Several years ago, I was teaching a lesson in my Sunday School class. After class, one of my ladies came to me and said, “I think you can move more than you think.” I said, “Really?! What makes you think that?” She said, “Because when you were teaching, your toes were moving.” I laughed and said, “Yeah, you ought to see my legs move at times!” I tried to explain…as I have had too many times – that I have no control over my movements at times. The whole conversation really embarrassed me as it was the first time anyone had seen my spasms.
That lady was totally clueless about spasms. Her understanding, like SO many people, is that if they see something on you moving – that is supposed to be paralyzed – that you are either 1) Lying, 2) Not trying hard enough or 3) You have been healed! All three are wrong. They don’t have a clue about spasms!
Spasms are movements that we do NOT have control over. Toes jumping, legs sticking straight out, our backs bowing and throwing us, our hands or arms shaking, or our whole bodies violently throwing us around – are all out of our control. We learn how to manage spasms, but we cannot get rid of them, nor do we have control over them. At times, we can trigger our spasms to help us transfer, put our clothes on easier, keep our muscles from atrophying completely away and other things that we learn along the way to help us along the way. I can bow my back and trigger a spasm (like you will see in the video) and I am in control of causing…or triggering…that spasm. But, I am in zero control of my legs. Spasms are extremely strong at times or barely noticeable. At times they are painful, embarrassing and can make life quite miserable. It all depends on a lot of various things. Spasms have always blown my mind. How can parts of my body not do anything I command them to do, and at other times my body does what I do NOT want it to do? That is the mystery of spasms.
This video gets very raw for me! I have never shown so many of my spasms in public. In this video, I am still in bed in my jammies, have a bed head, look awful, don’t feel great, and my body is fighting me. But….if this helps you to learn and not say something stupid or embarrassing to someone with a spinal cord injury, then it will have served its purpose.
Thank you for caring and sharing!!
Video 1 – Incomplete or Complete?
Video 2 – Nerve Pain!
Video 3 – Muscle Atrophy
Video 4 – Temperature Control
6 thoughts on “Spinal Cord Injury ~ What Are Spasms?”
I am finding your videos so helpful in explaining the everyday things that I had not properly understood… My husband now understands why my feet are like ice blocks in bed!!!! Thanks once again…
Alicia can you tell me is the nerve pain also worse when wanting the toilet or if you have a UTI?? Thanks
Yes, it can be. For sure when I have a UTI. When my bladder is full, I get more of a headache and will start sweating and goose bumps. It is more of an autonomic dysteflexia response than nerve pain.
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Alicia- Remember me as Tetracyclone on Apparelyzed.com Miss yo, dear, but glad you have moved on to so many positive and excellent contributions.You may wish to promote this petition about durable medical equipment funding as it applies to chairs, cushions, backs- all the stuff that must be custom fit for many SCId people. https://petitions.whitehouse.gov//petition/stop-medicare-making-inappropriate-cuts-complex-wheelchair-accessories
Hey!!! Yes, I remember you! I miss being over there but I only have so much online time! Those early days gave me LOTS of online time as I was in bed so much. But…life moves on right?
I am so glad that you found me! Keep in touch!
I have signed that petition and I will be promoting it! Thank you for sharing it with me.