My (Progressive) Moment of Truth

“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

 

 

 

 

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).