Tight Rope, Frayed Wire & Sandy Feet

(Text linked to websites, videos, and articles I used as sources for this blog post. Feel free to click, as the link will bring up a new tab and you won’t use your place in the blog.)

Elezanumab is another humanized monoclonal antibody currently tested in phase 2 clinical trials for RMS and PMS. This antibody is directed against the membrane-bound repulsive guidance molecule A (RGMa), which promotes inflammation and inhibits CNS regeneration and remyelination mainly via the multifunctional target receptor neogenin. Anti-RGMa treatment leads to a decreased T cell proliferation, a decrease in pro-inflammatory interleukin production, a functional recovery in experimental autoimmune encephalomyelitis (EAE), and to a prolonged conversion time to the secondary progressive disease phase.

The Molecular Basis for Remyelination Failure in Multiple Sclerosis

When I was fifteen years old my best friend gave me a dare. We were hiking on an old logging trail down Cane Creek. The crisp leaves had all fallen from the trees, as fall made way for winter. The road was intersected by the babbling creek, and partially submerged stones usually functioned as our way to cross to the other side, and continue our hike. However, Dorothy pointed out a fallen tree, that looked like a perfect bridge to the other side. “I dare you to walk across,” she said. “You go first and I’ll follow behind.” I was scared out of my wits, but I never turned down one of Dorthy’s dares. I thought she was fearless, but looking back I notice that I went first, and she held tight to my shirt as we crossed.

The log couldn’t have had a circumference much more than a foot, and as two thin teenagers attempted to cross, it wobbled up and down. Below us, about five to six feet down. were flat stones, with jagged edges. I’m not sure what would have happened, had we fallen. I remember holding my breath, as I pushed forward step by step, as Dorothy tightened her grip on my shirt, I realized how scary this was. When my feet again touched the decaying leaves and mulched earth, my mother let out a sigh of relief. She confessed that she had seen us and was irate at the risk we were taking. When we made it safely across, but she was just so relieved that we had not fallen she hugged me instead of yelling at me.

A physical test to determine if you have damage to your cerebellum and your balance is called the tandem walk. This was one of the first abilities I noticed I lost. My MS specialist instructed me to step, just as my friend Dorothy had years ago, but this time the floor seemingly fell out underneath me. I was only in my early 20s, and I couldn’t put one foot in front of the other.

The tandem walk is a measure used to assess the balance of someone with MS, and damage to the cerebellum. I didn’t know that I couldn’t place one foot in front of another because of that cerebellar lesion. It was just gone. I didn’t think it would ever come back. Year after year I accepted this walk both as my failure, and the proof that something really was wrong with me. I really did have MS, and I wasn’t just imagining it. It was the proof of my invisible disease.

I wasn’t expecting to regain my balance when I volunteered to be part of a clinical trial for the 2a phase of the drug elezanumab in 2019. I didn’t know what to expect. I didn’t know if I would get anything back. Six months into the trial I was meeting with my physical therapist at my home, through the Luna physical therapy app. It was around five to six months into the trial. We were working on my balance, slowly. I had progressed from being able to hold my balance with my eyes opened, to my eyes closed, for longer and longer periods of time. I had also done this, with one foot slightly in front of the other. I would practice in the backyard, on the uneven grass.

My wonderful therapist suggested that I try the tandem walk. I remember telling her, but I can’t do the tandem walk. She said to just try. I think I stumbled that first time, because I expected to stumble as I always did. She told me to focus on my core. I found a spot on the wall. When dancing, if you want to attempt turns, you find a spot on the wall. You focus hone in on that single spot, and bring all your attention there. Then you push off with your back leg, spinning into a turn as you snap your neck to bring your gaze back to the same spot, 360 degrees later. I picked a spot and I tried again, one foot in front of the other. The floor didn’t fall out underneath me. I took a step, and another, and another.

I know I keep coming back to this tandem walk, but it is something that is amazing to me. I have felt a childlike curiosity to see all the places I can practice my tandem walk. I started to write this post earlier this afternoon after I was contemplating buying a slack line to see how far I could push this tandem walk thing. Perhaps my toes wrapping around the line would help me sense them more, and strengthen the connection. There is quite a bit of numbness in my feet, especially in my four small toes on the left side. I dry brush them with vigor and love before every shower, as if I’m trying to let them know I haven’t forgotten them, nor have I lost hope thatwill be able to communicate better in the future. Hello my toes, that I walk on all day, how are you doing? I emphatically recommend dry brushing, to still feel the places where you feel less. Its also supposed to be good for your lymphatic system. After your shower, be sure to rub and massage your feet, with lotion or oils. It feel for parts of my feet that are tender and sore, massaging them and pressing them. Often I feel different tensions other places in my body release. Our feet and toes really do so much for us, and we often forget about them, especially if they are a bit numb.

Enough about our feet, back to remyelination and time to tie this package together and ship it out to y’all. My intent with this week’s blog was to go through the quote that I posted at the beginning of the blog and the article I pulled it from. I hope you get the chance to skim through the article and look at all the wonderful remyelination trials that are taking place. I really wanted to take you through them in more depth, but cog fog was getting in the way and I needed to get something to you. I started earlier this week, writing but it just kept falling apart as I tried to follow and defined medical term after medical term. I’ll try to attempt it again, but if you need anymore information for now, just click on the blue links spread throughout this blog post.

I will leave you with another great resource, a short eight minute long video, that is a little easier to digest from world renowned MS expert, Professor Gavin Giovanni. He goes through the various trials and remyelination research that are happening right now. The last medication he is referring to is elezanumab.

I hope this gives everyone a little hope during this dark, dark times. Remyelination can seem so frustratingly far away, but at the same time, it’s really so close. I don’t know if I got the drug or if I got saline. However, I lost something, my tandem walk. I used to be in marching band. That was nothing but tandem walk after tandem walk in as straight a line as possible. I was a tap dancer. I lost that, and I’ve gotten some of it back, and well, it gives me enough courage to think about tying a slack line to to trees and seeing how far I can go. My feet still feel an inner quick sand. The feelings I lost have not come back; but that loss of feeling no longer prevents me from putting one foot in front of the other, to see how far I can go.

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