Going All In For Ocrevus

There’s plenty of drama with MS, but it’s rarely this positive and exciting!

“Is the MS drug news good for u?,” my friend’s text asked. It was Wednesday morning, March 29th. Genentech had just announced Ocrevus, the “First and only approved disease-modifying therapy for primary progressive form of multiple sclerosis (PPMS) – one of the most disabling forms of multiple sclerosis (MS)” had been approved by the United States Food and Drug Administration (FDA).

My friend and her family are among my biggest advocates and supporters, and in their way, cheerleaders. “The shortest answer is maybe,” I wrote back. “But maybe is a far better answer than no.”

Early the next morning my neurologist called. My wife was running late and I was trying to help her fly out the door. One of our cats was in a pet carrier, howling as she waited for me to take her to the vet. I was in the eye of the tornado and it wasn’t the best time to talk. But his call was unexpected and it was my neurologist. 

“Did you hear the news about Ocrevus?” he asked. By then I had watched the drug’s long progression from potential breakthrough to its approval for use here in the United States. For the past year I’d pestered my neurologist to determine if I would be a candidate for the treatment and we had talked about it several times. His call shouldn’t have surprised me. “You were at the top of my list to call to see if you wanted to set up an appointment to come in and talk about the pros and cons of the medicine.”

Two days later the lawyer handling my Social Security disability application called and left a message asking if I’d heard about “a miracle drug’s approval for treating multiple sclerosis”.

My journey with MS began in 2001. I was 41 years-old then and training for what I had hoped to be the first of several marathons in my life. Ever so gradually I developed a gate problem that ever so gradually made it impossible to run. Today I need a cane to walk and am shopping for a walker. I wrote this column using voice to text technology because motor loss in my right hand has rendered it useless for typing.

There were plenty of warning signs and seemingly disparate illnesses over the ensuing years but I wasn’t diagnosed until December 27, 2013 when connecting what were, in retrospect, classic MS symptoms became impossible to ignore. Though I had very few episodes that might be considered exacerbations or flareups, in the spring of 2014 I received medication meant for relapse-remit MS patients. Months later I spoke with my neurologist again, complaining that nothing was changing. “It may take a while before you notice the effects,” he said.

But I continued to get worse. Today my neurologist and I have come to agree that mine is a progressive form of MS. It just went unrecognized for so long that the marked debilitation I’ve experienced over the past three years seems comparatively sudden.

By now I understand that MS is different for everyone, that its arc and and progression are unpredictable and the only thing that is predictable is the disease’s chaotic nature. So I’ve learned to become cautious and guarded about everything associated with MS, taking everything with many grains of salt. Truckloads of salt.

Nearly everything MS is doing with me is out of my control, except for trying to take care of myself, which isn’t.

I attend a weekly Pilates session with an instructor trained to work with MS clients. Though it’s very awkward, I continue to ride my bicycle and workout several times a week. We get together with friends and go out as frequently as we can even when I don’t feel like it. Sometimes when I don’t want to do those things I think of them as an obligation to those who are supporting me, who inquired excitedly to ask if I’d heard the news, and who asked if Ocrevus is going to help me. Because they need to know I am not giving up.

They’ve lived this disease with me and and the news about Ocrevus has left them enthusiastic. They need to be enthusiastic in order to keep slogging this out. Yet I am skeptical about Ocrevus because of my history with MS and because there’s much left to know about the drug. I am also afraid of the massive letdown we may all experience if it doesn’t work. 

For everyone’s sake, I am trying to be enthusiastic and have faith that they’ll be there for me even if Ocrevus doesn’t change anything for me. I’m scheduled to meet with my neurologist within the week. If we’re going to do this, I know we’re going all in and I know were going all in together.

(This column first appeared in MS News Today on April 5th and was republished with their permission.) 

The First Time I Had MS

In November 2002 I wrote an article entitled “Beyond the Graves” for Indianapolis Monthly Magazine about life with a chronic illness, in my case Graves Disease.

Looking back, it was likely the beginnings of MS. Here’s the story:

“Uncle Mike, what’s wrong with your eye?” my young niece Jessica asked me during lunch not too long ago.

She is six years old, and I adore being asked something by her, adore being engaged somehow in her life. And it was a fair question. Because there is something wrong with my eye—actually it’s the socket that’s not quite right, but no one sees that part. They just see a right eye that’s somehow different than its counterpart, and when I study it in the mirror—pretty much daily now—it seems to stare back at me, locked forever in a state of semi-surprise, a sort of creepy, noncommittal response to a “Boo!”

“It’s hard to explain, Jess,” I answered, looking down at the table. “I guess the best I can tell you is that my eye’s sick.”

“Jessica, don’t ask Uncle Mike about his eye,” her mother interrupted.

“It’s alright,” I said. “It’s just hard to explain, Jess. I’m just sick.”

“When will you be better?” she asked.

“I don’t know, sweetheart,” I said. But I do know, and the answer is never.

What is wrong with my eye is caused by a chronic condition known as Graves Disease. The disease itself—a malfunctioning thyroid gland pumping oddball amounts of hormone into me—is treatable with drugs, radiation or removing the thyroid altogether. But without corrective surgery, my big eye will be with me from now on, forever a picture window into my soul instead of just a regular-sized one. And like its chronic cousins, lupus, diabetes, Crohn’s Disease and the rest, my condition may “present” itself when I least want it to—always.

Physicians use the word “presents” to describe how an illness shows its symptoms; my thyroid condition “presented” itself by inflaming the fatty tissue in the socket of my right eye, making it too small for the eye to fit. Crohn’s can include debilitating diarrhea and abdominal pain, diabetes a lifetime of fainting and insulin shock and worse. I know a woman who had lupus and she was always pale, always tired and frail. But the common denominator with all chronic conditions is the other “present”; they’re always there, lurking in the periphery of your life to remind you of just how vulnerable, and how very mortal, you really are.

Thyroid disease can be hereditary, and my mother and sister both have it, though neither have Graves. Over 14 million men and women in this country suffer from thyroid imbalance, most of them undiagnosed, according to the Thyroid Foundation of America. Experts often associate stress and smoking as contributing factors, but beyond a genetic disposition, no one knows for sure what causes thyroid disease, let alone what factors activate it in families who share the affliction.

Graves Disease normally strikes between the ages of 20 and 40 and affects ten times more women than men. The hormonal imbalance that accompanies it can cause sleeplessness, changes in libido and weight loss, mood swings, anxiety and erratic behavior, muscle weakness, heat intolerance, fatigue and sometimes trembling hands or even tremors. The first presentation was likely in my hands. But I wasn’t looking for it.

Returning from a trip to Jamaica I’d noticed my fingers were tingling. Carpal tunnel from writing I figured. But I’d smoked some very strong ganja in Jamaica—maybe that was it. I went to a doctor but declined to elaborate on my drug use; she told me to keep an eye on the tingling that disappeared ten days later.

When you look at yourself each day in the mirror what do you see? Really? Change is easier to see in chunks, like comparing the streetscape at the turn of the century with the same shot 100 years later. At the time, 1997, I was 37 years old. I smoked, I drank and to some degree I drugged. At 5’ 10” I weighed nearly 220 pounds. Maybe if I’d been more alert I would have seen my changing eye, but through my lifestyle I was keeping myself blind by choice.

At a family gathering later that year a relative asked me, quietly, if something was wrong with my eye. Guessing it was hay fever I brushed his question off. But then my wife and I ran into my parents at the mall. After we talked for a little while my mother asked me what was wrong with my eye.

“Thank God you noticed it,” Michelle, my wife, said to my mom, “I thought it was just me.” The three of them gathered around me so they could examine the eye in unison. Right there in the mall. After a thorough review they concluded the right eye was bigger. After that conversation turned tight; we cut our shopping trip short and drove home in silence. Now I looked in the car’s vanity mirror and now my right eye did look bigger, like it had grown that very day and now, looking for it, looking at it, it was blindingly obvious.   And now I noticed the street had changed, forever.

 

The trouble with diagnosing some chronic conditions is that they share symptoms. Sitting on the examination table, Lisa, my doctor, said there were a few conditions that could cause the eye to protrude. It could be Graves Disease. Or it could be a tumor. Or it could be something else. X-rays of my head were the first step in discovering the truth; the upside was I would now have proof that something was in fact in it.

A week after the X-rays I sat in Lisa’s office again. There was no tumor she said, but the initial diagnosis was equally jarring. “There are scars on the myelin in your brain,” she said. Myelin is like an insulator around the nerves. Scarring, or deterioration, can lead to “cross talk” that causes all kinds of problems. The scars, she explained, may have been there since I was born, or developed along the way. Or they may have been an indication of the onslaught of multiple sclerosis.

The 10-minute drive home couldn’t end soon enough; my mind was drowning in fear, fear from what little I knew about MS, fear that I’d end up wheelchair bound, fear that I’d be unable to write for a living, fear that my life, so free for so long was irreparably changing. My years of excess and indulgence were hideous on a grand scale now, and like anyone on the edge of forever losing something suddenly precious, I cried.

Diagnosing MS is hard; there’s no single “test,” no blood work, no X-ray. I surfed the web frantically, trying to learn as much as I could about the disease, discovering the varying types, the most severe leaving its victim in a wheelchair and in need of extensive assistance and care. I prayed hard for the other, a milder, more manageable version. But the Internet is a gluttonous library, and if you’re not careful pretty soon you’ve “got” everything. A sneeze turns into a seizure; a restless night quickly becomes incurable insomnia.

A cat-scan followed, and then a trip to a neurologist. After a long wait in the exam room a disheveled doctor blew through the door. “Hello Mr. Knight. Sorry to keep you waiting,” he said. Thumbing through my file, he looked up and said, “Now tell me, what exactly are you here for?” Of such huge significance to me, the question was not even on his agenda as my caregiver. Furious, I explained that I was trying to find out if I had MS. After a battery of tests, which included tickling me with a feather and pricking me with a pin, he told me I didn’t have multiple sclerosis. Somehow I found it hard to believe a guy who looked like a janitor, and whose exam would have been at home in a Three Stooges film.

Finally I was diagnosed with Graves Disease by a neuro-opthomalogist. Its physiological symptoms—like nervousness, erratic behavior, intolerance to heat and others—were in full bloom. And I had finally quit smoking. Everything. Now happy go lucky me was replaced by very intense me. Very intense me. Driving behind the dearest little grandmother on Kessler Avenue one afternoon with my wife I laid on the horn because she wouldn’t get out of my way. “Michael!” Michelle said. “What’s wrong with you?” So troubling was the experience that now she watches for strange behavior and is prone to asking me if I’m all right.

I was prescribed a daily regimen of Synthroid, a therapy designed to get my thyroid back in balance. The pill was hard to take; not hard to swallow, but it couldn’t be taken too close to meals, nor too far after. “Did you take your Synthroid” now preceded “good night.”

But beyond taking the medicine, which for me wasn’t that big of a deal, chronic conditions extract a daily toll paid in the form of physical or mental currency, or some combination of both. Most times dealing with Graves Disease was an abstract issue free of pain—outside of a runaway eyeball, it was a matter of coping with a chemical makeup gone wrong, and the side affects and problems it caused, in my case, mostly sleeplessness and anxiety, an evil axis of emotional dictators. For others with Crohn’s or diabetes or lupus there’s medicine and treatment and physical trauma on top of the mental gymnastics. Living with a chronic condition meant adjusting my life to the what-ifs the disease presented; working weekends when I was too tired to work during normal workdays, staying home when we used to go out and constantly repairing the damage done by not sleeping in the same bed with my wife, not because I didn’t want to, but because I simply could…not…SLEEP. Knowing that you may have to succumb to your condition on any given day or at any moment is what makes it chronic. And to be sure, the Devil is in those tiny details, the small, nagging psychological battles that are hard to win because you’re at war with yourself. The outcome of course is constantly not feeling right or like you used to, a concept gone but not forgotten and one sure to only add to the solitude of your struggle.

For my particular affliction, occasionally there were times when I would forget that I even had it, a victory in itself. And then I’d look in the mirror or I’d see someone look at my face and I’d wonder if they were looking at me or at it, a notion confirmed by my niece’s unbridled honesty. I don’t look quite as shocked as fellow Graves Disease sufferer Barbara Bush. Nor am I quite as goggle-eyed as the late actor Marty Feldman, who used his affliction to such great comedic effect. Still, there’s only so long you can keep your sunglasses on before people think you’re on drugs or hiding something, an irony not lost on me. So I don’t explain it to people unless I’m forced to, either by an inquisitive look, or by looking strung out from lack of sleep—it’s too obscure other than to say “I have the same thing Barbara Bush does” and move on, assuming the listener will know it’s not a son illicitly elected president.

Just now I am a few months removed from my last Synthroid tablet, by doctor’s orders. The disease can go into remission, but blood tests, taken every two or three months, are used to monitor its condition. I run some 25 miles a week, weigh about 170 pounds, and mentally am in the best condition of my adult life.

In some ways I was reborn the day I found I had Graves and not MS. I have it so easy compared to so many others. But I am three months past due getting my blood work done. There are stretches when I just can’t sleep, and am so tired that it feels like there are bees buzzing in my head. My hands are tingling again. Carpal tunnel, right? We went yesterday to get the blood work done, and now I’m waiting for the results. And I’m worried about it, because I’m afraid of what might present itself next. Ironically my eyes are open wider than ever to my own vulnerability and mortality—and sometimes I wish I could get them shut.

 

Hands Off Training

I am not sure what I expected to happen by using Nuance’s Dragon for Mac voice-to-text software, but I  hoped it would allow me to continue writing.

Due to Multiple Sclerosis I can’t type any longer because my right hand doesn’t have the fine motor skills necessary to type for any longer than five minutes or so. 

I had hoped the software would help make writing possible.

The loss was, and has been, a weird loss and disruption. My hope was that Dragon would indeed “listen, understand, learn and adapt” as their literature said it would to my life and work. (Full disclosure: The folks at Nuance were kind enough to provide me with a complimentary copy for this review.) 

I am reasonably skilled with many common applications (MS Office, desktop design and video software, etc.). Most of my work is done using a 2015 iMac which has a 3.2 GHz Intel Core i5 with 8 GB of memory and runs Sierra 10.12.2; I have an iPhone 6 and two different iPads and am reasonably familiar with Macs and the Apple environment. I bought a set of Sennheiser SC 260 headphones with a microphone for use with Dragon for Mac (they’re awesome).

Unfortunately, I am also using Microsoft Word 2008 (I have never been a huge fan of Word, purchased this version on the cheap and it is now awfully out of date). Finally, I am not a huge Siri user, though I am learning. Both of these elements factor into how Dragon works for me.

Dragon Set-up

Dragon for Mac was very easy to install. I created my user profile, completed the “improve recognition” exercises that come with the software designed to help the user understand best speaking practices while using Dragon and conversely, for Dragon to learn my speech patterns and typical diction.

In no time at all I was dictating emails. Sort of.

Because that’s when the complexity of each process really became hit me. Though the rules for email punctuation, grammar and style are more forgiving, for those who are used to more precise and exacting standards (such as preparing and submitting manuscripts to editors), just the process of composing and sending an email hands-free takes significant time.

In today’s multitasking world, many of us are used to doing lots of things at once and often very quickly. Most of us aren’t thinking of the steps we take when we select and boldface three words, italicize another, start new paragraphs, spell-check and then give it a once over before hitting the send button.

Before my right hand quit working I was unaware of this highly choreographed dance. Removing my hands from it showed me what it takes to make that dance possible.

Taking Dragon For a Spin

The first version of Dragon I received had a glitch which rendered the “guidance” window largely inoperative, meaning I couldn’t see the multitude of pre-programmed commands that were available to me. I used a hard copy PDF cheat sheet that showed me how to make commands by voice that Dragon would understand and do, but it was a cumbersome and frustrating process, and one that has now been eliminated with a recent software update.

And there are a ton of commands. Using Dragon I can compose and dictate emails and documents of course, but I can also open and close software, navigate browsers (in the Mac user case, Safari seems to be the browser of choice which is a drag since I prefer Chrome). Dragon has commands for user-specific software, in my case Safari, Messages, Text Editor, Mac’s Mail and more. It works with Calendar and has “global” commands for common tasks such as “menu navigation”, key commands (press control S for save) and lots more. Say “right angle bracket” and you’ll end up with “>”.

From a voice recognition perspective, Dragon does a pretty fantastic job given the variables at play, including any sorts of changes to my voice or speech pattern, word choice and use, etc. It is especially good at recognizing celebrity names for some reason. But it gets tripped up when there are multiple meanings for the same word (“sale” and “SAIL” for instance) or when there are words that I want to use which are also commands that it understands (the word “copy” for instance). I am currently experimenting with Dragon’s custom auto text entries but have not mastered that function. Yet.

I also took advantage of Dragon’s transcription feature which works pretty well and for anyone who has had to transcribe long recordings it’s a huge improvement. Unfortunately it does not work for multiple voices within the same recording, an equally huge bummer for someone like me who needs to record and transcribe a lot of interviews. Maybe with some work and experimentation I can figure out how the feature may be more effective and useful for my needs.

And time and use are important considerations. Dragon for Mac has plenty of nuances); sometimes a request for a new line is met with the word “new” on a new line and sometimes a requested second “new line” doesn’t happen. Sometimes a command for “all caps” works and sometimes it doesn’t. Sometimes Dragon adds an extra space when starting a new line, sometimes it doesn’t. That may be user error on my part or just an idiosyncrasy that needs tweaked (when I said “tweaked” Dragon mistook me and launched Twitter instead ).

A request for a new line in Mail sometimes results in an initial capitalization on the new line. Sometimes it does not. Again, is it me or is it Dragon? It has also taken more than a little time trying to understand how to make commands such as “proofread this document” work. But it may be that I am not asking Dragon to do it using the correct command.

The application itself can be a little skittish. Dragon crashed multiple times as I wrote the bulk of this review (most within Pages). While this is a little bit extreme (I’ve gone several days without it crashing at all), the software does seem to be on the touchy side, and users would be wise to save their work frequently (of course Dragon includes key commands to help). In fairness to Dragon, it’s also possible that I am not using it correctly, don’t have the right software to support it, etc. On the plus side it does a nice job of self launching report emails’s to Dragon’s tech support.

But the biggest glitch for me was finding the right word processing software to use with Dragon. My ancient version of Microsoft Word was extraordinarily slow when running using Dragon, so slow that I worried  it was doom looping and as I went to force quit, finally, the words that I had just dictated crept onto the  screen. At that point I was concerned that I would not be able to use Dragon at all since I need a decent word processing application in order to write.

Taming the Dragon

For me the bottom line is that using Dragon (perhaps any voice recognition) is as much a developed skill as it is using a specific piece of software. Think about it. Dragon is like having a digital assistant that must work very, very closely with each user in order to learn his or her unique style, vocabulary and word choice and also execute very specific commands. In that sense it is a collaborative process and like all collaborations, the investment of time and patience is critical.

A few years ago I wrote a piece for a nationwide literacy campaign bemoaning the fact that boys generally do not read as well as girls do. In the research for that story  I learned that girls seem to be able to reach a state of “flow” more readily while reading than boys. “Flow”, as I understood it, is a state of being in which everything else in one’s mind seems to disappear save for a very specific focus (in reading’s case, comprehension), enabling superior outcomes. Sort of like hitting a really good golf shot (though I personally have never experienced that).

But for many of us, reaching flow within our digital world has to happen pretty quickly in order to keep up with the demands and distractions of so many alerts, requests, instant messages, emails, etc. The transition to “hands-free” digital interaction and flow doesn’t happen overnight. I am old enough to have used a typewriter for professional purposes and for a writer like me, not typing is an unsettling process.

Dragon touts its ability to allow writers to “think out loud”. Doing that by voice versus the synergy between thinking and typing and feel is a significantly different process for me. It’s sort of like trying to play a musical instrument by telling the instrument what notes you want to play versus playing the instrument itself in order to create the notes. There is a significant disruption and the flow is simply harder to achieve. Not impossible, just harder and right now, much slower.

Dragon comes with some instructional exercises, but again, we’re talking about complex processes including dictation, commands, spelling, proofreading, creative development and writing. Real world, real time learning is a given. My suggestion to other Dragon users is to develop a systematic approach that allows you to work your way through shorter, less complex and deadline-free projects that will help you master the intricacies of the application and then work your way up to larger, longer and more complex projects, and if possible without the pressure of a deadline. I would also recommend familiarizing themselves with the dictation commands as deeply as possible as they will be immediately useful and encourage users to trust their intuition as they use Dragon more frequently.

And I can tell that the more I use Dragon the more readily (and accurately) it responds to me. Sometimes I try to speak sentences just as fast as I can just to see how much Dragon absorbs and how much it gets correctly. It’s a fun game and the more I use Dragon the better we get at it. I say “we” because I play an important role in how well Dragon works; hesitation kills and Dragon works far better when I speak with continuity and certainty.

Nothing succeeds like success. The better we get at it the more I want to use Dragon and the more confident I am it will meet most of my needs and that I can be successful using it. I can also tell that at some point I will find a new type of flow without typing. It it will likely be different than before but that doesn’t mean it can’t be as good or maybe even better. And who could hope for anything more?

Hello world!

Today is day one at Mike Knight Writes…thanks for coming by!

I’ve written a ton of articles over the years for all kinds of publications and organizations and have had the great fortune of getting paid to learn and — at least temporarily — become a sort of expert about all kinds of things.

For about the last 16 or 17 years I’ve been developing a progressive form of Multiple Sclerosis.

I love storytelling and I’m going to write about people, places and meaningful ideas and issues in my life along with living with MS. I’ll post as often as I can (once I get a routine down I will share that, too).

Until then, thanks again for stopping by, I hope you’ll enjoy…Mike

PS: Soak up that new website smell while it lasts.