Quadriplegia – A View From The Chair
Caused by disruption or injury to the spinal cord between C1 and C7 quadriplegia is also known as tetraplegia in Europe It is a traumatic life changing event. I’m Graham, founder of the Mad Spaz Club. At 26 I knew very little about quadriplegia. That was all about to change. Laying in a hospital bed I remember thinking of all things I would never be able to do again. Now, after living in a wheelchair for 25 years, I’ve found with determination and help from friends, there is little you can’t do. Quadriplegia is a life changing condition but it is no barrier to living a full happy and positive life.
Before Living with Quadriplegia
Like most young Australian blokes I was into motorcycles, surfing, fishing, 4×4 camping, and travel. I owned and ran a successful electrical contracting business turning over $128K/year. I had ridden a Katana 650 around Australia with my brother and two mates and spent five months on a Kawasaki 650 twin riding across USA on my own. I was athletic handsome and worldly wise.
Growing up on my loving parents beautiful farm with three sisters and partner in crime brother, I’d rolled cars, jumped cars, brother even ran me over with a car. I had been shot, blown-up, electrocuted and damn near drowned, typical Aussie bloke stuff. I was soon to find my biggest challenge when early one crisp sunday morning riding my beloved Suzuki Katana 650 motorcycle home. My life changed forever in a split second.
My Spinal Cord Injury Accident Scene
It was five o’clock Sunday morning on a northbound corner of the Gateway Arterial Highway near Nudgee, Brisbane Australia. I slipped off the highway at 100 kph (60 mph). Spearing head first toward the southbound lane embankment it flashed through my mind, “You’ve done it this time Graham.” The impact was sudden and brutal. Unconscious my limp body slid to a stop. There I lay, lapsing in and out of consciousness.
My cheekbone was smashed into 6 pieces, broke nose, mandible (jaw), orbital (holds eye in), clavicle (collar) bones, three fractured ribs, and four shattered teeth. That was with a quality $300 Shoei full face helmet on. I would recover from all these but not the badly broken cervical vertebrae C5-C6 in my neck. The vertebrae ruptured my spinal cord which leaked spinal fluid, stripping myelin sheath off nerve endings, causing quadriplegia (tetraplegia).
X-rays later revealed the full extent of impact on the C5-C6 cervical vertebrae. It was so severe it more than crushed my spinal cord. Shards of badly broken bone sliced my spinal cord open in several places. Some shards were embedded in my spinal cord and some were still floating around in my neck. C4 was also not in it’s correct position. Swelling along with these meant that my quadriplegia would be severe. I would live the rest of my life in a wheelchair paralyzed from the chest down. Never again would I feel fresh cut grass under my feet, bubbling surf around my hips, or the warm delicate softness of a woman’s body pressed against mine.
You would think being thrown around like a rag doll at 100 kph I would have left the motorbike behind. But no, the hot exhaust came to rest on my left hand and I was unable to pull it away. Watching the smoke rise from my burning hand my brain was sending, “Pull your hand away” messages. Problem was, they couldn’t get from my brain, past the damaged section of spinal cord, to action my arm and hand muscles.
I was totally paralyzed from the neck down and on the brink of life or death. The hot exhaust burnt all four fingers on my left hand to the bone. I lay on my back motionless staring at the sky for what seemed to be an eternity. Having dated a nurse for ten years, and knowing a paraplegic friend in wheelchair, I knew I would most likely be a quadriplegic for life.
Angels On My Shoulder
Thankfully two men in a vehicle behind me noticed I had suddenly left the road and pulled over to check on me. I told them I had broken my neck and suspected quadriplegia. Between unconscious lapses I asked them to lift the motorcycle off my hand, and to not remove my helmet, touch me or move me. To take my mobile (cell) phone from my belt, phone emergency services, then phone my parents. Not wanting my mother to find out I requested they ask for my father, but due to urgency Mum was told first. Mum later told me her heart sank, knees went weak, and an overwhelming feeling of sickness washed over her. I’m sure my father suffered the same.
A strong quiet man, my father phoned my brother, hitched the 6×4 box trailer onto his car and headed for me. A policeman I would later come to know as “Dave the motorcycle copper” arrived at the scene. I recall answering his authoritative voice with, “I’ve done it this time Dad.” Apparently he fell to his knees, he had children of his own. Around this time my best friend being close by had heard of my accident and shortly arrived on scene with his wife, a nurse. My best friend was left frantic and alone on the highway until my father and brother arrived at the accident scene. Because quadriplegia is so serious his wife had accompanied me to hospital.
During the ambulance journey to hospital I complained to the young rookie paramedic in the back with me that I felt like my head was resting on a steel bar. He told me to shut up and lay still. The senior paramedic driving knew full well I had quadriplegia so couldn’t move and scolded the rookie. A spinal injury specialist doctor later confirmed the incorrectly fitted stiff collar had lacerated the back of my head. I know every quadriplegic goes through feelings of “what if” but the fact is, if that idiot rookie had fitted my collar correctly I may have more function today. Stabilizing the head and neck correctly is very important.
I was taken to the Royal Brisbane Hospital (as it was policy to go to closest hospital) where a doctor took a quick look at me in the ambulance, before ordering I be taken to the Princess Alexandra Hospital Spinal Injuries Unit. This delay and further travel was of not of benefit to my spinal cord injury.
First Day in PA Hospital Spinal Injury Unit
In the Princess Alexandra Hospital Spinal Injuries Unit the surgeon warned, “You may feel a bump here.” I opened my eyes to see him swing a large surgical steel mallet, whack! Two pointy surgical steel bolts were hammered into either side of my skull just above the ears. Curved scissor like tongs fix to these bolts and 7.5 kg (16 pounds) were hung from a rope running over a pully wheel attached to the bed head. With early quadriplegia stretching the neck vertebrae apart relieves pressure on the spinal cord lesion and limits head rotation that can cause further damage. Injections were given to reduce swelling and for pain etc.
It isn’t so much the broken spinal column vertebrae, but the amount of damage to the actual spinal cord itself (inside the spinal column) that matters. The greater the spinal cord damage the greater the resulting paralysis, loss of function and sensation, quadriplegia. By testing what you can (or can’t) move and feel a diagnosis of level and complete or incomplete quadriplegia can be given.
The wonderful nursing staff and support from my family and friends pulled me through some very dark days. Humor and love are great coping mechanisms. After a month in the acute ward I was diagnosed with C4 incomplete quadriplegia. The leading spinal cord injury specialist in Queensland at the time, Dr. Vernon Hill, suggested an operation to stabilize my neck. This would involve removing the shards of bone and replacing the badly broken cervical vertebrae C5-C6 with a shaped block of bone taken from my hip. All fixed in place with a titanium plate and screws.
Removing the unstable C5-C6, bone fragments, and locking C4, hip bone block, and C7, together would stabilize my neck. Making me more robust should I suffer another abrupt impact, fall or blow. Considering my wheelchair thrill-seeking lifestyle I opted for the operation. Taking ten hours it was a complete success and of huge benefit to me. During a recent annual check-up at the P.A. Hospital Spinal Injuries Unit I had the privilege of catching-up with Dr. Vernon Hill and thank him for saving my life.
3 Months in PA Hospital Spinal Injury Unit
My girlfriend left me, it was hard on her and my lack of will to live with quadriplegia didn’t make it any easier. I believe you need to love yourself before you can let anyone else love you. I didn’t love me as a quadriplegic. She had a gorgeous 18 mth old daughter. I sobbed, “I’ll never be able to run down the beach, pick her up when she falls or walk her down the aisle. Go find someone who can.” She did but we keep in touch.
I was moved from the 4 bed Acute ward into the nearly full 48 bed Spinal Unit. I started learning how this new life with quadriplegia might work. Overcoming the “just let me die” stage and so sick of counting dots on the ceiling, it took a few weeks until I could sit up in bed without passing out or throwing up. A wide elastic waist band helped. I began sitting in a wheelchair for 2 or 3 hours before pain and exhaustion sent me back to bed.
With no arm movement and little sensation rehab was slow. Aided by Physio and Occupational Therapists stretching muscles, weight machines, hydrotherapy, splints, sticky tape, paddle pop sticks and fish tank tubing all held new purpose with quadriplegia. I set small goals like signing my name, sitting up for 4 hrs 6 hrs, taking more food and less pills. My nights were filled with horrific dreams. Given over 900 injections in those first three months my stomach was a patchwork of bruises.
6 Months in PA Hospital Spinal Injury Unit
I regained some limited, weak arm movements, enough to push myself one length of the Rehabilitation room. Quadriplegia is weird as no two quadriplegics turn out the same. Some with “incomplete quadriplegia” may regain a little movement and/or sensation whereas others with “complete quadriplegia” none. In rare and often inexplicable cases they actually walk out of hospital. I can say, don’t push or expect them to perform anything, all you need do is let them know you love them.
Just as blind people develop an amazing sense of hearing, and can feel the difference between a $10 and $20 dollar note, losing the use of my legs and hands sharpened my other senses. I could see hear smell and taste all the little things others wouldn’t notice. Quadriplegia had turned the volume up on my life. Feeling the sun on my face would fill me with warmth, the nervous tone in a friends laugh would make me grin all day (or maybe that was the medication lol).
My father would smuggle in a six pack of beer on wednesdays. We sat in the sun at the end of the spinal unit drinking them. Mum brought fruit and flowers, great to bribe the nurses and trade with other wheelies. But the best thing they always brought me was their love.
I had a Supra Pubic Catheter (SPC) installed. It’s a permanent silicone tube inserted through the lower abdominal wall to drain the bladder. I chose the SPC for ease of cleaning and sexual reasons. My friends were all getting married and after 16 weekend weddings in a row it became painfully obvious with my level of quadriplegia I would never regain enough strength to push a manual wheelchair around in the real world. Marriage… first I had to find someone even willing to love a quadriplegic.
9 Months in PA Hospital Spinal Injury Unit
As C4 incomplete quadriplegia left me with no finger movement or wrist extension I test drove a couple of power wheelchairs. Of course chose the fastest one. It turned out to be my best wheelchair ever. After rewinding the Quickie P200 electric motors it does near 30 kph. Being compact and turning on a dime I can easily navigate “normal” households. Also important to me, it can be broken down for transport in a standard car. My modified P200 with Jay 2 gel cushion etc. was $9500.
We had a ramp put on the back door of my loving parents home, modified my room, shower, toilet and installed an air-conditioner (with quadriplegia we can’t regulate our body temperature). We don’t sweat much so the extremes of heat and cold knock us around. The CRS (Commonwealth Rehabilitation Service) was excellent and even paid for the home renovations back then.
12 Months Post Injury Returning Home
Home again I spent most days sitting in the sun contemplating what I was going to do with my life of quadriplegia. I followed up job leads in accounting I’d started in hospital. Bought a van with a hoist in the back. Began teaching myself how to use a computer. And built working balsa-wood model planes with my four year old Nephew as therapy to tune fine motor skills.
My incredibly supportive family encouraged me to venture out. They didn’t see my quadriplegia as a disability. They didn’t see the wheelchair, they saw me as a man, their son, their brother. Early one morning I had an accident in bed. We call it a, “Kinder Surprise” (a diet chocolate egg with toy inside). It’s brown, tastes like crap and you never know what you’ll get until you roll me over. Being a real mess my mother seated me in my power wheelchair and I ventured out into the garden.
In the early morning sunlight watching my father gardening a bee landed on a flower right in front of me. It was another turning point in my life. The bee didn’t care if I was dead or alive, or that he would only live a few months. His purpose in life was to collect pollen and he was busy doing it. Should he not, he would no longer be useful to the colony, and the colony would no longer be whole for the loss, of that one bee.
No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee. — John Donne
How could this tiny creature overpower me. Touch me so deep it would effect the rest of my life. It was just another “little thing” yet so incredibly beautiful. I was alive and there to see it. I realized then, I had purpose in life, a destiny. And only I could fulfill or waste it. On this planet I too am just a tiny creature, with the same massive potential. I felt a tear slip away and grinned at my father who was now watching me.
Life in a Wheelchair Living with Quadriplegia
Having lived with quadriplegia for 25 years now I can say, it took two years to come to terms with my new life and think, yeah I’m doing ok, have self esteem, confidence, contentment. Then at the five year mark I caught myself in the mirror and smiled nodding, “Now you’re really doing ok, and have accepted life as a quadriplegic.”
Shortly after that day I rounded the corner into our living room to find my mother with her head in her hands crying softly. When I asked what was wrong she replied, “nothing, I’m just tired.” She quickly wiped her eyes and went on with her day. It was me, the enormous strain of quadriplegia and being my primary carer had taken it’s toll. It hit me like a sledgehammer, that one person who would love me as a quadriplegic had been beside me the whole time, my incredible mother.
I applied and lobbied the government for a place of my own and permanently funded carers. My father was instrumental in cutting through bureaucracy and red tape for me building a case file three inches thick. Community groups friends and contacts made over the years all pulled strings for me. In 2002 eight years after my accident I moved into my own three bedroom quadriplegia and wheelchair friendly home.
I currently work part time in Accounting and Internet Technology. I enjoy creating graphics like the wheelchair heros one above. I have four excellent carers who assist in my day-to-day needs from showering to gardening, 41.5 care hours/week.
I am an advocate for the disability sector playing a keynote role in securing $4.3 Million in non-recurrent funding for the state over four years commencing 2005.
Early in 2009 I became an Ambassador to White Ribbon Day to end violence against women. A common reality kept all to silent amongst the disabled and their circle of charges.
There are many stereotypes and physical barriers ahead for those with a spinal cord injury like quadriplegia. Worsened by a lack of disability funding, public awareness and support. Hence The Mad Spaz Club. A little corner on the internet where we can get together with like-minded people to share our experiences combine our voices and problem solve.
Education and funding in the disability sector is increasingly enhancing the lives of disabled people. Find out what it is you want and don’t stop until you achieve it. You have a voice so make it count. Get out there smile bright and enjoy your life. Keep your eye out for us wheelchair users and all the “little things” along the way.
Kind Regards
Graham Streets
MSC Founder
Hi Graham
Did you ever consider stem cell treatment?
Thanks.
Rainey
Hi Rainey, whenever someone asks if there was a magic pill to fix quadriplegia would you take it? My answer is no, I am quite happy being just the way I am. Many negatives come with quadriplegia but so do many positives. While that may sound benevolent, if such a pill existed in reality, I probably would take it, and not just for health reasons. My biggest motivator being more physically able to assist my family and friends.
Stem cell therapies are no magic pill at this stage. It’s also heavily regulated in Australia. Most seeking stem cell therapy for spinal cord injury go overseas to India Asia or Europe. A friend of mine Perry Cross did exactly that and can now breathe longer unassisted by his ventilator. Perry plans to return for more treatment. I posted an invite to a stem cell symposium in our news forum if you will be in the Brisbane area check it out.
Hi Graham,
I have a unique request, one that I hope doesn’t upset you. I am a writer and have written a poem and in the midst of a series based on it. It is about a little girl who has an accident and becomes quadriplegic. I wondered if you would be interested in reading it to let me know if I have been insensitive or if the poem would bring more grief to people who are in similar situations.
I understand if you would rather not, but thought I would ask, just in case. I would really appreciate your input as my intention is to bring hope, not further pain.
Kindly,
Jennifer
Certainly Jennifer, I’d be happy to do that for you. Please send it to me via the Quick Contact form at the bottom of this page.
Hi Graham
Thank you for sharing your story. I don’t have family member or friend that is paralyzed, just saw a tv show that piqued my interest so I started researching to learn more. You’re right about 1 in 3 having a disability or cares for someone with a disability. I have a brother and father with serious mental illness. They can move but are terribly disabled in another way.
I’m sure you’re a great comfort for people with questions or recently injured friends/family and they certainly need the support.
Graham your a cool dude very cool. XXX web site we need more people like you.
I’m 5-6 complete.Wouldn’t change a thing.l love the qu-p200 turns 360,and stop on a dime.shopping takes 5-10 min.love to chat drop in any time.
Jim Ball
Had I not reached out I would not have been blessed by the encouragement and support of good people like yourselves. I thank-you one and all very much.
Thanks buddy,but your web site encourages us all very much.keep up the good work.
Jim Ball
I stumbled on your story. As I was reading I caught myself consumed with your story. See, I became a c-3 quad from a fall from a rocking chair, went to sit down and use the phone and 5 seconds later I was paralyzed. As I read I had so many similar memories. It’s just been 5 years for me and it’s people like you that encourages us to push on. You show there is light at the end of the tunnel. Bless you.
Thank-you very much Patty. In my next revision I will share more of the emotional side of my spinal cord injury with you guys. I love to read about you all, and share in your experiences too. Everybody has a story and though we may say it’s not interesting, it’s just not interesting to ourself, because we lived it. A leaf is a leaf but there are many types of trees. I thought wow a C3 from rocking chair.. did it slip or break.. are you elderly? I mentioned your post to some friends and family this weekend Patty. One asked, “Was she planking?” I am keen to know more about your life pre and post injury and all the complexities inbetween. Do you still have the phone.. rocking chair? I offer an open invite to any who wish to share their story with us. I get the feeling it was something to do with water Patty but I don’t know why. Did you used to water-ski?
I enjoyed your site. Ron broke his neck (c5/C6) in a car accident in 1967 when hw was 19. We met in 1976 on a CB Radio. LOL, we often wonder if it would be on the internet today. We have been married since 1976 and have a wonderful life. He worked at a hospital at the switch board, then later went back to school as a computer programmer. I was a nurse. We have a daughter and now a grandson, who are the joy of our life. He has retired.
About 2 yrs ago he developed a wound on his hip and another lower one this last November. We tried everything at the wound center. They had to remove his hip and part of the femur in June. He is back home and we are waiting on a tilt wheel chair so he can sit up more than 2 hours. Ostemyletis hopefully will be gone.
It is great you have a site for all to read.
As a small boy I was not allowed on our CB radio. The second youngest of five children I remember some of the lingo, CQ CQ anybody got your ears on, 10.4 etc. If you and/or Ron would like to write about your experiences I’d be happy to publish them, for all to read. Did Ron’s Osteomyletis stem from his SCI injury, bad pressure area, fracture? 40 years a quadriplegic is a fair slog. Spinal cord injury medicine back then was brutal, striker frames and little physio. I bet you guys could tell some interesting stories. Give Ron my best wishes for a speedy resumption to upright life.
Hi Graham, I recently lost the love of my life to of all things complications due to MRSA. He was a C5-C6 quad due to a motor vehicle accident in 1985. I only had 7 years with him, but it was a great 7 years. Anyway, I love your site, don’t really know how I found it, we’ll just call it fate. Thank you for sharing your story.
Hi Graham! this site gives me sOoooo much knowledge and makes me understand guys like you more and more. I am dating a quadraplegic guy, He’s sOooo amazing! :)
More power Graham!!!
Thank-you Ja, I am sure you will have a fantastic time when you visit your boyfriend. Not long now, you must be excited! It was great to read your family is supportive too. I look forward to hearing all about your trip.
Your welcome Graham! I am really excited and will surely share with you guys our experience, not all tho, LOL..
More More power!!!
God Bless!!
Hey, are there any teenagers on this site?
Hi Graham :-) Im w/ a T12 paraplegic and eveything is going great..but now Ive got babies on the brain lol I read earlier your response to another young woman was that they have buzzers or “vibrators” that stimulate ejaculation? Does this actually work? Does anyone use it and it works for them? I’ve read about the Ferticare and that bad boy is expensive lol before I drop a stack I gotta know if it works lol anything u know on the matter (or any of y’all ;)) would be greatly appreciated thanks
Hi I read the above story with tears and smiles. It gave me an insight as to what my brother may really be feeling as a C2 (C4 point of injury) complete tetraplegic. It has been 4 years since he broke his neck and is ventillator dependent. Last 2 years he is in a nursing home in country whilst I live in town and so my visits are infrequent and virtually everyone in his life before can’t be bothered to see him. Bottom line. Even friends he knew for 24 years. He is a nice person aged 44 now. I don’t get help from my other brothers, they have their own problems and my brother John is very isolated. He originally wanted to lead an independent life but the government wont fund 2 24 hour carers and maybe it is safer for him where he is but he never gets out of the home except a recent admission to hospital for pnemonia. He was 6 months in ICU but spoke and regained his voice slowly. He started an open university course in computers as he is a whizz at them but due to prolonged bed rest, not able to get tutors visits often enough that is on hold now. He seems to have lost interest in his course since being put on heavier antidepressants. He has never complained to me about his condition. Always says “I’m ok”. I just want to know is there any equipment that can make his life better that I can strive for. He cannot have a powered wheelchair because he is partially sighted at birth. He participates in physio but is yet to be measured for a shower. I complain more about my life then he does about his very limited movement (neck downwards can’t move). How can I help change his routine from just watching television, get his interest back in his computer projects. He has no one to talk computers with him anymore and at one point wanted to start his own business as he has a BTEC already in same and used to teach/technician. I feel he is vegetating as such and it’s really getting me down. Also there is no funding for counselling for him in this nursing home as their GP doesnt think he needs it yet he is contradictorily on heavy drugs?!! They have recently halved this dosage as he was sleeping too much.
Are there any suggestions please to make his life a little more varied then watching television which he is losing interest in also. The home has far and few events.
andrea
Andrea, you are a dear sister for trying to help your brother…and you’ve come to best site on the web as a starting point for you search for help! There are a number of questions I have for you. Where are you located? In the States? Oz? UK? Exactly what kind of state support does he get? Does he have a social worker? Can the home where he is at make any further adjustments for him? What are the odds of him being relocated in a facility closer to you? Does he have access to a computer? When is the last time he has met with his doctor? Can you arrange to visit the doctor with your brother; review all his meds and the dosage amounts? Have you sat with your brother and really discussed a “game plan” for his future? Don’t let him off the hook with an “I’m fine” comment. What your brother wants is, obviously, the most important aspect to consider…but look inward, Andrea. How much are you willing to commit for the benefit of your brother? Many of us would like to “make things better” for a loved one on wheels. But when push comes to shove, are we willing to do it? It’s a tough path to consider taking. And, this comes from personal experience…is our loved one willing to let us help? Or are they waiting for someone to do it all, so they don’t have to? Like I said Andrea, you’ve come to the best place to gather the info you need, and there’s alot of people here willing to listen and make suggestions! Hang in there girl. Your brother is lucky to have you! ~ Deb
Hi Andrea: Most high level tetraplegics use a laptop with headset running voice software like Dragon Dictate. If speaking aloud in a nursing home environment is a problem there are mouth-sticks or infra-red headsets, given some limited head movement. Being an IT tech I imagine your brother is aware of these things. Perhaps you could ask what his ultimate laptop would be. Outside of that I am sorry to say ever living independently (in his own home) is now very unlikely. Once you are in a place where health environment and psyche are secure government departments consider your needs met. To be fair, there are guys on ventilators who have it much worse. Government funding in any country can only go so far. We always want the very best for loved ones. Perhaps John is happy where he is at.
Hi Debs and Graham
thank you for getting back to me. I have tried several times to write you replies but my laptop is playing up today. I will have to type them in word i think as the replies keep disappearing from here.
I wish you both a good weekend. I am going to see a band play with a friend today, I have not had a social life much lately as I have been having sleep problems. I think the band will take my mind off the worries!
I am grateful you have made some suggestions and will just say briefly as i need to get ready for the journey.
John was born in London United Kingdom. The NHS pays via the primary care trust but in return they make all the decisions where to place him etc.
kind regards
andrea
Andrea, I don’t wish to be contradictory here, but just because the NHS pay for John’s care it does in no way give them the right to decide upon where he should be, he is clearly depressed. Does he have a social worker, or enabler? If not I would suggest asking for one, or both, anyway, quality of life is very important and no matter what the level of injury is, he should, and can make a decision about how and where he lives, and any and all support should be offered, but feet may have to be stamped (by someone else on his behalf) tantrums thrown and demands made, but it is possible, good luck
Sorry if this is all jumbled…you must understand my state. My brother was In a car accident exactly a week ago. He is in the hospital right now battling pnemonia, an collapsed lung. He splintered is what they said C1-C3. As far as ive heard, hes only bruised his cord. My Mom only says the doctors arent hopeful. They preformed 8 hours worth of surgery with the docotr saying he is happy with his reaults and believes he relieved pressure off his cord. I know there is always hope, as God is handling this one personally. He is very sick and very tired now I know, but with the doctor saying he isnt hopeful, and some of the things that have been said or happened…i dont understand why not. A very important detail is that before the accident, he was already deaf. He has no brain damage, and blinks to answer questions. I was told when tested he felt a toe, and his shoulder. The nurse said looking at his chart he might get his arms back…..my Mom said she was rubbing a rag over his hand and he was making faces like it hurt. Of course it isnt as easy as asking because hes deaf AND barely awake. According to what I read that would make him incomplete? Maybe im fooling myself or maybe it true, but as bad as this looks I believe he will even walk again. He is my baby brother and I will die taking care of him, I just dont want this to damage him emotionally. I know it will and I wish I could take that all away. I just tell my Mom tell him dont be scared and keep fighting. I am only 25, and the thought of my 22 year old brother robbing himself of the rest of his life kills me. As of right now he is still being sedated. He is on a vent. With pnemonia, and a collapsed lung. His fever is back to normal and they hope to sit him up and feed him tomorrow. Of course they inserted a feeding tube today. I know this is week one and we have a long way to go, but if its possible, I believehe can walk away from this one day. No one realizes the emotional damage this plays on EVERYONE. God bless Everyone of every kind. Your thoughts are appreciated.
Hello Robin, It would be foolish of me to say he will definitely walk out of hospital. Not even his doctors can say that with certainty. I’m afraid it is a wait and see scenario. Yes it is promising that he has some sensation, and that does indicate an incomplete injury. Taking into consideration his C1-C3 have been stabilized, the spinal cord was bruised not ruptured, and his prognosis is better than average. Again I cannot say he will, but from what you describe there is a slim possibility of him waking out.
Of major concern now are the after effects, phenomena, blood clots, getting off the vent. Be patient as it will take time for the swelling around the injury to reduce. The first three months will be a strong indication of his eventual state. If you would be so kind, I’d like to hear some progress reports. And where are you guys, how did he break his neck?
I would avoid saying things like keep fighting, you’ll be right, etc. The best thing you can express to him is that you need him, and will love and support him no matter the outcomes. He is in good hands Robin, my concern is your Mom. It’s devastating for you and I’m sure you’re hurting for your brother, imagine if it were your boy. Go give your Mom a big hug.
My brother and a friend had gone off to a bar to play pool. On the way home they drove over 4 people yards and into a tree at 100mph. My brother was wearing his seatbelt and to our knowledge was NOT drinking. The driver however was drinking and believed to be on a cell phone. I guess after it happened he freaked out an ran. He has since been picked up an held without bail on 8 diffrent charges. As far as my Mom, I know she is sad, but she herself will tell you….it hit the children (my 2 brothers and I) harder. We actually grew up and fostercare and hadnt been adopted until 7th grade. So unfortunately we dont have that BOND. I am more of the mother figure as far as caring for my siblings. I am very greatful that she is able to be there for him since They all reside in Georgia and I am in Connecticut.
His fever went down and then back up, but my Mom said its down again. They plan to sit him up and feed (feeding tube) him today. She said he is off one medicine and is opening his eyes and even smiled at the nurse. He is still on a ventilator. They hope to place him in a facility to help him off the breathing machines. I dont know exactly why the doctors arent hopeful. I was told they have to say that because they dont know. My mom has only said the bones splintered and bruised his cord, nothing about a tear or leak of fluid. How much are they suppose to know at this time? I thought since the doctor stablized his spine and saw in, he could tell…I was totally clueless to SCI until this week, so im not sure of anything. I dont think he will walk out of the hospital, but I just feel like he will walk again. As you said only time will tell. I am unable to go see him since I have a minimum wage job and a son to care for, but I hope he doesnt think I dont love him because I do VERY MUCH!! He has been so strong and brave, and I am so PROUD of him. I will keep you updated and believe it or not talking helps. I appreciate you time and thoughts. You are an inspiration!!
Thank-you Robin, the doctors may know all the physiology but can only go on a law of averages. Two identical injuries can have vastly different outcomes. The trouble with a hematoma (severe bruising) is swelling. The swelling puts pressure on nerve endings starving cells of oxygen and nutrient rich blood flow. The longer this goes on the greater residual damage occurs.
It must be frustrating to live so far away. It might be nice to write your brother a letter, have your little one draw a picture and post it.
Hi Kitten
Thank you for your response and advice. I am sorry have been away from here for a while dealing with personal issues. I know I should put John first but sometimes I have to get on with things. I was burglarised in Spring of this year and am only just setting my flat to rights, with the damage they caused. Also it has been pretty emotional for me, especially with John recently getting over his bout of pneumonia in hopsital. Since his release back to the home after a week (hospital beds had to be freed, even though he wasn’t quite over the last stages!) he has settled in more with the nursing home. He is quite docile in comparison but his medication has been reduced..in particular that haloperiodol his GP had prescribed when he was getting angry when his computer was broken (accidentally) etc. A lot of things break but the home never replaces them. Also his money for a new laptop was stolen last year and they dont replace the money but put a safe in his room instead. what is the point of that? I have more good to say than other about the home since visiting more frequently..I see he is dressed more now that I complained to John he shouldn’t not wear anything unless he has physiotherapy. He is having that on a more regular basis now and generally speaking I think he is settled. He says they are his family now. Even though the carers do leave frequently I think John is now what he always feared “Institualionalised”. He has no desire now to leave I don’t think. I can pin point this to his cocktail of drugs where he slept for days and weeks on ends. I visit him more often by trains, buses, than I did relying on friends since the carers have told me the various routes. And I have noticed John is becoming more alert as a result. I feel so guilty for not attempting this sooner but was afraid with my heart arrythmia to catch trains before..now I just do it! And so far a little racing but nothing too serious. I am afraid to campaign to MP’s or whatever now..because John seems settled and what if the other places are not as qualified..as I think all NHS places are not in London. I have visited a few homes..but really The Primary Care Trust decided where to send him. I am happy they give him physiotherapy on an electric bike but apart from his physio days or odd days in the garden in summer he is pretty much just watching television. This homes entertainment is voluntary as most homes but not as frequent as other homes I visited pre to John’s placement here. I particularly wanted him placed in another home which was nearer London and seemed to have a lot of activity going on but was told they were not so experienced with ventillator patients, even though I was later told by a nurse that they had someone who was similar to John a C2/C4. What worries me is that John is not near a spinal injuries hospital in case of emergency..he was put in high dependency unit in a local hospital recently because they didn’t know how to operate his vent, and a carer from the home had to be there until they found a nurse who could same.I know this would be grounds to push for a move but right now cannot do so until John wants to leave. However I can in the meantime do some research in the new year to possible options if any. I asked about psychiatric counselling the Home says it is not in their budget. I asked the GP in the Spring and he said he didn’t need it in his opinion but I haven’t asked since. John says he is ok..whenever you ask him. John had social workers in London (He is registered blind,being a partially sighted person)but he is out of their borough and doesn’t get one at the nursing home. Recently the home has set up a team of people, made up of senior carers for patients families to discuss issues. I did mention I was concerned about his sleeping patterns which are I am happy to say better since his medication has been reduced. John was receiving counselling in his long term hospital stay prior to coming to the home. He spent 2 years in hospital (7 months approx in Intensive Care Units) and couldn’t speak for six months and had to retrain but miraculously gained his natural voice despite being told he probably wouldn’t speak naturally again. He has somehow fought most of the odds but is still deemed fragile. Especially on account of his former extensive bedsores which do not allow him to sit up due to them breaking down. Including some on his head. I don’t think he is being turned as often he should be..but I am not there to supervise. If he was being turned as regular he wouldn’t have developed them on his head..which was during the periods of heavy medication I think, when he slept a great deal. Sorry this is so long. Thanks for the support and advice, I feel I am among like minded people who understand the complexities and needs of our loved ones, indeed many of whom are going through similar. On a happier note he is having his xmas party with other patients at the home. Most of whom who have traumatic brain injury and other neurological conditions but they meet together on special events. I know John enjoys parties! All the best. Andrea.
Hi Graham
John has a sony Vaoi laptop purchased 3 years ago but doesnt support dragon. he was getting an upgrade but the money was stolen. i wasn’t told about it till months later when john eventually told me victim support had spoken to him on one occasion. He has an open university computer either on loan or part of a student grant but the carers are not insured to use it and its not their job unless they want to help. I believe he was being trained to use dragon software or similar but the internet connection is so bad in his room. The home wont allow him to have his own hardwire connection or wireless and so he tried connections through mobile phones. He offered to pay tutors out of his personal allowance, small savings but none can travel to his location. He seems to have lost interest despite having a BTEC in computers at a young age. So for now on hold as it requires him to sit in wheelchair to operate same for longer periods which I believe he is achieving with regular physio (up to 3 times a week). I would like to see him on msn at some point but the connection keeps dropping in his room as no other patients use it in the 9 high dependency rooms in his block. Thank you. kind regards Andrea.
These are all horrible stories. My friend can’t speak either. But, she has married the guy responsible for her injuries instead of getting a $1M dollar settlement from his insurance company. This was a helicopter accident with him piloting. The paramedics weren’t totally unaccountable either.
Hey Graham, my name is Luis Gonzales Im a c5-c6 graduate and im writing my first blog. It might be a little bare now but it will soon be filled with experiences and tutorial videos on how to do things yourself at home and in the community! Your page is a huge inspiration. Merry christmas!
Graham-
I plan to update you on my brother tonight. Real quickly though my Mom text me and said my brother can feel his feet and his friend said he says he feels his feet and arms. Breaking his neck at c1-c3 and bruising his cord….should he be feeling his feet or arms? It is puzzling to me. Some of his friends will see him today and I will let you know what I find out. Right now you are my only way of remotely understanding. From the bottom of my heart I appreciate you being here and able to help me. Ttyl :)
My brothers friend messaged me and she said she had gone to see him today. She said he was more alert and fully awake. He is still on a vent. for breathing although he went fro needs 85% to 70%. The docyors say it is still an issue yet better than last week. He was fight a bacterial blood infection initially, but I believe that is over now. He can move his head side to side and shrug his shoulders. He can feel his feet, but not his legs. He can feel his arms but not his hands. They want to try and get him into a facility to help him breath on his own. Also, the doctor is recommending him goto the Sheppard Center in Atlanta…if they will accept him for 2 months. They are one of the top ten in the nation, but I dont want to get my hopes up because last week they turned him down because there were no family members able to drop everything and moved into the facility with him. It would be nice though….I believe he keeps trying to move but he gets nothing. He is 100% deaf (from childhood illness) and as you could imagine frustrated that he cannot communicate so easily. He told his friend to remove his breathing tube, which leads me to believe he thinks hes doing it on his own….which hes not! They did another clean out of his lungs yesterday. My mother asked the doctor is he thought Andy would live and he said yes. I never doubted that part. My concern is for the emotional damage. This will cause. He is so stubborn and hard-headed! I told him I love him, in which he responded i dont know. I feel like somethings missing and if I could just get to him it woukd be okay. I plan to visit in January. Any thoughts from anyone are appreciated. :) Robin
Thank-you for updating us Robin. Glad to hear his condition is still improving. Healing from a traumatic spinal cord injury is a painfully slow process. You mean he responded, “I know” right? If you are quite certain you will visit in January letting him know about it is the kind of emotional support he could use. A goal with no expectation on him no pressure or prejudice is a good goal.
I was shot accidentally and paralyzed in my place of business. I can no longer situp long enough to prosper. Earn the money needed. I’m fighting like hell to start another business. Ty everyone for your time. I need special equipment to help me cope with these complications from SCI.
Hello Jeffrey
How are you today? I hope you are pulling along and most of all I hope you find peace of mind. Your post touched me because my brother too cannot sit up for long periods and had to abandon a university course, or at the least put on hold though he tried his best, there were other problems like lack of tuturiol support. It appeared it was difficult to find teachers who would travel to his nursing home despite it being within easy reach of railway stations and free car parking. The money offered as salary was good too..but apparently not good enough. More than average wage as in UK he got a grant to help with university fees. Anyway he wanted to also start his own business as he had experience in helping friends start up and maintain theirs. All I can say is don’t give up and if you believe in God please pray. For years I was just too shocked and mentally exhausted to pray for my brother. I was angry even with God, with life. It affected me greatly as I am his only visitor as his friends and family disappeared. Our parents were not here because they have died and his brothers were unable to keep up the contact apart from christmas and birthday. He also wanted to marry and have children but now it does not seem possible but it may still be. One thing though I know he never gives up hope and I think someday John will get back on track and back to computers which he loves so much. There is so much you can do with technology as you know and I just think perhaps you need time to heal more. You have your brain, the best and largest organ (I think?!) because at the Home where John resides, as I have no choice, there isn’t funding to pay for 2 24 hour carers and he is fragile, I know that John thinking positive has helped tremendously. He puts on a happy face and I am actually beginning to think maybe he is. Having adjusted to his new way of life. Please, please go easy on yourself. Listen to some lovely music, watch a few films if you can. I will pray too for you. I hope you get back to work one day if that’s what you really want. Take care of yourself. Andrea
Hello again
Thought I would leave a photo (the first ever) of John and myself last Christmas. It will be his fifth year of tetraplegia at C2 since his fall in July 2007. He lost everything, his home, his former life, his friends and his family (most of us) but he has one thing, his mind and for that I am truly grateful. He regained his voice after six months in intensive care (which was thought would not happen) and since then we talk everyday on the phone. I wish I could visit more often but he is the countryside and I live in the town. I cannot move there but I follow his progress. He has progressed to the electric bike and standing table in Physio. All these things we didn’t think possible as he was bedridden for many years due to his bedsores on his spine he got in intensive care because they couldn’t move him due to heart attacks he was getting …but God is good. I still believe one day technology and God will find ways to help all stages of spinal cord injury. I think in this century this will happen. Especially with the recent breakthroughs and tireless scientific research. There’s hope.
Andrea.
Hi the first upload didn’t work. trying again. John and Andrea xmas 2011
i am new to all of this and my bf was recently injured and is a c3-4 v-quad i need info support help or anything anybody is willing to offer i have lots and lots of questions but have nobody to contact with answers please feel free to email me [removed]… thanks Kyla
Sorry couldn’t upload the xmas pic so here is John, his brother Ash and myself at his 44th birthday March 2011.
best regards
Andrea
Andrea, what’s in the box?
Kyla, you can ask anything quadriplegic here, or start a post in our forum if you like.
Id like to email im still in the hospital all I have is my phone in here and its hard to get to this site [removed].com no spaces it wouldn’t let me post my email
Hi Kyla, we keep a strict privacy policy. Part of which is to ban or remove any email addresses from public view. It is for your safety. You can email us at admin@streetsie.com but I may not reply directly. Our forum is a broader advice channel.
Hello Graham,
What’s in the box? Why chocolate birthday cake of course! With blue ribbon tied round it. I wish I had baked it myself but it was delicious and made John’s birthday. He is partially sighted (from birth) and now C2 Quadrepligic and was bed ridden at the time (due to previous bedsore breakdowns from not being turned enough. Legal advice sought) He can sit up for a few hours a day now which is great! Aren’t birthdays fun!
Take care of yourself and family
and thank you for a wonderful website. When I was lost I found myself by chance here and it made me feel that at last people who know how it really is. It was very comforting. I told John about it but at the moment he has not been using his commputer via his carers as they are not allowed to do that unless they want to or something to that effect. I am not sure as John never tells me anything except “I’m alright!” And his positive thinking is seeing him get stronger. I particularly love the physio team who put him on a quad bike at the Nursing home and standing table and work his arms with some sort of machine. For the most part John is on this journey alone as he rarely gets visitors and we still have the Town (where I live) and City situation where he lives. The snow presently has disrupted railway lines and bus routes so I really need to find the courage to get behind the wheel again of a car since I was a front seat passenger in a head on collision two decades ago. Seeing Johns determination to try his best I feel ashamed I don’t have similar drive. I also can’t believe I didn’t break any bones in that accident (hairline fractures) despite 4 cars being written off. I still feel constant pain, albeit manageable with paracetomal and yet my younger brother John fell off a chair (office type with wheels) and breaks his neck! Life isn’t fair and a lottery in my opinion and I just hope one day Science continues to have breakthroughs and God is watching and helping.
Kindest regards
Andrea
Hi Graham,
Can you please call me! Are you still in Melbourne – I would love to meet you!
Thanks,
Emma, Richmond.
my number is [removed] Thanks, Emma
Thanks Emma, I noted your number but I’m up in South East Queensland.
Hey – sorry me again. I have just moved from from Sunshine Coast to Bendigo to be with my cousin stu who is a quad. It would be great to know someone in Melbourne that could help us. I want to do some trips into the city with Stu.
Thanks,
Emma
That’s very nice of you Emma. Melbourne is fairly accessible, the Vic government website is helpful. I would avoid trams, not all are accessible and for the most part they are simply to overcrowded downtown. When crossing the tracks go straight across or at a slight angle, to big an angle and his castors can get stuck. And I’m afraid when it comes to tram vs powerchair, tram wins. The trains are pretty good, Metlink lists “premium” train and bus stations ideal for wheelchair access. Ferry’s can be a little tricky esp the first few times.
The public art gallery, museum and federation square are all accessible as are the many bikeways, parklands, the aquarium and casino. If he’s looking for something more ummm explicit, check out the Pink Palace, they love wheelies.
Stu probably knows already groups like Spinal Injuries and Sporting Wheelies regularly have wheelchair users who can show you around town. Let me know if you or Stu get back up this way Emma, I’d love to show you how I bounce around town here.
Mmmmm chocolate yummy. Quadriplegia from an office chair is an elite group but we all have one thing in common. It’s amazing how a split second can change a persons life forever.
Hi Graham, Stu did not come down to Melbounre…we could not find any carers…it was too difficult. I would really like to catch up with you…and help me prep for stu to come down another weekeend. Thanks, Emma.
Hi there, We were looking for quickie wheelchairs and came across your website. Thank you for giving your story.
Can somebody send/post a picture of a Quickie chair in Blue Opal color? We would like to see it before we order. Thank you, Emily
Hi Emily, I have owned both manual and power Quickie wheelchairs and loved them both. However, we are not a supplier. I’m sure if you ask at the Quickie website they will respond to your request. Here’s a Quickie color brochure.
We have been married 19 years, my hubby is paralyzed from the stomach down c7 incomplete quad. Sex has always been a major problem in our relationship. It has come to the point that I have to please myself and try and imagine him with me sexually. To be fair to him he takes lots of meds for pain makes him have NO sexual drive and I am in OVERDRIVE. We have only been with each other sexually approx. 8 times. I would love to be able to just pounce on my hubby when he doesn’t expect it but I only get rejected and laughed at. I think having problems in the bedroom really deadens communication in the marriage. I pray for a romantic intimate filled marriage, but I am slowly dying inside. I have tried communicating with him my needs and he gets upset and complains that is always come down to this. And that I should realize that he doesn’t/can’t do it. I have tried doing devotional books with him to help build a marriage but no response. I have asked him to get his testosterone tested and see if he can take anything to counteract the meds he is taking, he seems to always forget and procrastinate it. Recently I tried emailing him so he could have some time to think about his answers but he never responded at all. He is a great husband and father to our kids and I would never leave him because I value the vows we took, but it is getting extremely more difficult.
Do you have any suggestions for me? Things to try, say or do?
I am longing for companionship and intimacy with my hubby, but am slowly sinning as I am lusting at other peoples relationships and what i imagine goes on behind closed doors that doesn’t go on behind ours
THERE ARE ON THE WEB A PLACE TO MEET PARAPLEJICOS OR QUADRIPLEGIA THAT WANT TO KNOW A WOMAN FOR LOVE AND MARRIAGE, I ARE WOMAN VENEZUELA AND WRITE LITTLE LANGUAGE ENGLISH AND DESIRE MUCH TO HAVE A HUSBAND LOYAL FAITHFUL, DEAR GRAHAM SAY ME IN Email PRIVATE…. I BELIEVE THAT THERE IS MUCH MAN ALONE IN THE WORLD AND WISH A MARRIAGE AND IS SURE THAT BE FAITHFUL ALSO AND IS A GOOD MAN, BECAUSE IN THIS WORLD OTHER NOT BE THE CUADRIPLEJICO OF BODY IS FACING THE DYSFUNCTIONAL AND BE INFIDELS, MIND; THEN BECAUSE NOT LOVE A MAN WHO HAVE A CONDITION BUT IS WILLING TO LOVE AND MAKE THE MARRIAGE; FOR MY BEAUTY IS ABSTRACT IS THE SOUL AND IS NOT THE BEAUTY OF THE PHYSICAL
hi Tracie, I would say, “If you are not interested in me sexually I will go find someone who is.” Most C7 incomplete quadriplegics can achieve an erection. He is simply being selfish. It’s not like it’s going to harm him, shit he won’t even feel it, so tell him to man up. Turn the lights out and he won’t even know! Try stimulating him physically by rubbing his penis and be a little selfish, fullfil your desires. Tell him, “I’m not blocking your view of the TV so quit whining.” and hump him like a bunny rabbit.
i dont mean to sound INSENSITIVE to yourWHining but my father also had a broken neck from a car accident in which he had his seatbelt jimmied in his glovebox and slammed shut because his BUCKLE was broken he was also awake and fine at the hospital he was in a coma for nine months and the hospital for 9 years!!!!! my father was a fighter and tried his hardest to convince the dr.s and nurses that he could go home. He talked to us by slowly pointing to letters on an alphabet board.SO CONSIDER YOURSELF BLESSED THAT YOU ARE STILL HERE. AND CAN CAN TYPE YOUR LITTLE CRYBABY AUTUBIOGRAPHY.!! am I bITTER? HELL yes but blsming others who tried to be good people and SAVE YOUR LIFE ?ONLy to read this and wish they wouldnt have stopped. not cool Man up little soldier!!!
Melissa
Who are you directing your rant to specifically? I feel your pain but anger is self destructive. Your father indeed sounds a very brave man. I am sorry for your loss. However I trust you personally are not paralysed and it is VERY insensitive and wrong of you to try and discourage their writing. Life has given all of us a terrible blow, family members included and each and every one is courageous in their own right. It’s okay to cry too. My God wouldn’t you? I am sure your father would want you to be happy. Nothings Impossible as the late Christopher Reeve would say. Some people right now are in locked in syndrome … read “The butterfly and the belljar” Written by a man who could only “blink” the alphabet. There is always better or worse injured. I hope you find peace of mind. I too am struggling with that. prayers help me. take care of yourself.
Dear Graham,
Thank you so much for this wonderful and unique site you have created. I think the importance of it is immeasurable. I have found this site while trying to find answers to some extremely difficult ethical questions I encounter in my work and while trying to understand what the life of complete quadriplegic person is and what it can be at its best. And I got lost in this site for several hours.
I am the intensive care doctor and occasionally and right now again we are trying to save the life of unfortunate 57 year old man who has suffered complete C4 injury 2 weeks ago. He is ventilator dependent and likely will remain on it for the rest of his life or will need at least the life long tracheostomy for respiratoy care. The neurologic prognosis is extremely poor and the only movements he is going to have for the rest of his life is shoulder shrug and and everything above. His mind is completely intact.
Unfortunately we live and work in a poor country where there is not enough governmental budget to ensure sufficient work/time of home carers and to equip this man with high-tech supportive technologies like advanced computer driven wheelchairs and adaptive home furnishing. The life quality is incredibly low and almost completely dependent on financial status of disabled person. After short rehabilitation (maximum 3 months) these people usually are discharged to home where they are completely dependent on family and the life expectancy is just some months to ~ 3 years. This family is poor and nobody can leave the job to provide 24/7 care for this men – they are not going to be able to live on.
I feel it as unethical to push this man to make him through all the complications he is already starting to have. I feel it is difficult to justify the intensive and often distressing lifesaving treatment the only achievement of which is going to be just some more months of life full of suffering and sense of humiliation.
I do not feel it would be appropriate to ask the men himselves what he would wish to have and what he would not in regards to treatment excalation – he is still in the 1st “leave me alone or kill me” psychological phase. But I am afraid he will never have the chance or time to reach the next stages, regardless how strong he may be.
The comments, feelings and thoughts of any person with direct experience would be very helpful to me. I appologise in advance if I have inadvertently offended anybody.
Inga
hey graham, hows it going? I am a c6-c7 quad, but also had a brain injury. you mentioned things that help you through. I’m not one to preach, but I didn’t hear anything about god! there is a will and purpose for your life. look in to it, you won’t be dissappointed! also, since I woke from my coma, I was able to put words into sentences that kind of sound like poetry. take a look:
If there was nothing wrong, then nothings right!
Right?
If everything was good, then there’d be nothing bad!
Am I on the right track?
For every person mad, is there one just as happy?
I’d like to think so.
For every person that hates, is there one that loves?
I’d hope there are ten!
For every person that wastes their energy hating,
There is a gang of people who are stronger,
Waiting conquer his hate with whole worlds of love!
Hi Graham,
I am writing to you in hopes that we can get some help and advice. We live in the area of briabane, QLD. Y’see, my fiance Kristy, has just become a paraplegic, but I can see it is all a daunting experience for her. The thing is, she’s only 33y.o. and has 3 wonderful kids, (That reside with their grandparents)but wishes that she could still have the ability to run around with them and myself when we go to visit them in Christmas. She keeps telling me that she doesnt feel ‘normal’. I dont know the emotions and thoughts that are going through her at times, but i can see that she is becoming more and more depressed each day.I really would like to see her smile again. I write to you because I am wondering if you might know of any support and/or counselling groups that we can go to, to help her. We also are doing a course in Bowen hills, with careers Australia, for a diploma of business, to hopefully one day open our our grooming/daycare salon for dogs and cats. So kristy is also worried about going back next week, as well, and about how they might react to her ‘being on wheels’, as she puts it.
Anyway, I just thought to maybe ask you and see what advice you might possibly offer her. Thanks for hearing me out.
Jason & Kristy
Thanks,
Jason & Kristy
jason and kristy. my husband is a quad c6-7 i am a dog groomer and i can tell you that the animals will be fine with it!! i board train and groom and breed out of my home and none of the dogs take much to adjust to him. for that matter i have horses too and even a animal as flighty as those take fast to it!! we have recently moved to a place w. a pond and my husband chase loves to fish but to get to the pond you must go threw the woods, and as i am sure you know wheel chairs and woods dont get along well. so iv come up with a solution to having to tire my self out dragging and pushing him and his chair threw the woods.. we have a miniture horse and i hook him up to the horse with the ropes going over his foot rest and attatching to the axel under him and i lead the mini and it pulls him no prob threw the woods. my point is some modifications and such but you can do about anything you want just differently and animals esp have little to no prob adjusting!! my hubby even helps me groom and such!!
Jason, my response to Kristy would be you were never “normal” as nobody is. Most people want to be noticed. It’s why some girls change their outfit three times before leaving home. A gentleman will open the door or pay a compliment. I was terrified to even go onto the veranda of the Princess Alexandria Hospital spinal injuries unit three months after my spinal cord injury. I was facing a whole new world out there.
Negativity is contagious. Give her room to live through depressed days. Best treatment is to stay positive yourself and let her know you are there for her no matter what. If you want to see her smile you only need smile. There is an extensive list of spinal cord injury resources on our forum. In Brisbane I suggest the Spinal Outreach Team (SPOT). A core group of professionals who have supported me in many ways. If they can’t help they will put you onto someone who can.
Thank you Graham,
Kristy is still finding it hard some days, (Like today, for our class assessment, a bbq by the whole class, and it was complete havoc)And there are the good days, which are becoming more frequent. But yes, she is starting to ‘come to terms’ with her situation, as she likes to put it. I know that there will (undoubtedly) be more bad days yet to come, but there is also the good days that she looks forward to, days that we can go out to take care of the shopping, etc. But we thank you again, as Kristy saw your message and the information that you wrote, after I showed her what I had done to help her see that everyone has to accept change, may it be tomorrow, or at least a year’s time. She says she now welcomes the ‘heroes’ that let her see that they can still be able to get out and about, and one day, wants to be able to say she wants to go out and not mind. But for the moment she says, ‘It is hard, but give me time, I will get there’, and I believe her. Cos she said this after seeing your article above. :-) So thank you again, you have helped me restore her smile. Kristy is now seeing that she is just like everyone else, but ‘special’ as she and her youngest daughter put it.
Thank you again Graham,
Hi Graham and others
Been reading through the posts and I’m inspired to share my story
On April 22 2009 my life changed forever. I was going through a real rough time with a relationship and life in general. I made a snap decision to end my life right then and there.
I took a knife from the kitchen, went into the bedroom, held the knife upright and laid my head down on it. I cut into the skin and then cut into my spinal cord resulting in C1/C2 incomplete quadriplegia.
I laid there for 6 hours wondering what the hell had happened because I was able to move my right side of my body but not the left side. My ex partner found me and she called an ambulance.
I was taken to the Royal Melbourne where I was assessed. It was found I have no feeling and limited movement on the right and feeling and no movement on the left.
They operated on the affected area to stop the spinal fluid leaking. I spent 3 days in ICU in an induced coma. I was then transferred to the Austin Hospital Spinal Care Unit. I still wasn’t able to move left side at all and being left handed made everything difficult. However over the next 3 month I regained movement on the left side to the extent where all parts move and the right side still couldn’t feel. I was able to stand, walk with a physio behind me, feed myself and type on a laptop with both hands.
I then spent 3 months in rehab at Grace McKellar in Geelong. Here I continued to improve but needed a manual wheelchair to get around. I then moved to NSW with my parents, then to QLD and finally back to Vic in March 2011.
My parents still live with me. I have carers who get me out of bed (I stand normally), walk me to commode, shower me, dress me and walk me to the lounge where I sit in a lounge chair. I can stand from this. Carers then come and do my lunch and tea and to put me to bed. 3 seperate people at different times of the day.
I have a nurse who does suppository every 2nd day and changes SPC once a month. I do occasionally void from penis but this is involuntary as I don’t feel it. I can also feel a little of my rectum and have passed bowels without suppository.
I am still able to walk indoors with a person behind me and also walk to the car. I require my manual wheelchair outdoors though.
That’s pretty much my story. I feel a little better now I have shared
Thank you Graham (and other peeps here) for an education.
I’m not a freak looking for kicks in any way. This is a geniune enquiry. I’m a fully AB person. I have recently completed a book called Me Without You by Jojo Moyes (google it). Essentially it is the story of a girl (Lou Clark – I felt I understood her, she’s a bit dippy!) who is hired (without any experience) to be the companion of a once fit and virile young man who before an acciden,t led a very big life. He was a high flyer who worked in the City, adrenalin junkie, good looking, had a gorgeous girlfriend, led the big life in London, etc. Been in the wrong place at the wrong time left him a quadriplegic.
At first I thought, ugh, chick-lit. But no, it is not a conventional story and they don’t go sailing off into the sunset and live happily ever after.
My point I’m trying to make is that I always thought I was open minded, but this book only highlighted my own prejudices and in a way embarressed me! I always thought it was very black and white, in fact, it is a complex, delicate world in which non-abled bodied find themselves in. I’ve never been cruel or unkind (simply not in my nature), but as said, the point I’m trying to make is that I realised (and hopefully other AB readers of this book) realised, that this is a complex and not so black-and-white as previously thougth.
Saying that, the book had some real laugh out moments and one-liners (I identified with Will Traynor’s sarcastic sense of humour). There is a moment in the book, where the main protaganist (Will Traynor) quips to Lou’s boyfriend ”she gives great bed baths”. I chuckled out loud. It was at that moment I stopped looking at him as a quadriplegic and just as someone who was really sharp, witty and funny and really knew how to delivery an excellant one liner very timeously.
I’ll be honest, the book ends with the main character Will going to Dignatas in Switzerland – his choice, his choice that he felt it was the only thing he had control of. As said, I always thought of myself as open-minded and used to think, well, if that is want someone really wants, then they should be allowed to do as they want. But its not as simple as that, this book showed me that. This book really helped me open my eyes about a topic which I never really thought (I don’t mean just Dignatas, I mean quadriplegics and paraplegics and how we perceive as ”limited” and less of a human being), I also mean, what life is for non-AB people.
I think what really got me about these ”characters” is that they geniunely did fall in love. Not that Hollywood cr**, but the book makes the reader think, well, what is life worth living for? It is about the friendship between these two, how two complete opposite characters were the only two in the world that could actually understand each other that even despite, on paper, they shouldn’t, they do and did. It made me sad when Will said to Lou (when she told him she loved him and she didn’t care about the chair), he said ”Its not enough. I can’t be the man I want to be with you”. He didn’t want pity, he wanted to be who he was before. This really hurt Lou because she thought the fact she told him she loved him, it would be enough. I thought it was incredibly brave and frankly, selfless, that he ”rejected” her. He didn’t reject her because he didn’t want her. He said no, because he couldn’t be himself, he felt he couldn’t be himself.
I wouldn’t mind chatting with anybody who is/was in the similiar position as the main character as Will Traynor – hopefully you are leading a full life, I don’t know, this will be an educational process for and to be honest, occassionally I’ll probably say something highly inappropriate or an un-PC one liner, but that is my nature, I would also try to be sensitive.
This is not for kicks, this is not for some freakshow, but just a geniune message from an AB wanting to understand, wanting to communicate with somone, just communicate and understand. I can’t get these characters out of my head – yes, I’m aware that there is a massive differance between characters in a book and reality – I’m not stupid.
Honestly, I am geniunely interested, just trying to understand and educate myself. I hope to hear from someone soon :)
On August 5, 2112 my son Cory was in a quad accident. He is a C3 and he is currently a quadriplegia. He has never gone on a trek but he has not regained any movement yet. Is it too soon or is there still a chance it might happen. The doctors are very discouraging.
Diane: It is to early for any of us to be making that call just yet. Quadriplegics even at the high level of C3 may regain function and/or sensation upto five years post their initial spinal cord injury. Though typically most if any improvement is made within the first three months some two years post injury and then some five. It’s important not to place emphasis on regaining rather help your son accept today may well be how he is for life, and that it is ok.
i loved reading about your story and how u over came your injury, i really wanted to comment on the part about ur girlfriend and finding love again, ur 100% right about not finding love if u cant love ur self no matter what, disabilty or not, but keep ur head up there r fun loving women who will see right past the chair and just see you, as someone who is soon to b married to a quad with very limited function as well he is the light of my life and we have lots of fun together, your story along with many others i have heard r very inspirational.
I am a paraplegic as well, a thirty-six year post SCI. I have written a book entitled “Inspiration Through Hope.” I would like to disseminate it to paraplegics and others searching for another tool to assist us in successfully managing this malady a few days longer. My impetus is gratuitous. It is copyrighted by me and I plan to give it to all concerned.
Possibly you would be interested in taking a few minutes out of your daily life to read it and consider dispersement.
Windows friendly: Macintosh friendly:
Thank you for your time and assistance,
Gordon Kenneth Page
***It appears I am unable to send you my book through this format.
Hi Gordon, We don’t allow posting of any personal contact info on our website. You can offer it for download to members through our forum.
Hi Graham/Everyone~
I am new to this site. Graham, thank you so much for sharing your journey. I find it very inspiring. My son who is 25 became a quadriplegic in August 2012. He is active Navy. He was stationed in Hawaii @ Pearl Harbor. He was on leave & my husband & I went to visit him. We were island hopping for 10 days. On day 5 of our trip we were on the beach in Kauai & my son was walking into the water with a boogie board in his hand holding up near his head when a wave hit the board with such force it broke C-3, C-4 (burst) & C-5. He is considered complete Asia A. He has feeling at every level on his left side to light touch & to nipple level on the left side. He is able to shrug & roll his shoulders, he can lift his head and shoulders forward pretty well. He has some function in his bicep/tricep on at least the right arm. I was told last week by his Dr. that he will not get much more return at this point. My son has had a lot of lung issues & is still being weened from the ventilator & I feel like the last three months has been spent focusing on his lung issues & that he has just begun physical rehab. I am disheartened by what I have been told & feel like it is way to soon to determine. Anyway, I will be his primary care giver & need any information & encouragement possible. Also, do you have any gift ideas for him for Christmas?? I am interested in knowing what cell phones would be good that are completely voice activated or are good with a mouth stick. He currently has Droid. He mentioned the Samsung 3S. Anyone have suggestions. We already have the Dragon installed on his computer & he is currently using eye gaze at the Rehab hospital. Thanks for a place to talk, vent & feel not so alone.
Many never realise how life can change in the blink of an eye. Aquired at birth, a ball of fire car wreck, or some other high impact traumatic event, are mostly how the public think we come to be in wheelchairs. It never ceases to amaze me just how little it does take Jennifer.
I can’t tell you if the nature of injury has a big impact on personality after injury but I can tell you being his primary carer will on both of you. I full well understand a mothers will to be nurturing and it is a noble selfless instinct but I caution against taking on to much. As you read in my story, the less you do for him now the more others will have to. Just keep that in mind.
As for gifts I would like the latest Samung thankyou lol. I’m not a big fan of voice activated phones but most have that functionality. Unable to regulate his body temperature a thick blanket or one of those heat in microwave packs for his shoulders or a remote control heater/fan be a good christmas presaent. Most guys straight out of hospital just want to be treated as before injury so buy him what you would normaly buy.
My sister was in her accident 17 years ago. So wish she had been as determined as you to live a full and meaningful life. Now she barely gets out of bed a handful of times a year and lives a lonely life. She crys a lot and is on medication for depression. She is a beautiful woman and has much to offer. Just doesn’t seem to have much hope or know how to find happiness. We are planning a family vacation this spring and she seems to want to go. But her body is not used to getting out of bed or sitting up. She has begun physical therapy after years of doing nothing and is struggling. Any ideas on how to help her? I want so much for her to be happy!
Hi Little Sis,
I saw your post and wanted to get a little more info from you. What level is her injury and who is taking care of her? Depression meds can help but she needs to make the effort to help them work. Isolating herself from others won’t help her depression by any means and if she’s been isolating herself for 17 years she has to make a real effort to reach out and accept her life as it is and learn she can do things and her world is not over. Unfortunately, you cannot do this for her it’s a decision she has to make herself. As far as PT, the same thing.. you can encourage her but she needs to do the work. Unfortunately I dont have a quick and easy solution for either of you. Be there, support her, do not enable her to stay in bed all the time.. you cant make her get up, but you can make sure you dont do everything for her. Its far past the time she should learn what she is capable of and to do the things she can. I know you want her to be happy but she needs to choose to be happy. The best thing I think you can do, and this is just my opinion, is tell her you love her but do not enable her. Her PT is going to be rough as she hasnt done it in so long, so love her, be there for her, but remember she needs to make the choice to live again… maybe it’s time for a long heart to heart talk with her??
Hi Graham,My son was involved in a car accident Sept.2012. He received a c4 complete injury and is a quad. Ha has limited use of his arms, no wrist or hand use. He uses hand/wrist braces with a pocket sewn into his right one. In this he can slide in a stylis to use on his computer or phone. Works great. Our biggest problem is his low self esteem and he is unwilling to talk with anyone who has been through this saying” they are not the same and nobody knows what I am going through.” He is a young 18 year old man. At this time is under our roof but has plans for attending college. I just want him to talk to someone and try to find a career. Am I pushing to hard to early? I just want him to feel like he is contributing to the world. He was a workaholic before the accident.
Hello Steve, I do think you might be pushing things to hard to early. It has only been five months. Many at 18 take that long to get over a girlfriend let alone losing their life. Especially a guy who’s life’s work was his hands. It is much harder to accept. A couch potato will almost be glad and use it as an excuse to do nothing. That is not your boy.
He needs love acceptance and patience. His injury, like any spinal cord injury resulting in quariplegia, really is unique to him. I was just like him Steve, gifted hands, took me years to realize quadriplegia was not a flaw. It actually made me a stronger man than most today. I still use my sewn pocket to eat and brush my teeth. His ambition is inate. Give him that and he will find his future when he is ready.
Graham,
As a recent CNA graduate, I am blessed to have been “chosen” to interview with a client who is “quad” , as he so lovingly identifies himself.
I do have a lifelong history of “care” giving to a sister who has been inspirational in my life , as she has Spina – Bifida. I suffer not even a headache when I am around her through her spirit and will to overcome her disability.
I was wondering if you could email me personally in my search for answers to personal questions not fit for the format here in regards to my interviewing this client in his needs.
Thank you for your consideration
Scott Beaver –
Hi Scott, you can private message me after making a post in our forum or by using the “Email Admin” form below.
G’day mate
I’m lucky I’m in a chair as a result of severe pain from Arthritis in most of my body.
How do you get a chair to go like 22 km/h, I’m in a very old vibe that I was given by a lovely friend but like 3 kmh maybe. I am a big boy 6’6″ and 100 kg. unfortunately but some would say lucky can only work about 6 hrs a week. Most of my time is spent curled up in the fetal position drugged off my head for what little relief I can get.
Is there somewhere that helps with funding a decent chair, or how does antone afford one by the time I fork out over $100 per week on meds and Drs visits it is insane.
Man I’m raving sorry too many meds.
I’ll try and get on when the brains working.
Thanks for the site that reminds that there are better days and lots of people worse off than me, at least I can walk about 5 metres before I collapse in agony. Hoping NDIS might provide some assistance.
Because I’m not quad or para plegic there’s no real support.
Man a chair that went even at 12 k would get me about four times as far before I have to stop, can only sit for so long before the pain is too much.
I don’t know if I’m sad or glad that Aus has such tight gun laws, when it’s really bad I’d bight a bullet at least once a day, when I’m right I know that at least some people would hurt if I did it. Have tried drug OD but just threw up.
Thanks man
Hi Graham. My name is DenniS from Texas USA. I am also a quadriplegic. I am thirty-nine years old and was paralyzed ten years ago with the illness that is rare. Living with quadriplegia is very hard and emotionally consuming. My ask quick daily routine you have? I live in a nursing home and require round o’clock care. Do you have any suggestions on how to find resources to be in a normal wheelchair accessible home or apartment? I am very unhappy living in these homes. Becoming paralyzed at a young age is very devestating, I wish this wouldn’t of happened to me. I quess a person deals with the cards your delt. I saw you mentioned your mother in your post. My mother is definetely over whelmed by my paralysis. My mother is cripped, and can barely walk. I just hear that you find peace everyday you wake up. I’d like to friends. You are my hero! The reason is you never give or gave up.
Graham,
I just found ur site and am amazed at the strong man u r!!! My quad life seems to have gone backwards than most. I was in a car wreck in 95′ that left me C4-5 incomplete. I was 28 yr when my husband and me had wreck. We have 6 kids among us. I went from full time wife, mom, nurse, dr, whatever my family needed 20/7 to a woman who could only blink I Love You!! I never felt paralyzed caused Bo (My hubby) never let me be paralyzed. He was an amazing guy, from getting me a nice chair, front washer/dryer, applying for any and every grant, to telling me I’m the same lady he fell in love with; I just do things in a different way now. But his dad passed away 3 yr’s ago and the day he did; I lost Bo…..He’s still in a bubble and I can’t touch him. He kicked me on streets and I went from homeless to now getting on my own but it’s the 1st time in 15 yr’s I feel paralyzed and alone. My DSW workers and kids are here but u know…..I don’t go anywhere and my kids r my friends. I’m a strong woman and get up everyday!! I WILL NOT LET MY KIDS FAIL!! Which means I can’t…..But wondering; any advice on starting over at 47 quad? Can’t talk to kids, or DSW. Being agoraphobic I don’t go outside my home. I only go outside twice a year to doctor. (Was like that before wreck. Just worse now.) Cry when I think about divorce; but he won’t even text me……Just feel alone. Thxs for listening to whining, Laura
Hey Dood!
I was looking for Quad supports for a client. Yeah I be nursy man.
She is a quad and needs some support.
I read your story and it hit home how lucky I am
Did the big Banger on my GS1100 in 99.
I was/am an Iron Butt Rider and was heading for the Last Wilderness Rally in Nome Alaska from my home in Pennsylvania USA. A fast 1500 miles I had given myself 3 days. Easy ride for a guy who did 1730 in 24hours.
Well did not make much past the second day as was hit-n-run
Every one tells me I am so very brave and have a “Great attitude” since I have 45 bits of metal, Contractures and a L AKA. But I stump around on my prosthetic.
Keep the wheels spinning.
Pete
I wrote in here a year ago. What a year I have had since. It has had its up and downs but more ups then downs.
Found an amazing woman 6 months ago who along with her 2 year old son are my family. We are engaged to be married.
I’ve been applying for jobs back in IT as a QA Analyst. I completed a Certification in Computer Forensics and found an amazing home based business opportunity that I know will be a massive income and have me financially free. I’m grateful for this company who have helped my personal growth immensely. I’m never seen as a number or a guy in a wheelchair, I’m considered an equal, even among the successful people who there are many of.
I’m also now an Assistant Coach/Bowling Specialist Coach for a local cricket club.
Your life doesn’t end just because you end up in a wheelchair. If anything, it’s a SECOND CHANCE at LIVING!
There are wonderful stories, positive and wonderful stories, yet no one is writing about the other side of the fence. My mother is 75 years old, and was healthier and more vital before she fell in March 2013 than a 40 or 50 year old. She now has central cord syndrome and due to her age, she is a full quad from neck down, as the little tiny movements in her fingers are no stronger than a whisper and cannot operate anything, nor is she able to grip anything. Her life has been stolen from her and is a living hell. On medicaid/medicare, and with no money and our family consisting of 3 people, one being our mother, there is no large support system and medicare/medicaid pays for nearly NONE of the expert, extremely important things that she needs. Her depression is huge, her pain is incomprehensible, fire like pain throughout her entire body all day long, in-between severe muscle spasms, and the only thing that stops it, is heavily medicating her, which makes her a zombie and causes her fear based hallucinations. There is not ONE hospital in the major metro cities (she’s in NY) that are setup and prepare for quadriplegic care – the 24 hour type of care that’s needed, so each time she goes into a hospital, which is becoming more and more as of late, she sits dying of thirst for hours at a time, cannot ring for a nurse, cannot scratch an itch, cannot cover her nose if she sneezes, cannot pick up a phone to call her children or a friend, cannot answer a phone, cannot eat on her own, is completely humiliated at having medicaid aids at home, and hospital aids in the hospitals, seeing her naked, having to change her diapers, being in diapers at all – tossing her from side to side like a 200 lb wet fish (she only ways 100 lbs), as they change her sheets. She is in going through a living hell that God has shown no mercy on, as he should have taken her and not left her to live in the physical, emotional, mental and spiritual agony she is in. All of your stories are wonderful, but there is a very ugly, dark, heart wrenching side to quadriplegics and those needs to be known as well. We don’t have a wheelchair accessible vehicle for her, she doesn’t have a PCP that’s equipped enough to manage her care and constantly check her for possible infections in which she is very open to getting – she is in a living hell and there is nothing that can be done to turn her situation into any of the positive situation written above. She cries and cries and cries, she can’t stand the pain, yet she’s sick of being doped up on drugs, yet can’t live without them. Her wheel chair is not automated, medicaid/medicare pays for the very minimal items. She developed a bedsore, that now, after 5 months of having her life stolen from her – has now (today) left her with a large flap surgery, a month ahead of wound care hospitalization that’s a top notch wound care facility, but is not equipped to handle someone who cannot move at all and needs every few minutes care, and will now not be able to sit up for months upon months while her flap surgery heals. Countless quadriplegics, especially the older ones, are left without a life, without options, without proper care, without proper equipment, without support systems around them, without help – and they are dying inside, as is my mother. :o(
Hi Kimberly, it is incredibly frustrating when there is little you can do to help. Other than phoning any and everyone seeking support spending time with your Mum is the best you can do. As we age dignity becomes more important and unfortunately with acute paralysis it’s stripped from us. You become just another number to medicare. Beyond the pain and other things her spiritually is a concern. It’s not all about a fancy bed, best nurse ever, and view from your hospital room. With acceptance comes peace. The human spirit often shines brightest when we hit rock bottom.
Hello, my name’s Kimberly. My mother is a 75 year old quad, who this past March, was a vibrant, full of life, extremely healthy and more energetic 75 year old than I am at 48. She slipped and fell in my home while visiting me in FL and had a C3 – C7 injury (central cord syndrome). After a stabilization surgery here in FL and a month long fight with her insurance company to fly her home via ICU Air Transport, which they refused to pay, so I took up donations and finally found a way to get her back to NY – she returned to NY, went through a month of rehab at Rusk Rehab, a well known rehab, but had very little improvement. Her injury coupled by her age is working against her. In any event, I had a question and don’t know where else to turn for this answer.
My mother developed a terrible bedsore while in a nursing home for one week (my sister and family immediately pulled her out and brought her home in less than 5 days). A wound care specialist had been coming to their house daily to care for it, but it wasn’t getting better and being on her very lower back, sitting had become impossible, the pain was horrific on top of all of her other injury related pain. She just sent in this past Thursday for a flap surgery, which was very successful; however, she now needs to go into a wound care acute hospital for 3 weeks (drains, etc.) and we are up against brick walls everywhere. It has come to my attention that there are NO hospitals in the NYC area, or any metropolitan areas, that can actually treat secondary injuries or illnesses for quadriplegics. In every single hospital my mother has been in since this happened (infection, bad cough, now the wound), it seems that there is not enough staff, not enough compassion, not enough training, not enough expertise and zero knowledge in the type of not only care that a quad needs, but the type of constant attention that they need. Last night, upon arriving at the hospital at 8pm, my sister found my mother (who cannot move at all from her neck down, yet is of 100% sound mind, making this so very sad for her), was crying – she was starving. Her food was delivered at 6pm, but NO ONE came in to feed her. Her mouth and throat were nearly closed from cotton mouth due to her meds, and NO ONE had come in to give or offer her water, ask if she needed anything. She was also in great pain and NO ONE can come in to give her additional pain meds. They hadn’t repositioned her in 4 hours, and she must be positioned every 2 hours under normal circumstances, but after the wound surgery it’s actually urgent, or her wound can reopen, they hadn’t checked her drains or her foley. My mother was devastated, scared to death, feeling neglected, shown no dignity, respect or care. This has been the case in every single hospital she has had to go into since her injury in March, each time a secondary issue came up causing her to be hospitalized.
My question: Where do Qauds go (hospital wise), when they have a problem, unrelated to their paralysis, where they are given the appropriate care and attention from knowledgeable and expert staff members who know how to care for a quad? I’ve searched and searched and searched and I can’t find that any hospitals at all have a floor for paralyzed people. Rehabs? Yes, but under normal hospital environments no. There’s cancer floors, cardiac floors, this floor and that floor – but NO floor for paralyzed patients that need to be in the hospital for secondary reasons (infections, wounds, breathing problems, broken bones, anything). Where do you go, any of you go, if you need to be in the hospital, but also need to ensure that you are cared for on a constant basis, if you cannot move? We cannot afford a private aid to be with her, so what do we do? On Monday, they are discharging her and moving her to a wound care facility, which she needs, but that facility has never had a spinal cord injured patient before and will not, as none have, understand or give the constant care and attention she needs – she’ll be neglected again. What do we do? Where do we go? How is it possible that NONE of the major hospitals have a floor that’s specific to paralyzed human beings who need to be in a hospital for other reasons?
Any information you can offer would mean the world to me, my family and mostly my mother.
Thank you so very much.
Kimberly
I got a question dats really worri.g me im a t2 22 yr old girl .i just fpund out im pregnant n me n muy boyfriend r really exited but im a little scare ..i have a girlfriend dat is also in a wheelchair ..she lost two bbys before she had her little girl..i wanna know if because of my injery im most likely to have a miscarigge
Plzz ansewr plzz
I have a therapy dog and visit a facility in which a few 20 yr olds have quadriplegia. They have no hand/ arm movements at all but use their mouth to move their wheelchairs and can speak. I’m in my 60s and retired, so I decided to have my dog certified for therapy and visit people with disabilities. These young people are very intelligent, but quiet. How do you suggest I build up conversations? I can ask what they like to do, hobbies, etc – but at this point, they may not have any they feel they can do. I’m very talkative and friendly myself, but get stuck and do not want to say the wrong thing.
Hi Patricia, I wouldn’t be concerned about saying the wrong thing. Most quadriplegics are happy to talk about their accident, what they can and can’t feel, how they now function, what they miss most, past present and future, loves hopes and desires, etc. Being young technology and top 40 pop music are popular subjects you can easily read up on or go in blind and learn from them. Consider getting an iPad or Samsung tablet as a great ice breaker.
Hi Kimberly, It’s called an SIU (Spinal Injuries Unit). Not all hospitals have them and they can be difficult to get into for secondary injuries unless you make a big fuss. I don’t know how many times I’ve told people with a spinal cord injury if they are not getting appropriate care in a general hospital ward they need to demand it. Be vocal and educate the nurses and staff as to what care you need and why. Most are more than happy to learn and the next quadriplegic who gets stuck in there will benefit from your efforts. Ask for the social worker attached to the ward to explore other options like external spinal aware nurses and carers from charitable organizations coming in to assist dear Mum as well.
I once had a nurse put my medication on a bedside table and walk away, upon return she said gruffly, “Not taking our meds today?” I replied, “I would have if my arms worked.” Have had a washer used on my bottom stuck straight on my face, leg cut open removing a cast, drainage bag tucked under the mattress changing sheets, woke to a dementia patient peeing on me, you name it. But I’ve educated hundreds of nurses who will use their new skills to help hundreds more.
Sorry for the delayed reply Kimberly, thought I had already answered.
Hi Graham I am currently doing a paper on quadriplegia. Your story was very touching you really inspired me. I have full function of my body and everything but this story inspired me to push. There are many time that I feel like life is dealing me an unfair hand but I read your story and you’re able to play the cards you were dealt rather with your head high(getting throught it) or hanging low (during the first two years). Thank you so much for sharing. This is confirmation that nothing should get in the way of the things you want to do. God Bless you Graham.
Graham, a salute to what your doing and your positive attitude. Thank you for being such a great inspiration! A mention here http://makeitbeayoutiful.blogspot.in/2013/11/love-life-in-all-its-hues.html
Hi Graham!
Hope you can shed some light on my marrige. My husband fell 28 feet and broke L7. He is paralyzed from waist down. This happened 5 years ago. I am 37 and he is 41. We have been married for 19 years and have 3 kids. The last 2-3 years he has been wanting sex everyday if I let him. He was never like that and he always just wants to satisfy me. I hate it because he makes it like a job I Have to do. He says that he is satisfying himself and me but I just don’t want it!! Once or twice o month is fine with me. I work o lot and 3 kids and everything else keeps me wert busy and tired. I come from a 12 hour shift and there he is waiting. We have fights about it all the time. I love him very much, he still is a great father and a husband but this problem is adding more to our relationship. I told him I hate it and he says I am lying. I don’t beleive in divorce and want to fix this and don’t know where to turn or do. Am I wrong??
Hi Angelina, it sounds like the real problem is communication. He is not listening to you. To suggest you are lying is selfish and disrespectful. As Adam Levine sings, “It’s not always rainbows and butterflies its compromise that moves us along.” Try to find a way to get him to listen. Use words like slave and prostitute, that you’re not an inflatable doll you have feelings. That you love him for his heart and soul not his penis. Besides, if its so important at the end of the day he can always please himself. There is nothing wrong with masturbation.
Hi Graham,
I’m 25 years old and my mother just became a quadriplegic. On December 4, 2013 she shot herself and the bullet lodged between her C3 and C4 resulting in paralysis. She is only 44 years old. She just got moved from the hospital to a rehabilitation facility where their main focus is weening her off the ventilator. I’m trying to learn as much as I can as quickly as possible so I can do everything I can to give her the best quality of life but it’s so hard because the doctors and case workers have to notify you of every possible scenario and you have to somehow be prepared for it all. Only 3 weeks ago, weening her of the ventilator seemed like an impossible task but they started 3 days ago and she’s actually been breathing some on her own. Where we go from here is all based on her progress so ii don’t really know what exactly I’m trying to ask but is there any advice you may have? I also have a 3 1/2 year old little sister so I hope my mom can progress enough where she can go home but financially it seems impossible because she will require 24 hr care. Are there any organizations you know of that I could apply for financial assistance or grants? I just want to be able to give her anything and everything to make her life easier and so she can one day be able to do something for herself. Her anxiety is so bad right now and I just feel awful that she feels so trapped and helpless. I know it takes time but I just want to make sure I’m doing everything I can so she can progress as quickly as possible. Any tips would greatly appreciated.
For Jesse-
You may want to research if Public Partnerships, LLC offers services in your area. This is the company I work for with client who is a c3/4 quad. They pay CNA/attendants for his care. The website is : https://fms.publicpartnerships.com
I hope this helps in some way for you and your mother
God Bless
Scott
Hi Jesse,
First let me say that my heart goes out to you. God bless you for being there for your mom and your little sister. Giving your mother a great support system will help her go along way in her healing. Keep encouraging her to work hard and just let her know you love her & that you are there to support her. Make sure to take time for yourself. It is very easy to feel the need to make everything about your mom but unless you take care of yourself, you will burn out quickly. GO spend some time with friends, go workout, go to a movie, get a massage. Anything to give yourself a break. I don’t know what State you live in but check with the county that you live in. They may have a program that can help with home care. There are a lot of resources available but some are State specific or are based on your circumstances. You may have to make 100’s of phone calls to weed through which programs will help. I have just spent the last 18 months doing this myself for my son who is also a C4 quadriplegic. I think the leg work finding aid has been by far the most stressful part of this process after getting my sons health back on track. Keep positive regarding the ventilator. They told us our son may never get off the ventilator but after several months of weening he was finally able to get off the ventilator and has done amazing ever since. Due to your mom’s age it may be a more difficult task but if you give her positive support she will find the strength to be successful. Best of luck to you and your family.
Thank you so much for the tips Scott and Jennifer!
I’ve definitely been trying to keep myself into a routine because initially I was at the hospital constantly and it does wear you down very quickly. However, my mom is in South Carolina and about a year ago I moved to california for a job. I spent all of December at home with her but I keep coming back to california to work a little and then go back but I’m doing all her planning, finding aid, etc. from here and when I’m not there my family members or the nurses FaceTime me so we can see each other everyday. At first they gave us little hope for her getting off the ventilator but she has been doing surprisingly well so far. I hope that she continues to progress because it seems like it’s so much harder to find places that will accept people on ventilators and going home with one seems even more difficult. I’m just going to keep positive and do as much as I can to find the assistance we need! Thank you both again for your advice! It’s really comforting to talk to people who know exactly what you are going through!
Hi Jesse,
So much in the US depends on insurance and what they will and won’t cover. As she;s still inpatient, work with the social worker, nurses, anyone whose ear you can bend and see what resources they point you toward. Don’t be afraid to be pushy and don’t feel you are a nuisance. Frequently the squeaky wheel theory proves true. In Ohio, many services are authorized at the county level and it’s quite difficult to get through to the appropriate staff and have them understand your needs. See if you can get the email of someone in administration and hound them when it becomes more clear the specific services you will need.
I’m g;ad the nursing staff is accommodating about face time. It’s so important to remain in the loop and have your mother know you are there during this very difficult time.
I have to reiterate, take time for yourself. You can’t manage the world solely on your shoulders, and it can be detrimental to everyone if you try. I think respite care should be covered by insurance because it can be tiring, frustrating, and exhausting :) I’ve recently gone back to yoga to work on my own breathing and guided meditation for relaxation which is a huge help- I need to eat, take care of me, etc.
or I’m no help to my fiance. Keep your chin up and know we are here if you need to talk, have questions etc.