“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and I as we all sat in the examination room.
It was just after 11 a.m., Friday, January the 18th.
January has become one of two pivotal months in terms of my MS treatment plan, and now includes my first Ocrevus infusion of the year, the first of my semi-annual neurologist and physiatrist visits and initial sessions with my physical therapist. I’ll do the whole circuit again in June.
My wife doesn’t typically accompany me on these appointments, but Amy had relocated to another city, too far away for me to be comfortable driving myself. The two had never met, and since Amy plays a pivotal role on my MS team, I thought it would be good for them to meet. Plus, the following Monday was Martin Luther King Day, and we were looking forward to a four-day weekend together.
We had just finished telling Amy what we were planning to do to better accommodate my progressing symptoms, including buying a bigger vehicle to hold and carry the rigid-body, self-propelled wheelchair Amy had ordered for me. After months of drawing up plans and meeting with contractors, we were finally ready to pull the trigger on adding a half-bathroom to the main level of our old home in order to reduce my trips up and down the stairs and to minimize accidents — of all kinds — along the way.
Neither of these solutions were inexpensive, but it keeps getting harder for me to walk, I fell a lot more last year and the stairs in our home seem to be growing in number and somehow keep getting taller, too.
We had shared our plans with her hoping for validation or direction. She diplomatically recommended a mobility van or vehicle, while adding that if we were going to renovate our home, we should add a full bath and bedroom to the ground floor of the house. She just wanted us to invest our time, effort and money effectively, she said, and that our initial fixes might be short-lived at best.
Her recommendations were wildly more expensive than what we had envisioned. It was NOT what we expected to hear.
Like so many MSers, my diagnosis in 2013 came after years of seemingly disconnected problems followed by a couple of textbook signs of MS (foot drop, special introductory episodes of “bowel and bladder” issues). Outside of being unable to lift my right lower leg one summer afternoon, though, I hadn’t had any obvious flareups or exacerbations.
I was 53 at the time.
Initially my neurologist thought I had relapsing-remitting (RRMS) MS. I asked him the standard list of questions trying to get some — any — kind of grasp of what was going to happen to me next and when. He was always positive and reassuring, yet always somewhat evasive when answering my questions.
Anxious to end my anxiety, I spent more than a little time researching disease outcomes for RRMS patients. In my mind they appeared to be potentially significant but possibly not as disabling as the progressive forms. My symptoms were comparatively mild, my neurologist obtuse-yet-positive. Much of what I read about the disease stressed maintaining a positive attitude, too.
I began to think that I might get lucky and avoid significant progression, that my symptoms might plateau, possibly even end altogether, and that mine might be a relatively benign experience.
At the time that seemed “positive” to me and my wife and I continued trying to live our new MS lives the best we could. We didn’t have a plan for doing that, or know where to turn for help, and in the sturm und drang of the disease, we just kept going without one.
My symptoms continued to worsen. By late 2016, it was apparent I had the primary progressive (PPMS) form of the disease. Given my age at onset and the types of symptoms I had, it made perfect sense.
In 2017 I made Amy the captain of my MS healthcare team. Straightforward and funny, she was the first MS-related doctor I connected with. I knew she was devoted to helping me anyway she could and I knew she would tell it like it is.
Until recently, I’ve found the unpredictability of MS, how it develops, how it progresses — or doesn’t — maddening. I’ve learned why it was impossible for my neurologist, or anyone else, to predict my ever evolving MS. I’ve also come to realize that uncertainty can’t be easy for doctors to explain to their patients and how hard it must be for them to help their patients remain upbeat at the same time.
But that doesn’t change the need to make some very challenging life decisions. Unsettling as it was, we needed to hear what Amy said that morning. To be honest it gave me a sense of relief. Because for the first time since I was diagnosed, I finally have a better sense of what to expect.
This column originally appeared in Multiple Sclerosis News Today
“Today we’re going to talk about the ‘Four P’s,’” Stefani says. “You’ve probably heard of these already, but let’s go through them anyway.”
I look at her the way a dog tilts its head when it hears a high-pitched whistle.
Kind of like this.
“No, I haven’t,” I say.
“You’re kidding,” she says, incredulously. “How long have you had MS?”
“I was diagnosed in 2013 but I think it went undiagnosed for many years before that,” I answer.
For the longest time I’ve had the nagging feeling that my MS team and plan have been missing something. This exchange only confirms my fear.
To put a finer point on it, while plenty of articles and resources recommended that I review my “treatment plan” with my “MS specialist,” up until this year I had no idea who my specialist was, and if I had a formal plan, it must have been top-secret because no one shared that with me.
Instead, my team consisted of isolated specialists and care and treatment and drugs with seemingly no eye on how I should actually live my life with a progressive disease like MS, both now and in the future.
Yes, the National Multiple Sclerosis Society and other resources have a lot of information and even people online that I can ask for help, referrals and guidance and I am incredibly grateful for all of these resources.
Helpful as they are, they can’t be with me within the healthcare my insurance allows me to have, can’t meet with the different doctors I see or knit together the plan that’s directly applicable to my unique flavor of MS.
Not long ago, I wrote about discovering that I was in charge of building the MS treatment and team around me and how I now planned on building.
Which is where Stefani comes in.
Stephanie is an occupational therapist I began seeing in early February.
Originally, I thought occupational therapy meant addressing work, or “occupational,” issues. Getting a better desk or desk chair or computer screen, things like that. I’m simple that way.
But the American Occupational Therapy Association, Inc., says it’s far more than that.
According to the Association’s website,“Occupational therapy practitioners ask, ‘What matters to you?’ not, ‘What’s the matter with you?’ In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations).”
Stefani has prepared a comprehensive 10 visit evaluation for me and today’s visit is all about energy conservation (and the previously mentioned “4P’s”: Prioritize, Plan, Pace and Position).
At first blush, these seem pretty straightforward and sort of um, simple, so they ought to be the perfect fit for me.
“You need to start developing more efficient ways of doing every day tasks so that you can save your energy to do the things you really want to do,” she says.
Though it’s not specifically focused on MS, Stefani gives me a handout that more thoroughly explains each of the “P’s” and we work our way through it.
Some of the recommendations are pretty straightforward and make immediate sense to me. Like when I’ve got multiple things I want to get done to prioritize them and do the most important task first to make sure it gets done. Planning not just my day, but also scrutinizing activities and tasks so I don’t waste trips or effort. To rest before I feel tired and to use pursed lip breathing in order to increase my oxygen intake and corresponding energy level.
Other suggestions, like sliding objects instead of lifting them or avoiding spray cleaners because they might irritate my lungs and disrupt my breathing (and energy level as result) seem, at least at first, a little impractical.
But the net effect of the visit — and frankly, occupational therapy’s role in my MS “plan” — is to more readily pinpoint where I am likely to face MS-related challenges throughout my daily life now, how to address those challenges and how to better prepare for the future.
In a disease that so often feels like an unsolvable puzzle, surely this must be one of the pieces.
This column originally appeared at Multiple Sclerosis News Today.
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.
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!
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).
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.
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.
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.)
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.
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
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.
“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).
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.”
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!
Today is World MS Day and those of us with the disease are encouraged to share tips about living with this very strange illness.
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;-).
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).
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.)