regaining function

We bought my WalkAide in May 2012. It, Oscar as he is called, changed my life. My drop foot had become such an impediment to my mobility that I rarely went anywhere by myself, and if I did, it certainly wasn’t very far. I started with an AFO, but for the distances I wanted to walk, I needed something more–something that would stimulate my peroneal nerve, responsible for lifting your toes, with each step. We had a brief honeymoon until my hands gave out in June from RA, and I couldn’t use a cane because I could no longer use my hands. By the time we went to Japan in September of that same year, I was again able to walk with a cane but was so fatigued from not being able to do anything for several months and the combined effect of two incurable illnesses that I brought my wheelchair, as well.

I had only been paleo since August 1, 2012, so I certainly wasn’t expecting any miracles in my condition. It was enough of a miracle that I was no longer in excruciating pain; I knew that was because of the low-dose prednisone, though. I couldn’t imagine dietary changes taking effect so quickly.

My fatigue has always been a major issue. I dealt with MS-related fatigue and now RA-related fatigue on top of that; they all just melded together with the fatigue from being a slug for so long and now trying to actually accomplish something, anything. My muscles had clearly atrophied. The first half of 2013 was spent trying to get my energy back by wearing Oscar all of the time and taking walks to build up my stamina. This in combination with the adrenal support and other additions to my plethora of supplements by my functional medicine MD made a huge difference. By June 2013 I felt dramatically better—enough so that I went shopping by myself for the first time in an entire year.

At this time I occasionally drove myself to and fro, but mostly my partner accompanied me everywhere. I had just finished with a rolfing appointment and decided that I’d like to give the nearby Big Whole Foods a visit. I called my partner from within the store and got a very worried response. “Where was I, and what had happened?” I was in tears in the store. I couldn’t conceive of this change in my well-being, in my energy. What was happening? Whatever it was, it was fabulous! I could do things on my own again. By this time, as we’ll recall, I was a total paleo believer. I’d been off pharmaceuticals for the RA pain since January 2013, and my rheumatologist asked me to let him in on my secret. But this energy? My body was clearly repairing years of damage. Thank you functional medicine!

In September 2013, I noticed sores appearing on my calf under Oscar’s electrodes. I was not amused. I’d try to let them heal by not wearing Oscar, but my mobility issues remained a difficulty. No Oscar meant no getting around and doing things by myself. I thought at first it had something to do with shaving that leg and ingrown hair follicles, but I didn’t understand because I’d been shaving the entire time I’d had Oscar—a year and 4 months. We went to Japan, I didn’t shave, and the sores worsened. Let me just say here that what I did was wrong. I wore Oscar, stimulating my leg on open sores. BAD!! I was in Japan on vacation and wanted to walk! By the time we returned home, my sores were oozing and ugly. I applied liberal amounts of antibiotic ointment and didn’t wear Oscar. I was NOT happy.

Not walking properly, upright etc. causes no end of problems. The ball of your femur doesn’t sit correctly in its joint and your acetabulum (the cup of that hip joint) wears differently. It puts your sacrum out of whack. It causes pain. It’s a pain in the butt in short. Using google, I saw that sores associated with WalkAide usage had already been reported to the FDA. Great. I contacted Hanger Orthotics to talk to my guy, who is lovely. He advised using a gel to place on the electrodes to enhance conductivity with the thought that 1) my skin was sensitive, and 2) additional substance to buffer my skin and enhance conductivity would alleviate the problem. I tried this, and in short, it did not work. The sores persisted. One actually healed, but the other was always present. You could tell a slight difference in the texture of the skin. The first time I would wear Oscar, that site peels off with the electrode leaving an open wound and flesh on the electrode. Very pleasant. I would go days without wearing Oscar, and then I’d have an appointment where I needed him. Whoops. The sore Is back. Repeat ad infinitum. You get the picture.

Somewhere in here, I decided to try and NOT wear Oscar for as long as possible. I’d attempt to remain homebound so I didn’t need him as much. I wanted the texture of that skin where the sore appears to return to normal before we are off to Japan again in late March. After all, I need Oscar in Japan. One week turned to two, and on the third week, I noticed something funny and exhilarating. I was doing things that I normally only could do WITH Oscar, but I wasn’t wearing him. I was walking, not dragging myself, up and down the flights of stairs in our home. I was walking out to the mailbox to put out mail. I went to my rolfing appointment one week, and on the second week sans Oscar, I decided to go back to The Big Whole Foods and shop–by myself, without Oscar.

I had noticed that I was regaining function in my left arm a month or so ago. Silly things like being able to dry my hair with both hands, but I had hadn’t given it much thought. I was afraid of mentioning it—afraid it was too good to be true. Being able to lift my foot, however, is something totally remarkable. I know, it’s all remarkable, but drying your hair isn’t as mind-blowing as walking although the biology is the same, no doubt.

I can’t even begin to describe what this is like. Yes, I still use a cane, but I am independent again. Now to change my mindset. I must now remind myself that I CAN DO THINGS I had lost the ability to undertake! How many more changes are in store for me?

PS Obviously the people at Hanger Orthotics where I obtained Oscar weren’t making any promises, but I did speak with someone who said they’d seen improvement in other patients—as in, they didn’t need their WalkAide as much. I understand that my remyelination, growth or repair of nerve pathways, or however we wish to conjure up what has occurred in me since we’ll never really know, was probably a combination of Oscar’s repeated stimulation to my peroneal nerve and my functional medicine MD’s strict regime of paleo and supplements. One can’t very well heal when your body is in a state of inflammation from consuming things you are allergic to, doesn’t have the building blocks it needs, or the enzymes it requires. I, however, am also regaining function in my arm, as I mentioned. We probably can’t thank Oscar for that. 🙂

4 thoughts on “regaining function

  1. Ugh Tracie, the pain and frustration and fear you must have gone through! John, my hubbie, using a FES (Functional Electronic Stimulator) which is a similar contraption to Oscar, but it sometimes causes him pain and he get very frustrated with it, so we’re unsure if it will be of much help for him.
    We’ve been Paleo since Christmas, but I’m still struggling with the fatigue. Especially as I travel and drive a lot with work. How long did it take you too feel an improvement with the fatigue?

    • I have pain in my leg/foot with Oscar if I overuse him. I definitely understand that problem. :-/ There are several different stimulation units available. One was also made by Covidien HealthCare but you had on wear a shoe with that one; there was an additional sensor in the shoe.
      It took about a year to really begin noticing big changes with fatigue. I believe that one of the challenges people like us face is something known as adrenal fatigue. It is addressed in a post by one of the top functional med MDs in the US, Dr. Mark Hyman, here:
      Jordan & Steve are also great with their info:
      This is definitely something to talk with a practitioner about as I am on adrenal support supplements, energy lipids for my mitochondria and a host of other supplements to help correct my whacked out and drained body. I know some people say, “Oh, you should get everything from food,” but it simply isn’t the case for everyone. We ended up with these conditions because we have specific genetic issues, as well. Finding out what those are and correcting them through supplements is what my functional medicine MD helps me with. I have a methylation defect which causes all sorts of havoc so I must take supplements to help correct that problem. Even though I eat strict paleo, it would NOT have solved my problems. I needed the assistance of a functional medicine MD to tailor my treatment and instruct me on what supplements to take. I have gut bugs & candida I need to get rid of (part of why I can’t deal with vinegar and fermented products), and we have been working on that since Jan 2014 with particular supps to kill off both. This is definitely a work in progress.

  2. Fascinating articles Tracie! Once again thank you for teaching me and sharing your wealth of knowledge and experience.
    It makes me realise just how little I know!! BUT learning every day and very determined to be better in mind, body and soul!

    • I’ll answer any questions, Laura. I’m so glad the information is helping; it’s all I ever really wanted to do with the information. It HAS to be useful! 🙂

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