Site icon Alicia Reagan

The Many Faces of Paralysis


Today we are talking specifically about paralysis, and those people who use a wheelchair full-time as their only way to get from point A to point B. I am not talking about great-grandma and her bunyons and why she loves those electric carts at Wal-Mart.

There are SO many misconceptions about paralysis. That is okay, because I thought the same way before I became paralyzed. I remind myself of this often and give patience as I give understanding. My previous definition of paralysis: The paralyzed person cannot feel or move their legs. That sounds pretty good doesn’t it? Now stick with me as I tell you the real story. There is not one single paralyzed person that is the same. That is the truth. We are like snowflakes. Two people can both be paraplegics, and have completely different ways that paralysis affects them.

Our nerves control muscle movement, they can feel pain, temperature changes (hot or cold), and they can feel vibration. If you have ever had a neurological examination, they pricked you with a pin, put a metal object to you and asked you if it was hot or cold, and they would make this metal thing vibrate and hold it up to you and ask you if you could feel the vibrations. They would also ask you to move this or that to check your muscle strength and movement. This is because they are checking all the facets of your nervous system.

Paralysis is caused by a disruption in the signal from your brain to your body parts. Brain damage (like cerebral palsy, a brain injury or a stroke) can cause paralysis. Spinal cord damage (Spinal Bifida, Transverse Myelitis, broken back or neck) can also cause paralysis. These things all disrupt the signals that the brain is trying to send. The signal goes out, but it cannot complete its journey as the damaged area of the spinal cord disrupts that signal (like a bridge that is out on a highway).

This is where it all gets tricky. Depending on where the spinal cord is damaged, and how damaged it is, determine how your paralysis will affect you, and how you will be classified. If just your legs are affected, you are considered a paraplegic. If all 4 limbs (legs and arms) are affected, you are considered a quadriplegic.

The higher up your spine the damage occurs, the higher level of paralysis you will have. The spinal cord is divided into 3 levels – around the neck is the “C” (cervical) level, from shoulders to waist is the “T” (thoracic) level, and from about waist down is the “L” (lumbar) level. Each vertebrae within that level is numbered. For example, Christopher Reeve (Superman) broke his neck at the highest level and was classified as a C1 (cervical level, first vertebrae) quadriplegic. He had no use of any of his muscles from his neck down, used a ventilator to help him breathe, and had to drive his power chair with mouth device called a sip and puff.

There is also a difference in your classification whether you are considered a “complete” or “incomplete”. If you were stabbed in the back, and someone completely cut your spinal cord in two where it was not connected at any point, then you are a complete. A car accident can do that, or someone who has been shot (or stabbed). Also, if your spinal cord is still connected, but you have no movement or sensation at all below your injury, then you are considered a complete. My spinal cord was damaged because of inflammation that surrounded my spinal cord and damaged it. It is still connected, but the nerves were killed. I am considered an incomplete because I do have some movement below my level of injury.

Within these classifications, however, there is still a very broad spectrum. I have a couple friends who are also C5-C7 quadriplegics, but our abilities are different. There are quadriplegics who cannot use their hands, but are able to take steps. There are paraplegics who have enough muscle strength in their legs to walk with forearm crutches. I knew a quadriplegic who was injured in World War 2 that was paralyzed from his neck down. He could not move a muscle, but he had full sensation. He knew exactly where you would touch him. There are others that can move some muscles but have no sensation and don’t have a clue that their feet are even on the floor.

Although we are paralyzed, many of us deal with pain and spasms on a daily basis. Because are nerves have been damaged, we deal with a lot of raw nerve pain. That can feel like burning, painful pins and needles, sharp stabbing, electric shocks, a tight banding around us, and a multitude of other manifestations. Some of this pain can stay constant and other times it is brought on by other things like a urinary tract infection, needing to use the restroom, someone touching your leg, or a bumpy surface we are rolling on.

Spasms are a different story as that is our legs or arms jumping and moving uncontrollably. That is the paradox of paralysis – our body will not move when we want it too, unless you have spasms and then it will move when you do not want it too! Some people have spasms so severely that it throws their bodies out of the wheelchairs. Your legs will jump, or stiffen and shake depending on different things. There are medications to help calm these muscles down, but some of us feel that the spasms are worth the aggravation they cause us. They stretch your legs and work muscles that would otherwise atrophy away to nothing.

My spasms are positional, meaning that I don’t spasm much unless I get in certain positions, or go over bumpy surfaces. I know those positions and try to avoid them in public. However, there I days I am just “jumpy”. I don’t know why unless it is weather, tiredness or stress related. On those days, the phone can ring and my legs will jump around. Here is a video of my spasms, and my range of motion exercises that I do every day.

My official classification is C5-C7 (cervical, 5th – 7th vertebrae) incomplete. I have no sensation from my upper ribs down. I can also wiggle a couple toes on a good day.

What you need to know from all of this?

It takes a lot of muscles working, from abs, glutes, hips, thighs, hamstrings, calf, feet, etc., to stand and walk. A paralyzed person may have from none to some of these muscles working. Do not think that if you see a paraplegic and they move their foot, that they are a fake. They are not. If you see their legs move, don’t assume they did it and they have been miraculously healed. It was probably a spasm from rolling over that lip in the doorway. And if you see someone massaging their leg and you think that is silly since they can’t feel it, be understanding. There is probably an invisible dog named nerve pain that is tearing a hunk off of their leg and he has not let go for over an hour.


“Do You Want To Know About Disability” Series:

All For One and One For All

What Do You Say To & How Do You Help A Newly Paralyzed Person

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