Reality Check

I’ve never believed nor expected yoga to cure the multiple sclerosis I live with.  I know there are a few yogis who swear that yoga has cured them or alleviated their symptoms to the point of appearing cured. But, that’s not why I started yoga. For me, yoga has been about managing the symptoms of both MS and fibromyalgia.  Something to soothe both body and spirit. Maybe even to mitigate some of the symptoms. So, imagine my surprise when I recently realized that somewhere, deep down in my subconscious, a part of me had been expecting yoga to delay the progression of the MS — and was maybe even a little ticked off that it hadn’t.reality-check

That realization has been a long time coming.  I haven’t written in a while because the last year has been challenging and its taken some time to figure stuff out.  The fatigue that came with last summer’s flare up took forever to go away — in part because I didn’t want to listen to what my body was telling me.  Instead, I began teaching additional yoga classes in the fall because students in the Modified Yoga Classes wanted yoga more than once a week.  YAY!  What yoga teacher doesn’t want their students clamoring for more classes?  After a month, I began getting sick — I had some type of cold every month last October through April.  And I was always tired.  Still I didn’t listen.

Last Fall was about the same time I began to experience an emotional roller coaster ride every time I came to my mat to practice.  During the first few weeks of this ride, I would get about half way into my asana practice before the strong emotions would arise. Then I’d become either very angry or end up sobbing.  I’ve experienced tears on my mat in the past (but never anger) and when I did, I’d use my breath to ride them out.  THIS was different. Riding it out wasn’t working for either emotion..  As the weeks progressed, the emotions surfaced earlier and earlier in my practice until I couldn’t step onto my mat without instantly becoming either angry or sad.  So, I stopped practicing.

Seriously, that was my solution. I just stopped. My excuse to myself was that I was too tired or in too much pain to figure out what was going on.  And, that was partially true. But, looking back, I was also avoiding messages I didn’t want to hear.

I quietly told two good friends about what was happening, but continued to ignore my mat. Then this negativity began to creep into my teaching.  I would wake up on teaching days and find myself wanting to do anything but teach. [If you are one of my students, please know this lack of desire had nothing to do with you.] The feeling would pass once I got to class. But the drive there was long and painful. I knew I had to do something.  But the holidays were upon me and with them came the grief of saying good-bye to our 11-year-old cat, Tasha.  Sweetest cat that ever lived, bar none.

Eventually I reconnected with a therapist I’d worked with in the past. And with her help, I am finally at a point where I am willing to hear what my body has been saying: the MS is progressing and change has to happen.  

There hasn’t been major progression — no canes or walkers or permanent vision or cognitive loss. But little by little abilities are diminishing.  The emotional roller coaster ride on my mat came from two things: (1) my daily asana practice is where the changes in my physical abilities has been most noticeable, and (2) as my therapist says, my mat is my Place of Truth. On my mat, I couldn’t lie to myself about changes I’ve had to make in the way I do a particular asana or the time I’m in a pose or even the fact that these days, a lot of my physical practice is done from a chair instead of a mat. I also couldn’t ignore that I was feeling a bit betrayed that my practice hadn’t kept these changes from happening (who knew?). How dare the practice that was supposed to be my refuge, instead be the magnifying glass through which loss in ability/energy would be most visible!  It’s been a while, but I believe my last post hinted at the possibility of a “dark side” to transformation on your mat. This was it, baby.

For the first time since being diagnosed in January of 2005, I have more than just moments of not wanting this disease; more than a passing fear now and again of what the future will bring; frustration that now I can count on my body even less than I have in the past. It has felt like MS was taking my practice and my ability to share it through teaching. Even though neither would be the first things I’ve lost to this disease, the grief and anger felt as fresh as the first time I had to alter my way of living to accommodate symptoms.

Two weeks ago what was supposed to be an evening of yoga and dinner with several gal pals turned into a reiki session and dinner with 2 of my dearest friends.  Reiki replaced yoga because I’d been dealing with headaches that were exacerbated by moving my arms or bending forward and the friend that could get to my house before dinner is a reiki healer (my term for her). We’ve worked together before and sessions with her have always been healing.  This was no different.Reiki_CloseToHome_005

Thanks to things that came up during the reiki session, I now realize I have been trying to fit my practice and teaching into my idea of what these things SHOULD BE — how a yoga teacher’s personal practice SHOULD LOOK; what a career as a yoga teacher SHOULD BE.  And that’s another thing.  Somewhere during the last 2 years, as I began to teach more classes for pay, teaching yoga has moved from a calling or service to a career.  Not that it can’t be both.  It can. But I had turned it into an either-or as I followed the “shoulds” in my head. I’m always telling students not to worry about how the pose looks, but how it feels; to find the version of the pose that fits their abilities in that moment. Apparently, I haven’t been following my own advice on or off my mat.

Yesterday, I experienced another reiki session with a different healer.  This time I received confirmation of several things I’ve been feeling I needed to do/work on since the session with my friend. The path ahead is not all clear.  But, I do feel like I’m back on the path the universe has for me instead of the one in the “should” center of my brain.  To paraphrase country music singer Lynn Anderson (and apparently also Martina McBride and Suicide Machine), “I beg your pardon, yoga never promises a rose garden.  Along with the sunshine, there’s got to be a little rain sometimes.”  And if you’ve ever walked through a rose garden, a few thorns as well.



MS, Cognition and Yoga: What I Learned

(Cue the Voice-over Guy) “Previously on Clear Reflection Yoga”:

Now, back to the current/recent flare-up.  As I mentioned two posts ago, it took a couple of weeks after the leg weakness set in to realize I was experiencing cognitive impairment (CI).  My first reaction was, “Oh, so that’s why writing my blog was so difficult.”  My second was to laugh at the universe’s sense of humor in taking me from researching yoga and MS-related cognition issues to experimenting with them.  In all honesty, I don’t know if my reaction would have been the same if I’d still been in fund development or any other field that required the cognitive functions that were on the fritz.  Since I can’t step into an alternate plane of existence (if I could I’d chose the one with cures to MS and fibromyalgia), I’ll share what I learned.

My experience mirrored the findings of the little research I found on yoga and MS-related cognitive impairment.  Yoga isn’t going to make CI symptoms go away.  It’s not going to make the exacerbation heal more quickly.  But it definitely makes the whole thing easier to deal with.

influence 1The first thing I noticed was when I found myself having difficulty, I automatically went into Yoga Breathing. I teach that one of yoga’s goals is to learn to pause and respond from a place of thoughtfulness, rather than following a knee-jerk reaction.  To help with anxiety and panic attacks, or the general need for calm, I teach Dirga Pranayama (3-Part Yoga Breath), encouraging students to practice when they are feeling calm so it “kicks in” when they aren’t.  Pausing to breathe gave my brain a chance to try to process.  When the processing didn’t happen, pausing to breathe gave me a chance to try another tactic.

For example, when the clerk asked, “Paper or plastic?”, what I wanted to say was, “Wet stuff (meaning lettuce and spinach) in plastic.  The rest in paper.”  But, when after a beat or two I could tell that wasn’t going to happen, I switched gears to “whatever is easiest for you.” During my previous experiences with CI, not being able to answer the question the way I wanted would have started a spiral of frustration that, in all likelihood, would have included tears.  But this time, the simple act of pausing and breathing kept me from feeling overwhelmed and frustrated.

And when there didn’t seem to be another tactic that worked, breathing allowed me to find a place of acceptance, in that moment, rather than pushing/forcing.  Because the only thing pushing or forcing would do is ramp up feelings of frustration.

influence 2A couple of days after I realized I was having CI problems I went back to writing my post.  I changed the title to “Now – what was I going to say?” and changed my approach from analysis of the research and their applications, to a story about what was happening with my own cognition. In doing so, most of my writing difficulties vanished. This was true even though I included some of the same research information.  I decided to try using storytelling as a way to communicate whenever possible.  I think this noticing of “what was working,” was a direct result of practicing mindfulness and present-moment awareness.  These practices teach us to look at the whole of our experience, not just the part that is squeaking the loudest.  If I had keep my focus only on what was wrong, I would have missed out on something that turned out to be very helpful.

Staying in the present moment is helpful for everyone.  But, I think it’s particularly helpful in the case of MS, or any other illness that takes a relapsing-remitting form.  Exacerbations of any type can be upsetting, if not down right scary.  It is so easy to slip into worrying about the future or ruminating on the past. I love the following quote by davidj, in “Freedom Resides in the Present,” Deepak Chopra Newsletter, July 2012.

“The past is the known and offers no opportunity for choice and possibility. And the future exists only in the imagination. Freedom lies in the present moment, the only place where we can choose from an infinite range of possibilities.”

It is so true.  Focusing on what I used to be able to do is depressing and a waste of energy.  Trying to imagine the future is impossible.  Every person’s path with MS is different.  The possibility lies in now, this moment.

influence 3This leads me to the concept of “impermanence,” which is really a whole post in and of itself.  What I’ll say here, is that remembering the cognitive impairment wasn’t going to last forever was very helpful.  Since being diagnosed with MS, I’ve become a big fan of neuroplasticity.  In its simplest definition, neuroplasticity refers to the brain’s ability to change and regrow connections between neurons.  This concept is tied to developing new habits and to learning.  It’s also the reason those of us with relasping-remitting MS often recover abilities after an exacerbation.  In many cases the brain grows a new neural pathway around the spot of the plaque.  I know this is a very simplistic explanation, but its in the name of trying to keep a long post from getting longer.

To reduce frustration, I shared what was going on this those in my life.  Letting people know I might not be able to answer a question quickly, reduced the pressure to do so.  Less pressure = less frustration.  And everyone’s reaction to my situation was great.  No pity, just understanding and patience when needed.

While yoga did not improve the CI problems, I believe two acupuncture treatments I received during this time did.  I get acupuncture from a neurologist a couple of times a month to help with fibromyalgia pain, spasticity and fatigue.  It’s a nice complement to my yoga practice. The doctor is very much a Renaissance Man in his blending of Eastern and Western medicine, as well as traditional with “alternative.”  I’ve had no trouble accepting the results of needles in my belly to help with fatigue or in the webbing between my thumb and index finger as one of the “main gates” to help with something else.  But the fact that a needle in the area of the crown of my head actually improved my thinking is something COMPLETELY DIFFERENT.  That seems very “woo-woo” for lack of a better term.  If I sit down and look at the various meridians used in acupuncture it might feel more concrete. Or maybe it won’t.  And to be honest, right now I don’t know that I care.  I’m okay with “woo-woo” since two treatments, two weeks apart definitely made a difference.  So, if you are dealing with MS-related cognitive impairment,you might want to check out acupuncture.

momentumThe newest edition of Momentum (National MS Society magazine) arrived in the mail last week.  One article noted on the cover deals with cognition impairment.  They don’t mention yoga, mindfulness or acupuncture as coping tools.  But, its still a good read.

Be good to yourself.


My Personal History with MS and Cognition

In my last post I shared my discovery that the current MS exacerbation was effecting not only my legs, but also some of my cognition functions.  In it I promised to use the opportunity to explore/do field research on how yoga might help with the cognition aspect. I kept that promise and I will share what I learned.  But, I think telling a bit about my previous encounters with MS-related cognition issues can provide important perspective. To keep this post from becoming even longer , I’m making this Part 1 of a 2-parter.

I was diagnosed with MS in January 2005 and that June began to have trouble with many of my executive functions (planning, problem-solving, switching tasks, verbal reasoning, working memory, etc..).  I was working in fund development, an area I’d been in for 10 years. The work was highly dependent on executive functioning skills and required the ability to juggle several projects at once. One day I found myself having trouble reconnecting with my train of thought when switching between projects.  Another day I’d read guidelines and information material from a potential funding source and discover I couldn’t translate what “We” did into language that matched what “They” were interested in.  I also began to struggle with pulling information I knew from my brain to my lips.  Then there was the day I sat down at my desk and had no idea where to start.  I was so frustrated.  Many of my drives home were made in tears.

No one had told me MS could affect my ability to think.  Back then, cognition problems weren’t on most lists of potential MS-symptoms.  I thought I was losing my mind.  I have always been labeled as “smart.”  In school I ran with the “smart kids” and always gravitated towards people with a quick wit.  Multi-tasking was second nature and the field of fund development had fit me like a glove.  Now, my gloves had holes and I had no idea why.

I developed coping skills that, for the most part, kept my struggles hidden at work.  (In writing this I’ve realized that these coping skills also kept my neurologist from seeing how bad the problems were.) I confided in the receptionist and my assistant, and will be forever grateful for their help during the summer of 2005.  Still, staying on top of things required an extraordinary amount of mental and physical energy.  I had struggled with fatigue from the start and these added challenges drained me.

When I spoke to my step-mom about what was going on, she told me that my uncle (who’d had MS and passed the year before I was diagnosed) experienced cognitive difficulties.  It was something my parents had chosen not to tell me because (1) they didn’t want to scare me, and (2) they hadn’t been sure it was MS-related.  Afterall, he lived most of his life during a time when it was thought MS couldn’t effect cognition. A viewpoint that had only begun to be called into serious question a few years before my diagnosis.  It wasn’t until reading Facing the Cognitive Challenges of Multiple Sclerosis by Jeffrey Gingold in mid 2006 that I even came across another whose experiences mirrored some of mine.

The cognitive problems began to subside by the end of summer. But other non-health circumstances arose and I resigned in October.  I tried doing some consulting work in early 2006, but cognitive problems resurfaced that spring. That’s when I put my fund development career on the shelf.

Of all the MS-related symptoms I’ve experienced, none has messed with my sense of self and identity like the cognition problems did.  During those times I didn’t feel smart.  The wit wasn’t there — well, not at the speed I was used to.  I’d been a talker, a communicator.  I’d always said that I’d rather ask someone for a $1,000 donation than plan a special event. During these “phases” my ability to get my point across was compromised. Conversations with me became a guessing game for my husband as I substituted “thingy,thing-a-ma-bob, whatcha-ma-call-it” and other expressions for words I couldn’t find in my mental dictionary.

If I wasn’t the Smart Girl, the Witty Girl….  If I couldn’t drive the freeway or read a map due to spatial relationship problems….. couldn’t read a book without constantly re-reading passages to remember what was going on…. couldn’t make quick decisions, even on something as simple as “paper or plastic”…… wasn’t able to convince people and institutions to invest in the work my organization was doing… then WHO WAS I????

I didn’t rediscover yoga until January 2006. My understanding of it as more than “just stretching” was still in the future when the cognition problems resurfaced that spring. It hadn’t yet become a sustaining practice in my life.  I hadn’t yet learned I was more than what I did to earn a living; more than my hobbies and interests; more than my brain and sarcastic wit.

The “About” section alludes to the fact that I grew up in an abusive situation. I won’t elaborate here except to say that growing up with an abusive parent, especially when there is significant mental and emotional abuse,does a number on your sense of self-worth and self-esteem.  I saw a therapist earlier in the decade and thought I had worked through all that.  But, this identity crisis brought the old wounds and doubts to the surface.

Though it didn’t seem so at the time, this was a good thing.  I went back into therapy with a different counselor — one who understood both the dynamics of abuse and the challenges of living with a chronic illness.  The question of “Who am I?” required me to look at the stories I’d been told — stories I’d believed about not being lovable and “less than.” It was during this time that my yoga practice shifted from stretching to something much more; something healing.  And because of this shift and my practice for the last seven years, I was better prepared when cognitive problems arose this past July.

Until next time (when I really will share what I learned this time around)…..


Now — what was I going to say?

When I began this post a month ago (yes that’s right, a month ago), it’s title was “Heat, Cognition and Mindful Yoga.”  It had been prompted by the reading of two articles.  The first was the reprint of a blog post by Julie Stachowiak, PhD, entitled “Heat and Cognition” (original title “Hot Weather Can Impair Cognition in People with MS.”).  It was contained in the Michigan Chapter, Summer 2013 edition of the MS Connection Newsletter and summarized findings from a 2012 study that found:

“cognitive functioning in people with MS was more affected by hot weather than cognitive functioning in people without MS.  On cognitive testing, people with MS performed significantly better on cooler days than they did on warmer days, while people without MS performed the same regardless of the outside temperature.”


The second, Miraculous Practice, by Karen Macklin, came to me in a Yoga Journal e-newsletter and shared four stories of life transformed through yoga.  One was the story of a 32-year-old woman who suffered a brain hemorrhage that effected her balance, memory, spacial relations and concentration. 

She started taking a beginners’ Anusara Yoga class every day at the same studio, and found that the clear, mindful asana instruction improved her memory, spatial relations, focus, and sense of connectedness with her mind and body. But on a greater scale, she says, the daily practice showed her the value of acting deliberately. She learned that, on the mat, patience and focused intention translated into more precision in poses; off the mat, those qualities resulted in living in a more deeply satisfying way. “When you hold poses for a while, you have time to get where you want to be,” she says. “That’s how I feel about life now. If you are slow and mindful, you tend to be more focused on your goals and intentions.”

I have had my own MS-related cognitive problems and these articles got me to wondering, “What can yoga and mindfulness practices offer those dealing with MS-related cognition issues — heat-related or otherwise?”

I started reviewing books and articles on cognition and yoga, finding that most research dealt with healthy individuals, those with mental health problems (schizophrenia in particular), or those in the early stages of dementia.  I did find a very interesting preliminary report from 2002 that had looked at yoga’s effect on MS-related cognition issues and fatigue.  But, at the time had some difficulty finding the final report.

Setting the post aside, I attended an art fair where I got a bit overheated (even though we went in the morning and stayed for only an hour).  The following day the room where I taught yoga got extremely warm.  Between the two events I developed Legs of Lead (my legs feel as heavy as if they were made from the stuff) along with some fatigue.  As these are my usual responses to being overheated, I sought the usual remedy: rest, limited activity and staying indoors with the A/C cranked.

But, my legs didn’t respond as usual.  It took a week for me to realize this was an exacerbation/flare-up.  I HATE what steroids do to me. I was still functioning, just more slowly. So, I didn’t rush to get in to see my neurologist.  Thought I’d spend my downtime contacting the authors of the 2002 study mentioned above and tweaking this post.  But every time I tried working on it, I found myself getting extremely frustrated.  I just couldn’t pull my thoughts together.

Then a week ago the owner of the store where I teach most of my yoga classes called to ask some questions about changes I was making to the fall schedule.  I found myself having difficulty processing what she was saying, as well as getting my answers corralled in my mind and onto my tongue.  That was when I realized what a sense of humor the universe has:  This flare-up involves not only my legs, but also some of my cognitive processes!  So much for looking up old research.  I’m going to be doing fieldwork!!

I’ve had cognitive problems before, but not for several years.  And at the time I had not returned to yoga or even discovered mindfulness.  So, now I am on a journey to discover how they can make a difference with these cognitive challenges.  Thus far, the biggest benefit has been in using my breath to pause when I have trouble pulling my thoughts and/or words together.  My breath keeps me from pushing/forcing (I have found pushing only makes things worse).  But, I am sure there is more to learn. I will keep you posted.

Oh, and I did get the results of the 2002 study — well at least the abstract.  There was no change in MS-related cognitive functioning, but a significant decrease in fatigue.  So, maybe this fieldwork will be about coping instead of intervening.  I’m game for that too.

When “It is what it is” Isn’t What You Want

For the last 10 days or so I’ve been dealing with a lot of fatigue and muscle weakness in my legs. I’ve been describing the weakness as having quad muscles of jello.  I’ve become used to dealing with periodic fatigue — if one ever really becomes used to waking up only to find even a shower requires too much energy.  But this type of leg thing doesn’t happen very often.  My “usual” leg issues involve restless leg in the evening (medication mostly controls it), muscles tightness/”mild” spasticity (what I call Twisty Leg because it feels like it feels like I’ve got on pantyhose with one leg that has gotten really twisted) and Legs of Lead for when it feels like I’m walking through cement.

When I’m in a fatigue phase, Legs of Lead are not uncommon.  But, this weakness in the quads is rare.  Had it once very early on the MS path and again during a flare up involving saddle anesthesia.  Unlike Twisty Leg or Legs of Lead, Jello Quads requires me to really pay attention when I’m going down stairs or walking longer distances.  Yesterday, I was the woman in the crosswalk at the store who looked like she was taking her sweet time when, in fact, I was hurrying as much as my legs would let me.  As a driver, I am notorious for letting pedestrians cross (in crosswalks, at corners or driveways) and then complaining when they appear to continue sauntering instead of “putting a little giddy-up” in their step.  After yesterday, I will be more kind in my thoughts — at least I hope I will.

Except for this past Monday, Quads of Jello hasn’t been a constant state.  Sometime I wake up with it.  Other times it hits later in the day.  Even had a few 24 hour periods without it.  But on Monday things were different.  I was both exhausted and untrusting of my ability to walk much.  Taking the cat for her daily outside excursion involved two separate trips around the yard and nothing more.

For the most part, I’ve come to terms with the usual stuff.  Sure, I still have my days of frustration, especially when all the usual stuff hits at the same time or when medication that helped in the past isn’t helping now.  But thanks to my yoga and meditation practice, the frustration and accompanying funk doesn’t last long.  Eventually I remember, “it is what it is.”  By that, I mean, I may not like the current symptoms, but I cannot wish them away.  The only thing I can change is my relationship with/response to what is happening.


Practicing “it is what it is” has been more difficult lately.  I had to cancel all my yoga classes on Monday.  I HATE cancelling classes and this was particularly difficult since I knew there’s be no classes next week (Memorial Day).  I have flowers that need to get into containers or the ground.  But lifting the bag of potting soil seemed outrageous.  Suffering isIt isn’t even that they needed to be planted.  It was that I wanted to plant them  I LOVE playing in the garden almost as much as I LOVE practicing and teaching yoga. These disappointments get intensified by the fatigue and although Monday wasn’t an entire day of “woe is me,” there were moments — no hours where even remembering “it is what it is” wasn’t helpful.  Because what is was, wasn’t what I was wanting.  Behold, the definition of suffering, at least from the Buddhist perspective.

I think the difficulty in finding solace in this concept this time is because Quads of Jello is new and thus, unknown: How long will it last? Will it get worse? Is this something that is going to become a “usual”? Crap, is this going to effect my teaching more than just this past Monday?  All questions that reflect fear and worry about the future.  Fears and worries that I’ve had years to come to peace with when it comes to the usual stuff. Fears and worries I came to peace with via my yoga mat and meditation.

So, even though Quads of Jello isn’t what I ordered, I’m going to continue my yogic and meditation practice.  Trusting that eventually, the peace will come.