Sunday, June 9, 2013

The Fog of 'Roids

Looking forward to providing more of an update in a few days...honestly, I've spent the better part of this weekend in bed. 

It was a tough adjustment for my body after three consecutive days of Solu-Medrol.  Even as I type this, my eyes are heavy and yawns frequently interrupt my typing.

But here is the great news -- I believe the steroids worked and my right foot has come back to life.  It's not perfect, my balance is a little more erratic than normal.  I'm not sure if that's because I was overcompensating for the past week while adapting to my right foot dragging or if it's just a part of my regular MS (balance/coordination comes and goes, as it pleases). 

I've hesitated posting anything, yet, because - well, I have been sleeping most of the weekend - and I didn't want to proclaim any success until after a few days post-steroids.
I'll follow-up more this foot drop was accompanied by other new symptoms that, although don't really impact my mobility, are just as troubling.  I'm hopeful the Solu-Medrol worked some of those issues out, too.  Also, on Saturday I had pretty tough fall - I'm ok, thankfully there was only bumps and bruises but it was a painful reminder that with MS, there is no such thing as a sure step.

Happy Sunday to all!

Monday, June 3, 2013

Walk This Way

I heard once that way back before MRIs and other tools of modern medicine, that patients suffering from multiple sclerosis would actually be misdiagnosed as having chronic alcoholism.

I can’t verify the accuracy of this but it wouldn’t surprise me if it were true. The stumbling around, impaired vision, slurred speech, etc. – are all common symptoms of MS…but also apt descriptions of a person, MS or not, after having a few too many drinks.


I carry a laminated card in my wallet that affirms I have MS - this doesn’t get me discounts at the movies nor signify a special club us MSers are part of, secret handshake and all (although that would be pretty cool if we did have one) - no, I carry it with me wherever I go in case of medical emergency and yes, in the off-chance that one of San Antonio’s finest mistakes my own staggering around as something that it’s not. Don’t take just my word for it, there’s currently a group on Facebook (with over 10k members) called “We’re Not Drunk, We Have MS!”

I mention this as a backdrop for the latest challenge multiple sclerosis has thrown our way. Last week, around the time of my monthly IVIG treatment, I started having greater difficulty moving around. Right around Memorial Day my right foot decided it no longer wanted to join my left in helping me walk around. I’m still mobile, but it’s not a pretty sight. My right foot drags behind as I attempt to make my way around the house and walking up or down the stairs has become part aerobic workout and part roller coaster ride.

It’s almost as if my right foot has decided to retire early and left the rest of my body to fend for itself. I challenge myself to walk normally across our living room, laser-focused on raising my right foot as I walk, hoping to outsmart my disease – “I’ll just will it away”, I think to myself. Instead, I stumble more and by the time I make it across the room I’m exhausted.


To be clinical, I believe what I’m facing is called foot drop – or at least I have some form of it. In addition to walking around, getting dressed has become a greater struggle…even just crossing my right leg is no longer a simple task.

But as I walked into my son’s school on Friday morning, to watch him and his classmates perform a poetry reading, what to call my latest ailment was the last thing on my mind. So was worrying whether this new exacerbation was my new normal or just a temporary flare-up – those things are mostly out of my control. All that was on my mind is what my son, his friends, their parents, his teachers and principal would think seeing me stumbling around. I’m supposed to be my son’s super hero, not an object of embarrassment. I made my way across the cafeteria, hundreds of kids eating their lunches, my right foot dragging behind just hoping and praying that I don’t fall.

I know I shouldn’t think this way and trust me; I challenge myself to be a better person. How silly that I’m less concerned about what my disease might be taking away from me and more worried about how I’ll be perceived by my children, friends yes – even strangers. I want to say; no I’m not drunk and certainly not lazy. There’s no amazing story about how I rescued ten puppies from a burning building, balanced our country’s budget and turned Super Bowl Monday into a National Holiday while spraining my foot and causing a permanent limp in the process. I really wish there was. Instead, for some reason, beyond the medical community’s understanding, I get lesions on my brain and spinal cord which disrupt the communication from my brain to the rest of my body. Basically, the directions to my right foot get lost in the mail.


With MS, nothing can be taken for granted, not even something as minor as crossing my legs. Here today, perhaps gone tomorrow. I’m hopeful this is just a short-term challenge and one morning in the very near future I’ll wake up and my “foot drop” will magically disappear. I’ve been using a cane this week to help me around the house and I’ll start planning for the additional time that will be needed to get dressed.

Chronic alcoholism might have seen like a reasonable explanation in 1913; please don’t mistake my tone as dismissive to the previous era of medicine. I’m sure our future generation in the year 2113 will enjoy having a laugh about how we lived in the year 2013. Our hair styles and fashion choices will amuse, the inability of our phones to transport us around the world will confuse, the overuse of cilantro in cooking will disgust, under-utilization of hoisin sauce will disappoint and the general reluctance to celebrate birthday “weeks” will spark much discussion of our stoic generation.

Most of all, I hope my future grandson or great-grandson looks back on our time and marvels (with wonder and sadness) over the various diseases and disorders that plagued our time. My dream is that multiple sclerosis is a distant memory, an illness from a far-away time, when his ancestors walked uphill both ways to school, drove cars with no capacity to fly and actually went to work or school the day after the Super Bowl.

©2008-2017 Michael J. Wentink, Jr., All Rights Reserved.