Category Archives: Limb Girdle Muscular Dystrophy

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!

Little Helpers

As my muscles get weaker, my students become more helpful, more responsible, more aware.  Or perhaps it’s just that they have more opportunities to show their caring nature.  Every day, I’m touched by their kind gestures.

They eagerly pick up things I drop and jump out of their chairs to open or draw the curtains.   They volunteer to set up the art activities and clean up the mess afterwards.  They organize the cupboards and tidy up the storage bins. They offer to refill my glass with water, and fight over who can go to the office to heat up my lunch.  They bring my bell to me when the class is getting noisy and squeeze close to their desks, giving me space to move through the room.  They even lug the stepladders into the hall and spend their recesses putting up the artwork on the rock hard bulletin board.

And last Thursday, after I had stepped out of the class during my planning time and returned a few minutes later to a room full of lively energetic children milling about, fully engaged in a drama activity, my heart just melted when the kids who had noticed me cleared a wide path and started shouting at the others to stop moving so I could get back to my chair safely.

It’s a good feeling, being surrounded by so much enthusiastic kindness!

The Thrills and Chills of LGMD

Halloween is in the air, with horror movies playing everywhere, haunted houses luring in thrill-seekers, and radio hosts interviewing experts about “why we love to be terrified.”  Well I don’t like it one bit!  Yet dread and fright are my pesky companions every day.

The pitter patter of a joyous child bounding up behind me paralyzes me with terror as I brace myself for a possible hug that might send me tumbling to the ground.

Movement seen through the narrow window of the underground-parking door alarms me with such force that it takes a few minutes before I can recoup enough energy to open the heavy door.  But first, I wait until the hall on the other side of the window is so quiet and still that the chances of someone unknowingly flinging the door open and knocking me to the ground are reduced to a minimum.

Rainy mornings are a nightmare, when all the kids are ushered into the school, crowding the halls as they wait for the first bell to ring.  With heart-thumping trepidation, I make my way slowly through the throngs, my senses on high alert for swinging backpacks and jostling bodies.  Often, I enlist a few students to guard my frame and clear a path through the chattering herds. Even so, when I finally reach the refuge of my empty classroom, the anxiety has turned my legs to jello, making it another arduous task to cross the length of the room where I can plop myself down on my chair and breathe a sigh of relief.

Kind people attempting to grab my grocery cart when it appears to be stuck in the grooves of the elevator entrance elicit a panicky yelp “DON’T TOUCH!”. And after I explain that my cart keeps my balance, it still takes them a while to recover from the shock of being treated like purse snatchers.  Meanwhile, the adrenaline that has shot through my body has left me all quivery and teary-eyed, perplexing them further.

Even the wind rustling the leaves puts me on edge as I remember how violent gusts have slammed me against my car on more than one occasion.

But the worst of all is when fear itself, for no reason at all, takes possession of my body.  It seems to happen every autumn.  Halloween in the air indeed!  A month ago, I was carrying on with my daily routine with confidence.  Then from one week to the next, my body suddenly starts freezing up in the middle of the parking garage or in front of the school bus, too fearful to take another step forward, as if I’ve suddenly found myself at the edge of a vertiginous precipice.  Sometimes, a good samaritan seeing my distress comes and rescues me with a lending arm, but most often I have to battle the energy-draining panic alone.   My turtle’s stride slows to a snail’s pace and my confused leg muscles, forgetting how to walk normally, adopt the gait of a slow Quasimodo, with the right leg leading by a few centimetres and the other one dragging hesitantly behind.  I can barely swing my leg into my car, I’m so scared of falling.  The fear has even followed me right into my home, breaking through the serenity of my haven.  Just crossing from one edge of a doorway to another leaves me dizzy with fright, and I have to hug the walls like Spiderman to move through my hall.  When I finally make it to the sanctuary of my bed, my body is utterly exhausted from the day’s terror, in pain from all the tension, yet relishing the promise of a good night’s peaceful sleep.

Enough, I say!  An exorcist is on its way.  I’ve already taken the first step in the process of getting myself a POWER!-chair.

Infectious Attitudes

If you had passed by my classroom during recess last week, the sight of half a dozen little girls huddled around a table and cradling something tiny in their hands might have stopped you in your tracks.  You might have approached them to see what was causing the cooing and giggles, and squeals of delight.  What was the object of such sweet affectionate chatter? They’re so cute!  Oh, mine’s tickling my hand. Hihihi. This is so fun. Look at this one, it’s so small!  Can we take them outside to play, Mademoiselle?

You might have been surprised (possibly even revolted) to see unsightly mealworms crawling across their palms.

The first time I laid my eyes on a container filled with too many writhing larvae, it took a conscious effort to suppress the common reaction of repulsion.  Eventually, I came to view them as fascinating low-maintenance creatures, perfect for teaching the life cycle of an insect and the magic of metamorphosis; but I never touched them, always preferring to scoop them out with the reassuring distance of a spoon.  Until that special day last week.

It all started with Shannon, who came up to me one morning and whispered timidly in my ear to ask if the mealworms were slimy.

“I don’t think so,” I told her, “but I’ve never touched them.”

“Can I touch one?”

“Of course,” I replied, “but not now.  Maybe at recess.”

So at recess she came, eager to hold the wiggly critters in her hand.

The next day, during lunch recess, she returned with a following. Their enchantment with the mealworms must have rubbed off on me, because that very afternoon, as I was transferring the pupae into a separate container, I used my bare hands!  And I found myself as enthralled as my students—albeit slightly squeamish—by the tactile sensations of crawling mealworms and twitching pupae.

Amazing, I thought, how Shannon’s quiet fondness for the mealworms influenced her friends and her teacher, changing our perceptions from ‘eeew!’ to ‘cooool!

It made me wonder how I might be influencing people’s perceptions of those of us who move differently.  If the feeling of awkwardness and the perception of ‘weird’ that sometimes arise were replaced by something a little groovier, it would make me very happy indeed.