On the Other Hand: Leaning Left for MS

Some months ago my wife and I went out for dinner at our favorite sushi place. As is frequently the custom at sushi restaurants, the table setting included chopsticks. No forks.

I’ll be painfully honest here: We are woefully unskilled at using chopsticks. We try of course, feigning some ability for appearances sake before requesting forks out of both frustration and hunger (and likely to the horror of others in the restaurant).

But MS has turned my right hand into little more than a shiftless observer and has, for all intents and purposes, made using even a “decadent and blasphemous” fork with that hand hard (and more than a little messy, too).

Maybe it was the Kirin beer, but for some reason I tried using the chopsticks with my left hand.

And apparently that was “Lefty’s” moment to shine. I tore through California and tuna rolls, soft-shell crab, even the scraggly little salad that came with the meal. I was suddenly a chop-sticking master, deftly picking up single grains of rice with surgical precision and calm.

I’m not sure what excited me more, the ability to use chopsticks or the ability to use my left hand.

According to Scientific American, roughly 70-95 percent of humans are right-hand “dominant,” somewhere between 5-30 percent are left-hand dominant and an undetermined number of us are ambidextrous. Me? I’ve always been a righty. For writing and beer-bottle-lifting and hand-holding and shaking and everything else.

The chopstick affair was the first time I’d thought about my left-hand as the dominant one. But now I use it for my mouse, fork and occasionally for very limited handwriting, too. If you’ve ever want to be humbled (and who among us hasn’t?), try printing with your non-dominant hand. Then raise the bar and try writing in cursive. So much of MS has the ability to take you back to childhood (whether you want to go or not) and to a time when you had very little control over functions that we grow to take for granted.

I’ve long been told my handwriting was that of a physician (not in a complimentary way) and that was using my “good” hand. “Lefty’s” letters are childlike and labored, hard-pressed loops and crosses and dots that require immense concentration in order to be remotely legible and it seems for all the world as if I should be writing about Dick and Jane seeing Spot run again.

Many years ago I wrote “One Sick Puppy,” an article about a young couple trying to save Rico, their five-year-old Doberman Pinscher, from cancer. The disease began in his chest, then spread into one of Rico’s legs—as is somewhat common in big, long-limbed dogs—and his owners had elected to have the leg amputated in an effort to stem the progression and save his life.

I watched somberly as the surgeon removed Rico’s leg, then gingerly repaired the wound and stitched it closed. He spent the night at the hospital and the next day Rico’s owners took him home.

About a month later they returned for a checkup. I was waiting at the hospital for them, not quite knowing what to expect, but somehow fearing the worst. They folded down the rear gate of their rusty black truck, gently lifted his crate off the truck bed and onto the ground and then, as Rico wiggled and squealed impatiently, set him free.

To my surprise he fairly exploded out of the crate and then scampered inside, oblivious to the leg he’d lost. He was grinning from ear to ear, the way dogs do, happily nipping and teasing the other “patients” in the hospital’s waiting room.

I think of him and that moment from time to time now, hoping that I’ll have the wisdom and strength to not dwell too much on what I’ve lost and instead, celebrate as much as possible what I have left.

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 Three: Mariska Breland’s Pilates Hacks

Note to readers: This is the last of a three-part series focusing on the valuable role Pilates has played in my life with MS. If you missed the first two, you’ll find them here and here.

This column focuses on exercises and tips from Mariska Breland, a Pilates instructor diagnosed with relapse remitting multiple sclerosis (RRMS) in 2002. She also trains other Pilates instructors to work with MS clients.

Generally, these exercises and tips focus on balance, overhead strength and core strength. As always, make sure to check with your physician before before beginning any new exercise or routine — please!

Breland’s tips

Balance: Breland says “balance” is a combination of physical and neurological assets, including proprioception, vestibular and musculoskeletal ability and function. Unfortunately, all are subject to change because of MS progression.

1. Start by putting your “best” foot forward: Take off your shoes and socks. For those with foot drop (like me), going barefoot is the best way to actually feel the floor. So, take ’em off!

2. Keep your feet loose and mobile: The foot, Breland notes, has 33 joints, 26 bones and more than 100 muscles, ligaments and tendons. Our feet need to be very, very mobile, and using a tennis ball (or one of similar size), roll your foot over the ball in every direction, and side to side with enough pressure that you can see your toes spread out. Ideally you can curl and spread your toes with space between each toe. (It’s OK to use a toe spreader for help).

Mariska Breland does a leg lift to improve balance. (Photo courtesy of Mariska Breland)

3. Proprioceptive balance: Stand barefoot and try to lift up one leg. Hold for 10 to 30 seconds. Repeat on the other  side. To make it harder, hold your leg up and move it in and out, or forward and back.

4. Vestibular balance: The vestibular system responds well to head and eye turns, Breland says. Stand in a lunge and turn your head to the right, and then to the left. Look up and down. Repeat for 30 seconds. Make sure to hold onto something if you feel unsteady; your balance should improve over time.

Mariska Breland demonstrates a hip stability exercise. (Photo courtesy of Mariska Breland).

5. Hip stability: Come to a quadruped position (hands and knees, with hands under shoulders and knees under hips). Extend a leg back, but keep both hips on the same level. The inclination will be to dip into the leg that is on the floor; this indicates weakness in the hip stabilizers on that side. Hold for up to one minute. Switch sides.

Mariska Breland demonstrates a squat using the Magic Circle. (Photo courtesy of Mariska Breland)

6. Quadricep eccentric strength (stand to sit squat): Anyone who has struggled to get out of a chair knows that sometimes momentum is not a friend. Breland says it’s a frequent cause of falling, and hip instability or quad weakness can cause it to happen. To practice this exercise and get stronger, keep your legs hip-distance apart and slowly bend your knees, lowering yourself to a seat on a count of three to five. To progress through the exercise, choose a high seat to start and systematically move on to lower surfaces. (Make sure the chair isn’t going to move.)

Overhead strength

Getting something out of an overhead cupboard requires overhead, core and back strength to support the process and maintain balance. A “big problem with overhead strength is actually shoulder and upper-back mobility,” Breland says.  Try these to shore up your shoulders.

1. The “hanging cat” stretch” for mid-back muscles: Come to a kneeling position and rest your arms on a chair. Drop your chest between your arms and press your arms actively into the chair. Now (this is important) tuck your hips and round your back while your arms are extended. You’ll actually feel the stretch more in your lats and mid-back.

2. The big circle shoulder stretch: Do a really huge arm circle using a light weight (no more than five pounds). Shrug your shoulders up by your ears as you lift your arm high. It’s easiest to do this with your shoulder against the wall so you can make sure your circle is as big as possible. Do five repetitions in each direction.

Core Strength

Breland thinks of the core as the combination of abdominals and lower back.  A stronger core leads to better balance and fewer falls.

1. Hollow body hold (for the front of the body): Lying on the floor, lift your head and chest and pull your feet into your hips, hovering them off the floor. Try to keep your low back on the floor. Work up to holding this for one minute. It’s harder than it looks!

2. Superman (for the back of the body): Lie down on your stomach and extend your arms and legs. Lift your arms, legs, head (and chest if possible). Hold for up to one minute. Don’t forget to breathe!

Please note: When I began this series, I hoped I could combine these exercises along with the $100 home gym in one column, but it’s too much content. Normally, my columns publish every two weeks, but look for the home gym column one week from today. Sorry for the miscalculation!

***

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!

Pedal Pushing

Today is World MS Day and those of us with the disease are encouraged to share tips about living with this very strange illness.

Will do.

But first, a story.

Michelle and I went on vacation a few weeks ago to St. George Island, a tiny sliver of land some 4 miles off the coast of Florida in the Gulf of Mexico. We’ve been going there for nearly 20 years now and always look forward to seeing old faces and old friends.

I have progressive MS, meaning that the effects of the disease are  slowly but steadily worsening. In my case, the lesions — or scars — in my brain and along my spine are slowly rendering my right foot and right hand inoperable because the nerve signals aren’t connecting anymore.

I am however still able to ride my bicycle if and only if I have the toe clips I need to keep my  right foot on the pedal. The clips cost maybe $15. But they require a type of pedal typically found on better bikes (i.e., not the cheaper, beach cruiser type commonly found at the shops that rent umbrellas and bikes and sell suntan lotion and swimsuits and shot glasses).

Riding a bike is really the last piece of easy/normal mobility I have left (I need a cane to walk now and recently bought a walker). It’s funny how big of a deal it has become to me.

Last year we didn’t bring the clips along, choosing instead to try to fashion something similar out of camo duct tape bought at the Piggly Wiggly in nearby Apalachicola. Newsflash: Not necessarily a good idea.

We also rent a kayak while we are there; last year we saw a ton of dolphin,  sea turtles,  manta rays,  snakes and the like.

When we were at Journeys of St. George Island (our favorite shop) to rent a kayak in 2016 I mentioned to the guy who was writing up our order that I was trying to find a bike resource that rented bikes with “rat trap pedals” for our next vacation.

His name was Justin, one of the owners, and he said to let him know when we came back because he could help me out. This surprised me because Journeys doesn’t rent bikes.

But this year I brought my clips anyway, and we went to Journeys to rent our kayak. And Justin was there. And I reminded him of our conversation from last year.

And then he loaned me his bike for the entire two weeks that we were there.

I rode 70 miles along the trails that follow the Gulf.

My tip for World MS Day?

Don’t be afraid to ask for help. Our bodies produce endorphins and dopamine (mmm) when we help someone else and it makes us feel good. Physically and emotionally.

By asking for help we help someone else feel good and for those with MS and other disabilities, it makes life easier, safer and maybe more importantly, more connected to our community.

If you have MS and can (safely) help someone else, even better.

Happy World MS Day…and I do hope you found this post helpful;-).

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).

Three’s Company, Too

It was my 2015 annual check-in and my neurologist and I were in the exam room. I was sitting on one of those little stools with wheels, he was leaning across the exam table. We had just finished discussing my steadily worsening symptoms and treatment plan, which consisted of continuing the RRMS meds I was given while we waited for science and medicine to catch up.

“I need to let you know that I’m getting a second opinion about my treatment from a neurologist at the Cleveland Clinic,” I told him. We had recently returned from our first visit to the Cleveland Clinic and the Mellen Center for Multiple Sclerosis, “one of the largest and most comprehensive programs for multiple sclerosis (MS) care and research worldwide.”

“But in a bigger way,” I continued, “I want to be more engaged and involved in determining and leading my treatment. I don’t want to hurt your feelings and respect your ability, but I have to do everything I can to get the best possible treatment I can. There’s simply too much riding on it now.”

Stomach in knots, I waited for his reaction.

“That’s okay,” he said. “I understand and don’t blame you. I think I’d probably be doing the same thing. But I am glad you told me.”

Great Minds Don’t Always Think Alike

Not long ago I read an article promoting the value of getting a second opinion from doctors, the gist of which Mayo Clinic research finding 88% of the time that a “patient’s original diagnosis changed at least slightly when a second medical professional was consulted.”

What the article didn’t include were ways to actually have that conversation, no “five simple steps for telling your doctor you want a second opinion.” (We love our “five easy ways to be sexier or thinner or have six pack abs or dress right and to be absolutely perfect in every way.”)

I saw multiple neurologists over 13 years before being diagnosed and that came only after self-referring myself to a different practice than the one I’d been using. I am 57 years-old and like others my age, grew up believing physicians were infallible, placing them on an impossibly high pedestal. Combined with the dizzying prospect of having MS, the realization that doctors are humans too, and that the healthcare system is prone to mistakes threw me for a loop.

According to a 2012 National Public Radio program, Talk of the Nation, I’m not the only one who feels this way. “Doesn’t asking [for] a second opinion insult the doctor?” a listener asked the program’s expert panel. “How could it not? You’re saying that you don’t trust his opinion.”

Dr. Leonard Lichtenfeld, deputy chief medical officer, American Cancer Society, was among the panel. Lichtenfeld noted a dearth of well-trained primary care physicians in the United States. “We are not training primary care physicians in this country,” he said, saying that those physicians were specifically taught to “to bring the pieces of the puzzle together.”

MS has given me a far better understanding of how complex our bodies are and how challenging it must be to diagnose and treat serious illnesses like mine. More than that, I’ve learned that the healthcare system (at least in the U.S.) was in part created as a system of aggregating and selling healthcare service services and providers, not necessarily as a system that provides me with better health care.

No Way Around It

Professional caregivers, physicians and specialists absolutely deserve respect (and sometimes perhaps reverence). But it is my health and my life and the only ones who will suffer from the mistakes and glitches bound to happen with this complex disease and within the healthcare system will be me and those I love.

Ultimately there may be no easy way to ask or tell a physician — or any professional for that matter — that you want a second opinion, no simple steps or hacks or shortcuts. We are all humans and we all have feelings and sometimes our feelings get hurt. That’s life, just like my MS is.

I’m glad we had the conversation. I have grown to appreciate my relationship with my current neurologist and now see it as a partnership created for MY benefit. In the beginning there were two opinions that counted, his and mine. Two years ago I decided three heads would be better than two. Besides, we have relatives in Cleveland, have grown to love the city and look forward to our annual visit to the clinic. Cleveland is especially pretty by the lake in the fall.

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

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.