Turning Corners With MS: Ocrevus, Biotin and 2018

Like a lot of people with MS, I took part in the “Great Ocrevus Rush of 2017,” with the fanfare surrounding the release of the first therapy in the United States known to have some ability to stem the advancement of primary and secondary progressive MS.

I wrote about it, did the first two infusions, and received the same hopeful inquiries and support from my friends and family. And I’m scheduled for my third infusion in just a few days, on Jan. 8.

I also recently completed my first 12 months taking biotin.

Ocrevus (ocrelizumab) and biotin play important roles in my approach to dealing with MS; the former hopefully serving as a firewall against progression, and the latter ideally playing a role in re-myelination and possibly even restoration of function and capacity in some of my central nervous system.

For as long as I can remember, I’ve thought of the end of the year as turning a corner from one year to the next, thinking — perhaps hoping — that somehow whatever narrative I stitched together and hung on the prior year might positively inform the new one.

As if.

Yet the year’s end made me think about what — if anything — either drug is doing for me.

The disease’s very unpredictability seems to me to make much of an assessment difficult at best. My symptoms continue to gradually worsen. I’ve never had a lot of identifiable flare-ups, so there haven’t been many to reduce or eliminate. To be honest, so far, I’m not sure either has done much for me.

Or have they?

There’s an argument to be made that my symptoms might be even worse without one or both of the drugs. The only way to find out for sure is to stop taking them. Given the disease’s unpredictability in progression, even that assessment seems dicey. It’s a confusing dilemma, one that lots of people with MS encounter.

Curious about what others are experiencing with the drugs, I stumbled upon “Scientists are seeking new strategies to fight multiple sclerosis,” a November article in ScienceNews that’s helping me build a little bit of a framework that makes sense — at least to me, and at least for now.

For starters, there’s this:

“Multiple sclerosis is arguably the most complex disease ever described,” says Sergio Baranzini, a geneticist at the University of California, San Francisco, in the piece.

While I didn’t necessarily want to read that, the affirmation that everyone else finds dealing with this disease confusing seems somehow reassuring.

Part of it, Baranzini says, is that MS involves our autoimmune and central nervous systems, two of the body’s most complex systems. And part of it, according to Ashley Yeager, the article’s author, is that we still don’t know what MS is.

“Scientists aren’t even clear whether multiple sclerosis is a single disease or a multitude of maladies,” she writes.

Ocrevus, Yeager notes, isn’t a cure. “In fact, none of the 15 FDA-approved drugs for MS, which all modify or suppress the immune system, actually stop the disease. The drugs only reduce the number and severity of flare-ups and, in some cases, slow the visible marks of brain damage.”

Ocrevus “offers no relief for 30 to 40 percent of patients with primary progressive MS,” she adds.

I’m still hopeful about the drug and its efficacy, as is my neurologist, along with plenty of others. Yet my flare-up-free history feels like it’s flying in the face of the drug’s sweet spot, and I’m keeping my hope in check.

The same goes for biotin. I haven’t noticed any type of improvement and can’t say if it’s effective or not. On the other hand, who knows?

What Yeager’s article helped me better understand going into 2018 is that MS is an inextricable part of my life’s narrative and will probably always be. The sooner I’m OK with that, the better.

It’s possible, of course, that neither of the drugs will help me with the disease. It’s also possible that perhaps scientists and researchers will learn from why and how the drugs failed me and others and how they could be improved, and in doing so, take one step closer to figuring out “the most complex disease ever described.”

My experience with MS — good or bad — might somehow inform that.

That’s a narrative I can live with.

Happy New Year’s and best wishes for 2018!


This article first appeared in Multiple Sclerosis News Today.

Caregivers Dues: Tips for saying thanks to those who care for you

According to a 2015 report, there are 43.5 million caregivers in the United States today, roughly 6 million more people than live in the entire state of California. And according to a recent column by Ed Tobias, caregiving can be a hard and thankless task.

You can help change that!

November was National Caregivers Month and of course, there will be lots of gift giving opportunities as the year comes to a close. But getting out, especially in the holiday traffic, can be tough, especially if you have mobility issues. That’s where online shopping  comes in. Here are some ideas — most available at the click of a mouse — for showing your gratitude to those who do so much for you!

Sometimes, it’s the little things

Here are some “self-care” items from the New York Times Holiday Gift Guide 2017 that caught my eye (and that wouldn’t break most budgets).

Sockwell Elevation Firm Socks, $25. Comfortable, stylish and available for both men and women, these socks are made for people who do a lot of standing, walking and running around, making them perfect for your favorite caregiver.

Urpower 300ml Aroma Essential Oil Diffuser, $20. Featuring a nice clean design, this diffuser provides mist for up to seven hours while performing roughly the same as models four or five times its price, making it a nice gift for just about anyone (especially with winter’s dry weather coming).

Green Tea Water Bomb Mask, $7. Pre-loaded with a “hydrogel”, this sheet mask helps refreshen the user’s face, leaving it all tingly and glowing. That’s a lot of value for $7, plus it’s cool looking, too!

The write stuff

According to dailycaring.com, “Writing in a journal is a surprisingly effective way to reduce caregiver stress. Gifting them [caregivers] a beautiful or inspiring journal is a great way to encourage this therapeutic activity.” The site recommends the Instant Happy Journal  as well as other journals found here.

Kick back and say spa!

According to Trip Savvy, a spa is “a place to receive massages, facials, body scrubs and other services in either a day spa or overnight setting.” In other words, it’s basically time devoted specifically to being cared for and pampered, making it an ideal gift for your caregiver.

Many nicer hotels offer on-site spas and if your budget allows, consider the gift of a weekend getaway with a spa for your caregiver. If you’re in need of care while he or she is away, consider professional in-home care while they are gone. And if your budget doesn’t quite allow, check your frequent flier points, hotel rewards and this list of great, affordable weekend getaways.

New to booking spa days or massages, or want to increase the chances of your caregiver having a great spa experience? Read this and this. And if you’re looking for a spa, try Spafinder. Just type in your ZIP code and the site will find spas (along with their ratings) near you. Buy your caregiver a gift card online, have it sent to your door and off they go!

Maid to order

Though these services may not be available everywhere, many house cleaning companies — especially the big, nationwide ones — offer gift certificates and gift cards with which to buy their services. Much like a spa day, who wouldn’t like someone else to come over and clean her house from top to bottom? No one, that’s who. No. One.

Get personal

It may not be easy, but be sure to express your gratitude directly with a thoughtful note and/or a hug. I come from a non-huggy family, but have learned how good a hug from someone who cares can make me feel. According to the Good Men Project, here’s how to hug like you mean it, and here’s what you’ll both get when you do: “A hug is this fascinating human gesture that has us press another person’s body into our own as a way of saying, ‘I so deeply value your presence that I’m taking this exact moment to feel you, smell you, breathe with you – essentially stamp your being into my cellular memory so that even though we may be soon apart, you will in fact always be with me in the living fabric of my existence.’”

Now get out there and be grateful!

Cue Me In!

I have every single malady associated with MS. I’m absolutely positive. Because whenever I find out about new one, or a new study that says we don’t sleep well, or we twitch or tremble, or suffer from this deficiency or that, I’ve got it. Got it, got it, got it. Got. It.

Or at least I think I do.

Somewhere in my info stream I ran across a story (Multiple Sclerosis May Affect Ability to Read Social Cues) about how those who suffer from MS may have difficulties reading social cues and interpreting what others really mean in conversation. The story and report isn’t all that recent (June 2017) so I’m sort of late getting to it. But I’ve got multiple sclerosis and I’m pretty sure habitual tardiness is a symptom of it. Isn’t it?

I was kind of delighted by the story and the study because it could explain so much in my life and might be an indicator that I’ve had MS far longer than I suspected. Those times when bosses, coworkers, spouse, family and friends seemingly asked for my opinion and I then shared it? I’m beginning to suspect that they didn’t really want one, and if they did, that perhaps I misread the level of directness and diplomacy they were wanting. I think it is actually called the “curmudgeonly cue” and wonder if it’s not an affliction that affects a much broader base of the population, perhaps mostly writers and anyone over 50. A half-century of living or more will get that for you.

Most kidding aside, I’m not quibbling with the study or its findings, but I do wonder how much of this is related to the stress of toting around the disease of the central nervous system and never quite knowing what that disease has in store? How much of it is a subconscious decision to not waste time and effort suffering fools gladly? How much of it is just me being a know-it-all jerk? I can tell I don’t process information and situations as quickly or as well as I once did (and so can my wife, which seems unfair, as I am even more flat-footed and defenseless when we have a disagreement).

In a greater way though, I get more than a little bit of MS related content in my info stream weekly if not daily. Lots of times when I read about a new manifestation or symptom I think, “Oh, I’ve got this, too. Crap!”. I spoke with a woman with MS last week who suffers from the same thing and I’m guessing lots of others with MS do, too.

The hell of it is that sometimes we do suffer from these issues, though my gut suggests many times we don’t. Likely it’s just fear of the unknown, and I think we in the MS community can give ourselves some forgiveness around that. Most days I feel reasonably levelheaded about all of this, some days I don’t and sometimes the ongoing progression of the disease and how it is affecting me is frightening. But I think I can be my own worst enemy, too.

Because I am the only one who controls my info stream, I set the preferences, I create my echo chamber. The constancy of the input, the research and studies and possible cures can be hypnotic and alluring, and it can become all too easy to lose my self in it and become a sort of disability diva that’s all disease, all the time. And I’ve got to be bigger than that. Not just for my own good, but for the good of all of those around me who are trying to help, care for and love me.

Like everything about MS — and life in general — I think it’s a matter of balance. I want to be informed, but not overwhelmed or constantly panicked. The balancing is finding, reaching and maintaining that fine line. Many times I have to share that I have MS, but it doesn’t have to be, and shouldn’t be, an ever-unfolding blanket that suffocates the life out of me or those I care about.

Unless, that is, a study comes out reporting that people with MS are prone to being funnier, taller, thinner and better looking than the rest of the population. I’m definitely gonna want to get some of that.

This column was originally published at Multiple Sclerosis News Today.

Soul Survivor: My Life with MS, One Step at a Time

Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated with me; like Ms. Powell, one of the early manifestations of progressive MS (and foot drop) I experienced was the weird inability to keep a flip-flop sandal on my foot (not enough “toe grip”). Which was a drag, because I had only recently purchased a nice leather pair — far nicer than any others I had ever owned, bought only because they were drastically marked down — and it was now obvious they would soon become obsolete, at least for me.

In a funny and powerful way, Powell’s shoes led to a cathartic experience and she shared what can be a sneaky benefit of MS: “Self-actualization came at a cost, the price being multiple sclerosis.” I’ll be honest — self-actualization prompted by MS is a work in progress for me, and I found the piece to be a very inspirational read.

Then came Searching for My Summer Sole Mate, a story on Slate about the pros and cons of shoe shopping with a podiatrist along with the podiatrist’s recommendations for smart summertime footwear. The long and short of that story is the podiatrist (shockingly!) recommends shoes with some structure and shares her current preference for Stan Smith sneakers made by Adidas. The tennis-playing Smith won two Grand Slam tennis titles in the early 1970s, quite an accomplishment, but not necessarily the stuff of legends (I’m old enough to remember him playing). The tennis shoe-Stan Smith, meanwhile, has had a longer lasting impact, selling 50 million pairs of the “saltine cracker of tennis shoes” by 2016.

Nothing like freshly polished boots…

The truth is my shoes and feet are never far from my thoughts. Progressive MS and related foot drop have transformed my right foot and leg into a slow-rolling, outward-turning, heavy mess. Shoes with any kind of stiffness or structure are hard to wear (my ankle rolls to the outside as does my foot, cramming my toes against the insides of my shoes). Plus, my balance is sketchy, so I prefer shoes with some give that let me “feel” the ground more acutely. A barefoot existence—at least where subzero winter temperatures are common—simply isn’t practical.

I own maybe 10 pairs of shoes, most either long-retired running shoes (my last run was in 2010 or so), a couple pairs of chukka-style boots and some general-use sneakers including a couple of old Nike Free running shoes that I bought to wear to the gym. Slowly I’ve retired most of my old shoes because they’re not comfortable anymore or don’t do enough to help me feel the floor, or both.

Two years ago I bought an ankle foot orthotic (AFO). Useful devices for addressing some of the effects of foot drop, AFOs also demand significant real estate inside the wearer’s shoe and seem really uncomfortable to me. When I was originally fitted with the AFO my orthotist told me I’d need to experiment with shoes to accommodate it, noting that I might need shoes 1/2 or full size larger to make wearing the device a bit more tolerable. Over time I’ve purchased newer, larger-sized shoes for use with the AFO, but now my right leg isn’t strong enough to lift the AFO anymore.

My new rides! For people with balance problems, give ’em a shot!

Somewhere along the line I repurposed an old pair of Nike Free shoes to wear in our garden where I wobble and try to water our flowers without falling down. Walking in the yard or dirt is especially hard and I customized the shoes by removing the shoestrings and insoles to make them easier to get in and out of, to make them slightly more forgiving and to heighten the tactile sensation between the bottom of my tingly feet and the inconsistency of the ground.

Like so many other lessons I’ve learned in my life, I’m kind of embarrassed by how long it took for me to see the obvious. About six weeks ago I purchased a new pair of Nike Free’s, hoping upon hope they’d help my balance and be comfortable enough to wear for long stretches of time. I’ve barely taken them off since I received them; in fact, all of the recent content around shoes and footwear has come while I await a new, “dressier” pair of the shoes that might be slightly more appropriate for “business casual” wear.

By no means am I recommending anyone run out and buy this shoe or that, and I sure don’t receive compensation from Nike. Only that MS — for me anyway — is a constant battle, but one that does yield victories and benefits and some very real silver linings.

As Powell aptly notes, “Upheaval in life is inevitable, but until you meet it with an openness to change, stagnation will perpetuate. I was ready for change and the shoes were but a symptom, the multiple sclerosis the storm. Amid the deluge, I stood still. I let my vanity wash away and intrinsically felt whole. I felt both a sense of calm as well as the desire for action.”

The truth is, with or without MS, we’re all on the same journey in life in so many ways. How we take it is up to each of us. I’m just grateful that for the time being at least I’ve found the right shoes to wear while I’m making mine.

Note: This column was originally published at Multiple Sclerosis News Today

How Pilates Changed My Life…And My MS, Part Two: Mariska Breland Practices What She Teaches

Like so many people with MS, Mariska Breland remembers the disease’s onset as a combination of strange, seemingly disparate maladies that included tingling in her left thigh, numb feet, skin that felt “too thick” around her toes, foot drop and double vision. One left her speechless.

Mariska Breland. Photo courtesy Maliska Breland

“I was at work and all of a sudden I couldn’t speak,” she remembers. “It was really short, two minutes or something like that, but I realized I was unable to form words properly.”

It was 2002 and Breland, then 27, was ultimately diagnosed with relapse remitting multiple sclerosis. The diagnosis and symptoms shook her. “That was a major hit for me,” she says.

Fitness and exercise had long been an integral part of her life. “I was always somebody who liked working out,” she says. “I wasn’t a super-athletic person but I liked doing movement activities. And I was really into playing tennis. It was the sport I played in high school, never played in college, but it was my sport and the one that I really, really loved.”

The blow, she says, left her down — but not out. “If anyone had to describe me in one word it would be ‘determined.’ ”

Determined to maintain as much of her fitness- and lifestyle-regime as possible, Breland asked her doctors for recommendations. Some told her not to bother.  “At that time some people were actually anti-exercise,” she says. Others suggested she try yoga or Pilates.

Breland was one step ahead of the recommendation; prior to her diagnosis she had become “obsessed” with yoga and experimented with Pilates. The experiment did not go well. “I ended up getting a Pilates DVD and I hated it,” she says with a laugh. “It was awful.”

But Breland says she discovered yoga and Pilates helped reduce the numbness and tingling she felt. Gradually Breland transitioned from yoga to Pilates and earned accreditation as a PMA® (Pilates Method Alliance) Certified Pilates Teacher and Continuing Education Provider.  She taught her first Pilates class in 2003 — one year after her MS diagnosis.

In 2010 she opened Fuse Pilates in Washington, D.C. As part of Breland’s comprehensive Pilates certification she completed a year-long research project on Pilates for MS patients, which she expanded into an in-depth multi-day Pilates for MS advanced teacher training. She has now led 44 classes (my original Pilates instructor, Tobie Hall, was part of Breland’s second class).

Mariska Breland instructs a client using a Magic Circle. Photo courtesy Mariska Breland

Breland calls Pilates “special” in comparison to other types of fitness modalities for three specific reasons. First, she says, Pilates focuses on strength, flexibility and balance in almost every exercise, benefitting nearly everyone with neurologic conditions. Flexibility work takes joints through the range of dynamic motion movement, but does so in a way that won’t aggravate spasticity. Work on the Reformer, a machine frequently used in Pilates exercises, works the vestibular system which improves balance.

Second, Breland says, is that the core work done in Pilates can decrease the risk of falling. After developing liver complications Breland underwent two abdominal surgeries, erasing the core strengthening work she’d been doing for years. “I went from having really great  abdominal strength to to having none,” she says. “I remember tripping, I was walking with my husband, and I couldn’t get my feet under me. And I could see for myself that if you don’t have a really strong core, you would have terrible balance.”

Mariska Breland doing a foot inversion exercise with foam roller. Photo courtesy Mariska Breland

The third reason Pilates is meaningful to the MS population, Breland says, is that it is so easily modified to accommodate changing levels of ability associated with the disease’s progression.  “You take away the limitation so they can succeed at something, rather than looking at someone and saying ‘We can’t do this because you have this weakness here.’ ”

Pilates, Breland says, isn’t a panacea. But it always helps. “When you feel like your leg is not working as an example, I know if I could get on a Reformer or hook a spring to my leg, or something like that, even if it’s a small amount of movement, it just sort of reconnects your brain and your body in the conversation,” she says.

“I do have some days where I don’t feel like I have MS because I don’t feel like it’s limiting my movement, sort of like the same feeling you got from your workout back in the day,” she says. “You’re so focused on what you’re doing and you sort of feel normal,” she says. “And any chance you get where you feel a little bit normal is nice.”

Find out more about Mariska Breland, sign up for her newsletter or find Pilates for Neurological Conditions Trained Teachers around many parts of the world here!

Don’t miss the final installment of this series which will focus on low-cost Pilates and resistance exercise you can do at home!

This column was originally posted at MS News Today!

Take No Prisoner: How Pilates Changed My Life…and My MS

When I was diagnosed with MS in December 2013, my most visible symptom was a waltzing shuffle that was slowly changing my my once-purposeful gait into a wobble (leading some co-workers to believe I was drinking on the job). Like spring flowers, other symptoms blossomed soon enough. At the time, my doctors had prescribed physical therapy sessions for me. And driving home alone after one such session I was trying very hard not to cry.

I would not describe myself as a fitness fanatic, but after I quit smoking in the mid-90s I had become addicted to running’s endorphin high and the clarity and focus it fostered. Freelance writing often provides the perfect schedule for runners (write in the early morning, run around 11 a.m., come home, shower, eat and then work the rest of the day). I was very active, running, playing tennis, hiking and biking and — almost accidentally — staying fit.

But the physical therapy that I was taking included a series of timed or counted exercises meant — it seemed — to measure how long it took before I could not successfully complete the exercise. Inadvertently it emphasized to me what I could no longer do, reinforcing what I had lost and worse, was losing, rather than reminding me of how much I had left.

Frustrated, I returned to my physiatrist, an energetic former gymnast who understood my need to remain physically engaged in life. Conventional physical therapy wasn’t the solution. “Why don’t you see if you can find a personal trainer who understands MS clients?,” she asked. I couldn’t Google fast enough.

My search stalled pretty quickly; much of what I could find were group sessions that emphasized general movement and mobility. I still had a great deal of capacity left and didn’t feel I would get enough of a challenge from those sessions. Then I found a Pilates instructor who was trained to work with MS, Parkinson’s and other clients with neurologic issues.

And then my life — and my MS — took a turn for the better.

Joseph Pilates, the gentleman who created the resistance-based exercises, equipment and routines, was born in Germany in 1883. Small and sickly as a child and picked on by the bigger kids, Pilates became determined to overcome his disadvantages and by the age of 14 was posing as a model for anatomy charts and made a living as professional boxer. Pilates was teaching self-defense to Scotland Yard police when World War I broke out and he was imprisoned in England’s Isle of Man along with other German nationals as “enemy aliens.”

Determined to stay fit while in prison, Pilates fastened bed springs to the foot-and head-boards of the prisoner’s beds and created resistance-based exercises so his fellow inmates might also stay more physically (and emotionally) fit. Pilates’ focus was strengthening users’ core and balance as the foundation of strength and capacity — all of critical importance to many with MS. These crude prototypes became the forerunners of the equipment used in contemporary Pilates around the world.

I continue to attend biweekly Pilates sessions with specially-trained instructors. Though there are innumerable routines, all require a sharp mental focus (not unlike golf, tennis, running, billiards, etc.). I have found Pilates to be extraordinarily challenging and physically rewarding. While it doesn’t provide the endorphin high, I frequently get lost in the pursuit of doing the exercises properly, which in turn creates a very beneficial type of mindfulness and for 55 minutes I often forget that I have MS at all.

I didn’t know about Pilates’ imprisonment or the origin of the practice when I began, yet only in the weirdly-perfect way that MS is, it now all makes sense to me. MS is slowly imprisoning the physical me as it keeps creating more challenges for how I physically move through my world and my life. Besides taking Pilates instruction, I have created a home workout routine for emphasizing resistance so I can build strength and balance through it. Like Pilates, I’m trying to learn how to make this gradual imprisonment not just tolerable, but somehow amenable and maybe even in some ways, even beneficial.

Chances are very good that I won’t be posing for any anatomy charts any time soon. Pilates may be a great form of exercise but it’s not a miracle worker, at least not like that. Yet there are moments during my sessions and after, on the drive home, when I feel really strong and fit and just a little bit free.

(This post was originally published at MS News Today).

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.