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.
Tracy Todd – Brave Lotus Flower 
What’s up, its pleasant paragraph concerning media print,
we all understand media is a fantastic source of data.
Hi Tracy. I’m also a quadriplegic, C2/C3/C4 complete. This blog is a perfect representation of our lives, UTIs and all! I will definitely refer others to this blog that have questions. Great job!
What causes the severe body burning?? My daughter is a quadriplegic and her burning is severe. Any suggestions?
What causes the severe body burning?? My daughter is a quadriplegic and her burning is severe. Any suggestions?
Thank you this was very helpful. My mum is confined to bed with end stage dementia and is dependent on staff and me to notice and interpret her warning signs. I take her temperature every day in case she gets bladder infection, gastro.or flu. Wendy – Australia You are doing well with what you’ve been dealt. Thank you for sharing.
U told it so well & the addition of humour …Baby.. helps me understand my friends issues who is paraplegic… Thank U
Love your article. I’m an LPN and care for an awesome guy with a c3-c4 incomplete injury as well. His injury happened over 19 years ago and he continues to baffle Drs. Do you know of any online support groups or chatrooms he can possibly join. Sometimes I know he feels so alone!!!
A friend signed me up for wheellove.com which is by two gals married to paraplegic men. They will chat back with you. Nice people, good advice. Great blog.
Well, I wrote on this blog a year ago and I was bedridden because of having my urethra damaged by a negligent nurse. Bedridden an entire year until June of this year when I had to have a Bladder Neck Closure to stop the urinary leakage where I all but lost my urethra and had to resort to a “Suprapubic” catheter (that goes into my bladder through my tummy below my belly button) after 37 1/2 years with a Foley catheter going right into my bladder through my urethra just fine.
Last year, after my family abandoned me and I went out on my own to live with a live-in caregiver I began to have severe swelling of my feet, toes and ankles and practically all of my lower extremities. The last time I had this was in 1998 not long (a couple years) after marrying my husband and the problem was too much sodium intake. That is not the problem now and the only I can get them to go down is staying in bed and have them at the same level as my heart… in other words with my head elevated only about 20%. My power wheelchairs tilt back and my feet elevate but this does not help. My doctors think it is only gravity and that is all I can come up with as well. Compression stockings (even the gradient ones that are really tight) to not help at all.
Having been diagnosed with posttraumatic syringomyelia in 1994 that has been more disabling than the quadriplegia itself. chronic back pain from my lower neck down my spine and under my right shoulder blade. Posttraumatic syringomyelia still happens to about 3% or 4% of the quadriplegic population.
I am still recuperating from my Bladder Neck Closure & switching to a suprapubic catheter and I wish I had never met or seen that nurse who stole the last year and a full of my life. I am still bitter that my family would now consider to “share the care” like they did for 3 years after my husband’s passing. When my grandparents were alive (my grandmother was 77 and my grandfather was 82) they wanted me to live with them until they died and my grandfather pulled me aside asking me to make him I promised that I would do exactly that. My 2 older sisters (13 and 15 years respectively older than me and I am now 53) and my nieces are adamant that they (my older sisters & brother-in-law) did their part. If they only knew what my mother’s plans for me were to live with their parents or in their homes (my mother even spent $17,000 having in addition put on to my one sister’s home while I was still in rehab) but there are too many skeletons in the closet that will probably never come forth.
I am going through a very lonely stage since I can only be up in my wheelchair a certain amount of hours because of my lower extremity edema. I hear any plenty as it is so I do not need a diuretic and that would even be harmful for me.
Just saying hello to everyone again after my LONG addition to this blog in July 2016. Hope everyone is well and, like one person said, it is difficult for me to continually hear other people continually say “you are so brave” or “stay strong.” If they only knew what I was going through on a daily basis. I was 100% healthier when I was living with my sister and brother-in-law and getting help from my other sister and nieces.
~Lori
Hi Lori – I’m confused by the way these blogs work – I made a (blog reply ?) relating to a relative of a friend of mines experiences to (yours ?) and got a reply that didn’t seem to relate to my comments .
Still I’m continually surprised by the number of similarities ( and differences ) between what you have been through to my own experiences after being in a car accident in mid 1992( a Mini Clubman versus a 6 ton truck , head on – no worries – the truck was OK it just needed the front bumper panelbeated !) – having a moderate- severe brain injury (aged 29& a half) which initially caused me to be paralysed on my left side up to my waist/ribs & broken eye socket , broken tooth , facial lacerations ( pieces of glass were coming out of my face for a week or two , too . ) my upper left side also had some mild paralysing effects too , which normalised over the following weeks . About 18 months of physiotherapy got enough movement back in my lower left side for me to get about without assistance ( to me I was fine – but at this early stage after a brain injury people are often not at all self aware ! ) but the following 25 years have been a long drawn out learning curve of continually gaining and losing ground , learning and forgetting and relearning that , though I appear normal on the outside ( I’m not in a wheelchair – my disability is inside my head ) – I do however have so much to be grateful for – I can now do many of the things that most people do – I’m now learning to play the piano & in late 1999 I learned to surf , standing up on the first attempt ( this was something I’d always dreamed I’d do – and in spite of surfing many times since , have seldom done it again) sometimes I do better than most people , just not for long before fatigue brings me back to earth ( this fatigue is a complicated beast , not only because I’ve got quite a tendancey to hyperactivity , which means my true level of fatigue is disguised by my adrenaline kicking in , but the fatigue takes so many different forms / shows or doesn’t show in different ways . However if I ignore my needs (easy to do when my self awareness decreases as I get more fatigued) at it’s worst it can be like your worst nightmare made real – confusion , delusions , VERY short sometimes almost no short term memory at all , problems with words (the word is in my head waiting to get out but my brain won’t let me say it ) other people say things but my brain modifies what they say , sometimes such that , what I “hear” bears little or no resemblance to what was said ! – I can have visual hallucinations (I know what I see is not real & these are always in my peripheral vision , which of course always remains at the edge of your view so no use turning your head to get a better look – I already know there’s nothing there ! ) – I can get a blind spot in middle of the left side of my view . Luckily for me , these and many aspects of the problems I do and have suffered are to varying degrees balanced by the positives 1 my reactions and thinking are still incredibly quick 2 – parts of my memory are pretty good i.e. I can memorise and remember certain kinds of numbers and words very well ( phone numbers & I.D. numbers and I’m pretty good with passwords until suddenly this ability disappears completely ).
Your experience with swelling reminded me of the Odema ( subcutaneous swelling ) I suffered last year when I got Cellulitis ( swelling and redness accompanied by huge levels of pain , that I had , starting with redness in my upper left thigh then it travelled down to the tips of my toes , followed by swelling , then the pain began (much more painful than a smashed Patella/kneecap which I forgot to mention , happened in my 1992 accident . ) I was put on antibiotics for about 10 days whence it became bad enough for me to be Hospitalised for another 11 days on an Antibiotic drip ( on the night I went into hospital I learned that my oldest Sister had died that morning ! – 4 days later I went to her funeral , still in a world of pain every time the painkillers wore off – then 4 hours later back to Hospital for another week ) .
I can appreciate your suffering is not the same as mine – but this might make you smile – imagine if people when discussing (your) circumstances replied with ” oh , I get that all the time – you just have to get over it !” ( like – your situation is no different from anyone else’s ) – That’s what I get constantly !
– Sort of – at the same time I’m just getting on with life , doing the best I can on a part time wage – under 20 hours – I even managed to save up and buy a half share in my own home (mortgage will be paid off in 2 years ) and even 25 years after a life changing event , I seem to be seeing improvements on a number of fronts !
Thank you so much for sharing your experience.
My husband and I were in a wreck approximately a month and half ago, he broke his neck in the C4 and C5 range. We are currently in a rehabilitation center. I am being trained to be his full time caregiver. I have been by his side (from the moment I was released from the hospital). However, I do not know exactly how his body feels, therefore, I have started to do my own research to help assist him, to the best of my ability.
I am very open and eager for any information I can get to help him.
Best of luck to you,
Diane
Hi Diane, you are going through a rough time now that’s for sure. There are lots of resources to assist you with information on spinal cord injury; here are the two main ones:
http://www.apparelyzed.com/forums/
http://sci.rutgers.edu/forum/forum.php
I am a C4-5 quad myself, so let me know if you have any questions.
Hello Diane – please see our extensive video library of people talking about living with paralysis. It’s called http://www.FacingDisability.com
This video is about spousal caregving:
http://www.facingdisability.com/spinal-cord-injury-videos/caregiving/who-does-the-primary-caregiving/darren
A friend signed me up for wheellove.com which is by two gals married to paraplegic men. Great blog.
Also see scottwfedor.com for a C3 perspective and guidance. Great insight and advice.
My big brother is a c3 incomplete from a car accident. It’s amazing to read other things from other people…Continue to live and be a happy person and I appreciate you writing this!
My brother was injured in a car accident when he was 17 years old and he’s 38 years old now. The doctor says he’ll never be able to move his body again and he’s a C4-5 quadriplegic. In the accident he broke his neck and injured his spinal cord. He can feel his body but he can’t move his whole body. He can tell when he’s in pain. Like if his back hurts or his shoes is to tight on his feet or when he’s getting a sore on his bottom. He can feel when you’re touching him. He knows when he has to urine. If he needs to be pulled up in his wheelchair he’ll recline his chair and rock until he’s positioned the way he wants to be. I don’t understand how he can do all of that but can’t get the physical therapy that I think he needs. He can move his arms/ shoulders but he can’t bend his wrist or fingers. While he’s in the wheelchair and wants to sit forward he’ll push himself forward. Do you think it’s a chance after all these years he’ll be able to walk again if he had the right help?
I’ve been a C5/C6 incomplete quad for 17yrs now. I was in a really bad car accident when I was 8 turning 9 in 98′. I’ve had a pretty shitty life but always got through it no matter what. Once people hear about what’s happened to me and what I’ve been through they always say I’m an inspiration to them. I get so mad about that. I was wondering if you ever get mad about it too?
~Kim~
Hi Kim, no, I don’t get mad about that. I understand why people say that. There are many physically healthy and able bodied people out there who suffer from depression, who struggle to put a smile on their faces and to get on with their lives. The fact that you are disabled and able to get on with life, with a smile is inspirational to many. Wear the label proudly. You deserve it. Clearly. Stay strong.
Awesome blog Tracy 🙂 You are an inspiration to us all. Keep them coming baby!
Please help if possible my friend is exactly the same as u and has several bed sores one that has already had surgery it’s either 4 or 5 from what I researched we live in Kingman which has horrible dr. he was the hospital and then sent to Phoenix where they put him on the wrong bed and made it worse so he checked himself out he has a nurse to take care of him some what in the day but his shoulders are now also blown out and his house is to small I need help I don’t want to lose him but I a Asked him to move I’m w me so I can take care of him at night and help because I’m already working all day, anyways I guess my main question is his ins is taking forever to get him the Clinton bed he needs and the proper cushion for his will chair and right now it is life or death, is there a loop hole of any sort u know of to get him what he needs ASAP because its sooo expensive we are renting a hoyer lift and inert to get duederm and spent $70 for 4 pads its ridiculous but I know the next 6 weeks or more are very crucial. I get him tontakenhisnvitaminsn but I have a hard time getting him to roll over he forgets everything unless im there to remind him and nah big a hard time getting him to eat. He is miserable so in pray gods will because idw to be selfish but his ins gives me the run around and I can’t afford the bed or cushion for him so I just have no idea what to do . Any suggestions
Hi Amy, unfortunately I live in South Africa so I’m not sure how you can go about getting the things you require quicker. But, what I would suggest is that you contact your closest spinal-cord injury Association. They would be able to offer you the best advice. Good luck with your friend. Be brave. Stay strong. Thank you for all that you do for him. Sending lots of love and positive energy from across the ocean.
Fabulous blog, Tracy and it was complimented by being short and to the point while all-inclusive and adding a bit of humor. I was most surprised about you living in South Africa. I think a lot of people at visions of South Africa being backward compared to the United States or France or whatnot. In any case, I was injured, when I was 15 in October of 1979 so I am 51 years old and will be 52 years old this month (July 30, 2016). I was very fortunate to have a big family and so many people come into my life to help. Until now. Believe it or not, I have outlived my parents, my grandparents and all but a very few family members. I was happily married to a wonderful wonderful wonderful man until he had an unexpected cardiac arrest on June 11, 2012. My sister and brother-in-law took me in and even though I hired morning and evening caregivers and I had an outstanding home health agency come in to change my indwelling Foley catheter, help with any skin problems, etc. they are now getting older and asked me to “move on.” Despite them being 100% more healthy and very active despite being 67 and 71 years old. I had nowhere to go but I was not going to go into a nursing home. My husband went to medical school and an expert in many fields. He always kept me out of harms way. I could not stay in the same little hometown that my sister and brother-in-law and their two adult daughters (my nieces) lived in because the town is so old and so far away from “specialists” let alone any accessible housing. Fortunately, they lived in a ranch house on a very smooth road… an ideal place. Except for living right next to a river that flooded very badly in 2011 forcing them to move out for three complete months and live with their daughter and son-in-law who live in a bilevel house. To make a long story not of them more willing to “share the care” despite me getting my own place (whereby we looked and could not find one even close to being accessible… apartment or house) and hiring the outside caregivers that I was hiring. I found a live-in caregiver in southern Arizona where my husband and I had been living for 11 years so I moved across the country but soon after getting here I was hurt badly by a nurse who came to change my catheter. She blew up the balloon and my urethra and it hurt me badly. The problem was that we were not able to “prove” what she did. I contacted an attorney and he told me the reasons why neither he or any other attorney would take on such a case because I had an indwelling Foley for over 36 years. Yada, yada, yada. Now I am leaking around my catheter badly and it will not stop. I am working with my urologist but my life has been taken from me now in so many ways. First, my beloved husband, then my family who took me in and now I have been confined to home because of this leaking. I am going to have a cystoscopy done, but even my urologist admits that she does not know if it can be repaired without pretty major surgery by another physician. I feel so alone without having family or friends. My husband and I were pretty much home bodies, along with our beautiful golden retrievers. One of which we lost in 2009 but then adopted another together and she is still with me. She is the love of my life, but already 9 1/2 years old, and when she goes that will be the proverbial icing on the cake of me being able to take any more. Nursing agencies are discriminating against me because of my diagnosis and my financial situation. Our federal government cut back on the help that I used to get back in 1995 thanks to my husband we were able to carry on. I am still grieving because he and I shared a life of 1000 years packed into nearly 20 years of marriage. That does not sound like a very long marriage, but it is a long story as to why we became so close. I have tried to hit there and yon to lead a comfortable life, but I do not feel like I am in a home because my live-in caregiver does not like to eat at the same time as I, so I did not even invest in a dining room table when I moved here in January of this year. She has a boyfriend in California and spends all her free time with him on the phone. As a C 4/5 complete Quad who had a stage III wound between 2009 and 2012 and left with compromised ischial tuberousities compounded with this leaking I have gotten much worse in a very short period of time. I know that I have to live for today but at every turn and ever since that nurse stretched my urethra… even more has been taken away. I used to have to avoid rough roads because of my compromise is still tuberousities, which is another reason I moved to southern Arizona where the accessibility is 100% as well as the roads compared to the northeastern United States but as far as the medical field… I didn’t realize it was as bad as it was and it has gotten worse in just the 3 1/2 years I have been gone. Most especially if you’re on a pain medication which I am unfortunately. I was diagnosed with syringomyelia in 1994, which took me 4 1/2 years to get diagnosed as my symptoms were so strange. And I had never heard of the beast. I had been working at the time but my endurance dropped over 85%. So I stopped working and began enjoying many of the hobbies I never got to enjoy.
Lost and forlorn and currently bedridden without my beloved husband to enjoy a bedside with, to watch movies together and just be there for each other. I have contacted many people who are supposed to be willing to help with care only to have one excuse after another, including churches and many spinal cord injury foundations, agencies, etc. including the closest Center for Independent living. I actually used to live for a Center for Independent Living and they do not have any answers either. I am a dinosaur of a case.
~
Im too a spinal c-3 incomplete, broken neck, brain injury. With ms in 05′ before a horriffic auto accident in 07′. Constantly fighting for basic needs with little help. Auto in michigan loves to blame my MS
rather than take responsability. I still dont know enough about the MS to throw C3 in the mix. I get no answers from nuerologist to pm & r. I been to several… only to get you’re a complicated case. Oh by the way my name’s Grace. Please. Email me with any info you may have.
Hi Grace, I’m so sorry to hear about your MS and accident. I pray that you may find the strength to cope with your challenges each and every day. Please get in touch with your local MS and spinal-cord injury associations for some more support. Be brave and stay strong.
You share interesting things here. I think that your page can go viral
easily, but you must give it initial boost and i
know how to do it, just type in google (with quotes) for –
“mundillo traffic increase make your website go viral”
Hi everyone, it’s my first visit at this web page, and post is really fruitful in favor of me, keep
up posting such articles.
Pingback: Thursday, July 10th | Support for Linda Pedro
Pingback: Friday, July 10th | Support for Linda Pedro
Pingback: Tuesday, July 8th | Support for Linda Pedro
Tracy you are indeed an encouragement to other patients..i never expect patients can still come around and make that great impact on others.so my God’s grace i will be the doctor of my generation that God will impart understanding upon to be able to fix those electric wires(nerves)that forms communications between the brain and the body.
Amen!!!
My dad’s has an incomplete spinal injury he’s a quadriplegic. He’s 82 he’s been this way for 47 years. He’s in a lot of pain on his mattress and we tried so many the mattress toppers made out of memory foam are too hard on him he wants something really soft right now. He also has asked for a very soft and flat pillow. We’ve tried expensive mattresses and toppers. Any ideas? Thanks Jill
Hi Jill , I read you have tried mattress toppers for your father. I’m a caregiver for a quadriplegic who recently purchase a Tempurdeic mattress and said it has changed his life! Very easy on transfering as well. They make pillows too! It’s quite an investment, but you should look into it! Good luck! Kimberly
Tracy,
I feel like I’m competing with the “Comparing One Quads Trials and Tribulations To Another” And how long do we have to roll around in our Wheel Chairs Before we can’t drag our Asses out of our Chairs anymore- Life of a Quad is funny how different each of us are- and how and what we do everyday to keep up ourselves up and going everyday- At 17 years old- Right out of High School- I got hurt in a swimming accident in 1961- Diving- accident in Kern River Bakersfield CA- Although I’m an old Quad- Don’t ever think-I’m a quad that got hurt and 3 months later I got up and just started walking- on crutches- I spent one year Kern General Hospital Ca-completely Paralyzed- from the chest down- C-2 – C- 7 Compression- No movement at ALL” Transferred from Kern General to Casa Colina Hospital Pomona CA- where I spect another Year Rehabilitating- So, now anyone that believes thaey can put a time span on a Quad- THINK AGAIN-Today I’m 70 Years old Quad today- Incomplete- Seen more hospitals than most- but, still dragging my but out of bed everyday-to face another exciting adventure- Hang in there and never give in- Don’t spend your Quad life waiting on a Spinal cure- that might never come in our Lifetime, Live for today- and never take any moment for grantit- Tracey,keep up the writing-and Keep up the Faith God Bless!
Leo “Buddy” Pergson Willows CA-
Thank you Tracy for a bright and positive article. You certainly should author the book “Quadriplegia for Dummies”! It was a bright and interesting read and you have certainly written the first chapter already! I am the sister of a C2 quadriplegic (my brother) and I too learnt about the emotional side of things from what you have written as my brother will always say “I’m alright” whenever I ask how he is! Yes really..and he tells the carers not to worry me when he is unwell but I usually have a knack of finding out! He is adorable and I love him dearly. Please do follow your heart’s desire and continue being a Writer for in every aspect from what I have read you already are! God knows quads and their families all need a little light relief from the medical terms which are clearly designed to make us feel dumb! Take care. p.s. I know you know you could use dragon software to dictate your book or ask your career to put the recorder on and tape it and have someone type it for you. (Your book!). Your lifestory. Anything you wish to write! I wrote a poem or two about my brother at the beginning of his accident 6 years ago..he regained normal speech after 6 months and could eat again despite the ventilator. Some people call this life support but my bro is really the life and soul of the “party” that is himself. A nurse once said a true inspiration. And so are you Tracy. Keep writing!
I am curious about your catheterization protocol. I am also a C4 tetraplegic. I use an indwelling catheter and change it once a month. it has been suggested to me that changing it more often would be too traumatic. But I see in your post that you use a new one every night. Is this a problem? Perhaps it’s easier for women because your urethra is not so long and curvy.
A Halloween costume exchange can also serve as an autumn fundraiser for the
school, church or for a non-profit organization. There are a large number of
banks across the nation that saves this blood.
However, some bodies reject transplants or there are no matching donors
to be found in time.
Thanks , I’ve just been looking for information about this subject for a while and yours is the greatest I have came upon so far. But, what about the conclusion? Are you certain concerning the source?
Pingback: Celebrating 15 years | Tracy Todd's Blog
I am deeply interested in body image, and I wonder if most paraplegics and quadriplegics are able to still connect with their body? I find the mind body connection fascinating, and although I realize there has been a physical disconnect from the body due to the spinal injury, I am wondering if it is common to still connect with the body via phantom sensation or mental/spiritual meditation? I hope this isn’t a silly question or offensive in any way. I simply want to understand a little more about how to support the courageous people who live this life.
I don’t mind the question at all, I just find it quite difficult to answer. Each person’s relationship with their body is so personal. My experience with my body may not necessarily be the same as everybody else. I don’t think one can generalise. I also think that paralysis is an extreme condition to deal with after being 100% able-bodied so there will be times, especially during the first few years, that one might feel disengaged from one’s body. I don’t feel disconnected from my body at all. Sometimes I might not like it very much. Sometimes I find it frustrating not being able to do what I used to be able to do. I’ve learnt to listen to my body, which continues to give me signals in a different way that it used to before my accident. But, this is the only body I have which will carry me through this journey in life so I had to make a conscious decision to care for it and therefore stay connected.
Well to shine more light on my situation she is fairly new to this so the change is still happening and adjustments are still going on. I worked with people with limited function and I kind went on their Que and I apply as much love and positive light when needed but I also try to give a listening ear. And understanding but I don’t understand should I talk to my lady about this ?? Or should I just continue being me and ask the other aid not to tell me negatives that if my lady wants me to know she would share ?? Or should I stand up for my lady and demand her husband to change?? Or be her voice? Cause we are all adults and my lady is a adult and she is capable I just feel bad for I did not know how the situation was until I was told by the other aid. I seriously did not know how to deal with all this info.. can u help?
Hello Tracy, i am a care giver to C1 or C4 quadriplegic I’m not sure what spine # is injured but she can’t move her fingers but can move her shoulders. My point is I have never been so up close and personal with people my whole life unless I am welcomed in like I understand getting in and doing my thing but I like to think I’m respectful well I try to be and I like to see myself as a extension of her arms. I don’t pry cause my theory is that she has had a major alterations to her life why should I come along and try to change her life I feel I will help her change if she wants and I will be here for her too but I don’t want to be that negative energy. Anyways I ain’t the only care giver and I am the new sheep but my lady I help is awesome I love her and I hear news from the other aids about the negatives in my lady’s life and I don’t understand ??? She only has 30% of her lungs N her husband smokes in his ventilated room n I don’t say anything and never thought anything of it until the other aid mentioned it saying he should not smoke around her well I understand what she is saying and we are all adults here but my lady does not mind her husband smoking well she understands his needs and she seems content. Well I just don’t know where to stand in this circle, the other aid shown light on how the husband won’t do anything for his wife unless he is paid but what she says to me about him has not been my experience with them. And I told her this and she said that I don’t experience the negatives cause I do not do mornings when the husband is hungover and grumpy. She said there were times when the husband did not feed our lady and she was soaked from bypassing and he did not clean up the mess. He has a bad back and is physically impaired himself but he does help at times. So now I got told about this I don’t know how to keep positive and be of help instead of picking at the negatives I feel lost now. I do not want to be passive but I do not want to be that force of change I want to help but I do not know how to. What should I do any advice??
Hi, it’s wonderful that you actually care about your lady’s best interests. I am not a carer but the sister of a quadreplegic who is looked after very nicely in a nursing home. Smoking is never allowed because of oxygen tanks (which is dangerous). Does your lady breathe independently or is she on a ventillator in which case health and safety should mean no smoking (tanks are liable to explode near flame). I think you could talk to your lady about your approaching the husband not to smoke in her presence due to health and safety. Also what if his cigarette ash causes a fire? I am seriously concerned. He sounds selfish to me. I think you should also discuss this with your employers because he may complain about you if you tell him about his smoking habits. However you could just be polite with another carer being present and tell him directly. I hope this helps.
Tracy, what a powerful blog! Thank you for writing with such honesty and humor. I am a nurse who is in a fresher program, and presently we are studying spinal cord injuries. Gratefully, I stumbled across your site–what great information. I wish you God’s blessings as you continue to share your story with others. Your wicked sense of humor is awesome!
I’m a new nursing student and have been taking care of what I have been repeatedly told is a quad. The only thing is she is hypersensitive to sensation, especially pain. It even hurts her to put my steth on her chest. Has anyone heard of this because I’ve found no answers
Hello,
Certainly she is living in near “hell.” I’ve been a 4/5 level, incomplete quad for 27 years. Hours after fusion surgery in 1985, the skin on my left shoulder, neck and chest turned superhypersensitive.
Superhypersensitive skin has ruled my life since. I’m male. I go shirtless at home all day, even when company’s over. Only do I wear shirts during errands and outings. Shirts come off seconds after returning home. The friction from the softest things feels like rubbing a hair brush on a bad sunburn. Water drops cause bad pain. Long hair touching during hugs causes pain. Anything touching my skin causes me to cringe in agony. THEE lightest touch hurts — as if you’ve been shocked.
I feel for any quad or para who has superhypersensitive skin. I believe its nerve ending that have nowhere to go… message not getting through. Pain meds do zip. I try remaining happy and choose a lifestyle that allows me to go shirtless daily. Family and friends understand. I’m blessed to have them in my life.
My hope is for those also suffering w/ hypersensitive skin find ways to cope.
I’m an incomplete quad from transverse myelitis and, on top of that, have MS (as rare as it is, they are two separate conditions in my case). Anyhow…when people around me wonder what it’s like to be paralysed, I tell them (if they are women) to lift their breasts in the air without touching them. with anything. “Go ahead and try while I wait.”
I makes for a VERY quick change of mindset and gives them a tiny idea of how one can be powerless over their own bodies..
I read through your blogs and can relate to some of your difficulties. In Aug. 2009, after having two weeks to decide on surgery, to release the pressure off my spinal cord I did it. The comments from my doctors were that I shouldn’t have been able to move at all. My comment to them was number one I am a mother of three and a nurse and God has brought me through a lot. My injury is from c3 to c7 my cord is flat, which makes me an incomplete quad. I have for the most part not lost function of anything yet. I have had to care for my children on my own, they are ages 4,6, and 8. We find it pretty interesting, when I get weak and can’t get up how my kids are picking me up. I had another illness, which put a stop to exercise for a while. With God’s help I look forward to continuing to get stronger, so that I can go back to work one day. And may God Bless you, so that you may improve.
Angela
Just read your post, but i’m also a quadriplegic so i know how you feel… i’m starting my own blog too.. and i hope i can learn from you.. thank you..
I’m not a dummie…..Iv’e taken care of my husband for 19years. yes I was young. I’ve been through hell. I thought staying with him; because we had a son 3 years and I was 5 months preganant was the best thing to do. I wanted to keep our family together. All I did was create a monster! he’s selfish and controlling and spoiled. He’s now using our kids to take care of him.
My advice……walk away!
I’ve been a C-5 quad for almost 10 years now. A motorcycle wreck did this. I’ve been married for 31 years and my husband is still with me. He gets depressed and say’s this is all he has to look forward to for the rest of his life. He and my family and caregivers spoiled me too. I stay in trouble all the time for saying things that tick them off. I’m a Christian and I love Jesus and I pray a lot about everything. I’m trying to change my bad habits I have developed. I’m blessed to have him. Maybe your husband can try to change too. God can help. God Bless you and your family.
My husband (32 years as a quad just recently passed away). He was the best man ever and I loved him with all my life…. he loved to live and said being a quad was a piece of cake…. (other than the pain)…. we met and fell in love 24 years ago… 1/2 of my life.. He loved life….. and he loved God!
And here I thought i was the only one. I am the daughter of a C3 C4 complete quad. My mother, who has stood by his side for 36 years now, was pregnant with me when he had the accident. She has not left though many times should have. my dad is a monster as well at the best of times, but he is my dad. It is a tough position to be in. We all live together – my husband and 3 boys, mom and dad, because i can not dream of leaving her alone with him. She has given her life to him and he just takes it for granted. I could never imagine being in his position, yet I do not believe that just because one is crippled, and hurt emotionally as a result, that they should they take it out the the ones that care for them night and day. It has been a fine, painful line for our family for years. I always knew that I couldn’t be the only one, and now I know that I am not the only one. Thank you for sharing.
I have a cousin (female) that is a quadriplegic going on 11 years. Im not going to pretend that I could ever imagine what she has or is going thru. Its her journey. I found this site seeking an answere to a question that I was afraid to ask anyone else…ya know ,,,because i love her. I was immedieatly a bit offended by the reference to me being a dummie. im not. i am a healthy adult female and that doesnt make me stupid. I was lucky enough to come into some money and no longer have to work. well, it wasnt luck, i wrote a book. yay me. so, i volunteer to help my aunt care for my cousin..she is in her late 20s and my aunt in her 50s. I am at my wits end with the abuse that she (cousin) has directed toward me, not to mention how she treats my family. i have to sit halfway across the house when im there..with a monitor. which is fine. but, when she calls me its for little stuff which is great, but it seems like she will wait until the very second that i get back to the chair to call me again. her mom is convinced that she is doing this intentionally. i see it now. i am there for the overnight shift and she doesnt sleep…at all. i was wondering if this is normal. thats how i found this blog. i am not stupid…just interested.. i dont think its okay to insult anyone. its unkind comming from anyone. if you dont want to stand out and be treated different,.then understand UNDER NO CIRCUMSTANCES IS IT OKAY TO BE ABUSIVE. EVER THE PERSON YOUR CALLING A DUMMY MIGHT BE DYING OF CANCER.(sorry for you ordeal juanita..god bless you and your family.
Deanna – I apologise if you took offence to my use of the word “dummy”. There was certainly no malice intended. It was used purely tongue-in-cheek. If you read more of my blog posts, you should hopefully see that I have a good sense of humour with the ability to laugh at myself with others.
I merely tried to explain my circumstances in a humorous kind of way so that people can understand what it means to be a quadriplegic. I come across people, on a daily basis, who do not know the difference between a paraplegic and a quadriplegic, for example. This post was merely meant to educate in a positive manner. I’m sorry that it touched you so negatively.
I know many quadriplegics who are really nice people and would never dream of treating the people that care for them badly. I’m sorry for the way that your cousin treats you. You certainly don’t deserve it. It sounds like there could be many more underlying issues going on in your cousin’s life. I hope that your family can find the love and peace that it deserves. God bless you all.
There are a great many ” for Dummies ” books , and the title is now appended for a great many different informational/instructional compilations with very little if any insult intended ( I thought everyone understood this & I would have thought it obvious that the title was “tongue in cheek” ) (do you understand the term “tongue in cheek”in America – it common usage here in New Zealand ) .
A friend of mines son ‘D’ – is ( I believe ) a Paraplegic & is going through many problems at the moment due to burn/s on his hip & complications arising from the burns (infections that won’t heal & trying not to get bedsores on his stomach , because he can only sleep on it ) caused by a device heating up & him not feeling it due to no sensation . – Of course this makes moving him (probably to hospital) rather difficult ! Yet moving him is becoming rapidly more urgent , to prevent everything building into a major/insurmountable problem . Expert help & advice is available/forthcoming but not always fully accepted by ‘D’ – thought mitigating that is that , in dealing with one issue , another is often created and choosing a good option for dealing with , for example infection of the burns needs to be dealt with & ‘D’ to regain a better health scenario before moving to a health care provider that’s ready to take him .
Sometimes help comes with strings attached or conditions of provision limiting the value of that help , ( sometimes including a debt of one kind or another being created ) .
‘D’s Son has significant behavioural/health issues and with that and a Daughter kind of mirroring her Brothers symptoms PLUS ‘D’s particular health issues affecting his Wifes ability to cope is putting their marriage under strain ! ( as you’d expect ) .
I hope I haven’t made responding to my post too difficult ? ( by going to such lengths to respect identities ).
– Mark .
Thanks for offering up all these details. A great resource for those wanting to know more about our friends, colleagues or families that are facing what you are dealing with. Keep up with your posts and your hard work towards your goal(s)!
Pingback: Independent Spirit — Trapped. | Tracy Todd's Blog
Pingback: Independent Spirit — Trapped. | Tracy Todd's Blog
Pingback: Your body is a temple, but only if you treat it as one. ~Astrid Alauda | Unwritten
Pingback: Dear Body « Rambling with a cantankerous old mule
Pingback: Dear Body | Tracy Todd's Blog
Pingback: Sink Your Teeth into This. | Tracy Todd's Blog
Tracy – I will include in my talks with the Great I Am – that the brains in the ones working to make the vital connections work again do so – sooner than later and that you will be one of the one to benefit from such a surgery.
Hi Tracy. Thanks so much for this blog post. I read through many of your previous posts during the December holidays, and tried to comment, but my words just seemed so lifeless and irrelevant. Thank you for your posts. Thanks for your honesty, and inspiration. From what I hear from my brother you inspire many around you. And now my words have deserted me again… I look forward to reading more.
ah, Robin don’t believe everything your brother tells you. 😉
Glad you read my blogs and managed to get some inspiration from them. I appreciate you leaving a comment. It means a lot.
Tracy, thank you for your incredible teaching skills. I love being teachable and today’s lesson made me feel brilliant because of your ability to put the info across so clearly and in such an interesting manner!
You remind me of the gratitude I feel for having come out unscathed from an auto accident when I hit a stag on a highway – going 120 km (the speed limit). As I was flying through the air, tumbling over an embankment, I surrendered to dying. I thought, “Well…now I’ll know. I’m going to God.”
A very clear message came just before I fainted (I was damned scared of the landing!) – You don’t go anywhere to be with God. God is everywhere, in everything. You’ve have always been in God’s presence.
I came out of that situation with only a bruise on the back of my hand. The hospital staff (routine check-up) warned that I’d be covered in bruises, especially where my seat beat crossed my chest and stomach. I gave myself Therapeutic Touch visually that night, prayed that my body would be okay, and woke up the next day – not even stiff.
The car? It wasn’t so lucky. It was a write-off. Flattened and no glass left in its windows.
Do I believe I have a purpose? You bet. And, Tracy, I feel such a strong love for you, your incredible spirit and your impeccable attitude. You are indeed one very alive woman. Blessings.
Thank you so much for your lovely comment.
“You don’t go anywhere to be with God. God is everywhere, in everything.” I absolutely love this! So profound. Wow.
Pingback: Tweets that mention Quadriplegia for Dummies | Tracy Todd's Blog -- Topsy.com
Thanks for a very informative blog, written in your own special style – and the wit makes it so much easier to read. One thing I realised today is that you live a much more active life than I do! I should start getting my butt off the chair more often than I do! Knowing more about how you live and what you have to cope with and go through makes me admire you even more.
PS: Will send you a very good story involving handcuffs! 😉
Thank you, Anton. 🙂
It really makes it all so much clearer. As Chris said above, we’re still learning.
Thanks for the post Tracy.
Thanks for learning with me, Sam. 🙂
“Each of us has a backbone – except, of course, if you are too weak in character, apparently.”
In this sense, Tracy, you have enough backbone for at least three people and probably more. Your dignity in the face of indignities shines through in this post.x
Thank you for your kind words, Deborah. I try to live my life with grace and dignity despite the completely undignified manner in which my life has to be managed sometimes. 🙂
Hi Tracy,
One more better informed “dummie” here ! You are an amazing person…keep going “baby” 🙂
Yeah, Baby — I’m so proud of you for being better informed. Today, there is really no reason for any of us to be ignorant about anything, especially with the Internet. Thank you for learning with me, Jillian. 🙂
Hi Tracy,
Thanks for giving us a little glimpse into your life. You’re always so honest and forthright with a wicked sense of humour. I love it! 🙂
Hi Jazz, so glad you get my wicked sense of humour. Love you, Baby! 🙂
Keep talking through the pipeline. All good soldiers have the right to complain. It certainly isn’t fair that you’ve been so brutally forced to extend your consciousness beyond the confines of your nervous system by this cave-in. Time (the avenger) is breaking down the rest of us too – at a slower pace but still, inevitably. We’ll all escape the mine at some point.
Keep projecting that energy outward. We’ll keep tunneling in toward you.
Michael, I look so forward to our tunnels meeting one day. 🙂 Thank you for your comment.
Well my darling, your “Magazine rack” is a whole lot tidier, cleaner and more organized than most people’s…….A truly great way to explain to others how you get through life with so many complications and we (the able-bodied apes) continue to maon and groan about how “difficult” our lives are.!! God Bless – Aunty Dolores
Aunty Dolores I think that the “tidier, cleaner and more organized magazine rack” is partly due to my OCD side are my personality. 🙂 Love you.
I am still learning. Thanks Tracy.
Tracy, I never knew or even imagined that this is how you live and cope with being a quadriplegic. Thank you for enlightening us. I feel that the world should know about you and how intelligently you cope with being a C4 Cervical vertebra victim caused by breaking your neck in a motor accident. Thank you again.
(●̮̮̃•̃)
/█\ ♥
-|| ♥ With love Helen
Thank you, Helen. To be honest, I don’t see myself as a victim because it can happen to anyone at anytime. Since I cannot take notes any more, it’s amazing how my memory has improved. So, it’s not all bad. 🙂
Very informative, Trace. Thank you 🙂
Tracy you are a tonic. I love reading your blog and learning more about you and how we, so called normal people, can be such a pain sometimes. OK, most times!
Thank you for reading my blog, Wilma. And yeah, you normal people are a pain! But, I still that you all! 😉 You keep me sane!