Several years ago, I had a new friend and she had an adorable little girl who was trying to wrap her mind around my paralysis. She touched my leg and said, “So you can’t feel that?” I said, “No.” Then she rared back and kicked my leg – very hard!! And then she said, “Well, could you feel that?!!” Horrified, her mother scolded her for kicking me and informed her that I most certainly could bleed and get hurt. I just started laughing because in the mind of that little child – if I couldn’t feel something lightly touching my leg, than surely I could feel a big kick! She was disappointed as I told her I could not feel that kick either!
Apart from little children, I do get asked quite often exactly what I feel and do not feel, and what I can or cannot move. Since the general consensus seems to be “oh…you are paralyzed and therefore you don’t feel or move anything” is incorrect, I thought it would be fun to educate a little!
NO TWO SPINAL CORD INJURIES ARE ALIKE
One thing we must get straight, and has been mentioned in other posts on this site, is that spinal cord injuries are like snowflakes – there are no two that are just alike. What I am going to tell you describes me, but that doesn’t mean another person with a spinal cord injury will present with sensation and movement like mine.
UNDERSTANDING NERVES IN THE SPINAL CORD
I want to clear up something. It is incorrect to say that we have no feeling or movement. We are much more neurologically complicated than that. There are sensory nerves (that control sensations such as touch, pressure, pain and temperature) and there are motor nerves (that send the signals to move to different areas of your body depending on where they are located on the spinal cord). When the spinal cord is injured it affects both the sensory nerves and the motor nerves. But how much is affected? Why can someone move a toe but nothing else? Why can they feel vibrations but not a pin prick? Why can they feel deep pressure but not light touch?
MOTOR VS. SENSORY NERVES
Since the sensory nerves control so much varied sensations, a person with a spinal cord injury can have a variety of “feelings”. Also, when a spinal cord has been damaged, the nerves get very confused and they do not carry the appropriate signals back to the brain. So, at times, if someone taps my leg and says, “Can you feel that?” I cannot feel the tapping of their finger on my leg, but 9 times out of 10, I will feel a sudden electric shock down my opposite leg. My confused nerves have the wrong leg (called reciprocal pain), and it has interpreted a light touch as a bolt of lightning. Others may feel different as all of our nerves interpret with their own language.
The question “what can you move” is valid, but a word should be added. The question should be, “What can you move voluntarily?” If you could see my legs move at times, I would never be able to convince you that I am paralyzed. When my legs decide to move involuntarily, and on days of my worst spasms, my legs jump and thrash and kick wildly. My body stiffens up so tight and my legs will cross and my strong hubby cannot get them to bend no matter how hard he tries. Y’all…I have some powerful leg muscles!! But they are not in my control at all. They do their own thing and I watch them, totally disconnected, except for the pain they are causing me in that moment. It is very surreal to me – to see all the power that is had in the times of spasm and still not be able to connect it to my brain for voluntary movement. So, what can I voluntarily move?
My injury is high (C5-C7), but I am an incomplete injury which has left me with an unusual body (most incomplete injuries have weird nerve interpretations). If I was a complete, I would have very little use of my entire arms. However, I am not a complete. The difference in my sensory and motor nerves are varied all over my body.
If you look at this chart, you can see what areas a C5 level injury would affect. It would affect that level and everything below it.
However, if you look at this image, you can see how simplified the above photo is. This photo is all the sensory and motor nerves that are within that same level.
I think you can see now why spinal cord injuries (as most are incomplete) present as unique as snowflakes.
- What signals get through to which nerves?
- Which nerves are they – motor or sensory?
- Does the signal go through as supposed to or does it get a scrambled message and do what it wants?
- Does it then create normal sensation and voluntary movement? Or abnormal sensation and involuntary movement?
For me, I have better motor nerves in my arms and hands than I do sensory nerves. On my right arm, I cannot feel pin prick or light touch and I have decreased sensation for hot or cold. On my left arm, I can feel light touch but not pin prick. On my chest, I do not feel pin prick or light touch but can feel deep pressure. I lose all sensation from my chest down with the exception that I remember feeling some vibration in my legs when I was in therapy and they used high levels of electrical stimulation on my legs. I can also feel a little deep pressure on the tops of my feet when Elisha jumps on them. It doesn’t hurt at all, but I can usually tell he is on them. Other than that, my sensory nerves are pretty shot.
My motor nerves are better though in my upper body. I have good movement in my arms and hands, although they tire and get very heavy and burn horribly if used too long. There is not a time that has went by when I play the guitar or piano that my arms do not feel like someone has been sanding them with sandpaper. The longer I play, the worse I will play as my fingers will no longer go where I tell them. I cheat on many chords because my left pinky will not do much against resistant. There are weird moves I just know not to do or have learned to compensate. If I bend my wrist, it makes the grip in my fingers tighter and they work better. If my hand is facing down and I am trying to pick up or grab something, it is very difficult for me to do without bending my wrist to compensate. I have learned to grab and flip my hand over quickly to keep from dropping things. However, dropping things is a norm for me too. 🙂 These are really very minor in light of how it could be, however, I do feel these deficits daily.
The muscles in my back and stomach are very weak and I can have days where they feel like they are firing better, which makes all my transfers, rolling over in bed, getting dressed, toileting…much easier! And then there are days where they are just not having it. I need more help on these days and these are the days Jimmy helps dress me and gets me in and out of my chair. Typically, at the end of big days, Jimmy always has to help me undress and get me into bed. I welcome that help!!
From my upper ribs down, I pretty much have no voluntary motor nerves…with the exception of a big toe that I can get to move a couple of times on a good day . Don’t know where that nerve comes from!
This diagram shows where my sensory nerves (in blue) and motor nerves (in pink) are gone. However, if all my friends with the same exact level marked their motor and sensory, it would look different from this.
MUSCULAR AND NEUROLOGICAL PAIN
Apart from what is normal sensation or movement, there are many of us who suffer with chronic muscular and neurological pain. The muscular is from overuse of the muscles that DO work and we overcompensate with them for so many that don’t work. The neurological pain has to do with those confused nerves that fire and shoot and stay confused. Many of those signals get sent as pain. This can change based on our time spent in one position too long (either in our wheelchairs all day, or in our beds all night), the weather, stress, illness, fatigue, spasms and spasticity. A positive is that neurological pain can let us know that something is wrong in our bodies that we cannot feel normally. For example, if something is “off” my legs start spasming and won’t calm down and electricity starts shooting up and down my legs. I know to investigate for something wrong – a tight shoe, a wrinkle in my clothes, a full bladder…or other things. I always feel like I am sitting on sharp gravel, but the longer I sit in one place, that sensation turns into shards of glass and I become extremely uncomfortable and quite miserable. Although I HATE that pain, I am thankful that it reminds me to do pressure reliefs and to reposition myself so that I won’t get pressure sores. My spasms and spasticity has increased the last two years, and I am trying to learn ways to trigger them so that they can help me with other functions. For example, if Jimmy lifts me straight up out of my chair quickly, my legs will stiffen and can hold my body weight for a few seconds. That takes some of the load off of him while he can reposition. However, it is completely unpredictable how long that lasts and when they give in, I collapse so it isn’t dependable. I would love to learn how to make that a little more dependable. I am hoping PT could help me with that.
There are times though, that you cannot find an explanation for your pain and you just have to deal with it.
I hope that you have learned that people with spinal cord injuries:
- Can feel things in their bodies. It just isn’t what you normally feel.
- May have movement in their bodies. It doesn’t mean it is voluntary!
- Some parts of the body can have sensation or movement that is somewhat normal and voluntary, but still not be able to feel or move other things as incomplete injuries have confusing nerve impulses.
- Neurological pain can still be felt in areas where there is no sensory nerve signals.
If you have any more questions or comments, please share with me!