House. My seat was in a box just off stage left, from where I could peer directly down into the orchestra pit. I don’t remember much about the ballet (La Sylphide I think), but I do remember looking down at the conductor and thinking with some sadness that I am probably too old to ever be able to do that. By which I meant, at thirty-six, it was unrealistic to think I could ever become an orchestra conductor. Not that I ever aspired to be an orchestra conductor, or a musician of any sort. I terminated my music career at will upon graduating from the eighth grade (everyone knows high school marching band is for losers), having scaled the heights of third chair flute in the Fort Myers Middle School band. But in that moment at the opera house I sensed the realm of all of life’s possibility slipping away just a little bit as I came to grips with the middleness of both my age and achievements in corporate management. It would almost be tragic if it wasn’t so narcissistic.

Of course I blame my parents for this obscene level of self-belief and sense of control over my own destiny that allowed me to think well into my thirties I might be capable of one day usurping Sir Simon Rattle if I just tried hard enough. They have always thought I am smarter than I am. (My father still thinks if I would have taken my SATs again I could have breached the Ivy wall instead of settling for my respectable yet second tier university). I suppose this life philosophy has served me well despite the inherent dose of denial. But it also explains why I am having so much trouble coping with a factoid my neurologist let slip on my recent visit.

It turns out those three sessions of intensive steroid treatments I did back in March only treated my symptoms: the brain swelling which subsequently caused me difficulty in speaking. They did nothing to address the underlying cause, a series of lesions on my brain. In fact the aftermath of these lesions will always be with me. Should I ever have want or need for another brain scan, I will first need to be shot full of dye so the doctor can tell any new lesions from the old ones.

None of this squares with my core belief system of you are generally in control of your life, even if I no longer quite believe I have enough years left to learn how to conduct a philharmonic. Surely there must be something I can do to rid myself of these lesions, some combination of oily fish and pomegranates and yoga if no miracle drug is yet available as my neurologist claims to be the case.

And so in the absence of any answers from science I have turned to the transformative power of language. Lesions are for lepers or people with venereal disease. They simply will not do. Therefore, I have decided I have les ions, which I like to pronounce lā-ē-uh, with a trademark French grunt on the last syllable. It still sounds vaguely scientific yet at the same time foreign and alluring. And best of all it makes me feel, just for a moment, like I am in control.


Charity Begins at Waitrose

Near the exit at the Waitrose supermarket in Cirencester there are three tall perspex boxes with piggy bank style slots on top. When you checkout, the cashier gives you a charity token, a green plastic “coin” you can deposit in the perspex box for your charity of choice. Waitrose then makes charitable donations proportionate to the number of green disks in each box. The charities are rotated on a regular basis, but recently one of the boxes was designated for a local MS center. I am not ashamed to say that I got in the habit of lingering by the perspex boxes on my way out to observe what my fellow shoppers deemed to be worthy causes. Imagine my disgust at the number of people who thought that the town needed a better playground or that disabled kids might benefit from horse riding lessons. I thought about making an impassioned plea for tokens for the local MS center, but thought better of it. I’d hate for my outburst to get me banned from the store. This is the only place in a fifty-mile radius that sells Skinny Cow Triple Chocolate ice cream bars.

The truth is that getting up close and personal with a health issue will make you act in an extremely self-interested way. (Just look at Michael J. Fox. I don’t ever remember him talking about Parkinson’s disease when he was on Family Ties.) Which explains why I’ve just requested an information pack online for the London to Paris charity bike ride for the MS Trust in May 2010. Well, that and I’ve been catching up with old friends ahead of some upcoming high school and college reunions and am alarmed by the number of triathlete, yoga teaching overachievers who apparently haven’t gotten the memo that we’re pushing forty and officially letting ourselves go. Start saving your green plastic tokens now. You’ll need them when I come asking for sponsorship next year.


My Neurologist and Me

I went to see my neurologist yesterday for my three-month follow up. I am still not used to saying I have a neurologist. It’s like when you first get married and it feels wildly foreign to refer out loud to your “husband.” But the strangeness comes with a hint of pride. I would rather have a neurologist than, say, a proctologist or a chiropodist. It somehow feels more glamorous, more high brow, more befitting of me. The corporeal mutiny of age inches forward—an extra chin here, an autoimmune attack there—but that one vestige of youth, my vanity, remains.

My check up was more of a check in. In fact, my neurologist would make a great shrink. He has mastered the therapist’s technique whereby the patient poses a burning question and the therapist manages to get the patient to answer it for herself through a deft combination of silence and answering a question with another question. The burning question of the appointment was what to do next: nothing or scan again. The latter option means I would be actively searching for evidence of new “activity” in the brain despite a lack of symptoms (the doctor dismissed the lazy arm that cause me a spasm of panic earlier in the month within the first two minutes of our appointment; it’s not a MS symptom). If the scan reveals symptom-free activity it is enough to get you an MS diagnosis, which is the trigger to start on meds. American doctors are generally pro-medicine of all kinds, so odds are if I was in the US a doctor would advocate a scan. Brits on the other hand opt for the wait and see approach at this stage. And in this matter I’ve decided to side with the country of which I’ve most recently become a citizen. I shall stick my head in the sand and enjoy the symptom-free life I’m experiencing now for as long as it lasts, hopefully for the next sixty years or so.

I pretty much knew this was my decision before I walked into the doctor’s office, but that didn’t stop me from subjecting him to a thirty minute interrogation. I was desperate for my symptom-free three months to mean something of statistical significance about reducing my chances of developing MS. It doesn’t. It means what it means which is that I’ve gone three months without any symptoms. And that is a good thing in and of itself. And that’s all. I was hoping there would at least be some sort of ceremony to present me with my “three months symptom-free” Alcoholics Anonymous style token, something I could carry around in my pocket and finger inconspicuously when I was feeling insecure. Something to hold onto.

The one bit of new information I did glean from my questioning was that more instances of MS occur the farther away from the equator you go in either direction. My neurologist slipped it into a response to a question I had about treatment in the US versus the UK, citing “the equator effect” in explanation for why he couldn’t give me an accurate answer.

“I’m sorry, I don’t know what you mean,” I asked, concerned that this man in front of me was actually a quack witch doctor masquerading as a neurologist. This would not be good for my frail ego — which as I’ve mentioned is dependent on having a neurologist—nevermind my health. Next he’s going to tell me cats can suck the air out of babies’ mouths. But instead he went on to explain the epidemiological phenomenon of MS and the equator, which I later confirmed on the Internet (a validation process which I am sure sends shudders up the spine of every doctor in the land). Unfortunately the relationship is not causal, which means I won’t be changing the name of this blog to An American in Quito anytime soon.

Books Random

The Unreliable Narrator

The compelling inaugural read of the Wheatsheaf Inn book club was Ross Raisin’s God’s Own Country. Early on the narrator, Sam Marsdyke, tells us about the attempted rape allegation that prematurely ended his school career. In his version it was a mutually reciprocated teenage dalliance interrupted by a teacher with unfortunate timing. I believed him. Then, a few pages later, Sam dropkicks a chicken for no particular reason and the doubts set in. Sam’s descent into the realm of the unreliable narrator continues unabated from there.

Over the weekend husband had occasion to tell the story of his own “chicken dropkick” moment with a much more personal unreliable narrator, his mother, who suffered from undiagnosed schizophrenia for many years of husband’s childhood. When he was ten years old he decided to reverse engineer a record player and, in the process of disassembling the transformer, gave himself a nasty electric shock. The experience disturbed him and over the next few days he became convinced he had developed a lump in his chest caused by the shock. After a few more days he decided to confide his worries in his mother. He told her the whole story, then she asked him what he thought the lump could be.

“I think it might be cancer,” whispered husband.

His mother paused and thought this over before answering.

“Could be, son,” she replied. “Could be.”

Lately I too have been struggling with the reliability of some personal narration in my life. For the last few days my right arm has felt weak. I notice it most when I’m driving and want to drape it on the arm rest or lay it in my lap in an imaginary sling position to get relief. I’m worried it’s an MS-related symptom, but husband is convinced it’s nothing. He tells me I’m just getting old and feeling creaky is to be expected. The problem is he’s understandably invested in me not exhibiting MS symptoms, having no desire to ponder a future in which he gets to play nursemaid to someone with a chronic illness. The part of me that knows positive thinking matters in situations like these welcomes his optimism. But another part of me knows he’s a fundamentally unreliable narrator on this particular subject.

He has, however, made one very accurate observation of late. Ever since this whole health debacle started, my brain has gone into overdrive making me highly sensitive to any physical anomalies no matter how slight. No cramp, tinge or tingle goes unnoticed. It’s as if 24/7 surveillance has been installed in my central nervous system. The fundamental question, though, is how reliable is the person my brain has put on duty to monitor the surveillance? Is it an Agent Scully type in charge, smart and grounded even in the face of an alien attack on my neurons? I’d be happy if P.I. Precious Ramotswe was on the case, wise and warm and down to earth seeming somehow appropriate for the task at hand. But maybe my cerebellum has gone and hired an overzealous mall cop for the task and now he’s stirring up “symptoms” to justify his own inflated sense of self-importance.

Of course I am hopeful my brain has just made a poor hiring decision and my lazy right arm is all down to mall cop’s overactive imagination. After all, there’s no need for the warmth and wisdom of the Lady’s No.1 Detective if there’s nothing wrong. I’ll find out soon enough because my follow up appointment with the neurologist is booked for the end of the month. Until then I’m keeping my inner mall cop away from the phone.