Wednesday, December 14, 2011

Must Be the Shoes...

I've never considered myself a slave to fashion.  When it's come to wardrobe, I tend toward the comfortable, with the occasional nod to the quirky.  I haven't been all that interested in which designer's name was on the tag.

But I've come to understand and appreciate the fascination that some women have with shoes.

Before I started having mobility issues, I didn't give much thought to shoes.  If it was comfy and not butt-ugly, I'd wear it.  But when I started having mobility issues, I started paying a lot more attention to my shoes.  Even the slightest heel added a degree of difficulty to the sport of walking that I was just not prepared to handle.  Then the physical therapist recommended a foot up, a device to reduce the frequency of foot drop.  Most people can walk without having to think about keeping their toes out of the way  Their heel hits the ground, then the toes follow.  As many of us with MS know, foot drop is that not-fun-at-all tendency to not lift our toes, which can lead to falls.  The foot drop is a device you strap around your ankle and connect to your shoes to help lift your toes out of the way when you're walking.  Unlike a lot of mobility aids, the foot up is a relatively inexpensive solution.  The biggest downside?  You can only use a foot up with laced shoes.

So bye bye all those cute little flats with no laces.  So long sandals.  Sayonara flip flops.  Dress shoes?  Ha.  But walking without falling interested me more than those cute shoes, so I did a long-overdue closet purge.  I was on a quest to find shoes that were comfortable, cute, and had laces.  I found a few pairs, and most of them were comfortable enough that I could wear them for more than 4 hours without grimacing in pain or wearing blisters on my Achilles tendon.

But that got old real quick.  And those shoes that I had thought were cute looked clunky and boring pretty fast.  They certainly weren't flattering with dresses, and except for one sassy pair of Keds, they looked silly with shorts.  I felt like the ostracized kid in old sitcoms who walked around with the corrective shoes and the retainer that swallowed her head.  I hated looking down at my feet and seeing those damned laces.  And do you know how hard it is to tie shoes when you have spasticity in your legs?  I'm supposed to be able to securely tie a shoe when I can't even bend my knee to reach the shoe?  But of course, an untied shoe was a danger from which not even a foot up could save me.

So the new approach is screw the foot up.  It makes it harder for me to go up and down steps because of the way the brace secures around my ankle, so in some ways it was making my walking worse.  Then I treated myself to a couple of pairs of new shoes without laces.  The first pair is a cute black shoe that replaces the laces with zippers.  It's easy to get on and off my foot (my kids can even zip the shoes!), and it looks pretty darn cute with a nice pair of pants.  The other pair has velcro to keep it secure on my foot and looks much sleeker than the laced shoes.  Both are easy to put on, even when the leg wants to stiffen up and stick straight out.  How when I look down at my feet, I smile.

I still can't wear a sassy little pair of sandals.  But at least I don't have to try off the prison matron shoewear look anymore.  And even though I still scuff a little, it's easier to manage steps in the new shoes sans foot up.

There's no rule that says I have to abandon style just because I have MS.

Tuesday, December 06, 2011

Ignorance is Cruel

Well-intentioned but ignorant people can be so cruel.

One of the biggest challenges of MS is the "invisible" symptoms.  People don't see what's causing them, people don't understand them, but it's amazing how much they think they know about how to fix them.

Take spasticity, the muscle stiffness and spasms that can cause your leg to lock.  It's not uncommon for me to try and bend my knee for my leg to instead make my leg straighten out and not budge.  In the winter edition of Momentum, the magazine distributed by the National MS Society, neurology professor Bruce Cohen explains that spasticity is caused by spinal cord damage.  The common recommendation is to alleviate the pain and stiffness of spasticity is to exercise through stretching.  I've worked with a physical therapist (who has a doctorate) to develop a stretching and strengthening routine that I need to follow regularly.  This physical therapist (did I mention she has a doctorate?) has done presentations on MS exercise programs in which she emphasized the importance of strengthening, stretching, balance, and cardio exercise.

It's amazing to me the layman response I've gotten from people close to me regarding my spasticity.  I made the mistake of telling my family that my neurologist wants me to exercise more.  Their response has been to hound me for not spending enough time at the neighborhood fitness center and get on the elliptical machine.  When I tell them I need to adopt a stretching program, they tell me "that's not what your neurologist meant when he said exercise".  Some of their other comments:
- "You bend your knee some of the time.  What are you doing differently, thinking about it?
- "You need to go down to the fitness center and work with those trainers there.  They'll know what you need to do."  (Have I mentioned that I've worked with a physical therapist who has a doctorate?)
- "You need to start exercising regularly before you become a cripple."
- "All it takes is some willpower." (Would they tell that to someone in a wheelchair?)
- "Stretching's not going to do anything for you."  (Yup.  All of those neurologists and physical therapists are wrong.)

I try not to let their comments get to me - after all, they do mean well.  But their ignorance hurts.  Deeply.  It's hard enough to stay motivated through the setbacks and the pain and the personal battles.  But when the people you love - and who love you - are saying such hurtful things, it's tough to deal with it.  These people are supposed to be supporting you, and truly think that they are supporting you, but instead they're throwing up even more roadblocks.