20230729 : use it or lose it

Disclaimer: every stroke is different (even if they are called the same name). The impact to someone physical / mental is even more different for everyone. What I have said here is my case, my stroke, my experience and my thoughts. Don't generalise it and compare.

However, it might be similar (not same) that many might be experiencing.so, hoping it will help...

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It is a phrase I have have heard from many in the last few years after my stroke - by doctors, physiotherapists, SLP therapists, family/ friends/ well-wishers everyone.

"Use it or lose it" - generally applicable to every function of the body, but more specifically for this context, it is the muscular action getting atrophied/ wasted and lost if we don't keep making the movement. Basically the brain  eventually loses/forgets the connections of neurones firing because of prolonged absence in doing so. 

It is not like I have not heard of it earlier, but like everything else, it's message failed to hit the mark till it mattered.

It's also not like it is not applicable in normal times for everyone - our general health and shape screams out everyday to us telling us the same - to be ignored most of the time by most of us.

However (with due respect to everyone who has said it) - "if you have lost it to start with, how do you use it"? If the brain has lost the neuron connections and the muscles have already atrophied, how do you move it?

As I said, absolutely no offence to anybody who has said it - it is their job to do it as part of the therapy or being encouraging and pushing me to it.

The truth (and the absolute truth) is that there is absolutely no way anybody who has been able-bodied all their lives - will be able to understand what it feels like (to not feel a body part, and try to move it). Different people can have various degrees of understanding of the science/ medical details and different levels of empathy as well, but it is still theoretical understanding and not understanding by experience.

When I am lying in bed, I can see my right hand and right leg with my eyes but I cannot see it with my brain. 

When I just had my stroke, that was the experience for the entire body. I was only able to see (the ceiling mostly - as I couldn't lift the neck/ head to look down at my body when lying down). I could see what I was shown and only thoughts.

Slowly the feeling/ sensation came back in my fingers of my left hand and nothing else. After that - "use it or lose it" applied. I would lose the brain connection/ muscle function if I didn't keep moving it.

 

I didn't do anything to get it back either - it just woke up when it had to. Before that, "keep trying", "keep imagining", "keep visualising", etc, etc made no sense to me. When I was asked to do something, the automatic reaction in my mind was "what are you talking about? I don't have that body part". Same applies to every body part and function I have been able to do since. 

Which is why I have said earlier, rehabilitation is a lot of patience and effort afterwards. Initially, when the sensation hasn't woken up yet, it takes a lot of patience to wait for it to wake up - I am not suggesting a timeframe. It could be days, weeks, months and years many times, but have to be patient and wait for the feeling/ sensation. After that, it is effort, pure and enormous effort to keep doing the movement to strengthen the brain connection (the muscle will automatically happen). "Use it or lose it" will kick in.. 

The only way I can describe the feeling/ experience initially is as follows (with a experiment):

Stand up and close your eyes. Do you have your hands? No amount of my telling you no "you don't have your hands"  will work, because you don't need your eyes to see your hands from your brains. It just feels it.

Now, Lift them to the side. Do you know where they are? Of course you do. Even though you can't see it, your brain can see it and also has a spatial understanding of it .

Now , supposing I ask you to lift one hand, your next question will be which one, left or right.

Neither of them, you have a 3rd hand , just in front of your right hand, You just can't see it or feel it. But keep trying, keep thinking, keep visualising and I assure you you can do it eventually...