link to podcast version: https://www.msaliveintoit.com/podcast/episode/321c9a2d/how-physio-helped-me-with-balance
At some point in our lives, we have been directed to the physiotherapist, to help with rehabilitating a part of our body. If you are like me it has either seemed to be (a) totally obvious, so why attend, (b) very painful and time-consuming, I have work to do!, or (c) a miraculous cure over the weekend - thank you baby Jesus!
With the clinical diagnosis of MSA-C, I have had to learn to shelve all that nonsense and actually pay attention. The alternative would be to become a couch potato that whines about how I can’t seem to do anything. Now, that’s my inside voice speaking and it may not be yours, and if it isn’t maybe take a moment to listen to your inside voice and what it is telling you about how you do move and how you want to move.
Three nights ago as I was writing in my anger journal — we all have one of those, right? — I surfaced on a concept regarding our responses to attitude, movement, and the disease. And I starting to think that this ratio can apply to the time we spend or the energy we spend on stuff in our lives, like MSA. I am not talking about quantum physics, so breathe easy and step out of the Enterprise’s warp drive.
Our attitude, our motion, and our disease can only occupy so much space in our lives. For this discussion, let’s say 100%. I figure that for success in battling these neurological diseases we need only to expend about 10% of our energy or time on the disease itself. Like thinking about appointments and going to them. Talking about the disease. Taking medications.
As my movement neurologist said to me two months ago, medically there really is no procedure or medication for MSA-C. Yes, there are for some of the symptoms, but once those have been addressed, what’s left? Nada. Unfortunately, since childhood, we don’t like to take "no" or "nothing" for an answer. I found myself fretting over trying to find medical responses to what-if scenarios. My 10% time and energy grew like mold in a wet spot until it was more like 30% and that was creating anxiety, depression, and physical pain that was not even related to MSA.
I had lost sight of my MSA - Live into It mantra. Living into it means accepting what is and moving on. In this case - literally, MOVE.
I believe that through the awesome support of my (now) two physiotherapists, I have kept moving well beyond the average patient. They even kindly acknowledged that reality. I started last January with daily independent physio workout routines provided to me by my PT who I see once a month. That’s right — only once a month. The work is my work and it is on my shoulders to carry that responsibility. I go to a regular gym five days a week and in each session, there is 30-45 minutes of PT work. I don’t think you need to be Micheal J. Fox and have a personal trainer to do this. You need the Nike swoosh - Just Do It.
In the past eight months, I have not fallen. I have had some real near misses, but the PT has saved me every time by igniting the learned muscle responses to being even minutely off balance or out of coordination. I can’t rely on either my vestibular system or my visual system to trigger a corrective response quickly enough, but my thigh, calf, foot, and hip muscles now sense the off-balance pressure or strain and can tell whatever off-balance part of my brain that is still listening to hurry up and respond.
Moving takes up 30% of my 100%, so that leaves 60%. I think the largest amount of our time and energy should be focussing on our attitude. In this area, we have a negative or a positive attitude or in other words, a +60% or a -60%. Let’s talk about the negative first.
If you have a negative attitude to this whole neurodegenerative disease thing then that -60 is going to cancel out the other 40 of move and medical and actually leave you in a deficit of -20% which I might label as the deep hole of depression. You don’t want to move. You don’t feel like moving, except to get the Ativan. Even if you only had -40% attitude energy and time, it would still deeply impact your movement efforts, taint your medical efforts and time, and undermine the 20% positive attitude making it seem like tokenism. You know what I am talking about… when people ask you, “How you doing?” and you lie with a forced smile and say, “Oh, fine.”
If we can make as our goal "60% positive attitude" part of our energy and time ratio then we have some room to let a little bad attitude in on some days, without totally annihilating our move and medical goals. We can still do the PT so that it produces some results. We can still manage rationally our medical side without flipping out about why some medication is not doing what it is supposed to be doing that day.
So, how do we fuel that +60%? I think we do this by getting outside and deeply listening and observing and saying a little gratitude to ourselves for being kind to ourselves and giving ourselves the gift of time to listen and observe. I think it is looking for a recipe for something you love and plan out making that dish. I was recently reminded of the power of this simple act when I was fortunate to have been given fresh huckleberries, with which I made huckleberry cream cheese pie. That was like four days of self-kindness!
We do it when we don’t talk about our situation, our medications, or our challenges and just tell a friend a funny or meaningful story and share some laughs or tears.
I fill it with some time watching an episode of Ted Lasso (apple TV). I say a quiet thanks for introducing me to my disease nemesis life coach Roy Kent — “Ahhh f^$#&&*@k”. I say this phase after something negative happens, then laugh and thank Roy for his personification of the antithesis of positive that is often a part of this disease.
I wave at a little kid while I am riding my AZUB trike. Their tiny wave back brings me happiness. And, I hug and thank people a lot. Even more than they deserve at times because who knows, maybe they are running a bit in the deficit today.
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