What’s MD?

The day I announced to my network of friends that I had started a blog, I heard back from a schoolmate I hadn’t seen in almost 20 years.  He had read my posts and told me that he too had muscular dystrophy.  Except for a few people I met briefly at an MD chapter meeting last year, I don’t know anybody with muscular dystrophy.  In fact, when asked what I have, almost every single time, people assume I have multiple sclerosis even when I answer very clearly that I have muscular dystrophy.  The conversation often goes something like this:

“What do you have?”

“Muscular dystrophy”

“Oh yeah, my aunt has that.” 

“Really?!” in an eager voice, thinking that finally somebody I know actually knows somebody with MD…but I always check, “Are you sure your aunt doesn’t have multiple sclerosis?”

“Yes, that’s what she has.”

Slightly amused and without a trace of impatience, I clarify, “I don’t have MS, I have MD, muscular dystrophy.”

“Oh, what’s that?”

And it’s perfectly natural that they would make the mistake; even my family doctor has confused the two on several occasions.  After all, the rate of MS—especially in the northern countries—is much higher than that of MD.   The prevalence of MS is as high as 1 in 500 in certain regions.  Statistics for MD were a little harder to find because there are so many different types.  I found one statistic for facioscapulohumeral muscular dystrophy to be 1 in 20 000 and for myotonic dystrophy, the most common form of an adult-onset muscular dystrophy, it was 1 in 8000. 

So you can imagine how surprised I was when I found out that somebody I actually went to school with also had MD!

I haven’t really touched on the subject of MD in my previous posts and it wasn’t my intention to do so.  The ailment I may possibly have seems irrelevant, and I’m more interested in writing about healing and happiness.  But after speaking with my schoolmate, I thought it would be a good idea to explain this often-misunderstood affliction and compare it to MS.

From the MS Society of Canada website: “Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system — the brain and spinal cord. The disease attacks the protective myelin covering of the central nervous system, causing inflammation and often destroying the myelin in patches. In its most common form, MS has well defined attacks followed by complete or partial recovery. The severity of MS, progression and specific symptoms cannot be predicted at the time of diagnosis [...] MS can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.”

Muscular dystrophy, on the other hand, is a genetic disorder that is characterized by progressive weakness and wasting of the muscles that control body movement.  It’s caused by incorrect or missing genetic information that prevents the body from making the proteins it needs to build and maintain healthy muscles. About 100 different neuromuscular disorders fall under the umbrella of muscular dystrophy, but there are only nine diseases that are classified as muscular dystrophies—Duchenne, Becker, limb-girdle, congenital, facioscapulohumeral, myotonic, oculopharyngeal, distal, and Emery-Dreifuss.  In most cases, a person’s muscles will continue to degenerate—quickly or slowly depending on the disease and the person—until s/he’s wheelchair bound.  There is no (allopathic) cure.

Although there are some very serious and heart-breaking cases of MS, I’ve also heard stories of people with MS going into remission and even recovering completely.  And it takes one story to give much needed hope.  I’ve searched high and low for a fairy-tale MD story, but I haven’t found one…YET.

And that’s why I’m telling you all about muscular dystrophy.  Because now that you’re aware of the staggering odds, you’ll be as thrilled and amazed as I will be when I finally write the story of my miraculous recovery. 

So that you understand how far I will have come, here’s a bit of history and background about my current state:

Almost two years after I saw my first neurologist (who had misdiagnosed me with polymiositis), I was diagnosed by neurologist #3 with limb-girdle muscular dystrophy 2A (which involves the calpain-3 gene).  4 years later, neurologist #7 sent my blood out for a mutational analysis of the calpain-3 gene to confirm the diagnosis; at the time of my initial diagnosis, such a blood test was not available and diagnoses were based on muscle biopsies.  6 months later, the results came back negative.  A third muscle biopsy and more blood tests later, I still don’t have a specific diagnosis, but my neurologist has no doubt that I have some form of limb-girdle muscular dystrophy.

So far, at least 15 different genes with mutations have been found to be responsible for various forms of limb-girdle muscular dystrophies, but scientists are still working on locating others.  It’s possible that the gene responsible for my weakness hasn’t been identified yet…OR maybe I did have LGMD 2A and all my visualizations, positive thoughts and the healers I’ve seen have caused the calpain-3 gene to spontaneously mutate to a healthy state; and now I just have to help my muscles remember how to be strong and functional again!!!!  My neurologist disagrees with this last theory, but that’s the assumption I’ll stick to on my road to recovery.

Having LGMD means the muscles closest to the trunk of my body are affected.  Currently, I cannot get up from a regular chair, or climb steep stairs.  I cannot raise my outstretched arms higher than a 30-degree angle from my body or lift my feet more than 5 cm from the floor (if I don’t use momentum.)  When lying down on my back, I cannot lift my head or raise my extended legs.  I walk slowly and my balance is precarious.  I need really good floor grip to get out of a raised chair, or my car.  How I look forward to the day when I’ll be able to once again wear dainty sandals without a heavy-duty tread!  

Now that school is almost over, I plan to dedicate myself fully to recovering my strength.  I predict that after two months of regular exercise, visualizations, focused breathing and meditation, enough sleep, and positive expectations, I will be able to rise from a chair a little more gracefully, climb a stair without twisting my body awkwardly, lift my feet and arms a few more centimeters and walk more stably.  Let’s see!

Promising Dreams

In the last two months, 5 people (including myself) have been having similar dreams about me.  And not just any dream!

1. My mother dreamed (twice!) that I was walking without my cane, quite normally.  She was very surprised and she asked me how I had healed myself. 
2. My colleague P.  dreamed that I was walking confidently and naturally, as if I had never had any muscle problems. 
3. My colleague F.  dreamed that I was running in a field, and he too was astonished at my miraculous recovery.
4. I dreamed that I was running fearlessly on ice- and sleet-covered sidewalks.  I was elated.
5. My sister dreamed that she was about to help me up a flight of stairs at a mall when I pulled away and started walking up the stairs independently, and then running.  We started racing and my sister had trouble keeping up with me.  (And my sister is really fast!)

I think it’s obvious that my muscles are going to get stronger, isn’t it?!

Five Times Seven

On my 35^th birthday, a couple of months ago, I woke up determined that my day would be special and meaningful.  I don’t usually invest much thought or time on special celebrations, especially my birthday, but today I felt differently.

 As I walked out of my apartment, on my way to work, I ran into my friendly neighbour L. at the elevator.  When I asked her about her March break, she paused momentarily, and in an emphatic tone tinged with dismay, she mentioned that she had celebrated her 30^th (I’m getting so old!!) birthday. “You’re still so young,” I chuckled.

 Then, when I got to work, my colleague S. came out to assist me.  I told her it was my 35^th (I’m getting old!!) birthday.  She rolled her eyes at me, “Oh, come on, you’re still young!”

 I smiled and agreed.  I told her I felt that this year was going to be a special one with lots of positive change. “Really?  That’s how I felt about my 49^th birthday,” she replied, “and it did end up being a meaningful year.  And that’s 7 x 7!”

 I remembered vaguely something about seven-year cycles.  Was it related to business cycles, or maybe something about body chemistry?  It doesn’t matter.  I like to think that turning 35 has a special significance.  That’s 5 x 7.  And when I look back upon my life, it does fit neatly into periods of 7, with a little bit of overlap.

 First seven years – 0-7

Living in my own imaginary world most of the time.  Not too many worries, no goals.  Just going with the flow, being well taken care of and letting life happen.

 Second seven years – 7-14

Freedom!  Living an exhilarating life in Guinea.  Roaming the village streets, climbing trees, spending lazy days on rooftops, taking care of my many cats and dogs, catching crabs and observing grasshoppers, bobbing up and down in the ocean waves, wading knee-deep in slippery slimy poto poto (a clay-based mud), diving into the white waters of a gushing torrent, swimming with vigour, exploring the bush, dancing with abandon, writing stories, and letting my imagination run wild with my friends’ tales of witch doctors and ‘le trou du diable’.  And let’s not forget summer adventures traipsing across Europe or sweltering in the Moroccan heat.

 Third seven years – 14-21

The pressure to conform. Assimilating knowledge and other people’s values and beliefs through academic learning. Contentedly and unquestioningly obeying rules at a strictly regimented boarding school.   Continuing the assimilation process into the university years, but with a shift in ideals.  Routines, schedules, and textbooks.

 Fourth seven years – 21-28

Fun and frolics!  Physical strength and fitness.  Socializing, dating galore, experiencing different relationships.  Developing a passion for partner dancing, from rancheras and boleros during my years in Mexico to ballroom and then salsa (addictive!) when I returned to Canada.

Fifth seven years – 28-35

Declining muscle strength.  Gradually losing the ability to run, dance, climb stairs or get up from a chair.  Experiencing heartbreak, low self-esteem and physical fear.  Being introduced to different forms of alternative healing. Opening up to new philosophies.  Becoming spiritual.  Worrying less and having faith that everything is going to be all right.

 And everything is all right and it just keeps getting better. I live comfortably, am loved and am happy.  It would be really nice if my muscles would heal and strengthen in this next cycle.  So many books and healers tell me it’s possible and I believe it.  I just have to double my efforts in convincing my body it can heal.  I am so looking forward to the day when I can go to a park alone and plop myself on the grass without worrying about how I’ll get up, when I can sprint up a flight of stairs to arrive at an appointment promptly, when I can bend down and pick up my fallen keys, when I can sign up for a course without having to convince somebody to come with me, or when I can use any washroom facility at ease. 

Blogging for the first time…

Tell me about a strange coincidence or an unusual occurrence and I eagerly listen, making connections, reading into the signs, imagining a special meaning to it all.  Usually, nothing comes of it; the moment peters out like a deflating balloon.  But those few thrilling moments pondering the significance of such occurrences are worth it—a little spice to my life.

 So when, in the last month, three unrelated people drew my attention to the world of blogging, I thought I should give it a try.  The only blogs I’d read had been my friends’ travel journals.  Actually, I did read one blog about seven years ago; but at the time the word blog wasn’t part of my vocabulary.  It was about a man dealing with polymiositis.  That’s what the doctors thought I had; so it was with avid interest that I read his entries. 

 More recently, my biotherapist lent me a few zines written by Chris, a young man with Duchennes Muscular Dystrophy, which led me to look up his blog.  And once again I was captivated by his reflections on daily life.  I might be 10 years older than him, a woman, and afflicted with a different health challenge, and yet I could identify with a lot of what he had to say.  It reinforced the feeling that we are indeed all connected. 

 Then last Sunday, my yoga therapist suggested I write a blog to keep her informed of my progress.  It seemed like a good idea.  As soon as I received her email inviting me to Livejournal, I started familiarizing myself with it. I was soon overwhelmed by the myriad of features and a little turned off by the blinking ads.

 But then I thought of a date I had had a month ago.  That too is a story of coincidences better saved for another entry.  He is a blogger on wordpress.com.  He writes (so eloquently!) about cuisine and culture.  I explored the site and was impressed by its simplicity.  I started reading different people’s blogs to get an idea of what could be done. I was so inspired that the original idea of blogging to keep my yoga therapist up to date has evolved into something much bigger. 

 This will be my story… my ups and (rare) downs, my highlights and acknowledgements, my challenges and solutions, my moments of synchronicity and unusual occurrences, my musings and reflections, and my progress.

 I like the idea of remaining incognito (at least for the time being), even from my yoga therapist, and my friends and family.  I suppose it gives me the feeling of freedom to write about anything that comes to my mind.

 I enjoy writing once I get started.  But it’s the getting started part that doesn’t always happen—I have a propensity for procrastination.  I think keeping a blog might provide some incentive to write regularly.  And I really do need an enjoyable and productive activity that I look forward to.  I used to occupy my after-work hours with dance, exercise and outings.  But as my muscles got weaker and my angst increased, I devoted most of my time lost in my work.  Then things got a lot worse, so I decided to cut back on my hours at work, and I was left with a little too much free time.  With too much time, my mind tends to wander and dwell where it shouldn’t.  I have a good feeling that blogging will be a positive and worthwhile activity.  I’m not sure if my posts will be read.  But I like the idea that they’re out there, nicely organized and available.  And who knows.  Maybe I’ll hear back from some interesting people.  There’s a whole new world out there.

 For leading me here, thank you to…

1. my yoga therapist,
2. my biotherapist who led me to Chris’ writings, and
3. to my one-evening date. 

 They say meaningful things happen in threes!