Tips and Tricks for LGMD

Occasionally, when I’m teaching, I’ll drop something, and before I can grab my reacher, 2 or 3 students have jumped out of their seat to retrieve the fallen item. Every time it happens, I feel so appreciative to have such enthusiastic helpers, (especially on those days when there’s no shoving involved.)

One afternoon last year, after a student picked up a pen I had dropped, one of my more mischievous little girls piped up:

“Mademoiselle, do you live alone?”

“Yes C., I do.”

“Well, um, I have a question, but you might get mad…um,” she hesitated.

“What is it C.?” I asked, a little apprehensive of what she might say.

Smiling impishly, “Um…I was wondering…um…how do you put your pants on if you can’t bend down?”

There was a silent pause in the classroom, with all eyes on me. The thought that my students might be imagining me in my underwear made me blush scarlet. (If only I could get such attention when I teach French conjugation!)

“Well little C., I have my techniques, but I don’t think this is the place to demonstrate. Good connection though!” I laughed.

And with that, the whole class burst into fits of giggles, including me.

Just like C., I also am very curious to know how others manage. I’ve seen three occupational therapists for brief periods of time over the last 4 years and was surprised that they were inexperienced with my situation. Maybe because I’m at that in-between stage: weak, but not in a wheelchair. And that’s ok; so far I’ve been pretty successful in finding ways to do the things I need to do at home and at school. Outside of those two places, however, I sometimes feel like a fish out of water.

I wondered if someone had documented the tricks people with LGMD use. So I did a bit of research on the Internet and I discovered John (account name John71377 on YouTube) who has limb-girdle muscular dystrophy type 2A. He demonstrates with confidence and in detail such things as getting up from a chair, walking up stairs, getting up from the floor. (To my teacher friends: this last sentence wasn’t meant to sound like a report card comment )

It’s been fascinating to see that some of our techniques are quite similar. Like John, I rely heavily on walls, ledges, tables and countertops to accomplish certain actions. Locking elbows or knees, and using leverage and momentum have also become very important. Yet, we do some things a little differently. John is stronger than me—he can still get up from the floor!!!—but my gait is a little less conspicuous, maybe because I’m shorter.

Here are some of my tricks, including small modifications I’ve made to my home:

• My couch sits on blocks to give it height. But I don’t use it very often these days because my new rug is a bit slippery, making it harder to get up from the couch. I can still manage to get out of it by contorting my body into strange poses. Maybe I should find slippers with a better grip. Or maybe I shouldn’t. I’ve watched entire movies standing behind my couch while doing a little exercise. It’s been good for me.
• I’ve put two flat cushions on each of my dining room chairs to make them higher. The chairs are pretty heavy and they’re on a non-slippery rug, so I have no problem pushing against the chair, spreading my legs a bit, and gently leaning on the table to get up. I couldn’t get up if the chair slid or if I had no table to lean on.
• The pantries in my kitchen have been great. The shelves that are at the same height as my torso are the easiest ones to use. I can also reach up to the overhead cupboards by swinging my arm up, then resting it on the shelf as I grab a glass or teacup, and letting my arm fall again. My friend K. made me smile one day when he said I looked like an Olympic discus-thrower as I was putting glasses back into the cupboard. He exaggerates of course, but it was still nice to be likened to an athlete. When I have to reach up a little higher, I swing my arm, rest it on the first shelf, then walk my fingers up to the higher shelves.
• I use a reacher with rubber ends that look like suction cups to turn the knobs on my stove. (Thank you K. for that idea!!) I also have reachers that look exactly like the ones the school custodian uses for garbage-picking. I probably paid twice the amount for them at a therapy supply store, but mine have a little magnet at the very tip—very handy for picking up paper clips from the floor.
• I lean against the kitchen counter and rest my elbow (as a pivot point) on the edge of the sink as I wash dishes. My bathroom sink is also higher than average and I can lean against the vanity, elbows firmly planted near the sink as I wash my face. But I have to watch out if the counter gets wet and slippery.
• My toilet has been raised from underneath, which is less conspicuous than the ugly seats that are plopped on the top of a toilet. They’ve raised the staff toilet at school too, and some of my colleagues have told me how much they prefer it that way. (That makes me feel much better.) I don’t have any bars or handgrips by the toilet; I use the vanity next to it to help me get up instead.
• I put on sweaters and t-shirts or tie my hair in a ponytail by placing my elbows against a wall at head-level.
• I can even do a pretty good job drying my hair (thank goodness!), with one arm leaning against the wall, and my pinkie wrapped around a towel hook above my head while the other fingers hold the blow dryer. I use my wrist to move the blow dryer. I then swing my other hand up and somehow manage to keep it balanced above my head as I brush my hair. Maybe one of these days I’ll post a picture so you get the idea.
• I brush my teeth by resting the elbow of the toothbrush arm on the back of my other hand.
• My bed is pretty high, which makes it more challenging to get in. I steady myself with one hand gripping the dresser and the other resting on the bed. Then using momentum, I swing one leg up from behind me to rest it on the bed. I then lie down while grabbing my other leg and lifting it to the bed. I then wiggle my way away from the edge. It’s much easier to get out of my bed; I just roll off. That’s why I like my bed high. It’s also the perfect height for folding clothes and leaning against it to put on my pants!

What to do? What to say? How to help?

One sunny Saturday afternoon, feeling wonderfully relaxed after an appointment with my osteopath, I cheerily greeted a neighbour I saw in the hall on my way to my apartment.  When I commented on the beautiful weather we’d been having, he replied that he was moving quite slowly that day and hadn’t yet been outside.  “Not as slowly as me,” I quipped, thinking I was being funny.  My remark had quite the opposite effect.  Utterly embarrassed, he mumbled that he didn’t mean it that way, that he was so very sorry, even as I insisted that I was merely joking.   I haven’t seen him since.

It seems I have this new ability to make about half the people I meet feel quite awkward.  Even several friends with whom I haven’t been in touch for more than a decade, upon hearing the news of my affliction, continue sending me emails without ever acknowledging the twist of fate in my life.  I often wondered if they had missed that bit of news by reading my email too quickly.  But when one friend inquired about my health after she had heard the news from another friend (who I thought had read the email too quickly), I realized that some people feel so uncomfortable when they hear about my situation, they simply don’t know what to say and don’t mention it at all.

I find it all rather perplexing and funny.  But I can empathize.  I too have had my awkward moments when I don’t know what to say or do about another person’s (seeming) misfortune.  I remember one night in a grocery store, when I was still walking without a cane, I noticed a man zipping through the aisles in his motorized wheelchair, deftly grabbing cans and boxes from the shelves.  He seemed to be managing very well, but I wondered how he could get things that were too high.  I thought of letting him know that I’d be more than happy to help if he couldn’t reach something.  I kept thinking it the whole time I was in the store; but each time our paths would cross in the aisles, I was overcome with timidity and never said a word.  I wish I had, because I now realize what a relief it is when somebody offers to help…it’s so much better than having to ask.

It’s true that everybody is different.  Some (unlike me) have no qualms about asking for help.  Some people might look like they need help, but they actually prefer to do things independently even if it takes a little more time. Some even resent being offered assistance.  But I now think the risk of offending is trivial compared to the relief one can provide when offering to lend a hand.

In my case, I have found ways of doing many things independently.  I figured out how to use my weight and momentum to open heavy doors and how to wedge my cart to hold the elevator door open.  Still, I’m always happy if I can save a little time when somebody opens a heavy door for me or presses the ‘open’ button in the elevator.  Sometimes, my cart gets stuck as I’m trying to enter the elevator, and I see people looking at me uneasily, unsure whether they should help.  My friendly neighbour L. finally said one day, “I never know what to do when your cart gets stuck; is it ok if I help you?”  And I was able to answer that if she could help me move my cart gently—an abrupt tug could throw me off balance—it would be greatly appreciated.  And with that candid question, the oppressive awkwardness in the elevator evaporated into thin air.

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!

Life Lessons

To be strong and agile, flexible and free has been a driving force within me since I was a little kid.  I always felt pure joy when stretching my limbs to climb a tree, skipping nimbly from stone to stone in a stream, swimming against the powerful current of a torrent, pushing my muscles to their limits in a strenuous workout or letting them flow freely with the rhythms of music. 

So when my body started to falter almost a decade ago and it finally dawned on me two years later that it was not because I was simply out of shape, I sought the advice of a sports medicine specialist.  And since that day, my life’s path has swerved dramatically.

Seven neurologists, three muscle biopsies, and numerous blood tests later (for PROMM, FSHD, FKRP, AMD, BMD, LGMD 2B and 2A…the list goes on), and we still don’t know what exactly is causing the progressive weakening of my muscles.

When people find out that years later I still don’t have a specific diagnosis, they often jump to the conclusion that it must be terribly frustrating for me.  But it isn’t.  None of the conditions I mentioned above can be conventionally treated.  And even if I believe that anything can be cured (no matter what the doctors say), it’s a lot easier to nurture my hopes of healing when I remain afflicted with an ailment that is unidentified, with no bleak case histories or a discouraging prognosis to read about.

Instead of getting frustrated, I’ve come up with my own reassuring and uplifting theories to explain what’s happening:

1. I’ve been a worrywart for a big part of my life and as a result I’ve attracted a worrying condition (based on the law of attraction as discussed in many books including The Secret and the Abraham-Hicks series.)  Now that I’ve stopped worrying so much, I’ll smooth-sail my way through life.
2. Just like the hot/cold game (as you get closer to the target it gets hotter), I was getting a little far from my life’s purpose, and this condition has put me back on track.  As I get closer, wellbeing is starting to flow again.  (So I won’t be a great salsa dancer, but maybe life has something else in store for me.)
3. I chose to come into this life under this set of circumstances because there were lessons to learn with this particular challenge, and also because the people close to me would benefit from my experiences. 

And the positive lessons have been plentiful:

• Don’t worry, be happy.  Really!
• Don’t worry about what others think, just be. (A tough one for me – still working on not feeling self-conscious about my awkward body, and getting better at it every day!)
• By acting consciously (and not reacting impulsively or automatically) to a situation, we have the ability to bring about desirable outcomes.  (One I’ve needed a lot of practice with.  Maybe that’s why I was thrown into the teaching profession.)
• Be open to the advice and opinions of others, but ultimately make up your own mind about things.  (So doctors, I appreciate your thoughts, but one day you just might be stunned when I waltz into your office, all strong and stable, and perfectly healed!  And Mr T., you’re a very kind person, but I really don’t think what you preach is the only way…there are many ways to enlightenment and healing.) 
• Focus on the good stuff, and more good stuff will come your way.  (Enjoying the sunny drive to a meeting the other day despite being late and slowed down by traffic paid off – the person leading the meeting was even later!)
• Be grateful for all the wonderful things in this life.  (And I have so much to be grateful for—a loving family, supportive friends, a cozy home, a rewarding job, a peaceful country, friendly people wherever I go, safe falls, and the root of my front tooth has grown back!! )
• It’s ok to ask strangers for help and it’s even better if you can offer help to someone else.  (Thanks to all those people who have been kind enough to hold doors open for me or lend me their arm, or pick up my fallen keys!  I look forward to the day when I can return the favour.)
• A down moment is just that – a short moment in time.  (I still get them, but they always pass.)
• A seemingly negative circumstance might actually prove to be a positive one in the future.  (When I was running a little late the other day, I met the kindest and cutest old man.  I wouldn’t have met him had my morning routine gone smoothly and had I entered the elevator a little earlier.  And it’s a good thing we crossed paths, because that very day, a yellow pipe on the ground between my building and my car was creating a bit of an obstacle, and here was this jovial man, eager and happy to help!)
• A negative situation can be turned around.  (I was alone at home when I fell not too long ago, and I broke a blue bowl in the process…it was scary and emotional, but in the end, I got a great workout trying to get myself up!  I also appreciated the opportunity to sit on the floor, which I rarely have the chance to do these days.  And the shards of blue glass scattered on the reddish planks were quite lovely to look at.  After struggling for almost an hour, I wasn’t able to get myself up; but I did manage to call my good friend K. who came to help me.  The evening started with panic and tears, but it ended with good conversation, hearty laughs, and apple pie.)
• Having faith that everything will be just fine and wonderful leads to everything being just fine and wonderful.  (When I really feel this, things do magically work out.)

Pretty obvious lessons, I know.  But it’s applying them day after day, challenge after challenge, mishap after mishap that has been the true test.  I’ve made some progress, but I have a long way to go too!

Do you have any life lessons to share?