Category Archives: Tips & Tricks for LGMD

An Evolution of Mobility Devices (Part 2)

The week after I wrote about the thrills and chills of LGMD, my anxiety mysteriously evaporated.  Perhaps the iron and B12 supplements I had started taking had kicked in, or my body simply needed rest, or maybe I had dispelled my fears by writing about them.  In any case, it felt absolutely wonderful to be able to walk as fast and steady as a turtle again.

Getting a power chair no longer seemed essential, yet those three weeks of torment had chipped away at my resistance to owning one and I figured there was no harm in starting to explore my options.

So I arranged to meet with an OT at my home.  After bombarding her with loads of questions and sharing my own ideas, she suggested a specific chair that might suit my needs and took my measurements.  She said it would take several weeks before it was available for me to test.  In the meantime, she wanted me to try a couple of mobility devices that could make me safer in my home and arranged to have them delivered within the next few days.

When I got home the following Friday, I noticed a Nexus Rollator and a Guardian Walker (with flip tray) had been delivered while I was at work.  Although I was happy the supplier had come the day my cleaning lady was around to receive the delivery, I wasn’t too thrilled at the sight of the bulky contraptions crowding my small apartment.

When I tested the rollator, I found that it swivelled too easily, throwing me slightly off balance.  Nor did I warm up to the walker, a dull grey eyesore, half wheels, half mini skis, spoiling the aesthetics of my colourful apartment. On top of that, it made an irritating rattling noise when I tried to pivot it.  I doubted that I would purchase either one of these mobility devices.

I did, however, find the ugly plastic tray on the walker quite handy.  Instead of taking my regular detour around the kitchen, holding on to the counters and stove, I could now cut directly across towards the fridge and load the walker with several items at once, eliminating the need to do multiple trips.  It was also great for transporting the hefty omnibus of George Orwell novels, a gift I hadn’t got around to reading because of its unmanageable size.  And late at night, when my exhausted muscles were just about ready to collapse from the day’s wear, it was a relief to lean on the sturdy Guardian walker as I shuffled along the hallway from the kitchen towards my bedroom with my freshly microwaved therapeutic beanbag loaded on the tray.

After a couple of weeks, the reliable walker had become as indispensable to my daily routine as my heated beanbag, which keeps my bed warm during the cold winter nights.

Meanwhile, the rollator parked in a corner of the room remained forgotten until two days ago, when, feeling a burst of energy, I decided to test it out again by doing laps in my living room.  Back and forth I went, doing figure 8s on my laminate floor.  While it helps me with my balance, I can’t lean on it the same way I can on the walker.  As a result, I end up working my muscles a little harder.  And unlike the walker, the rollator can be used on rougher terrain.  I see it coming in handy if I want to do a bit of outdoor exercise.

I haven’t quite made up my mind, but I am leaning towards keeping them both.  Of course, I’ll have to jazz up the walker to fit in with the décor…a project I’m rather looking forward to.

Door Dilemmas

Going through the heavy doors that lead in and out of my parking garage was a process requiring precision and dexterity. And it was becoming increasingly more difficult.   Pulling the doors was harder than pushing them open.  I’d have to let go of my cart and place one hand on the wall to steady myself, then with my other hand, pull the door open using the momentum and weight of my entire body, then use my leg to hold it open as I repositioned my hand on the other side of the door, while maintaining my balance by applying just the right amount of pressure against the door as I wheeled my cart through the doorway, stepped across the threshold, straightened my stance, and let the door close behind me.  It was helpful when people got to the door before I did and held it open for me, but if they tried to help me by interrupting my delicate balancing act, it could get a little risky.

I thought automatic doors would be nice to have, but never got around to doing anything about it.  So it was with absolute joy and wonder, when out of the blue, as I was heading towards my car last spring, a lady from my building walked up to me to let me know that plans had been made to install automatic doors and that a woman called Penny would be contacting me to time me.

The day the doors were automated, I met Penny by the P1 elevators.  I felt like an athlete with my elderly and kindly coach as she held the stopwatch and measured the time I took to go through the first door, walk about 8 feet, then exit through the second door.  Coming back was trickier.  There was a parking cement block beside the entrance obstructing my path to the sensor where I needed to swipe my card.  So I would have to approach the door head on to get to it.  This wasn’t such a problem before, because a person about to open the door would usually see me through the glass window. But now, a person could press the automatic button at the first door, causing both doors to open simultaneously.  If I were unknowingly approaching the second door when they pushed the button, I could be knocked down.

The other problem was that I had to cram myself and my cart in the little space between the cement block and the wall to clear the way for the door to open.  It was awkward.  These automatic doors were turning out to be more problematic than the manual doors.

Thank goodness, Penny had a solution.  For $75, I could purchase a remote control to open the doors.  She suggested I borrow one from the management office to see if it helped.  So a few days later, I met with Penny again to try opening the doors with the remote.  It didn’t work.  We realized later that an ‘eye’ had to be installed first to receive the remote’s signal.

It took several weeks before the ‘eye’, as Penny called it, was installed.  Luckily, this all happened during my summer vacation, so I could simply avoid using the doors by staying home.  The few times I did go out alone, it was terribly nerve-racking each time I returned home and had to approach the outer door.   There was one close call, when the door started opening just as I was about to step into the danger zone, but other than that, there were no incidents.

Then I went away to visit my family and forgot all about the automatic doors.  I didn’t have to worry about them the day I returned because my parents were with me.

The next time I went out, I was with my friend Lisa.  We took the elevator to P1.  I pressed the automatic door button, proceeded to walk through the space between both doors, and just as I reached the second door, it started to close!  Even though Lisa was there to stop it, my heart just about flipped in shock.  Why was it closing so soon??

I was getting nervous.  School was about to start and the door problem wasn’t solved.

It turns out that while I was away, the building manager had requested the doors to remain open for a measly 13 seconds!!! But my worrying was pointless; the ‘eye’ was ready, and when I visited the office I was given a remote that was specially programmed to keep the doors open for the 37 seconds I needed.

The remote, which allows me to open the doors from a safe distance, has made my life so much easier!  For the first month or so, I was actually excited about my trips to and from the parking garage just so I could exercise its magic.  The novelty has since died down, but it is still hugely appreciated!

An Evolution of Mobility Devices (Part 1??)

A while ago, someone with LGMD wrote to me that he was hesitant about getting a cane because it would be embarrassing.  I’ve had my share of senseless self-conscious thoughts, so I completely empathized with him.  Yet, I thought it was funny how differently we viewed the idea of using a cane.  In my case, I considered using one so I would feel less awkward.  I supposed a cane would send the message that I wasn’t climbing the stairs slowly to annoy the people behind me and that the exaggerated hip movement that comes with LGMD was not a daft attempt to strut my stuff.  A cane would also signal others to give me space in crowded areas, because although I still walked steadily enough, a slight shove could topple me over.

So I started eyeing canes wherever I went.  I noticed the dowdy quad canes and fancy wood sticks, the plain aluminium canes, the cuff crutches, walking sticks with wild psychedelic patterns and attractive clear Lucite canes.  When I walked through the aisles of drugstores, I surreptitiously tried them out, feeling a little strange as I held them and completely clueless as to what would work best for me.  I always left undecided and empty-handed.

One evening, while waiting for my physiotherapist at a rehabilitation clinic, I commented on the nice copper colour of another client’s cane and asked her where she got it.  She told me that after her car accident she needed two canes to get around, but that she was feeling stable enough to use only one now and that I could have one of hers if I wished.  I offered to pay for it, but she insisted that I have it.  My physiotherapist adjusted the height and that very night I went home, the unfamiliar cane in hand, and relieved that I no longer had to dwell on the myriad of available choices.

I felt a little odd when I walked into my classroom the next day with a walking stick.  Thankfully, the students didn’t fuss much about it.  I imagine they assumed that I now used a cane to avoid falls like the one I had had in class a week before.  And it proved useful to point to the maps and wall charts.

As time went by, I came to depend completely on my cane, until that fateful autumn, a year and a half later, when my stick no longer did the trick.  Open dark spaces like my parking garage were starting to elicit shaky panicky feelings from my body, and one day, my body won over my mind as it refused to step away from the comfort zone beside a wall or piece of furniture.  My doctor thought the rather abrupt change was caused by exhaustion and work stress so he prescribed some time off, which is what I needed to devise a new system to get myself back to work.

An occupational therapist visited me and suggested I get a power wheelchair—a complicated solution that created the additional unsolved problems of getting through the doors of my building and finding the appropriate transportation to lug my chair to school.  We tried a walker, but it was too bulky to manoeuvre through the heavy doors.  And finally I decided to try the grocery cart my friend Ken had given me as a gift some time ago. My cart is not sturdy at all, and yet, with both hands gripping it, my body is tricked into believing that I’m much safer than I would be with a cane.  I had never used it before because I was afraid of getting knocked down by the closing elevator door if it got stuck midway through the elevator.  So Ken had the bright idea to let the elevator door slam once against my cart to give me more time to enter.  With a little practice, I also found a way to keep the heavy building doors open with my leg while I wielded the cart through the doorways.  It required some tricky turning movements from my body, but it worked. Yet the sound of approaching footsteps always causes my heart to lurch with anxiety.  That a person in a hurry might neglect to look through the little window and open the door while I’m on the other side is constantly at the back of my mind.  Even if they open the door to help me, as I’m still holding on to it, I can easily be thrown off balance.  Luckily, the few times it happened, I was able to catch myself just in time.

It didn’t occur to me that I might have the strength to lift the cart into my car, so I always left it behind in my parking spot.  I came home a few times to find it repositioned.  According to my parking neighbour, a lady had been borrowing it.  He assured me that he had admonished her for taking it and had explained to her how I depended on it.  I didn’t really care that somebody borrowed it as long as it was there when I got back from work and that it was in good working condition, but I was grateful to him for watching out for me.

Looking back, I find it astonishing that for 6 months I relied on the arm of a colleague or the shoulder of a student to get to one distant wall from another.  Only once in a while, when the hall was empty, would I cross it alone, with the trepidation and cautiousness of a tightrope walker.

Of course, the sensible thing to do should have been to keep a walker at school.  Yet, I simply could not reconcile myself to the image of my body ambulating behind such a device.  Be it vanity or the fret of feeling like an old woman, I continued to stubbornly refuse my mother’s advice to bring a walker to work.  And I was absolutely mortified, when one spring day, the principal rolled one in while I was in the midst of a lesson.  My mom had dropped it off in the hopes that once it was at school, I would get over my hang-up and see how practical it could be.  And maybe with more time, I would have come to my senses and started using it.  But summer came quickly enough and I never touched the walker.  My students, on the other hand, had a hoot scooting around on it.

Soon after school ended, I loaded my little cart with a week’s worth of clothes and headed to the parking garage.  After I was putting my bags in the back seat of my car, I started feeling uneasy about leaving my cart behind for an entire week.  So I collapsed it and attempted to lift it into my car.  Ha!  It wasn’t difficult at all!  A little cumbersome, but it’s gotten a lot easier with practice.

Since then, I always take it with me.  Unless the weather is bad, I no longer have to call someone to meet me at my car when I arrive at work.  My very practical mother also had the great idea of putting the wire basket from the walker on top of the cart.  I put it on when I come to school, and take it off before I leave.  It’s the perfect height—much higher than when it was on the walker—and great for transporting books, notebooks and school supplies.  To finally be able to walk around the school and lug my stuff around with me, without having to depend on anybody, has been absolutely wonderful!

The cart is easier to manoeuvre between desks than a walker—although certainly not as safe—and I love the fact that I can lift it into my car.  However, it’s definitely not any more stylish than a walker.  But as time goes by, survival and freedom are surfacing as top priorities in my life, while my preoccupation with how others might perceive me fades slowly away into a disconnected memory.  When I pass staring youngsters in the hall, or parents who avert their eyes uncomfortably, I actually feel the slightest tinge of amusement.  And when a little boy asked me why I went everywhere with my cart, I simply gave him some quick facts—I have a muscle problem and can easily lose my balance if I don’t hold onto something—and I got a good laugh when he said innocently, “But I thought only grandmothers used those things.”

New goals for the New Year

It’s been more than a year since my last entry.  I suppose I feel there hasn’t been anything of real interest to write about.  No rolling of drums and tooting of trumpets as angels swoop down from the heavenly skies, sprinkling us lucky hopefuls with the shimmery dust of miracles about to happen.  No visits from fairy godmothers or Brazilian witch doctors with powerful spells and medicinal herbs that set the blind seeing and the lame jumping out of wheelchairs as they whoop with joy.  Not even a quiet awakening of muscles, like the gentle thaw of spring, which surprises us every year with the sudden emergence of lush foliage and vigorous new saplings.

Ah well…there’s always 2010 for such happenings.

But more seriously, there is still reason to celebrate…I suppose.  I have become more confident and less self-conscious in my daily routines, especially at work. Whereas I used to walk around in terror amidst crowds, I’m much more relaxed now, even amongst my unpredictable and rambunctious students.  I also feel more comfortable asking for assistance from strangers.  My elevator rides, once a heart-palpitating ordeal, are pretty much a non-issue.  And last summer, I actually signed up for a one-week course—which turned out very well—without even checking to see if there would be accessibility problems. I even tried a piggyback ride to go up a flight of stairs last autumn and it worked out fine.

Despite my inconsistent and flimsy exercise regime, a muscle test last August only showed a slight decrease in strength over the year—0.3 units compared to a drop of 5 units the previous year—and that is a small miracle in itself I’m sure (even if I have no idea what the units represent.)

My lifestyle has barely changed over the year.  I’ve just had to tweak a couple of techniques.  One night, way past my bedtime, I couldn’t swing my tired leg up onto the bed without the scary feeling that I was going to buckle.  So, as usual, when in a desperate jam and no assistance available, the creative side of my brain goes into overdrive.  I got onto one of those low Ikea step stools, sat on the right side of my high bed, and tugged and pulled clumsily at my pyjama bottom until I was able to lift my right leg into a half meditating position—a pose I hadn’t done in ages and which I thought I could no longer do.  Then, holding onto my foot, I struggled to rotate my body and leg over the bed as I leaned carefully to the side. I then grabbed and lifted my left leg onto the bed while I simultaneously lay down on my pillow.  It was tough the first few times.  If I leaned over at a wrong angle, rotated a few centimetres too far, I could collapse onto the bed, a twisted mess, without any strength to untangle myself.  I did lose control once and it took a long time of writhing about until I could slide off the bed safely and repeat the whole procedure.  Months later, I alternate between both techniques to get into bed, and they’ve both become effortless.  Each one  stretches my body in a different way as well, which is a bonus.

I’ve also had to add an extra step when getting out of my car.  While the previous technique had become impossible and dangerous, my body still felt unstable with this extra step.  Every day I dreaded the time I would have to exit my car.  I had the feeling that a slight loss of balance—as I stood on one leg, the other still in the car, and while I transferred my hand from the door to the steering wheel for support—would send me crashing down face first onto the pavement.  But after a few tries, I now get out of my car quite smoothly, almost carelessly even.  Amazing what a little practice does.

I’ve had less luck with my couch techniques. One evening when feeling exhausted after work, the laborious effort it took to get up from my couch—even if it is raised higher by 4-inch blocks—left me afraid of getting stuck on it the next time.  So I never sat on it again when alone, and I haven’t been able to get up from it without help since.  It’s still a very handy piece of furniture, great for leaning over its back when I’m watching T.V., talking on the phone or eating.  I also use it as a support when I exercise.  Still, it would be nice to sit on it.

From these experiences, two reminders ring loud and clear.

First, it’s better to never stop doing those essential everyday activities.  A break in routine—as caused by a busy week that leaves me tired and lazy, or a vacation—will inevitably lead to a loss in the ease of performing certain activities.  And if that happens, it’s important to make an effort, however great the struggle, to re-establish those routines, because it is sometimes possible with practice (especially when my body is rested) to become once again proficient in performing those same activities.

Second, while it’s time-efficient and safer to stick to the same routine and ways of doing things, I now realize that it is possible (just like any abled-body person) to become adept at new techniques, however clumsy I may feel the first few times I try them.  I recognize how important it is to keep testing my body, pushing it to do things that feel uncomfortable at first, because with a little practice they might become second nature and I just might surprise myself by doing things I didn’t even think were possible anymore.  I imagine there are many other ways in which I could still move my body.  Yet, out of fear of falling or getting stuck, I haven’t even tried them.

Challenging my body to do things I haven’t tried in a long time would be a good New Year’s resolution, starting with getting up from the couch.  I might even try getting into bed from the left side.  Let’s see what happens.

Be careful what you wish for!!!

And, when you want something, all the universe conspires in helping you to achieve it.” from The Alchemist by Paulo Coelho

Saturday evening – A phone conversation with a friend

After she tells me how much she enjoyed my last blog entry I say, “…but I don’t know what I’m going to write next.  I want some adventure in my life, something to write about!…”

Sunday afternoon – A Skype conversation with YouTube John

I mention to John that I can’t sit up from a lying position.  I tell him I watched his video, but I wasn’t successful when I tried his technique on my bed.  I’m so incredibly lucky that the last time I fell, I had collapsed into a sitting position on the floor.  Otherwise I don’t know how I would have been able to reach the phone to call for help.  John shares with me that at one point he couldn’t go up the stairs leading with the left leg; he persisted stubbornly and finally managed to. “You just have to push yourself, you can do it!” he encourages me.

Monday late morning – Lying in bed, deep in thought

Three weeks of vacation have just flown by and I haven’t worked as hard as I should.  I really should push myself more!  Why, I wonder, is it so hard to stick to a proper exercise routine?  I remember in my early 20s how I would get up every day at the crack of dawn to go jogging, and the immense pleasure I felt at witnessing the neighbourhood slowly wake up from silent darkness to birds chirping, dogs barking, store fronts opening, cars rumbling by and the smell of freshly baked bread wafting through the air.  I would finish off with an intense sprint, pushing myself to my limits.  After work I would walk to the gym for an additional hour or two of physical activity.  One year I even joined an exercise class led by a football player who had established a gruelling routine of squats, lunges, jumps, Pilates-like ab work and weights.  I was able to rise from a cross-legged sitting position to a standing one without using my arms and I could give my 6’3” trainer piggyback rides for fun.  Those were my strongest days.  How I relished the feeling of a blood-pumping, muscle-straining, sweat-dripping, vigorous workout. Oh I wish I could feel like that again!  

Monday evening – The universe conspires

I just poured boiling water over the couscous, which I’m going to eat with the salmon-kale-tomato-onion medley I cooked up.  As I’m about to cover the bowl with a plate, I take an awkward step backwards, lose my balance—oh no! this can’t be happening!!—and tumble to the ground.  My first thought is one of wonder at my quick reflexes—somehow I’ve managed to lift a hand to my head, cushioning it as I crashed down.  I’m lying sprawled on the kitchen floor with just a little bump on my chin and a bruised elbow.  Thank goodness for yielding vinyl floors.  My second thought: “If only I had managed to cover the couscous!  I wonder if it will cook properly now?”

For the first time after a fall, I’m completely calm (inside and out).  I do wonder how I will get out of this predicament, and because I want everything in my life to have meaning, I reassure myself that there must be a reason for this accident.  Maybe it’s a test…to show me that I can get up by myself?  Now that would be the perfect adventure to write about!

I twist my body so I’m lying on my side, then somehow manage to prop myself on one elbow, and with the other hand I push with all my strength against the floor, trying to raise myself to a sitting position.  My palms are beginning to sweat and I start sliding. I take a little break, twist a little more, and push, push and struggle harder.  I know I have no choice. I talk to myself out loud, words of encouragement that I can do it.  My whole body is straining, and finally, I force myself up into a sitting position!!  John was right; I can do it! 

Once I’m in a sitting position, it’s easy for me to scoot over to the dining area.  I don’t want to call anybody just yet.  If I can drape myself across a chair maybe I’ll be able to get up by myself.  I rock on my legs to get into a kneeling position, but I keep falling back after a few attempts.  So I grab the cushion on the chair, slide it underneath me and rock again.  I’m finally on my knees, precariously balanced with my arms pushing against the floor.  I try to swing my arm over the chair but my muscles are exhausted, and I fall back into a sitting position.  I rest, and repeat the whole process again, and again.  It’s not working; the chair is a little too high.  So I try to kneel on a cushion to give myself a little extra height.  Somehow I manage, and I experiment with different ways to hoist myself over the chair.  I feel like I’m almost there, I hug the chair, one final exertion, a push, and suddenly…the chair topples over along with my head, which lands with a big thump on the floor.

I’m lying flat on my back, with a banged up head and a sprouting seed of panic.  I rub my eyes and they start to burn and tear.  Oh no!  It’s the onion juice that’s still on my fingers.  Comic relief, just what I need. While waiting for the sting to fade, I lie on the ground, drained.  Maybe my adventure will be more like one of a castaway waiting to be rescued.  I don’t know if I have the energy to try once again to go from a lying position to a sitting one.  I wonder what it would be like to be stuck here until Friday, when my parents and aunt are dropping by.  I’m so tired that the floor actually feels comfortable.  Maybe I should spend the night here and try again tomorrow morning.  But no, a short break is all I need and once again I make another huge, strenuous effort to get myself to a sitting position…and I’m successful a second time.  Yay!

Now it’s time to play it safe so I call my friend K..  In good spirits, I ask him what he’s doing tonight. 

“Why? Do you want to go out?” he asks.

“Well, I’m kind of sitting on the floor right now.”

He’s completely baffled.  The last time I called him after a fall, I was barely audible for all my sobbing.  “But you’re so calm!  What happened?”

I take a few minutes to give him the details of my adventure, I mention the couscous, then we talk about dinner and the conversation turns to French fries and how the smell of deep-frying oil can really stink up your home.

After our leisurely chat, which I enjoyed thoroughly from the rare position of sitting on the floor, he says he’ll be over in half an hour. 

My friend K. really is wonderful.  He’s coming all the way from the other side of the city to my rescue.  What would I do without you K.?

While I wait for him, I drag myself over to the living room and exhaust myself further in a final attempt to get up independently.  I’m not able to, but I can’t complain.  After all, I did get everything I had wished for:  an adventure to write about, the opportunity to get up from a lying position to a sitting one,  and the exhilarating feeling of a vigorous workout.

MD, GDP, and being Environmentally Friendly

There’s been a lot of talk about the environment in the last few years: CO2 emissions and global warming, the giant pool of plastic debris floating in the Pacific ocean, the hazardous substances that leach out from technological waste, and our planet’s future inability to meet the demand of an increasingly consumerist society.

Like most people, I’m trying to do my little part in helping the environment.  I recycle.  I’ve outfitted most of my lamps with compact fluorescent light bulbs.  I drive my small fuel-efficient car to work a mere 7 km away.  I let my washed clothes air-dry.  Unless it’s unbearably hot, I keep the air conditioner off.  I rarely eat meat and I’m buying less stuff.

I hadn’t given much thought to the act of buying less until I had a conversation with my colleague S..  The question of how to support the economy and maintain low unemployment rates while minimizing our ecological footprint was raised.  One answer—a partial solution—is to spend more on services and less on goods.  And that’s what I’ve been doing all this time!!

In fact, many people with physical challenges have become dependent on certain services.  Although it’s never bothered me in the past, now that I see my spending as a way to boost GDP without harming our planet earth, I’m delighted to contribute a chunk of my income to the following services:

Condo Convenience:  Whenever my neighbour from across the hall would see me, he always tried to drag me into a repetitive diatribe against the high maintenance fees we paid.  I explained to him that I was happy to pay for the convenience of condo living (with elevators and winter-worry-free underground parking.)  If he hadn’t moved, I would have added how great it is that part of our fees are paying for the environmentally friendly services of an efficient condo manager and a very helpful superintendent.

Health:  I’ve spent a small fortune contributing to the livelihood of various alternative medicine practitioners and I learned a great deal from many of them.  The one I continue to visit regularly is my osteopath.  I first considered seeing him when I heard how much he had helped my colleague S..  Then when I brought up the subject of osteopathy with a physiotherapist, and both he and an eavesdropping client uttered the name ‘Igor’ in unison, the same Igor my colleague S. was seeing, how could I ignore the signs?!  It’s been wonderful being treated by him.  He’s a peaceful calming soul who in addition to osteopathy also does acupuncture and craniosacral therapy on me.

Grocery Delivery:  When my roommate moved out, I knew it would be impractical to rely on friends to go shopping with me, so I decided to register with Green Earth Organics.  They select a variety of organic fruits and vegetables (locally grown when possible) and deliver them right to my door.  Not only do I feel good about eating organic food, but I’ve also enjoyed chatting with the friendly delivery people.

Housekeeping:  I can still do a lot of the cleaning in my apartment and I’m sure I could find techniques and tools that would enable me to clean more difficult-to-reach areas like the tub.  But it takes forever!  And when I’m working, housecleaning chores fall to the bottom of my priority list.  (They weren’t exactly at the top even when I was fully mobile.)  So I was pretty excited when I saw two phone numbers for cleaning ladies on the notice board of my building last fall.  The first woman I contacted asked me to call back in the evening.  When I called the second phone number, a timid voice answered.  After a brief chat, we agreed to meet that very afternoon for an estimate.  I was a little surprised when I opened the door to a white-haired frail-looking dainty little lady, and for a fleeting moment, a pang of guilt tugged at my heart at the thought of this elderly woman cleaning my home.  She took a look around the apartment, expressing a girlish delight at the sight of my plants and the sunlit living area.  She then told me her price…I balked at the sum.  I didn’t expect it to be so expensive!   So I told her I still had another person to call and that I would think about it.  I can’t remember what she said next, only that there was a slight tinge of panic in her voice, the fear of losing me as a potential client.  After all, she lived in the building beside mine and most of her clients were a one-hour bus ride away.  Something about her moved me and I never did make the second phone call.  I couldn’t be happier with my decision!  Not only does Helen clean more thoroughly than I ever have, but she is a lovely person with a big heart.  One Saturday, when I returned home from an appointment, she asked me about my health.  I told her I felt I was on the right track and that healing might occur one day.  She asked me if I believed in God and if I prayed.  I told her I did (although I think our concepts of God might be quite different.)  I explained to her that I believed everything happened for a reason, that my condition was a good learning experience, and that I felt lucky to have so much support and to still be able to work.  “But I think I’ve learned my lessons and I’m ready to be healed!  I’ve been helped enough and now I want to do some helping.”  I added, all chipper.   And without warning, she burst into tears, sobbing uncontrollably: “I don’t understand, I don’t understand,” she cried, “why can’t he make you better? And you want to help!  Why doesn’t he make you better! Hasn’t it been long enough? ”  I found myself trying to comfort her while gently patting her back and handing her the box of tissues.  “It’s ok, don’t cry.  I’m ok, and I’m really happy, really, it’s ok.”  I was completely taken aback and touched by her compassionate outburst.  What a gem Helen is!  The funny thing is that a few months after Helen started cleaning my place, I found a phone number amidst some papers I was sorting out, a phone number I had jotted down two years ago for a seamstress.  It was Helen’s number!  Did I mention I’m a sucker for coincidences?

 I really do feel very fortunate that I can afford all these services, and with a smile.

(Note:  I came across this interesting BBC Green article—after my conversation with S.—about buying less to help the environment: Save Money and the Planet?)

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 index and middle fingers 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!

Overcoming Fear

On Monday, I drove to the hospital for three appointments.  I had purposely lined them up back-to-back so I would only have to take one day off work, but also because it isn’t always easy finding someone who can accompany me.  Since November, I rarely go anywhere alone.  My body seems to go in panic mode—all wobbly and shaky—when I’m walking without the support of a wall nearby or someone’s arm.  I can’t even cross the hallway’s short distance at work anymore. 

I can’t recall the exact moment when I lost my independence.  It might have been caused by an embarrassing fall in the elevator or back-to-school stress quickening the degeneration of my muscles.  I remember one morning last autumn, I was walking in the hallway of my building, gripping my cane with one hand and my other hand sliding along the wall for extra balance, when I came upon a newspaper strewn outside my neighbour’s door.  My body started shaking, my lungs clenched, and tears streamed down my face.  I simply could not separate myself from the wall and walk around the newspaper.  I turned back to the safety of my apartment, hyperventilating and stricken with fear. I called my colleague E..  Between sobs, I asked if she could pick me up on her way to work, and she did.  Another time, maybe a few days earlier, I was walking in the underground parking garage when I froze.  I couldn’t take another step forward.  When I tried to move my leg, I was overcome with dizziness and worried that if I budged an inch, I would crumble to the ground.  I waited for someone to walk by, swallowed my pride and asked a stranger if he could walk me to my car.  And he did.  (Thank you so much E. and Mr. Stranger!!)

It was a period of angst and panic.  I call it my autumn crisis.  The only place I felt safe was in my apartment.  But I have since regained peace and serenity.  Not because my muscles have gotten any stronger or because I have regained confidence, but because I have found ways to cope.  I now push a little shopping cart to get from my apartment to my car.  It’s hardly stable, but it adds that extra bit of security I need.  At work, H. and S. are usually waiting near my parking spot, smiling and ready to help me with my bags and lend me an arm as I walk to my classroom.  I am so grateful to these two young ladies.  Seeing them every morning brightens my day!  And in the school, my colleagues and students are always so helpful and willing to lend a hand.  I’ve been given a laptop and overhead projector so I don’t have to stand to use the chalkboard, and I can roll my office chair to get around my classroom.  Unless I’m with someone, the only places I go are to work and back home.  I avoid unsafe situations. 

It’s all working out and I’m reasonably happy, and yet it seems like a band-aid solution…  a quick fix that’s not addressing the problem.  Some people think I would be safer and more independent in a wheelchair.  But it seems to me I just need to get over this fear.  I still have some strength left in my muscles and really should use them as long as I can.  Why is it that I can walk fairly well beside a wall or when barely holding on to someone’s arm?  But if I find myself alone in an open space, when I have to cross the hallway at work, my muscles lose their coordination and strength.  It seems more like a mind problem than something caused by muscular dystrophy. 

So it was a great relief when two months ago, my neurologist referred me to a psychiatrist, one who had extensive experience helping people with neuromuscular problems.  And that was my highly anticipated appointment on Monday, the third appointment of the day.

I was not disappointed.  He was positive and encouraging.  His advice was simple; something I should have known.  Yet, it’s always more motivating when somebody with experience in these situations tells me what to do:  PRACTISE. I need to practise walking in open spaces, I need to practise crossing the hall without assistance, and I need to do it in long 45-minute stretches. 

Listening to him reminded me of a talk I had with my students when they grumbled about a challenging assignment.  I had explained to them that a task might be difficult at first, but with practice, it gets easier.  One student then raised her hand and told me, “Mademoiselle, shouldn’t you then practise coming outside with us at recess?”  Yes N., wise little girl!  I should!

And that’s what I’ve started doing.  Instead of remaining safely nestled in my chair at lunch and recess, I cautiously walk back and forth across the open space of my classroom and have even started attempting crossing the hallway without holding onto someone’s arm.  It’s nerve-racking and uncomfortable.  My body tenses up during the whole ordeal and I’m drained by the time the bell rings.  But if it means I’ll once again be able to wander confidently from one end of the school to the other, that I’ll be able to shop alone, or take a walk in the park whenever I fancy, then it will be worth it!

Thank you Doctor!  And thank you to all the people who work at McMaster Hospital.  Every time I go, the receptionists, nurses, technicians, doctors and even the cafeteria staff have been extremely friendly, cheerful and helpful.  It’s uplifting to be among so many welcoming and warm people.  And even if they still haven’t figured out what exactly is wrong with me, I greatly appreciate everybody I’ve encountered there.

And thanks to my wonderful friends K. and A. for taking turns to accompany me to my appointments.  I just might be able to go to my next appointment alone if this works out!  Or who knows, I might not have to go back at all because of my incredible progress!