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!