Quadriplegia (my life) For Dummies (yeah YOU).
It took me a long time to understand what it means to be a quadriplegic. Most of you cannot begin to imagine what my life is like. I’m assuming that many people would like to try to understand my condition because I am asked about it repeatedly. So, I thought I would put together an easy-to-understand piece explaining everything to you. I must just emphasize that each of us is unique and we experience our abilities – and disabilities – differently. This is from my personal perspective.
Each of us has a backbone – except, of course, if you are too weak in character, apparently. It is also called the spinal column which is a communication channel for the brain. It is made up of vertebrae, discs and a spinal cord.
Vertebrae – 33 funny-little-roundish-bones with holes in the middle which are attached to one another to make a tunnel; the last four are fused, making up the tailbone. Whether you believe in Evolution or not, it doesn’t matter. Wag it, Baby!
Discs – each vertebrae is separated by this soft cushion. Bend it, Baby!
Spinal cord – a bundle of nerve cells and fibers wrapped together like electrical-scooby-doo-wire going all the way from the brain, through the tunnel to the lower back.
The spinal cord enables your brain to communicate with your body. The brain sends and receives electrical signals via the spinal cord, every second of your life, giving instructions to your arms, legs and other body parts to keep you on the move. Come on, Baby, shock me!
When an injury to the spinal cord occurs, the flow of information from that point down is stopped. Permanent damage to the spinal cord will prevent individuals from moving, leaving them paralysed.
Paralysis is the loss of control over voluntary movement and muscles of the body. It is also the loss of sensation and reflex function below the point of injury, including autonomic activity such as breathing and other activities such as bowel and bladder control. Other symptoms such as pain or sensitivity to stimuli, muscle spasms and sexual dysfunction may develop over time. SCI patients are also prone to develop secondary medical problems such as bladder infections, lung infections and bed sores.
Disability is any restriction or lack of ability to perform an activity in a manner considered normal for a human being. But, what is normal?
I had a car accident and broke my neck at the 4th Cervical vertebra. My spinal cord was stretched, pulling many of those scooby-doo-wires apart, but not all.
At this stage, God is the only electrician who knows how to put those wires back together again – and even He is obviously struggling or He would have done it by now. Surely?
However, new research proves that spinal cord repair and regeneration is possible. But, for now it’s: We are aware of the problem. We are working on it. Please be patient
So, for now, I am a C4 quadriplegic (incomplete). People often confuse paraplegic with quadriplegic. There is a huge difference.
Paraplegia – loss of sensation and movement in the legs and in part, or all, of the trunk usually resulting from an injury to the spinal cord below the neck (thoracic or lumbar area). Basically, you are screwed!
Quadriplegia (or Tetraplegic) – total or partial paralysis in all four limbs, including the trunk, usually resulting from an injury to the spinal cord in the neck (cervical area). Basically, you are double screwed!
Complete – means total loss of function and sensation below the affected vertebrae.
Incomplete – means only partial loss of function or sensation below the affected vertebrae. I can feel you, Baby!
I use a wheelchair to get around. It is my source of freedom. It gives me independence and power. I’m most certainly not confined to it. As, after all, I’m not some evil murderer or prisoner confined to a jail cell with handcuffs. I leave those for the bedroom. Mmmm, maybe that makes me just a little evil.
I am also not wheelchair-bound because I’m not stuck to it permanently with some sort of super glue. I’m also not tied to it like some mad-rabid-woman-on-a-leash. And, I sleep in a bed – just like you do. Okay. Okay. Not only sleep. The only difference is that I have a special-egg-shell-type mattress on my double-bed to help prevent pressure sores.
Pressure Sore (or Bed Sore) – a potentially dangerous breakdown of the skin due to pressure on an area of the skin resulting in infection and tissue death. It can get really ugly, Baby!
Many quadriplegics die as a direct result of complications related to pressure sores. Scary!
I have to practice a strict routine of pressure release which is relieving pressure from the butt every 15 minutes in order to prevent pressure sores. Come on, Baby, bounce my butt!
I shower every day on a commode which is a shower-come-crapper-chair-on-wheels after my bowel program. My bowel and bladder have to be manually emptied, by my carer, every day at a specific time to encourage a habit program so that regularity can be achieved. So, basically my life is ruled by the clock. No, Baby I don’t wear nappies – I’m not incontinent.
My bladder has to be emptied intermittently, usually 4 hourly, using a female catheter which is a short, flexible, plastic tube resembling a thin straw which is placed in the urethra, extending into the bladder in order to empty the urine into a clear urinal bottle. It is important for me to see the colour of my urine for early detection of a urinary tract infection (UTI). No more moaning about leaving the seat up, Baby!
By choice, I use an indwelling, Foley catheter, at nighttime, which is a long, thin, flexible, silicon tube inserted through the urethra into the bladder and held in place with a small, fluid-filled balloon, draining continuously into a plastic urine bag on a special stand. No wetting the bed, Baby!
There are lots of other things I can’t do like coughing, blowing my nose, spitting and sneezing which puts me at risk of getting pneumonia. But, if my carer applies external pressure on my diaphragm it helps to increase the force of air in order to clear the respiratory tract. Oh, Baby, squeeze me tight!
Twice a week I am exercised, passively, by a physiotherapist while being strapped to a tilt table and elevated into a standing position. Yeah, Baby we can do it standing!
The weight-bearing and prolonged stretch is important to delay the onset of osteoporosis (loss of bone density) which is common after a spinal cord injury. She takes each of my joints through its full range of motion. These exercises are designed to maintain this range and prevent contractures and spasticity.
Although it’s embarrassing, spasticity is not always a bad thing because it acts as a warning mechanism to identify pain or problems in areas with no sensation. It also helps me spot bladder and bowel problems, maintain some circulation and work my muscles. If my foot dances, turn up the music, Baby!
I’ve learned to listen to my body. It has an amazing way of telling me things, especially, when something is not right – anything painful, uncomfortable or physically irritating. Baby, I get goosebumps, and hot and sweaty!
Jokes aside – this is serious!
Autonomic Dysreflexia (Hyperreflexia) causes the blood pressure to rise to potentially dangerous levels. And can develop suddenly. I usually get a pounding headache, a sweaty upper lip and I’m extremely restless until I have identified the problem and sorted it out. It’s most often my bladder which is too full or my bowel needs to be emptied. Sometimes, it’s as a result of pain caused by an ingrown toenail or something similar. If not treated promptly and correctly, it may lead to seizures, strokes and even death.
I also feel a constant pins-and-needles-burning-type-of-pain over most my body which I have learned to live with. Hmmm… I guess we all have our issues. Baby, I have a whole magazine stand.