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Words by Julie - Living Life With Paralysis

Trying not to lose my shit 2

I posted this picture the other day, and it generated a bit of discussion. When I sent it to my parents my Mom said “I need some explanation, it looks like you are standing with a walker!” My response was “that is because I AM standing with a walker!” I was tongue in cheek when I said that, but that’s because I wanted it to seem simpler than it is. That look on my face is somewhere between a smile and a grimace.

 For context, this is at Glassier’s Physiotherapy clinic in Wingham where I do physio for an hour twice a week with Bill (in front) and Mark (behind). My friend Shannon took this picture; we used to work together but now we are physio buddies. It has only been in the last two or so weeks that I have been using a walker to stand, but we have been doing a lot to work up to this.

What you can’t see behind me is the physio bed. I sit on the end of the bed and place my feet on the floor. Bill raises the bed and I scooch my bum to the edge, I hold on and Bill blocks my knees with his hands. We have been practicing this part for a while, I rock side to side a bit, testing my core. As the bed gets higher and I am more or less just leaning on it I let go of the bed and put my hands on the walker. Sometimes I need a bit of help, but other times I can just push my hips forward and get off the bed completely. Bill is still holding my knees (preventing them from buckling) and I hold most of my weight with my arms. In fact I am not really sure how much of my weight is in my arms vs. my legs because I can’t feel it. I know there is some load going to my feet, just not sure how much. Today when we did this I lifted myself right off the floor and as I held myself there my toes pointed just like those of a ballerina. It was funny at the time, and eventually I settled onto flat feet.

Those pointed toes were the product of a great deal of spasticity that I have been dealing with these last few days. What is spasticity? Imagine that you clench every muscle at once in both of your legs at the same time. Now, without releasing those muscles, try to move your legs. Pretty tough. And with me, it happens as I change positions – from sitting to laying down (or standing up) is the worse – the muscles spasm right up to my chest and my lungs even feel it. It gets worse if I sit for too long, and guess what? I sit all the time. I think I have had increased spasticity lately because of medication changes. Hopefully when those changes have settled, so will my spasticity.

Now, as for the fashion statement I am making in this photo, I do not go out like this in public (well, not outside of physio). What you see is called an abdominal binder. Basically it is a girdle made of wide bands of elastic that truss me up with Velcro. I know, attractive, and now you all want one. Well this is where I get a bit crusty. Lots of people have said to me “oh, I need one of those”. Others, while I explain that I need it because I have no working abdominal wall (while I pull in my stomach with my hands), say “oh, I don’t have an abdominal wall either”. Ha, ha.

It takes a lot for me to not lose my shit on them. I actually have NO abdominal wall. Remember? It’s paralyzed? That means it does not work. Not just an abdomen that opted to not do a sit-up in the last decade. Muscles. Don’t. Contract. Without. Nervous. Stimulation. [This is me trying to contract my abs while I sit and type this.] There is more happening in my abs compared to a year ago, but I can only make my abs move if I do it while holding my breath.

So instead of thinking “I need one of those attractive pieces of elastic to hold in my gut” – go do some sit ups, or planks, or crunches, or pushups, or one of those crazy viral facebook workout videos. Do it because you can.

2 comments

  • Ernest Dow says:

    A*M*A*Z*I*N*G!!!! Go, Julie!
    Doing what you can with what you've got…
    which is more than a lot of the rest of us! :-/
    Thanks for the very apt exhortation.

  • Well done! Seriously every little step, pun intended, counts on the road to recovery and needs to be celebrated. That look on your face is definitely a classic smile, but it's brilliant. There’s nothing wrong with your fashion statement, wear it with pride. We all have our own lives to live and fashion doesn't need to get in the way.

    Emmett Fletcher @ CKPhysio

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