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.

16 thoughts on “I gotta new way to walk (walk walk)*

  1. Laura says:

    Here’s to waking this new way for a LonG, long time. I am so happy this year keeps bringing more and more good your way

  2. laurak54 says:

    SO happy this new way to walk is working for you. And thanks, for the ear worm. LOL.

  3. Connie Schwarzkopf Nichols says:

    How exciting! Wow! I just love hearing of fellow MSrs who are constantly striving and succeeding t maintain the upper hand! Keep it up, and thanks for the info on this device that even I was not aware of! (I’m so glad to ear you’re in PT……there’s nothing better!)

  4. Connie Schwarzkopf Nichols says:

    BTW, does this device have a name? I want to investigate it further.

  5. Rick says:

    Amy,
    truly inspiring and informative! congrats on taking another step forward!

    Rick

  6. Vicki Pollack says:

    When you demo-ed your new assistive foot accessories for us, we were amazed….we haven’t seen you walk so upright and confidently in a long-long-time. Wishing you happing travels (maybe a few with Bennie?) Love that video–it’s perfect!
    Mom & Norm

  7. Darline Kilpatrick says:

    Hey Amy, Your latest news gives me much to think about. I find myself wondering how much of my fatigue can be attributed to just trying to walk in a straight line. (smile) It is great to read about your success and I want to investigate this more. I am now starting my 20th year of living with MS and am wondering how much more tired I can get and still walk a little. Ritalin helps but of course not nearly as much as I would like. Anyway, thanks for the info, I am very happy for you!
    Dar

    • aglol says:

      Darline!!
      So good to hear from you! Thanks for your comments- I know can relate to the 2 decade info/emotional overload while living under the MS umbrella. (one with lots of leaks!) I hope that perhaps my experience can help in some way- if nothing other than to inspire more options to make life with MS a little bit easier. I hope you are doing well in your (not so new!) home. I think often to a time less-able and on the couch – connecting to you- my lifeline – helping me through the exhaustion, boredom and frustration of that summer. Always appreciated Darline!
      ~Amy G.

  8. Bonita says:

    We often don’t realize how much we compensate for our bodies aches, pains and inabilities. The amount of energy put into walking had become so much second nature that you didn’t realize how much attention you gave it. It is great you don’t have to have that noise in your head anymore, more space to think about how pretty the walk is. :)

    Happy for you Amy.

  9. Thrilled for you Amy! I hope it continues to improve as you do more walking!

  10. Sarah Hove says:

    I just discovered your site, and can’t wait to ask my MS clinic about Walk-On. I have tried the electric stimulator in the past and found it extremely temperamental. I am in my 30th year of MS diagnosis and am still walking. I have also found that I spend most of my time now just concentrating on not falling down.
    Thanks for all that you are doing to bring mssoftware to fruition. There are too many rabbit holes to chase when you go on the internet and it just leads to frustration.
    I look forward to familiarizing myself with your blog.
    Sarah H

    • aglol says:

      Thanks for reading and sharing your story Sarah! Whenever I learn of anything that makes my life with MS easier I love to pay it forward. So nice to know that it’s meaningful! And thanks for ur encouraging words abt MSSoftServe. I’ve been dedicating my time to that and therefore don’t write on my blog as often as I would like. 😉 So u may want to read my back story.

      If you’re on Facebook I’d love to continue our conversations there.

      Thanks again for your comment- it fuels my enthusiasm.
      ~Amy

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