Tag Archives: Foot Drop

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Can Amy Come Out to Play?

hmmm… not so much…

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but take for granted. (Unless you are watching Chris Hadfield performing Space Oddity on the International Space Station –not watching it on the space station, watching it on YouTube. ) But for some of us, standing on the ground does not feel grounded. For some of us, the gravitational pull is enemy # 1 and for us just leaving the house can be really frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is. Some people living with MS know what I’m talking about. And just like so many realities of life with Multiple Sclerosis, there’s no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

Chris Hadfield Space OddityI was commuting to NYU and tripping a lot. It was happening as a result of intermittent foot-drop and I cope(d) by cozying up with my good friend denial for as long as possible, in spite of what retrospectively seems glaringly obvious. Kissing the city sidewalk and the inability to find the horizon line was my repeat nemesis. Since that time, I went on SSDI (disability- I prefer to think of as this-ability) which made it very easy to stay in my pajamas and avoid leaving the house. An emotional stop sign now blocked all exits from my home. Not a warning to proceed with caution or the graphic using wiggly lines that suggest an issue ahead; No, this is a permanent STOP sign tangled-up with the scars on my brain that leaves little room for misinterpretation.

Full stop.

I spend a lot of time thinking about my disinterest in leaving the house. (Granted, I spend a lot of time thinking about what I’m feeling and thinking about why I’m thinking what I think. I’m all meta, all the time.) It makes sense that I’m apprehensive about stepping out the front door. The energy required to consider every single step while I’m trying to make sure that I don’t make the wrong move and end up on the ground, is often more than I can handle.

Over the years I’ve adjusted to the need for assistive devices. I carry a walking stick and at times I wear foot braces. But neither are the vertical guarantee. When I first got them, these “accessories” seemed like superheroes to me. They made me believe that they would stop gravity from its overzealous evil bidding. But it didn’t take long for their kryptonite to be exposed and with it my physical and emotional weaknesses.

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On Monday I went to a meeting to plan the High Holiday Family Service (B’yachad) at a Temple member’s house. It’s one of those evenings that I know if I  get there, I will really enjoy it. This is an incredible group (mostly women… just saying!) and I usually leave with the feeling I am part of something bigger than myself. But in spite of that knowledge, I fought myself all day long. To go or not to go. My everyday question.

Fear is usually greater than the sum of its parts and so I broke it down, planning every literal step of the way. I’d been to this house. I knew the hurdles (steps without a hand-rail, not well lit) and so I set up preventative measures to reduce the risk of falling on my face. But even with these cautionary measures, I was still reluctant to go.

I called an “assistive friend” to give me a ride there and a shoulder to lean-on. As we ascended the stairs, it felt like Masada from the base camp, albeit only three steps. (I should mention here that I climbed Masada twice and even with MS it was less intimidating.) But I made it.  (yay me)

Hard to imagine I climbed Masada twice! 1985 (pre MS) and 2001 (with MS)

Even Masada has a banister! (albeit partial)

Unfortunately a three step descent was not so successful. A combination of unforeseeable circumstances played out and that last step was a doozy. I flailed for what seemed like an eternity and when I finally touched down, I hit the same spot on my knee that had been pre-seasoned by last week’s trip. Every muscle tightened as I recoiled in preparation for the inevitable impact. I was keenly aware that the flailing is more painful than the skinned knee and the feeling of out-of-control continues to sting.  I mean… geez! I pre-planned everything!

Where was I….she says rhetorically to her attention deficit. Oh yeah.

It was suddenly clear. Not because  the fear of leaving my house had been nagging at me for the last couple of years. Nor was it because this fall forced me to acknowledge that the changes (I hate the word “progression”. It makes it all seem predetermined) of my disease are  easily seen. I clearly need to upgrade to “Assistive Device 2.0” and I’m so scared that it’s not compatible with Amy OS8.

So I’ll reboot, throw out my denial- based -preferences and Google a Quad. (Can I still call it a stick? I hate the word cane!) And will just have to see how it goes.

So please ask me to coffee! If I’m brave enough I will meet you with the four-point-stick in hand, and for once be confident that the sound of my current assistive device falling to the ground will not be heard. My 2.0 will be able to stand on its own four feet. And thus, allow me to master my two and hopefully my relationship with gravity will be renewed. (C’mon Amy, give gravity another chance…. you may turn out to be your BFFs yet again.)

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I gotta new way to walk (walk walk)*

The place where it all began...

The place where it all began…

Last week I took home my brand-new pair of Walk-On® foot braces– though I prefer the more fashionable phrasing, “assistive foot accessory” 🙂 It all started about 6 months ago when I signed up for physical therapy at Kessler Institute for Rehab here in NJ. It didn’t take long to feel improvements that reached well beyond the muscle-strengthening, balance-increasing, core-engaging milestones. Just taking this pro-active step made me feel better. Not to mention the positive influence of having someone (a.k.a Liz) cheering me on for even the slightest improvements. We should all have someone who plays that role in life, dontcha think?

In addition to this twice a week cheer-lead gig, I have been part of the Kessler’s Wellness Program for PWMS and I can’t begin to tell you how it’s changed my life. It’s funny how the ability to learn is so contingent on timing and circumstance. (Considering my MS SoftServe mission you’d think I’d know that by now!)

The Cheerleader and The Cheered!

The Cheerleader (Liz Woods) and The Cheered (me)!

So it was at one of these sessions that a physical therapist (we’ll call him Joe, which is in fact his name!) talked to us about balance strategies. It was basic stuff that I hadn’t considered; like how to stabilize oneself by pressing the outsides of your feet to the ground. Smart right? Then he spoke about the assistive devices. In addition to balance and dizziness issues, I have intermittent bi-lateral foot-drop. i.e. I pick up my foot, my toes drop and then I do. It happens unpredictably on both sides and gets worse as I fatigue. This reality makes for some serious apprehension with every step I take. And even with the added insurance of a walking stick- I continue to fall. And every fall is a fall too many. (Especially when it’s in front of my daughter- that just sucks!) As far as assistive devices, I thought I knew what was out there. I had heard of the commonly used device – the one that sends an electrical signal down your leg prompting your foot to lift at just the right moment. I figured if things should get worse I know it’s out there. And after all, my foot-drop is intermittent and occurs both of my feet. What was I going to do? Wear a brace on both feet?

Yes… apparently I’m doing just that! When I learned about the variety of braces- each offering different degrees of assistance and all different degrees of unassuming, I realized I need to revisit this. So I did at my next therapy session. Liz sized me up, made a recommendation and sent me off to the brace clinic- also at Kessler.

While I waited for my appointment, I continued to doubt myself. Is this something I really need? I mean, I don’t have that bad a case of foot-drop… Well that feeling lasted for all of 10 minutes abruptly ending with my pre- and post- brace walk demo. As soon as I heard all the oohs and ahhs from the cluster of experts watching me from behind, I knew that this is going to be a huge improvement I my life. I hadn’t thought much about my apprehension in walking and how much energy I wasted on making sure I won’t fall.

My brand new assistive foot accessories!

My brand new assistive foot accessories!

When I took those babies home I looked and moved like a different person. I found an audience in my family ooh-ing and ahh-ing with every sashay & shantay. And while I was concerned about getting caught up in the feeling of “OMG, I have to wear these things to walk well?” I am completely distracted by the whole “OMG I can walk so well with these things.”

And they are oh so subtle. One might not notice unless that one happens to be on the ground and spots the carbonate strip running down the back of my calves. And who does that!?! 🙂

After 25 years of living with this totally-unpredictable, completely-incurable, constantly-changing disease I thought I had a pretty good handle on managing it. But managing one’s MS is not unlike a cat chasing the red laser pointer dot that disappears just as the paw is closing in on it. Apparently I’m gaining on it!

*If you don’t have a person in the house who has watched Sesame Street in the last 1o years then you probably aren’t singing this title like I am. And because I find the tune oh- so-necessary to properly express my enthusiasm watch this.

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And the other foot-drops…

On the way to see my beloved neurologist last week I was thinking about my decision in December 2007 to use a walking stick- not an easy one to say the least.

For quite some time I had been tripping over nothing- though I never thought too much about it. I was branded a klutz at a very young age and always chocked it up the tendency to a flawed gene I had inherited.  So when concerned family members asked me if I had considered using a cane- I defensively claimed that if I needed a stick, my doctor would certainly have recommended it. And thus the phantom obstacles continued to block my path, with many a bloody knee and an embarrassed moment on NYC subway system.  I glossed over the absurdity of this all-to-frequent occurrence with a bit of performance art.  Brief moments of flight followed by random explanations announced to everyone and no one. Look that sidewalk is uneven! It’s these shoes! These practical rubber soled shoes tripped me.

And so it went unchecked until December of 2007 when the dizziness  arrived, an unwelcome guest who would never get the hint. What I hoped would be temporary became a new way of life. It was my husband’s inquiry that made me realize I would need to reconsider what I’ve assigned as my neurologist’s responsibility. Keith’s question has more power than my original family and it forced me to realize that my life requires another “foot” on the ground- a tripod if you will to help me navigate the concrete jungle as well as the bumpy green suburbs.

This need was reinforced when I visited with the vestibular neurologist who when testing my stability marveled that I would consider walking without a stick.  Placing his own stick near his desk reminding me of Joe Gideon’s exam as the doctor and patient both had cigarettes hanging off their lips hacking away during his physical— only less ironic. (see All That Jazz)

So, where was I? Oh yes- my doctor’s visit. After the routine performance of move this, touch this, walk like this, tell me this- my Dr. said,

“What are you using a cane for?”

“To compensate for my foot drop” I say.

“Well foot-drop doesn’t show in your reflex test or in your walking test.” he said

“But it does show when I’m kissing the sidewalk!” I hadn’t thought quickly enough to say.

So I’m leaving his office wondering why my Dr. would question my decision – one that was very difficult to make- and serves an important purpose in my life. Could he have said “Tell me, why have you decided to use a walking stick?”

I know, I know. Dr.s treat diseases and  symptoms while nurses treat  people. How is it that they can’t be housed in one person? Is there is no time to teach it in those advanced degrees?  And to think that I thought that my Dr. would have recommended it, if he felt I needed it. In addition to having this disease, and living with the constant symptoms and their physical/emotional effect- I have to be my own advocate. Any large company would view that role as a conflict of interests.

Hmmmh. I miss Linda Morgante more than ever.