7 Things You Don't Know About My Paralysis
Updated: Mar 8, 2021
You might see me sitting in my wheelchair and assume everything is well put together and simple. However, many changes happen to the body after paralysis with numerous things to consider on a daily basis – or even multiple times throughout the day. When it comes to my life and my experience, here are the top seven things most able-bodied individuals don’t really know:
Also known as AD or just dysreflexia, it’s basically a warning system, where the body is saying something is wrong. It mostly happens to individuals with a higher level spinal cord injury (SCI). There is the technical, physiological way to describe this, but I’ll break it down like this –
If any of the following things happen…
bladder issues such as an infection, stones, or needing to urinate; bowel issues such as constipation, hemorrhoids, or infection; wrinkled or tight clothing; any pain like ingrown toenail, pressure sore, something pushing or poking the body; sitting crooked; other skin irritations like burns or cuts, etc.
… then the body may react by…
light to extreme sweating, blotchy or reddened skin, increased spasticity, high or low blood pressure, pounding headaches, fast or slow heart rate, goosebumps or chills, trouble breathing, confusion, anxiety, nausea, or even a stuffy nose.
I’ve experienced dysreflexia for the 19 years I’ve been paralyzed in many different ways and sometimes on a daily basis.
I get sweaty when I have wrinkles in my jeans that pinch my skin. I also get sweaty when my hips/knees are out of alignment (thank God for a chiropractor). When my toes are curled in my shoes, I will always sweat and someone has to check my feet; if you see me shoeless, that's why! One time I was constantly sweaty for a couple days until someone noticed I had a large blister on the bottom of my foot. The dysreflexia was telling me something was wrong; it just took a few days to find out what it was. If my hips are crooked in my chair or in bed, I will get sweaty and my heart will race. If my bladder is too full, my blood pressure rises and my skin gets blotchy.
And ultimately, when this happens, it is imperative to find the trigger/cause because it could eventually lead to a stroke, if it is severe enough. If we did not get the AD episodes, our bodies would go on with these problems to the point that something could cause a pressure sore, pressure sores could get worse, or we could go a long time without knowing that there are major problems with our bodies that could be life-threatening. Isn’t God’s design simply amazing?!
If you see my body move from the waist down, including my belly shaking, legs jerking up, or my legs kicking out, you are witnessing involuntary muscle spasticity. Some SCIs have very little or no spasticity, while others have it so severely that it looks like their body is convulsing. My spasticity is right in the middle of the two.
To remedy spasticity, it is common to use different prescriptions including muscle relaxers or even Botox, a natural supplement like magnesium, or even implanting a pump inside the body to take the medicine, Baclofen, to be released in the spinal cord. I’ve been on high doses of muscle relaxers every day for almost my entire paralysis and am looking forward to a pump within the next couple weeks. The prescriptions have helped with my spasticity, although not as much as I need. They also make me extremely drowsy, and I feel like they make me mentally slower. With the pump, the medicine will go directly into my spinal cord, so I will not have those negative side effects.
Sometimes I like the spasticity because it moves my body around, which is nice since I cannot move independently. At times, it feels like a good stretch, especially at night when I just lie flat on my back in bed. Also, I sometimes wonder if it has helped with muscle tone. Muscles atrophy when they are not moved or exercised. Since I have had so much spasticity, my muscles have possibly maintained some of that tone. However, spasticity is often very inconvenient and has more jerking, uncomfortable movements. My legs will spasm so bad that they kick out and my butt slouches out of my chair some; then I need to be repositioned. Not only that, but my two-year-old border collie, Fritz, sleeps with me at night; when my legs spasm and bump him, he doesn’t like it and will hop off my bed to go sleep somewhere else. My poor boy.
Bladder and Bowel
In my experience, dealing with the bladder and bowel care is the most humbling, embarrassing, and irritating aspect of a spinal cord injury. It is also one of the biggest concerns of paralysis. We have to maintain healthy bladder and bowels or it creates extra worry and anxiety with even more health concerns. There could be a decent sized dictionary explaining all the aspects of bladder/bowel care, products to use, complications/problems, and surgical options available to help make this aspect of life less complicated or to fix problems. In short, most people use catheters to drain the bladder with varying options (a few include superpubic, indwelling catheter, or Mitrofanoff [me, personally]). Most people try to maintain a bowel program to keep things moving regularly ;). Let’s move on…
Some quadriplegics have no movement in their arms or hands at all. Others have some movement down to their wrist and fingers. You may see some quad hands that just have curled fingers. For me, I have the muscle that turns the wrists palm up, but not the muscle that turns them palm down, so my hands are constantly turned up. Although it is one of the main things that kids stare at and it’s definitely not one of my favorite aspects of my body, I’m thankful to have the movement I do have because I can use my cell phone independently, use my power chair's joystick, and slightly pull myself forward in my chair. And that is much more movement than many other quads have.
Your abdominal muscles hold your organs inside together nicely. Some SCIs may have a little bit (or a lot at bit) of a pooch when those muscles don’t hold it all in together anymore. Don’t stare. Don’t ask. Just let the belly be. My beloved low-rise jeans days may be over now since I found that my high-rise jeans tuck it all in nicely.
Paralysis Means Paralysis
The level of paralysis – the ability to move muscles or feel the body – is different, yet sometimes similar, for each person with an SCI. Some spinal cord injuries are complete, while others are incomplete. If it is complete, then there is usually no function or feeling below that spinal cord injury level. If incomplete, there could be some muscle movement or feeling below the injury level.
My injury was at C4 C5 and I am complete. I cannot feel anything below my upper chest or mid-arm. Although it looks like I can move my arms, I don’t have any muscles below my upper back and biceps. Any other movement is due to involuntary spasms.
Finally, one thing most people don’t realize is that skincare is a MAJOR concern. If the body is sitting all day, the weight is being pushed on your bones. If you don’t have something to cushion that, a pressure sore is bound to happen. Similarly, if there is any pressure or friction, a sore could happen anywhere on the body.
I’ve had three main sores. Within the first year of paralysis (2002-2003), I had a pressure sore on the ischium, the bony part of your butt when you sit. The sore was so bad that I had surgery to close the wound. It opened within a year, and I had to go through it all again. Each experience meant six weeks in the hospital for surgery and bed rest, a PICC line of antibiotics, and a lot of time watching TV. I hated the experience so much that I never sit on anything other than my Roho cushion that is properly inflated. If I transfer to the seat of a car or when I travel on an airplane, the cushion will always be under my butt.
The third sore was a few inches down from my armpit on my right side. It developed after I got a new backrest for my wheelchair. This sore started as a red mark and within just a couple days it was a deep, dark sore that almost went to my rib bone. I had to see a sore specialist weekly. Then at home, someone routinely changed the dressings after medicating the wound with special creams and gauze. The only thing that will heal a sore is time, good nutrition, constant care, and no other pressure. It can take less than 30 minutes to get a sore started and can take months or years to heal.
It took YEARS for me to learn how to manage all of these aspects well and many more years to be completely comfortable and accepting of it all. And that's why there are two more important things to consider–
#1 We are all given the bodies that we have. We can change some things and other things we cannot help. Life is about doing the best we can with the circumstances we are given.
#2 It’s safe to say that we don’t really know what other people deal with in their own personal lives. Whether you are paralyzed or able-bodied, most people try to present themselves as well put together. It’s just human nature. But, the take away is that everyone has something going on behind the scenes.
That’s why it’s important to just be considerate and encouraging. As Dr. Maya Angelou has described, You never know when you might be a rainbow in someone else’s cloudy day.