Caused by disruption or injury to the spinal cord between C1 and C7 quadriplegia, also known as tetraplegia in Europe, is a traumatic life changing event. I’m Graham, founder of the Mad Spaz Club. At 26 I knew 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 16 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’s no barrier to living a full happy positive life.
Before Living with Quadriplegia
My Kawasaki and Suzuki Katana 650 Motorcycles
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
Side X-ray of Titanium Plate & Screws holding C4-C7 and hip bone block together
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
Front X-ray of Titanium Plate & Screws holding C4-C7 and hip bone block together
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
Broken Clavicle & Dislocated Shoulder
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
Brain lesions and fractured mandible
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 16 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.”
Wheelchair Heros Are Made Not Born
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.
Graham of the Mad Spz Club
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
Graham, What a wonderful site you have created here!!! I am a paraplegic due to neurofibromas (tumors) on my spine at T5. I have used a wheelchair for about 9 years. It is great getting to know others in the same situation, it makes you remember you are not alone. I live in a small village, so there is not a lot of others like me around here that really truely understand. Anyway keep up the great work you are doing here and the wonderful uplifting personality you have!! – Suzie
There is noway your quickie p200 or any electric wheelchair goes 30kph, u might want to change that to 12kph. cheers gr8 site
Hey Suzie: Thank-you, that’s exactly why I opened these pages for comments. I get a lot of email from quadriplegics, paraplegics their family, friends, partners. Most I responded to then thought if more could read these questions and answers it could help others.
Believe me you’re not alone, one third of the population has some kind of a disability, or cares for someone who does. Most turn that disability into an ability without even realizing. When you see a blind man feeling coins to pay the correct amount you stop and think thank God I can see. He hands the exact amount over you think wow that’s pretty cool. You too can have the same impact on people. So keep smiling and show your ability.
Hi Steve: Sure it does! Did you read I’m an electrician? I know how to rewind electric motors. Helps if you know someone with a program box too. We programmed the standard p200 up to 98% straight line speed at the sacrifice of torque. It did about 22kph. I didn’t notice much drop in speed going up steep hills and backed upto a brick wall could still smoke the tyres. The standard p300 at 98% is faster around 26kph.
I’m in a Quantum Vibe these days. Piece of shit two pole motors. First night out I folded the swing away footplates up underneath it. Put more solid drop-footplates on, still way slow at 14kph and speed drops significantly uphill. I was told four pole motors were becoming available, lies!! I’m not going to bother rewinding pissy two pole motors. I should have gotten the Blast wheelchair standard with four pole motors. I’m told it’s faster than a p300.
I fitted a tilt seat on the Vibe which reclines me to 55 degrees taking pressure off my butt so I’m reluctant to get rid of it. You can’t put tilt on the p200 but I still have it. A mate wants to cut and widen the front forks allowing fatter tyres and lathe two new hubs bolting fats on the rear too. It will be my beach, all terrain wheelchair. If we ever get around to doing it I’ll post pictures, hell I’ll take video of me going 30kph in it.
I trialed the blast did the same as you folded the footplates under it, hated the plastic look and it was to big & clusy 4 me so i bought the quickie p222se haven’t looked back, its a bit higher than the p200, hey do u still have the p200 i need some spare parts? willing to pay 4 it sorry missed reading you still have the quickie p200, want to sell it?
you can put tilt on the p222se, since your an electrician maybe you can help me with my p200 then it still in gr8 condition but now & then when i’m driving it one of the drive wheels locks up & if i stop & let go of the joystick it goes backwards in circles without me touching the joystick its scary, i’ve replaced the joystick no luck with that. striped it down & cleaned everything as my dad is refrigeration mechanic, i’m thinking the control box any suggestion would be greatly appreciated, i live in townsville & there is no one here who has any ideas
Steve: I’m going to keep the p200 and plan on making it capable of driving on sand, a beach wheelchair. The Quickie p222 with tilt, Jay2 seat and backrest was around $10 000 so I ended up taking the Vibe with Jay2 seat/back and tilt at $6900.
Your electrical problem sounds like the control box, but there isn’t much more to it if you replaced the joystick. Buy a can of “Contact Cleaner” and WD40. Unplug a connection and spray with CC, let it dry then use a tiny sqirt of WD40 and plug them firmly back together, repeat for every connection.
Your p200 wheelchair should have 4 pole motors. They are hard to access but when you do you will see four screw caps. Undo one and slide the spring and carbon rod (brush) out. Blow hard down the hole, be ready for a face full of carbon dust. Do NOT use CC or WD40 on these! If the brushes are short order new ones. Replace each brush and sping in the hole it came from, repeat for all motor brushes. That will narrow a few things down.
Graham, Do you use your hands for your computer or is it voice activated or something bc I would like to learn to use the computer bc I have to get my niece to type and stuff for me. I wanna learn how to do it by myself. Do you know how I could learn??
Hi Michael, I’ve been a webmaster with quadriplegia for 14 years. I also do some accountancy work from home on my computer. I type and mouse with one hand. Having no wrist extension, finger movement or sensation wearing splints to keep my wrists straight. I have half use of my bicep muscles but no triceps. When sitting in my wheelchair I can raise my arms but not push down.
When in rehab I was made typing splints, one a plastic sheath like the finger of a glove with a soft rubber stopper on the end. Another was a figure 8 fixed to a pen, sliding two fingers in I write or put the cap on and type. With practice I no longer need them. I hover my hand sideways over the keyboard tapping my stumpy pinky finger on the keys. I say stumpy as it’s the hand I lost four finger from in my accident – see above article.
For pen on paper writing I have a pen which slides into my wrist splint, you can imagine it takes a great deal of concentration to write legibly or paint with only your bicep. A quadriplegic mate of mine Bill has hands curled up like fists, he types using his knuckles. If you don’t have enough arm movement don’t despair, get a stick and try typing with your mouth. You can buy soft to bite on U shaped teeth bits with a stick, called a mouth-stick.
Another quadriplegic friend of mine Vicki is a webmaster and that’s all she uses. I’ve a mate who paints amazing paintings for Christmas cards with just his mouth. There are voice command programs that can help. I tried Dragon Dictate, it’s ok but takes a lot of “training” to recognize your voice accurately. Yet another of my buddies Shane with quadriplegia mastered it spitting out text faster than most can type. And Keith with limited head movement due to Motor Neurone Disease used an infra red camera that picks up a small reflective dot stuck to the forehead with great success. You type on a floating onscreen keyboard and simply pause longer than two seconds to click.
You can use all of these to surf the net etc. I’m sure you could find many other solutions available if you do some research. Where there’s a wheel there’s a way!
Hello Graham. I really enjoyed reading your article. My name is Sonya and I am in love with a man who is a C4 quadriplegic. I am madly in love with this man. He has been paralyzed for 8 years. He seems happy and content, but I know sometimes he wishes he could hold me and I know he feels sad sometimes that he can’t, but I am happier than I have ever been in my life. Meeting this man made everything complete for me.
I don’t know how you feel or how he feels living with quadriplegia, but I am understanding by your comments and by being around him. This man has been my best friend for 7 years, he has a kind heart and the most gorgeous eyes. I get scared sometimes, because I am not in his situation, but I am with him every step of the way. I findly know what it’s like being in love. I am thirty-four years old and he is 45 years old. I want a life with this man, do you feel that this is possible?
He feels the same way about me too and everytime I am near him I fill so alive and I am so happy. This is the first I have been able to share my feelings with someone else, that is living with quadriplegia. When I was researching the web I found you and I am glad I did. Thank you for opening this site and please tell me what you think. Totally in love Sonya
Hi Sonya, I think it’s fantastic you see the man and not the wheelchair. I always say that’s a very good sign. True love is one of the most wonderful things life holds for us all and quadriplegia is no deterent. I know exactly how your man feels, I’m head over heels in love with the most beautiful girl in the world, she is so amazing.
Sometimes I wish I could just pick her up in my arms, lay on a rose petal covered bed and slowly undress her. Rather than feel sad I try to find other ways to surprise her, like tearing her clothes off with my teeth lol.
I encourage you to persue your relationship. 8 years is plenty of time for him to have found acceptance of himself, all he’ll need from you is belief in him and love. Tell him how you feel. Being totally open and honest builds a solid relationship. If you have any questions I’d be happy to answer them. You sound lovely, he is a lucky guy.
Graham, Thank you for what you wrote too me. I apreciate it from the bottom of my heart. I really do love this man and I have looked beyond the wheelchair. I like what you said about tearing your true loves clothes off with your teeth, sounds good too me. Thank you for your encouragement because I have no intentions of letting this man go. We share so much, and not to get to personal, we have been intimate and he has given me the most amazing nights I have ever had, he really knows how to make me very happy.
Thank you for your friendly ear and kind words, but I am the lucky one, to have him in my life. He makes everything right without a shadow of doubt. Graham, listening to your words have been an inspiration. Trust me when I say that I am very honest with him and I don’t hold anything back. I believe in him and I love him from the bottom of my heart. Thank you Graham, you are my angel. Sonya
Finally.. that is the only word coming to mind at the moment. To give you a better understanding of why I’ll explain.. I am 27 years old, my husband is 27 with 11 years experience (38). lol He had a motorcycle accident 20 years ago leaving him a quadriplegic also. We have been together for 10 of those years, now married for a bit over 2!!!!
I can empathize with the things you have talked about just knowing everything my own husband went through and continues to go through everyday. Though I wasn’t there I know what his rehab was like and know what life has been like since leaving rehab. We, like Ms. Sonya, started out as friends and the chemistry was undeniable. We have been inseperable since.
I have to be honest in saying I had no idea what I was getting myself into in the beginning. The sleepless nights of disreflexia, the never ending appointments, the medical care, the constant need… I also had no idea how rewarding it would be to spend the rest of my life devoted to this person.
Let me tell you first hand, especially considering my and my husband’s age differences, it can be a difficult road at first, but the ending results are far more priceless. I endured a lot of negativity from people I thought were my friends b/c after all “I could do better” … “I” didn’t want better, THIS is what I wanted. If I had a dime for every time I have heard “are you sure you can handle this” I would be a frickin millionaire! Well hell yeah I can handle it! Now I look back and in remembering how hard it seemed to get our life together started…it really wasn’t that bad…b/c all that time, we had each other and we formed this TEAM… and now it’s us against the world! :)
So Sonya, you go for it and you let this guy know how much you love him and all the qualities you love about him. Let him know that even though he can’t “throw you in bed”… you might can toss him in! Let him know that you look far beyond his incapabilities and see all the things he has to do better and work harder at to achieve the same goal. Become a team and nothing will get in your way.
Graham… we have TWO P222′s and he LOVES them! He “got in good” with his repair man and he was able to get one of the controls! Woo hoo…or maybe oh no!? The last he raced someone he topped at 10 mph. He loves his chair and y’all better watch out if he’s coming in for a landing!!! I can tell you first hand they are not nice when they get a hold of you!… you can’t imagine how long hair can get caught and completely wrapped up in the wheels (after falling out of his lap and he keeps going)…also not to forget those ole shin bones (they’ve definitely toughened up these past 10 years)…toes, ouch I’d rather not relive that one…just to name a few. :)
It’s great to find a site I can get some good info and also read about people in my same situation. Look forward to talking with you all!
Megan, thank you for the kind words I appreciate them very much. I do love this man he’s been my rock and my best friend for years. I have looked beyond what he can’t do and dwell each day on what he can do. I love the way he makes me feel. I have never been in love until the day I looked into his big beautiful brown eyes. He makes me feel so good inside and I would love for him to one day throw me in the bed, however I do enjoy the nights and days he shows me what he is capable of.
I don’t feel bad of his quadriplegia because I do look beyond the wheelchair. I am just glad he’s able to tell me each day how much he loves me and how good I make him feel. That makes everything alright. Yes! I have a lot of people wondering what I am doing with this man, but I never cared what people thought and I won’t start caring now. All I know is that he makes me smile. He touches my heart and he makes me feel good all the time.
See I don’t care about the condition he’s in. I care about spending the rest of my life with this man. So I continue to live for the moment and I make each day count. It’s good to have someone in your life that touches it so deep. This man drives me wild and I’ve never been more happy in my life, until the day we discovered we were in love.
That’s the day I’ll remember forever and each day I spend with him is a memory that will forever be in my heart. Some days I wake up and I say this romance is too good to be true and then I look into his eyes and I melt and I fall in love all over again. I am so glad to hear your words and the words of Graham, I am glad to know someone understands. Thanks Meagan
Hi Graham, I was looking over your site on information about Quadriplegia. I am legally blind and work in Independent Living in the USA. I have many friends with Spinal Cord Iinjury and wanted to understand it better, espcially relationships, marriage, community life etc. Thank you for sharing so much with us, as we all continue to push for equality for everyone. Keep all well and Keep Shining!!
Hi Graham and All, Happy New year! I’m starting to date again… and am sooooooooooo fricking worried how my male friend will act. How does one explain to someone about a suprapubic catheters??? He knows I have a new health issue that arised in April of 2008 and I’m still adjusting yet! Is it safe to shave off the pubic hair with a stoma and cath down there? Can that be unwise to do or dangerous? Do any of you, if in a relationship, have an understanding spouse/partner?
I have not yet told him about the extent nature of this problem including belly bags, leg bags, bedside bags, catheter plugs… and bladdder pads that I wear daily, usually can get by with with just one a day. Am afraid to take chances w/o wearing one. Sometimes I’ll leak unexpectedly. :0( Any advice, or encouraging words?? Trishie :0)
Thank-you Nia.
Hi Trishie, HNY! Yes you can shave no problem at all. In fact hair promotes growth of bacteria, most are good bacteria though some are bad. That is why I suggest on the superpubic page to keep hair trimmed back away from a catheter/stoma site. You can shave the entire area if you wish, no problem at all. You could shave each other for that matter.
My friends/girlfriends have all been very understanding and interested to learn more when I tell them I’ve an SPC. I’m sure he will to. For some I used humor, look them in the face and say, “Did you know I’m peeing myself as we speak?” Or, “Did you know I can pee out the end of my trowser leg?” When friends are busting to go I offer a catheter haha.
For others I used a clinical approach, “Honey, I don’t go to the bathroom like regular folks due to my spinal cord injury.” And a few the gently-gently, “Can we talk about something I’m afraid you might not like about me baby?” No matter how it’s always been accepted with understanding and compassion. It’s a necessary part of your life.
The common response is, “We all gotta pee somehow.” If they don’t show understanding, interest and/or concern for you then it’s likely they never cared for your health or feelings in the first place and you’re better off without them.
Hi Folks, My question is how one effectively stays cool. I live in Nova Scotia, Canada. Where I live it gets cold, but rarely hits 30C in summer. I don’t even use a/c anymore. I’m planning a trip to Texas in June and am not sure what I should be doing to compensate for the heat – even though most of the places are fully a/c’d. I haven’t been in hot climes since my Spinal Cord Injury. Anybody got any good tips for me? Thx in advance…BobS
A friend of mine recently got in a bad car accident and looks to be paralyzed to some extent, though how much is not yet known. Before the accident she was also an incredibly athletic and outdoorsy chick. I was wondering if you can provide some specific advice to friends of quadraplegics. My own own list of ideas is depressingly short: -Offer love, strength, encouragement, friendship, and company.
-Take her to see a raunchy all-women play in May (assuming she’s stabilized).
-Don’t leave your sense of humor in the waiting room.
I’m guessing I’m not the only well-meaning but clueless friend of a recent quadraplegic. I’d love your tips. Great site, congratulations on not only overcoming your own roadblocks but also reaching out and helping others.
Valentine: The best thing you can give a quadriplegic is love and lots of drugs. A sense of humor (was joking about the drugs) is also important as you noted, it’s one of those laugh or cry things. I wouldn’t make a list, just be yourself. A big fear and worry to those new to quadriplegia is change. How am I going to live, what will I do for work etc. It’s very daunting, bad enough their life is about to change drastically they don’t want everyone else’s to. Being yourself gives them stability and familiararity. Show support but don’t push them, sometimes the best thing you can do is just listen.
BobS: Take a hat. As you know it gets pretty hot in Australia, I wet a baseball cap and wear it, if at home also wet my shirt and sit in front of a fan. You can get gel pads to freeze and wrap around your neck. I’ve seen full vests you can freeze or heat and wear but that’s probably a bit extreme and they were expensive. Not much else you can do, a cool shower and a cold beer.
New Carer – I was wondering about the temperature problem. Feeling too cold and too hot? What causes that? Crystals, Iceblocks, and an instant air circulating heater. Hot water bottle, placed or general bed heat up. Wet towels, hot or cold are common place. I did not know that this was typical.
Hi Linda, I’m sure that Graham can give you a more complete explanation, but I can give you my thoughts. With a partially severed spinal cord (and more significantly with a complete), through accident or medical condition many of the nerves are severed and can’t talk to each other. Depending which sets of nerves are affected different symptoms appear. That’s why different quadriplegics have different capabilities.
For some of us one of the aspects is lack of temperature regulation – the body can’t tell the brain that it’s hot or cold. As an example as I am writing this it is about 20C and my hands and feet are freezing and I have a long sleeved fleece top on. When my body over-heats, I can only tell by a flushed feeling in my face. If I let it go too long I’ll pass out. Since there is no communication, my body doesn’t know enough to sweat. The converse for cold.
Back to your question, the simple answer, I think, is that there is a lack of communication in the heat /cold response mechanism in the brain due to a severing of the nerves.
Hi my name is Melinda. I briefly read some of your site. It’s wonderful. My brother-in-law is a quadriplegic. He’ll be taking his first skydiving jump as a quadriplegic. It will be his 80th time, but first as a quadriplegic. Day of the event will be June 27, 2009. We will all be there to support him. He is a very driven person with tons of confidence. He inspires us all. Perhaps I’ll send you some pictures.
Hi Melinda and thank-you, I hope his skydive was a blast today. Great to hear there’s thrill seeking quadriplegics getting out and living life to the max. We’d love to see some photo’s and will post them on our skydiving page if you like.
Hi Graham:: I was hoping you could help me. My husband was in a horrible motor vehicle accident a year and a half ago at the age of 29, which left him a C-4/C-5 quad. Before his accident he was very active and on the go all the time, he could fix anything and was such a man’s man, he was 220lbs and all muscle, he was my life.
We also have a four year old daughter, who was 2 and a half at the time of the accident. I am my husband’s primary caregiver, except for a nurse that comes in three times a week for 2 hours for his bowel program… My husband is a fighter, he has taught me more than I ever thought I would learn in my lifetime. His will, faith and determination to keep fighting amazes me everyday.
We have really good days and we have really BAD days. For the past few months, I have been really struggling with the effects this injury has had on our marriage, emotionally, physically, financially, really in every way. We have not be intimate in a year and a half… we tried one time after the accident and it was so emotional for the both of us because it just was not the same.
Being an extremely happy married couple before the accident I feel it is much harder to adjust to life after the injury. I am very confused right now and very depressed, I long for things to be the way they were before the accident, I daydream about how our wonderful life use to be. I want his strong arms around me and for him to be able to run and play with our daughter. I am tried and sad all the time. I want to come to grips about what has happened and I am scared that I can’t. I love him so much and we have been married for 6 years and together since we were teenagers. He is the love of my life. I just need some advice on what to do.
Hi Kendy: I was always told having your partner as your primary carer is the best way to lose them. It puts tremendous strain on your relationship as you are finding. I understand many people especially in the U.S. cannot afford the full level of care a quadriplegic requires but there are services available to you.
My advice to you is talk with your husband explain how you are struggling and want to explore greater support services. So many in your position begin to feel like just a pair of hands. You need to be you first. He’ll probably be the first to admit, “I don’t know how you lasted this long.” If he doesn’t like the idea he’ll hate the inevitable alternative. I’ve seen it split the best of couples.
Your doctor or hospital should be able to suggest support services. Once you get some more support in place take time out for you, go out, visit friends, go for walks. You might then find it easier to accept that things will never be as they were, that is a fact, they will never be as they were Kendy. The best way to move forward is to accept that and look forward. Focus on what you do have and make the most of them. As my girlfriend says, “Things aren’t necessarily better or worse just different.”
To revamp your love life find new ways to surprise each other. Do a sexy striptease, pleasure yourself in front of him (yes most guys like that), use foods, scents, candlelight to get him thinking and hopefully he’ll surprise you to. Or give me his number and I’ll set him straight lol. I wish you both and the children all the best.
I am very new at this point. I don’t know how to ask or explain. but I will try. thank you for your suport to every one who are in this.
Hi Ruth, In an earlier reincarnation I was in Adult Ed. One of the saying that I used all the time was that there were no stupid questions, just stupid answers. As a result of becoming a quad, we have all had to try to figure out who we are, what is going on and where do we go from here.
Obviously the answers are different for each of us. There is, however one thing that for me has been a constant. The Mad Spaz is a good site to air your questions and concerns and have people provide you with support and guidance. I have gone in several times for information.
I am very grateful to Graham both for his site and his support and the support of others that comes through the site. I would hope that you too would feel free to fire away. Cheers.
Can anyone give me numbers regarding finacial support for my partner who has just become quadraplegic we live in melbourne australia there is just so much stuff on the internet i dont know where to start and dont want to take the long road to get somewhere if someone knows where it is? i’m so drained at the moment looking after kids i’m finding it hard to find the time to do everything
Hi Mel, Finding your way through the maze of services and assistance available is always hard without a map and will be worse because you are still trying to come to terms with all the changes that disability brings. If your recently disabled partner is still in hospital it’s good to link with the social worker who can give you advise on what financial help is out there and how to apply. The ParaQuad Association of Victoria now listed as Independence of Australia (www.independenceaustralia.com 1300 704 456) has professional, OT’s PT’s etc, that can help with funding applications help with equipment and other services. They can facilitate you and your partners needs and take some of the stress from doing so yourself. Some of the financial help depending on your circumstances are a DSP (Disability Support Pension) through Centrelink (1800 555 677), a carers payment and allowance. Centrelink is always difficult to get onto because of the volume of work they deal with and the complicated forms, new to the systems and services you may find it helpful to link with ParaQuad first.
The State health dept (Victorian Aids and Equipment Program), will be able to assist with equipment and continence supplies. Often programs and services need support from an allied health person. There are other schemes out there that would help you now and once more settled. Feel free to use this site if you need to ask anymore questions
Hi, my name is Amy and my dad had a gun shot wound 3 months ago and he was diagnosed a complete quadriplegic. I thought it’ll be nice if i knew more about how to take care of him. I am really depressed. The hospital bills are crazy expensive and we can no longer afford to pay. Any advice on how to care for my dad emotionally?
Hi Amy, just be yourself. Quadriplegia is a life changing event. I think you’ll find it’s daunting enough for your Dad to face the vast amount of changes that lay ahead of him in his life. He won’t want his quadriplegia to change or impact upon your life as well. A familiar solid support base of family and friends is a good base to build on. So just be yourself, your Dad will tell you what he needs, doesn’t need and expects of you.
Hi Graham, My boyfriend of a few years was just in an accident and broke his neck at c6-7. Before he was outgoing and very active, now he is quadriplegic with some movement in his arms and wrist. He is 22 years old and I, 19. We’ve been together for a long time and I plan on staying together, because indeed he is still the same person in my eyes. I am horrified and scared at the thought of how to plan for the rest though. It might be because we are so young but I cant help wondering how it will pan out.
Will be be able to have kids? We are set up financially right now, but how will we make it work down the road? What are some long term effects of quadriplegia… these are just a few of my questions. If you could give some insight or some answers from your point of view (because I am trying to be very understanding and I want to learn more about it) that would be a great help. Thanks
Hi Ler, unfortunately quadriplegia does often split couples up but there’s no point in worrying about what if. I can suggest being patient and a little more tolerant than usual. It’s a common reaction to push your partner away because they love you and “don’t want you to be stuck with a cripple.” Assure him you’re not going anywhere. The hospital he’s in will be able to suggest support resources in your area. Utilizing these can take some of the stresses off you both.
Having some arm and wrist movement is a great sign at this stage. Wrist extension means being able to drive greatly increasing freedom and the prospects of employment. Many people living in wheelchairs hold down a full time job and support their family.
You guys should be able to have children. It’s often suggested that men with a low sperm count wear boxer shorts to increase air circulation lowering testicle temperature. Sitting in a wheelchair all day doesn’t allow circulation and naturally with age sperm production decreases. At your ages it should not be a problem for many years to come.
The ability to ejaculate is usually affected with a C7 spinal cord injury. Many hospitals take sperm from newly injured spinal cord patients to freeze in case needed later in life. Typically using a small buzzer or vibrator (much like a woman’s clitoral vibrator) under the head of the penis. There is no one case fits all here Ler, your boyfriend may well orgasm during intercourse. It’s something you guys will have to discover.
There are many possible long term effects from living as a quadriplegic. Common are increased onset of arthritis, pressure area problems, cardio and respitory related issues from extra stresses on the heart and circulatory systems like Deep Vein Thrombosis and Pulmonary Embolism (blood clot in legs and lungs respectively especially within the first five years). Long term use of medications have consequences and related issues from side effects.
Recent studies also indicate a slightly higher incidence rate of tumours amongst people with SCI. Mortality rates from quadriplegia and paraplegia are highest within the first year of injury. It’s estimated the impact of a spinal cord injury only reduces a persons overall life span by 2 to 3 years.
hi,graham.. its a nice page here.. im 15 and im not a paraplegic or a quadriplegic… i just have pity 2 ppl who r disabled… no offence, but i really want 2 lend a hand but dont know how.. ive been watching videos of para and quad on youtube secretly for a while.. its a bit shamefull for me to tell people about what i watched cause other teens would watch the latest video clips and etc but not me.. i would immiedietly type for para and quad videos.. do u have any suggestions how to help the disabled?
im from malaysia and ive been thinking about how i never heard anything about para and quad here.. nor did i see anyone on a well built wheelchair like they have at usa.. so do you think we are a bit left behind or handicapped people here are simply neglected.. hope u are well and enjoy everyday of your day… *eyesha*
Hello eyesha, let me start by saying no offence taken and you have nothing to be ashamed of. It’s nice that you care enough to learn about your disabled friends condition and what they are going through. I’m quite sure most people would appreciate that. Often the best way to find out more about a disability and what you can do to help is ask the disabled person directly.
If you had a broken arm people would ask, “How did you break your arm? Can I help carry your bags?” Paraplegics and quadriplegics are not much different. Talk to them and treat them like any regular person.
I’ve been to the U.S. and can say it’s not as wheelchair friendy as Australia or New Zealand. From what I’ve heard you are right, Malaysia is not very wheelchair aware or friendly and is behind the times. The internet is a great resource to learn and find support.
In small remote villages community groups and local businesses are often very helpful and build ramps, modify bathrooms etc at cost or free. Hospitals are also a good info source. I suggest talking with your friend first as sometimes people don’t want to feel like a “charity case.”
Modern wheelchairs are very expensive. The one I’m sitting in right now cost $28, 000 MYR. There are still countries like parts of India and China where being in a wheelchair is seen as a family weakness. They are treated as a burden hidden away and rarely get the opportunity to venture outside of their home.
Sometimes my friends or carers ask me for example, “Aren’t you worried you’ll look like a dork in that shirt?” I say, “Mate, if cared what I look like and what people think I would never go out my front door.” They just laugh and off we go.
Graham, thank you for the website and for sharing your story with us all. I am a 23 year old quad who recently graduated from college and I was wondering if you could ellaborate on how you obtained a job and a home where you could recieve the assistance and care that you need. Now that school is finished this seems to be my next step in life and any info you could pass on would be greatly appreciated. Also because we both seem to have movement in our arms and no movement in our fingers or wrists what adaptive equipment have you found that best allows you to operate a vehicle.
Hi Travis, computers and the internet have opened many opportunities for wheelchair users to work from home. The employment sector will depend on your skill set, obviously you can’t do town planning without the required academic qualifications and registrations but you could do data entry without any qualifications.
An employment agency specializing in disability can help place you in employment and in most cases give financial support for equipment and workplace (outside of home) modifications, accessible ramps, water cooler, air-con etc. Centerlink can refer you to such agencies, ask Centerlink about “Mobility Allowance” while you’re at it. I gather you’re in Australia?
Register for public housing (housing commission) with the Queensland Department of Housing (or whatever state you’re in). You basically select the type, units or independent home and the areas or suburbs where you would like to live. It can be done over the phone or a rep will come help you fill in the registration forms.
Then you need to register with Disability Services Queensland for care support hours. You generally need to meet with a rep so they can assess your current housing environment, safety, functionality, level of support required etc. to calculate the amount of hours to apply for. I was on these lists for 8 years, pestering and re-filing annually, so get on the list.
As a quadriplegic in Queensland without wrist extension you will not be allowed to drive. I only know of one such quadriplegic who did after spending 125,000 AUD modifying a Holden ute with specialized push/pull palm pockets. I say did because a few months later he wrapped it round a tree. I miss being able to jump in my car and go wherever I like. Check with your local police station, if there is an avenue to be able to drive, take it.
I just came across this site today I have a son Christopher preserntly in the pA hospital C4 incomplete Quad. he is turning 30 on Thursday so Im heading to the PA. I live in Bendigo and Christopher hope to relocate to Toowoomba I will go home and read all your details seemed very interesting. I will be back in touch if I have any questions
Hi Carmel, it just so happens I will be at the PA Hospital on Thursday. I’ll swing by and if you’re not busy say hello, offer Christopher some encouragement. Up on the range at Toowoomba is a nice spot.
Hello Graham (hi mum *looking @ previous post *),
man sitting here on the anniversary of my admission still on the ward with 2 nights to go til discharge into a TRP house, reading your story has not only given me some extremely vivid and rather horrific flashbacks of 1:38pm, 26-03-2009. my split second forever locked in my mind, it’s also made me ponder short and long term goals. until i get Dragon and or Windows 7 voice recognition working correctly that’s about all i can share. it would be wonderful to type more but i think i’ve hit my endone threshold for today. i will say though as excited as i am to leave, i’m equally sad and scared shitless. hope to hear from you. Cheers Chris
Wow Chris it’s awsome you took the time to write. Thank-you so much, you made my day! I zoomed by your room thursday gone but you guys appeared busy. I ended up driving my powerchair back across the Story Bridge to Lutwyche before my arm gave way to taxi. Been awhile since I felt the soothing warmth of endone kick in, my shoulder dislocates when least expected, still I have to be near death to take any S8 class drug these days. I was very reluctant to leave the spinal injuries unit acute room let alone the ward. It is quite daunting. I noted your email address, will send you my contact details Chris. I wonder if TRP is what they call the independent living units now? I re-visit the PA this monday 29th, I’ll ask after you at the SIU nurses station. My best to your Mum.
Thanks Graham, it was great to see that Christopher had accessed this site, and thank you for your best wishes. Yes Christopher goes to TRP on Monday MacGregor. This is the step in stone to his move to Toowoomba once his Apartment is ready. This is a good move from the Hospital but also a frightening move. And yes Christopher also remembers when he left ICU after 4 months+ then also Acute so he has handled many hurdles so to speak.
I cant even imagine what goes through your heads every day, the hardest thing I know for Christopher is that he has gone to OT and Physo on a regular basis and given it all he was capable of only to see many others get something back is very difficult for Christopher to understand…. but that saying “never say never”, we have to keep him motivated.
He has 4 beautiful children even though he has distance from them presently (Bendigo and Toowoomba) these little people will become very much a enormous part of his life but they are at the age now that Christopher has to constantly build on this bond and as they are so young and do not understand the enormity of there fathers injuries. But I have seen Christopher handle many hurdles in life when his feet could touch the ground, he’s an amazing young man, he has had to face many a hurdle, this is a pretty tough one but as his Mum I know he will give it everything he’s got.
I always look at him beyond the wheel chair and cherish my time with him when I come to Brisbane. It’s OK to have a bad day we all have them. As his Mum I do find it very difficult at this point, do I or when is the right time, to come to Brisbane, the distance is just so difficult, do I throw in my job, will I like living in Brisbane – Melbourne people love to visit but dont handle the humidity, constantly asking questions. I’m his Mum first and formost and with him in mind and thoughts every day we have a very strong bond we are good communiciators and access to these chat areas also helps.
As per Christophers note yes the flashbacks are certainly real Ive played back the first 48 hours +++ after the accident and Christopher has gone such a long way since then. Removal of Ventelator, Treaky, frist time on the tilt table (to see life standing up) Managing his Wheel Chair, etc etc Im just hoping to help Christopher realise that he has so much to offer in his life. hes a fighter, has determination and to keep setting small goals. Im sure if he stays on this site this will give him guidance, and support. Thanks Graham, Carmel
For the first three months I was unable to move my arms. I remember becoming very upset when I realized I couldn’t even sign my own name. Luckily I regained enough movement to be able to touch my face when I left hospital, despite a physio tearing my bicep. I’d scold Mum for telling people, “He’s got a bit more use of his hands.” Don’t say that Mum! My wrists and hands do not work, period. I’m just making more use of my arms. I never imagined that taking 30 mins to get a chocolate out of the fridge would give me such a great sense of achievment, but it does.
These days I can get a beer out of the fridge and open it, cook chicken nuggets, give my girlfriend a foot rub, write in cards, mouse, type, paint and sign my name. It’s not unusual for carers to come at night and find a trail of peanuts from the pantry or milk from where I dropped the bottle to the shower drain where I pushed it to empty. I challenge anyone to open a can of spam with boxing gloves on, that’s kind of what quadriplegia is like, permanently having boxing gloves on. I pulled out every knife fork spatula, even string, couldn’t get that ring pull.
In my dreams I am able bodied, then I wake to a nightmare, go to swing my legs out of bed and remember I’m paralyzed. Carmel, would you have moved to Brisbane had Chris not had his accident? That’s probably a pretty good guide.
Quadriplegia is a devastating life changing disability, most quadriplegics find it hard enough to adjust, they don’t want others to have to change. They suffered the spinal cord injury and don’t want loved ones to have to pay for it. Now Carmel, this may sound harsh but it’s true, the more you do for your son the less the government has to. In order for Chris to achieve as much independence as possible he has to rely on strangers for awhile. It is scary and won’t always work out, that’s life. For the same reasons I won’t let my girlfriend fill my care needs, unless of course it’s vital. The best thing you can give Chris is your love.
Graham — I stumbled on to your website. I am a C-4 quad who is 30 years old. I was injured when I was 27 in a snowmobile accident. I like speed too. My injury, just as yours, has required me to make huge changes in my life. Luckily I have the support of my family. I am making every effort to reclaim my life and I can do consulting work from my home — I am a Human Resources professional. Now I am pregnant so I definetly have a purpose in life. You are right about finding joy in simple pleasures. I am taking one day at a time. That was the best advice I recieved from my psychologist at rehab and it has helped me adjust to my injury. Thanks for being so upbeat and positive.
Wow thank-you Beverly for taking the time to read my story and respond so poetically. I have never ridden a snowmobile, yet. Congratulations on your pregnancy. That is simply awesome. It must be very exciting, while kind of scary? I would love to hear more about your life story and publish your own page on this site, plus any updates, if you will. I’m also interested in employing a human resources officer. Great things come from noticing little things. You made my day Beverly, thank-you. If it’s ok, I will email you within the next few days.
Hi Graham, I have just returned from Brisbane as Christopher is in TRP in Macgregor it was great to see him out of hospital and believe he is moving forward with his life one day at a time that’s for sure. He certainly has many challenges to master, like his anxiety especially with the time’s on his own.
He will be at [removed] for another 6 weeks and maybe you could one day pop in and see him. He misses his friends from the hospital, and has made the most of every weekend as his mates have popped in to see him. I believe another patient from PA is moving to TRP this week and will only be a street away from Christopher so I’m sure these guys will share experiences and pop and see each other.
I also thank you for your comments going back a few days and talking this through with someone else helps you look at the big picture. He is working on his independance and ascertivness in organising his life with his carers, he has a lot on his plate but looking forward to getting to Toowoomba in his own place then he will be able to slowly adjust and of course this will be another transition again.
He is very vulnerable and this is the scary part so the social worker is working on relaxation techniques. I have found some time to read your site and all this information is wonderful, Christopher tells me he will also add his story to your site and I think this is great encouragement and opportunity to move forward and understand how well each and everyone has done. It will happen may be more so when he gets to Toowoomba and used his voice recognition on the computer as this will be a little easier on his neck.
As his Mum he will always be my baby, love him to death he certainly inspires me with his determiniation. He also tells me not to come to Toowoomba as this will only make him weak and he will rely on me instead each time I visit he says he will work on showing me his strengths… Thanks Graham
Hi Carmel, nice to hear from you. I removed Chris?s address just for security. If I’m in the neighborhood I’ll definitely drop by. The PA nurses said I missed him by an hour on his day of discharge. It was nice to catch up with Dr Sue though. You know, a maxi taxi from my place to the PA costs $91.00 :eek: at least with the subsidy I only paid $45.50. So I drove my power wheelchair to the Casino, had a Bundy rum $9.00, and caught a train home $3.00, big difference. I?d love to publish Chris?s story here and follow his progress. If there?s anything I can do for you guys, even if it?s just to chat ;) don?t hesitate to ask. Cheers.
Hi Graham, it was lovely to see your email today we have had a very difficult time, Chris ended up with UTI and was taken away from his TRP place on Monday and ended up in the Mater Hospital. Cant understand why he was bypassed at this early stage from the PA he is still a patient at the PA as (parent) we see it this way. It has been a real eye opener for us.
Christopher was put into ICU as virtually a new patient and looked apparantely as he did in the first month at ICU PA a backward step. He had lost everything that was giving him independance and when I rung the Hospital Mater they said he had a bell to ring if he needed help… didnt they notice Christopher has no hands he cant ring a bell. He was about the check himself out of the hospital.
So here’s hoping that PA have it sorted Christopher has for 12 months stayed on top of things as best he can… he certainly wasnt a happy boy and as parents it’s so frustrating to feel so usless in helping him. This trip has set him back a few steps for sure. So when you have time drop him a line he can’t even access his computer at this point… but he will know his Mum has been worried lets hope tomorrow is a better day.
Thanks Graham it always seems that when you talk to someone elese even by email you feel better… so where do you live Graham? I think you mentioned it in an earlier email must re read it. I must say that when your in a Taxi no matter who you are they seem to find every traffic light $$$$ from Macgregor to Mt. Gravatt which is 6klm cost me $23 the other night… I had to pay full price. Hope to meet you on one of my visits. Thanks for being there. – Carmel
Hi Graham, i am not a Quadriplegic or a Paraplegic but for many years, and i’m 61 now, i have wondered about how life as one of the above would be like and after reading your storey i now have a much better understanding, so how did i come across your story. Well for about 4 + years now i have been designing a better way to propel manual wheelchairs and have now completed that idea and built a new kind of pusher, that can propel manual Wheelchairs without the need to touch the wheels at any time.
However after building the pusher and trying to get feed back on it, was trying to extract teeth from a hen. Untill two weeks ago i was down at a park taking photos of the chair to send to the new inventors in Sydney as requested by them, and along came a guy who’s name is [Shuan i found out when he introduced himself to me.] being pulled along in his manual wheelchair buy his trusted mans best friend. Tipper, the dog.
He seen me and could see that i was’nt a wheely but had a wheelchair and was taking photo’s of it. So he spins his wheelchair around and comes over to me and se’s, hi dude, whats the deal with the wheelchair, so i explained to him what it was all about and he shook my hand and said bloody good on ya mate. Can i have a go and swung himself from his chair into mine and tried it out.
He said you know bud, this gadget, apart from every other obvious help it will be to a manual wheelchair user, it would be the answer to a lot of Qaud’s. Well i said i didn’t know what he meant, so he sat in his chair and i sat at the park table and he explained that there are some Quads that regain some use of their hand movements enough to allow them to open their hands a bit so they can pick things up and maybe be able to use the pushers because as it is at the moment they can’t use a manual wheelchair without a helper to push them.
So this led me today to look up on Quadriplegic and find more about it and what it all means.And thats how i came across your story and all the other guys and gairls comments as well. I have read and talked to a few people and i have felt a bit embarrass’d to ask to many questions, but finding this site maybe you could fill me in on, do Quadriplegics get some use back in their hands and arms enough to push a wheel chair aided by a vertical handle much like pushbike handle but vertical obove the wheel of the wheelchair?
Hi Graham, thankyou for taking the time to write to me. I saw a manual wheelchair called the TrackChair. It has two hand rims on each side of the chair and an axle that allows control of one or both wheels with either hand. It has a differential that allows both wheels to lock together (using one hand). No more sticking a hot coffee between your legs to move forward.
It was on the new inventors. Recently at my local mall I saw a man using a bicycle handle type of lever on a manual chair to propel himself. The single lever came up between his legs though and I’ve no idea about turning reverse etc. I’m guessing it was some kind of ratchet mechanisim.
To your question: (of which you may ask as many as you like ;). Yes, many quadriplegics regain movement but this generally happens within the first three months of spinal cord injury. Then it is a matter of building strength and range of motion in muscles where function remains.
Short and sweet, paraplegics have full functioning fingers, quadriplegics have impairment of fingers. The more severe damage and height on spine, palms, wrists, forearms and so on all become impared. Many quadriplegics use a manual wheelchair as wrist extension (wrist upward closes and as Shaun notes, straightening wrist opens). I made a visual representation of level of injury and resulting paralysis here.
Pertaining to your wheelchair lever I don’t know the specifics but a 1:1 ratio where 1 rim push or 1 lever push = 1 complete wheel turn, a lower ratio 2 lever push = 1 wheel turn would enable quads to go up steeper inclines. The lower the ratio say 8:1 the greater the ability to access enabling those who can’t use a conventional manual wheelchair. An ability to choose 1:1 through 1:8 or 1:24 would be ideal. Conversely 1:8 could see paraplegics keep up with bicyclists.
Another consideration is balance, most quadriplegics have poor balance and need to swing one arm around the push cane handle for stability while driving with the other. I hope that answers some questions. Feel free to ask more.
Thanks mate you have given me more in your note than i have been able to get in one year. I to live in Queensland in Southport on the gold coast. The pushers I have designed are used much the same as pushing the chair by hand on the rim except that you push on a lever that pushes a striking plate onto the tyre with the momentum of forward or reverse to propel the wheelchair along. So the length of stroke achieved by pushing with the hand on the rim, to the ground covered is much the same as pushing with the pushers. The only difference being that the lever gives about 60% more power in propulsion and allows hill climbing to be a breeze.
Ordinary every day use is as easy as, you need no more strength to get it started than the last stroke you do, no more cuts to the hands damaged wrists no more gloves unless its cold,ect ect. Yes i have seen the other propulsion methods on u tube and was pleased to see others trying to make a difference as well. There are a few out there The english new drive, The American ones the Wijit and the one you mentioned and another thats name has alluded me at this time. Anyway all good stuff if it can help people in wheelchairs to get around and be more independent.
I can’t believe though that wheelchair manufactures haven’t come up with something by now it sure would inject some competition into the industry what do ya reacon. Anyway mate take care and keep up the good work this is a great idea of yours good luck. Graham Remnant.
Have you seen this Graham? The Wijit is a new mechanical wheel system that is compatible with most manual wheelchairs and requires only a minor installation process. It replaces the push rims of standard wheelchair wheels with a lever system that the rider pumps to move forward. The makers of Wijit state that it provides up to 60 percent more energy efficiency than regular push-rim propulsion, meaning riders can climb steeper ramps – or simply go farther while using less energy.
There’s also a reverse gear and, most importantly, brakes: the levers are squeezed inward to apply unprecedented braking power. The levers are also easier on the palms and wrists than push rims. A future version of the Wijit will have a selectable gearing system, allowing riders to gear up to cover even more ground per push.
Adding the Wijit system to the standard manual wheelchair provides many benefits to the user. With the added power and safety gained from its lever design, it is also a low-cost and healthy alternative to an electric wheelchair for people with a wide range of disabilities who were previously unable to use a manual wheelchair.
Other Wijit features include: Driver handle mode switch – to easily switch between forward, reverse and neutral. Quick-release wheel system – for easy wheel-swapping ability and wheelchair transport. Two specialized wheel versions – The Beauty (smooth tread for around town and indoor mobility) and The Beast (rugged tread for outdoor activities). Advanced, streamlined wheel design – only adds up to an inch to the overall width of the wheelchair. The system costs about $900 per wheelchair, versus about $500 for regular wheels. It is approved and reimbursable by Medicare.
Graham reading this tonight has put such hope in my mind for my good friend “Steve” he bacame quad in November 2008, and has been placed in a nursing home at the age of 48. The nursing home is depressing and so sad. his parents are elderly and I am NOBODY to him, but that friend that is there TO LOVE and HELP him.
I have considered becoming an advocate for the disabled after being involved in this scenario for Steve. He recently has told me he feels tingling when I push his toes forward or massage his knees, and night before last he showed me that he could almost tap his left leg to a song, can’t keep the beat, but .. he also wiggles toes on both feet somewhat.
I know that there is something more out there like the hospital that you were fortunate to be in, I am wanting to find that for him. He has given me permission to research and share but not to be discouraged if he does not want to participate. I am hoping that i can take this story to him however I don’t believe the nursing home has WI Fi.. he gets some PT but has NOTHING else to do during the day he sits in front of the TV going out to dinner is absolutely not going to happen for him as he is afraid of people staring at him.
Your story on this evening that I have chose to stay home and research certainly inspired me. Especially when you mentioned being loved.. I told him Steve I love you like a brother, and you need to know that people do love you. I lost my beloved husband to cancer 3 years ago, and finding a friend to care for and love is WHAT I HAVE FOR HIM, and WHAT HE NEEDS, and he listens when I talk, it all just works.. Except that I have to be careful as his parents dont want me to give him false hope or encouragement. But I believe he NEEDS HOPE and ENCOURAGEMENT..
Thank you for this site… it has shed light for me that I definately needed. – Cheryl
Hi Cheryl, perhaps you could explain to Steve people only stare because they’re interesed in him. In much the same way large breasted women get stared at and often receive special attention. He is still the same man inside with a very interesting story to tell. He can wallow in self pity or make the most of it and let people open doors, meet new people and educate them. He has access and opportunities that people in his situation in poorer countries never have. Buy him a new suit Cheryl, dress him up and drag his ass to dinner. I take it you are in the US so as far as therapies and further resources look into the Craig Hospital in Colorado.
Thanks Graham you are right about the pity.. and the way people look at people that is an interesting way to put it to him. Thank you. I don’t know about the new suit .. but at least some khakki’s and a nice shirt.. He is in tee shirts and pajama or sweat pants all the time. I like that ideal. Thank you and I will investigate Craig Hospital in Colorado.. I think big issue is insurance and that is a sad state of affairs. I like your reply.. THANK YOU AGAIN
Hi Graham, this is just a short email to let you know that Christopher died on Wednesday the 5th May, so very sad, a courageous young man who accepted his disability and had many dreams and visions, may be rest in peace… thank you for all your support I had hoped to meet you one day. Thanks Graham
Carmel Shannon
Oh my Carmel.. my deepest sympathy and condolences to you and Christopher’s family. I’d still like to meet you if you’re ever back in Brisbane or I get to Bendigo. Was it septicemia? What a tragic loss.
Hello Graham, My name is Ashley and I am the sister inlaw of a recent c4 quad patient. My sister inlaw was in a horrific car accident in which she shattered her 4th and 5th vertbrae and damaged the 6th one as well. I was going over websites trying to find more information on her condition when I came across your site and thought oh my god she needs to read this!!! First and foremost I wanted to let you know what an inspiration you are to the disabled… not many people with your type of injury have your attitude! I also wanted to ask you a few questions in regards to her recovery if I may…
She had her accident on Feb 26, 2010 and has been at the hospital here since that date. When she came in to the hospital the dr’s informed us that she had shattered her 4th and 5th vertbrae and that they would need to conduct surgury, taking bone from her neck or hip to make new vertbraes and then connect them with 2 rods keeping her neck stable. The dr’s told us she would have a 20% chance of making it through the 10 hour surgery and she did :)
Then came the hard stuff… We were told that because of where she sustained her injury they call her a c4 patient… that she would have head movement, only shoulder movement if we were very lucky. she spent the first 4 weeks of her ordeal in SICU (surgical intensive care unit) on a boatload of drugs and a ventilator as she could not breath on her own.
on March 21 she moved to IICU (intermediate intensive care unit) which specializes in removing the ventilator. She has recently come off the ventilator (YAY!!!) and she is now eating, drinking and of course talking!!! I hadn’t heard her voice in 2 months and was soooo glad to have her playing tricks and being back to her old self…. then came the realization. Once she was off the ventilator and able to talk she was more able to express her emotions.
I can only imagine what her mind and body is going through right now and I want to do my best to help but am not really sure how. Our days are now spent being angry, then crying then being happy for a bit and repeating this cycle… which I’m sure is normal.
Before her accident she and I were not very close but afterwards we have both come to realize that life is too short, so she has been asking me to help out with some of her personal care I.E. brush her teeth, shave her legs, brush and stlye her hair and most recently make up. I love doing these things for her and will continue to do so if she wants me to but I fee like im not doing enough.
Lately she has been very emotional which is to be expected but she has also said some very harsh things towards us which im certain she doesnt mean but it’s still very hard to take in. While her boyfriend and I were getting her ready to see a visitor she had a major breakdown.
She said she couldn’t live like this, was giving up, didn’t care about therapy and she just wanted to go home… who can blame her right? then she told us that she didn’t know who to blame for the state she was currently in… the drunk driver who caused the accident, or us her family for keeping her alive when we should have let her die. Her boyfriend and I just didn’t know what to say.
We have been trying so hard to do everything and anything we can to help her with her recovery and now she was pushing us all away which from what I read above with your accident is a typical feeling. The last week or so has been much harder for her and she is slowly getting better as she has good moments but then slips back into the dark.
There are 5 of us (mom, dad, brother, boyfriend and myself) who have been at her side everyday since the accident and are not going anywhere but how does one take the harsh words that come from her anger? I know in my heart that she will slowly come around but then I think what if she doesn’t? To me everything she does is amazing!
They said she would maybe move her shoulders as in give us the shoulder shrug once in a while and I am estatic to say that she has much more movement then that!! She started to regain feeling in her right bicep which moved to her elbow then to her wrist. she can now touch her chin with her right hand with a bit of assitance and is also regaining feeling in her left arm, stomach and bum.
The last few days she has also moved her pinky and ring finger along with her thumb a few times!!! She could also feel me rubbing her toes as well. I guess im just looking for more things I can do for her to help her through recovery. She has an amazing boyfriend who is not going anywhere and takes extrememly good care of her but mentally she is not doing well. she tends to compare who she is now to who she was before the accident and does not seem to see the positivity in what she has already accomplished.
How can we as a family help her through that? She will be moving to rehab next week to start full time OT and PT. she is quite excited to get to rehab but also more excited to go home. She wants to get out sooner than later and we want her to use the rehab experiance to the best of her abilities… how can we make her see that rehab is where she really needs to be?
She is also having huge difficulties with showering and moving from the bed to chair. To her she has lost her dignity and will never get it back… is this a constant feeling you still have or does this go away over time? I think she is also worried about being intimate with her boyfriend as well… but she would never talk about that sort of thing with us.
She is going to be 29 in June and had just started thinking about having a family. She was able to feel a rectal exam the other day which makes me hopeful that she has or will have feeling in her “lady parts,” but is it possible for her to have a family and feel those things?
I guess I’m just trying to make sense of everything so I can do my best to help her in any way I can. again I can only imagine what she is going through and I want to help her see that she is still the same person. Thank you for your time and again thank you for your website!
Hello Ashley, the lack of self worth and let me die feelings are typical as you noted to anyone with paralysis from spinal cord injury especially quadripegics or tetraplegics. They will become less frequent but never cease. I still have my bad days like anyone does and will continue to.
When you find it hard to hear, keep this in mind, when we have our worst day tomorrow can only be a better one. Often the underlying reason for vocalizing such feelings is hope of it simply being heard, and possibly that someone cares. The feelings don’t need help or fixing, acknowledge them with a reassuring nod, wry smile, hand on her shoulder, tell her you care for and love her. That’s the best you can do.
I used to make similar comparisons, “The old me died that day and I can’t get him back, I have to start over, a new me.” My family and friends never fully understood that but I bet your sis-in-law would. It is hard to find dignity in someone else wiping your bottom. In time acceptance is about the best you’ll get and with that some dignity will be found but more-so in achieving goals. Again reassure her you have and will love, who she was, is and will be.
When sister-in-law starts to become angry move your seat back a couple of feet and go quiet. Break the cycle by not participating in or entertaining the conversation. Of course if she is being abusive, you have every right to pull her up and ask her to not speak that way, to show some respect. Quadriplegia doesn’t give one the right to be an ass.
The movement and sensation she is gaining is very promising. Many quadriplegics even with her current status have children these days. IVF (invitro-fertilization) epidurals and c-sections are common to many mothers. The ability to love, engage in sex, fertilization, pregnancy and birthing should remain almost unaffected except of course lack of sensation, poor self body image etc. It’s unlikely she will ever regain full sensation in her lady parts.
You (and boyfriend) might benefit from reading our Wheelchair Sex After Spinal Cord Injury article. The best thing I can advise you do is continue what you are already doing. Tell her and show her you love her without expectation. Leave pushing rehab to the OT’s and PT’s. Try not to place too much pressure or importance on regaining sensation and movement. I’m quite sure sis-in-law is already placing enough of that on herself. It can be very disheartening when it doesn?t come.
I hope this helps and answers some of your questions Ashley. Be sure to take time out for yourselves. You need to be strong before you can support others. My best wishes to you all.
*Comment moved here by Graham* My husband fell off a ladder one year ago this Sunday. The entire year has just been gtting use to the new life. C3/C4 central core syndrome. Pool therapy and lots of support, but it’s getting hard. What about technology? Voice activated computers? Automatic wheel chairs?
We cover those above Sherry. Please ask if you have more questions.
graham, I thank you for your site. I am amazed at all the entries. Seems like you’re the only one dealing with this when it is happening to you. What advice do you have about selecting the right wheel chair (electric). In the states Medicair, which my husband (70, he likes speed too) qualifies for, pays for an electric chair every 5 years. So, we darned well better like it unless we have lots of money, which we don’t. So, any advice on how to deal with they system?
Reading these posts have been a lot more interesting to me being quadriplegic, than i could have imagined. 10 years, after a long fall at a ski resort. Being able to recognize so-called stages of recovery, many are like myself, trying to learn more about a subject of being in a chair, or relations and using posts to relate to female perspective. I was blown-away by, `grace’? Loved her friend so deeply, after saying that they were not close, prior to accident.
nick
Thank-you Nick, it’s always nice to hear what we do has value.
Hi Sherry, I popped over to your blog and read your wheelchair post the other day. For me choosing a power wheelchair is all about lifestyle. I’m adventurous so; compact to navigate a regular house and shops, well sealed components for beach and rainy conditions, large 52 amp/hr batteries and speed as I often travel more than 10 miles in one day, decent torque to get me up steep hills fast, undercarriage clearence to bounce up steps a brick high etc. Then I consider comfort; padded armrests as my arms are skinny, power tilt to sleep in my chair, and so on.
In Australia we have similar schemes, MASS (Medical Aids Subsidy Scheme) which is funded by the govt. and contributes upto $6400 AUD toward a power wheelchair every 5 years. There are some options like a MASS “one off payment” and other schemes to bridge the gap if your powerchair costs more than that or you can pay the difference yourself. Ask at Medicair or enlist the help of an Occupational Therapist as they would know best what’s availible in your area.
Hi Graham, Ashley back with another question! But first I thought you may want an update on my sister in law :) She is now able to hold her right arm up and move against gravity (she has an easier time pulling the arm in rather than pushing it out) but it’s a great start! She also has had feeling move down from her right wrist into her palm and can now also feel her right thumb. She is also working hard to gain more in her left arm which is slowly coming back as well.
Things are okay we have been waiting 5 long gruling weeks to get her into the rehab program with little to no sucess as there is a superbug infesting the ward and they will not allow new patients in. Her mood is somber due to not being in rehab but other than that she has really turned a corner!
Anyhow, I have a question regarding family… My boyfriend (patients brother) works really hard and long hours and sometimes does not have the energy to go up and visit her. He normally wakes around 5:00AM and is out the door and then does not normally get back to his place of employment until anywhere from 6:00 to 8:00PM (operates heavy machinery) He loves his job but feels really guilty some nights for not going in for a visit.
I have finally convinced him after 4 long months to take at least 1 night off per week for himself so he can rest and be in tip top shape the next day for a visit but he still feels like his sister and parents are dissapointed in him for not going…(parents and boyfriend of patient have not worked since the accident.)
My boyfriend and I are not on salary, therefore if we don’t go into work we don’t get paid and when your saving to buy a home that can make things difficult. I’m very worried that he will end up hurting himself or someone else on the job site due to lack of sleep and I don’t know how to encourage him to take the time he needs, or if it’s even my place to say anything at all.
His family (sister included) have all dropped little comments about the time he spends or doesn’t spend at the hospital but no one has actually tried to talk with him about it so he gets pretty frustraighted with them as he loves his sister and wants to be there as much as he can to help her however he has also worked extrememly hard to get to where he is today with his job and is not willing to give that up either.
I guess I am asking you whether or not I should try and talk with him on this and if so what can I say to help him better understand how to talk to his family about this and what to say to them. Our family has very poor communication skills but this is something we are working towards changing and want to do so in the right way.
I think because his family spends all of their time at the hospital they expect him to do the same with every free moment he has but it’s also hard on me as well because I also work full time and then go home every evening to care care of the cleaning, cooking laundry etc… so he can spend time at the hospital instead of worrying about housework. He feels bad also for me as well because he doesn’t think it’s fair that I should pick up the slack for everything.
I guess were really just wanting a piece of our lives back. We in no way want to stop going there, we just want to be able to take a night off without feeling bad. What do you think? Thanks again for all your help, you should get into public speaking!!!!!
Hi Ashley, nice to hear from you and that sis-in-law is progressing well. Sis-in-law and I have quadriplegia in common but are probably two totally diffefent personalities so outside the clinical arena I can only share my personal views and experience.
I cannot recall ever saying anything about people not visiting, in fact the opposite, I don’t like people visiting me in hospital. I felt strongly that I alone was responsible for my accident and therefore it should not become anyone else’s problem. I felt like I was a burden when people went out of their way to visit (and there were hundreds). I encouraged them to not change, continue on as normal and provide that familiar stable base for me to build on.
Your sis-in-law sounds a bit different. Still I feel it’s totally acceptable that your boyfriend only spend as much time with his sister as before the accident. No special treatment. Being time poor perhaps he could write some nice quotes, memories, lyrics, jokes etc in cards for you or family to take to hospital. The feelings of guilt he carries are his own and typically us blokes like to work thru things on our own in our own time. Certainly you could point out, she had the accident not him so why should he have to change, or pay for it? He shouldn’t. Avoid continually pushing that point of view though as it could turn around and start to reafirm guilt. Once or twice is all he needs to hear. Hearing similar from family could also relieve alot of his guilt.
Allow me to tell you Ashley, it’s not your fault either, let any of those notions go. You and your boyfriend have your own lives to continue on with and so you should. What night of the week is your night off? You see, we all need to take our own advice sometimes. As long as sis-in-law knows you guys love her you’ve done all you need. Keep smiling, it makes the world a little brighter.
I’m a paraplegic due to a diving accident in 2006. I was just a few weeks shy of my 14th birthday. Almost all my friends stopped talking to me after it happened. What you’re doing with the website is awesome. I don’t know anyone in the same situation as I am so I always felt alone. Despite all this I managed to keep a positive mindset and went back to high school two years later. It was quite tough. For a long time everyone shied away from me and made all sorts of ignorant, cruel comments. Gradually things got better and I made great friends.
I still have many challenges like, how will I go to college and how will I cope with life later on. I missed out on many things due to my condition. I saw (and still see) my friends go out, party, go to sporting events and just have fun, all the while I dealt with all sorts of therapies and barely left the house. I still miss out on many things. I’m turning 18 soon and most people my age are having the time of their lives. I can’t join in because having me around slows everything down. I would like to go out sometime, meet new people. Even after making new friends, I never got invited to anything. They’d make plans right in front of me, invite everyone while I just sat there. I don’t admit it but, it does hurt. I started dating, it was nice. Then the guy dumped me because we weren’t having sex. That sucked a lot!
I’m starting to feel like I’ll be alone for the rest of my life because of my condition. I was wondering, will I ever be able to have sex or children? P.S: Thank you so much for putting up this website because now I have a place to talk about all I’ve suppressed for so long.
Graham. your story originally posted on august 29 2009 was inspirational. thanks for sharing the physical and emotional story. I can not relate to your journey as other bloggers can… I am on the flip side, a health care student trying to understand more about the injuries. I study Occupational Therapy in the USA. I write you because I see how well you have done recovering from your injury mentally, emotionally and physically. It takes a truely strong person to do what you have done. I am not certain , in reading your story, are you an incomplete or a complete paralysis? Do you currently have any LE control? Again, I am an OT student and please forgive my niavity… I am not trying to be disrespectful just inquisitive.
Hi Tasha! My name is Ashley, I have written Graham above regarding my sister in law. She too was in a car accident back in late Feb of this year and is a c4. She is a bit older than you (just 29 in June) but I can see some of your struggles in her as well. I’m glad you had the stregth to go back to school! That took a lot of courage and stregth so don’t dumb it down!! I bet you did great too! With regards to friends, if they didn’t stick around they weren’t really good friends anyway… I watched some of my sis in laws friends come and go as well. She has had one really strong supportive friend that comes about 2 or 3 times a week to see her but the rest don’t really come around.
I too asked Graham about sex and children because sis in law was just settling into her new career, just bought a home and was thinking of starting a family. From what I understand, as long as you are still ovulating (or having your monthly visitor) this is possible! He directed me to another post on the site about wheelchair sex, maybe this could help answer more?
You seem like a bright young lady and as you get a bit older I’m sure you’ll notice people coming around more, but then again don’t wait for them! If you know your friends are going out go meet them there! That will let them know you can still go out too without the drama :) Or if you would like to meet new people go out and do it! This way it’s on your terms too and you might find it easier than waiting for others. I know that helped my sis in law a lot. she is currently in rehab and was pleased to meet other people and made an effort to do so… I really think it helped to boost her confidence. Stay strong and keep your chin up. I hope you find true happiness!
Tasha: what’s your bra size? lol I’m just kidding, I think it’s fantastic you value your body enough to say no I’m not ready for sex when so many teens these days give it out like candy. I read a study in Australia some time ago where 80% of school children reported losing their virginity before the age of 13 and many had had multiple partners. Now you’re a paraplegic you deserve even more someone who respects you, is patient and understanding of your situation and feelings. The older you get the more likely you?ll find these people so don’t feel like life is passing you by, you’re heading for a new found deeper relationship. Keep smiling and it will come.
You can have sex as you would regularly Tasha, following a spinal cord injury vaginal lubrication, ovulation and the likeliness of falling pregnant all remain much as they were prior to injury except for limited to no sensation. Even birthing is quite straight forward given good health. As Ashley suggested (thanks Ashley :) I explain in depth in the wheelchair sex article and agree getting involved with a local wheelchair user community type support group is a good way to meet new like-minded people. They may also know of resources to assist in your transition to college.
Emotionally, I too felt undesirable and occasionally I still do, but I’ve come to realize, everyone does. I believe there’s a big difference between having sex and making love. It was many years after my accident before I experienced the latter as I also believe you need to love yourself before you can let anyone else love you. I hope that helps. I know how it hurts to be left out. Friends say, “Well you can’t go anyway.” I respond, “I know but it would’ve been nice to have just been invited.” Being excluded is a horrible feeling, it’s ok to quietly voice that to people who exclude you, often they don’t even reaize they were. I and others would be interested in reading more about you and your life experiences as a paraplegic Tasha. If you’re willing to express and share I’d love to publish your story here.
Yesmam: thank-you for your kind respectful words. I?m a C4 incomplete quadriplegic and as such have no voluntary lower extremity (LE) function and very little sensation from my nipples down. My legs do however spasm often to a point of great annoyance kicking over 8640 times/day. I can achieve sustainable reflex erections with a little coaxing. I have partial bicep muscles but no triceps, supinator (turn palm up) muscles but no pronator (turn palm down), and no wrist or finger movement or sensation. I am not able to transfer myself using a sliding board or by any other means. I try not to dwell on what I can?t do, rather what I can. I?m a Gemini by the way ;).
Hey Ashley, It’s good to know that I’m not the only one who’s been in such a situation. I’ve always known there were others like me somewhere but didn’t have concrete evidence. I’ve been to rehab too but everyone there is para, not quad like me. This doesn’t bother me but sometimes I wish I still had the use of my fingers; writing in school was not the easiest thing for me.
Thanks so much for the great advice. I’m gonna put it to the test very soon actually. I’ve decided to throw a party for my 18th birthday in a few weeks :)
The post on wheelchair sex is really helpful.I’ve missed out on so much.I’m happy to now know I don’t have to miss out on so much in life (not to sound like a hedonist).
I may be on the verge of finding true happiness :). A young gentleman showed interest the other day and we’re going on a date on Monday. Wish me luck!
Graham, I’m pretty well endowed up top, somewhere in the “D” neighborhood lol. Oh, and I’m quadriplegic by the way. It’s so good to know there’s someone out there who knows just how I feel. It’s like you’re inside my head! I’ve always known that I’m quite the catch. When my ex and I broke up my self worth really fell.
You’re right, I do deserve someone who respects me and when I find him, I’m sure the love making will be incredible! I’m in no rush though. The article, wheelchair sex, is more helpful than I could’ve imagined. I had so many unanswered questions about sex and didn’t know who to speak to about it. Talking to my folks on the subject would be too weird, and they probably wouldn’t know what to say. Friends would be plain uncomfortable I’m sure. I would love to share my story, now that someone is willing to listen. Should I post it as a comment or would you like me to do it another way?
Tasha, I sent you an email. Best of luck for Monday! ;)
Hi Tasha, Glad to hear, gussie yourself up and go get em! Keep postive and smile, I look forward to reading your story! Good luck :)
Graham, I’ve just stumbled upon your story while researching quadrapelgia (sp) My boyfriend of 11 yrs was just injured on Monday 7-5 and has a broken neck and severed spinal cord. He has movement of his shoulders and some in his arms but nothing below the chest. I’m afraid, I’m ridden with guilt and I cannot seem to process this. I want to ask so many questions…I’m lost…. Mary
Hi Mary, sorry to hear about your boyfriend. For a quadriplegic to have arm movement so early on is a good sign. It’s common to feel guilt and think of all the “if only” scenarios. Might help to get it out in the open and tell your boyfriend but be ready for any reply from him, good or bad. Then leave regret behind and try not to dwell on it, as it won’t change anything. You guys still have each other and love. Many here have been thru and are going thru what you and your man are. You can ask us anything.
Hi Mary, I’m a quadriplegic too and what I’d strongly suggest for you is to treat your man as you always have. Be patient with him even when he acts a little like a jerk. He’s still taking in all that’s happened and has as many questions as you do. He is probably as lost as you are too so just hang in there and, as Graham said, you can ask anything.
Thanks very much for the very detailed account of your accident, and your life at this point. You are undoubtedly more courageous than myself. I am sure you do “NOT” want any pity, therefore I will attempt to show none. However if i do without even realizing it, please excuse me. I am so very thankful that my accident happened when i was 72, and i am also extremely happy that I am a paraplegic and not a quad like yourself.
I too had quite an exciting life before my accident. I almost rolled over my car when i was 18 years old. A friend and his buddy decided to race down a street in Lansing Michigan one day. This street was a four lane highway, thankfully not much traffic at that time, this was 63 years ago. In the process of this race I was forced to get into the oncoming lane of traffic. In a very short length of time some “dummy” was coming at me head on. We raced past this “dummy”, me on the passenger side and my friend on the drivers side. In short order i had ventured too far to my left. Both wheels on the drivers side went over the curb and the car went up on two wheels. Lucky for me the wheels returned to the ground. If the car had rolled over, more than likely it would have finally stopped almost in front of my parents home.
I fell asleep while driving home from Lake Michigan one day. I had entered and successfully completed the first “one man” sailboat race across the lake. I had sailed all night without any sleep. If I had done what my wife told me to do, I would have slept on the boat and came home the next morning. Being the person that I am, I told her I would see her in a couple of hours, that was not about to happen. Driving on the freeway going through Grand Rapids Michigan I awoke when I sideswiped another car. Fortunately for everyone, there were no injuries, just some wrinkled fenders on both cars.
I could list several more times when I possibly escaped death, several of them while being a Firefighter, however i will not bore you with my life. I am forced to say once again. You are a very courageous person. The very best of LUCK to you in whatever venture you undertake. If by chance you have another accident, I say to you. The person who goes through life and is fortunate enough to have never had a life changing event, perhaps that person has never really lived. Please, keep in touch. Al
Have you ever noticed how people who have experienced NDE (near death experience) never wear a watch? If you Al, or any of you guys and girls are willing to write about your life story like Tasha did, your accident, experiences, etc. I’d be more than happy to publish it on this website. Thankyou for your kind words Al. Many people take pity as condescending, I don’t, I feel pity is a form of compassion and empathy. I do miss my hands very much but can move my arms and breathe independently, as they say, there’s always someone worse off. Makes you thankful for what you do have.
Like most wheelchair users are more aware and appreciative we’re living as you say Al so don’t worry about offending anyone here. During my initial 11 month hospital stay there was an older guy (60+) whom I called Uncle Arthur laid up in a bed opposite me. He broke his neck surfing at Noosa as a lad, the fractured cervical vertebrae only temporarily paralyzed him at the time and he walked out of hospital after only a few weeks. Now his injury had come back to haunt him with numbness and paralysis increasingly occuring in his limbs. The prognosis was, “to increase with age.”
Why am I telling you this? One day Arthur said to me, “At least I got to live my life, you poor bugger, you’ll be stuck for life as a quadriplegic, such a shame.” I took that as pity, offensive condesending pity and replied, “Yeah I might be stuck like this for life but at least I’ll stay this way and have a life, you’ll gradually get worse everyday until you die.” I regreted it as soon as I said it. His eyebrows narrowed, his jaw went slack and he looked away at the realisation. I learnt to accept pity from that day on. When people offer to help me, buy me a drink, tell me they feel sorry for me, I say thankyou but I got it pretty good, retired at 26, have a different girl visit morning and night, they cook clean and stock the fridge with beer, some even mow the lawn. I have time to listen and see beauty where most never do. Uncle Arthur passed away a few years after that day. I still think of him and appreciate life and what I do have a little more.
Hello,I am from India.I am 25 years old.I am dating a man online,who is 39 years old and is quadriplegic and he is from Canada.He is very practical.I don’t know what to talk about with him.
how to impress him?
Hi Sania; It’s yin and yan, quadriplegics are usually very practical or total goofballs. I try to balance a bit of both but have to admit I’m more the practical kind. So when you say “He is very practical.” it tells me a great deal, I totally get it (him). I’m sure he can tell if someone is being fake so just be your lovely honest self. As you guys are dating I’m pretty sure you have already impressed him. :)
Canada is one of the more advanced nations when it comes to disability and wheelchair users. Talk with him about the same things you talk to your other friends about, your childhood, social events, culture, movies, bollywood, news.. your hopes and dreams.. just regular conversation. If there are specific questions you have about what he can/can’t feel, love, sex, how he toilets, emotional issues, having children etc just ask him straight up. Or you can always ask me to explain things.
Wow. I really enjoyed your story. This can happen to anyone – who knows what’s around the corner in life. I have a close friend who could benefit from your website. Thanks.
Hello Graham!!!
Ashley here again writing to you looking for advice about my sis inlaw.
Since we had last talked things have definatley taken a turn for the worse with regards to our family. Let me start by giving you some good news. My sis in law is currently in carlsbad, california attending project walk. It’s a great physical excerise therapy program and she has been making more progress! She can now control her power chair well with her left hand, she can lift her right arm and touch the top of her head, she has moved her right thumb and regained more feeling. Unfortunatley her brother and I have not been able to share that with her as we are no longer speaking with her.
I guess it all started about a month and a half ago. I was waiting to hear from my boyfriend as he was working late that evening and may have needed me to bring him dinner when I received a msg from my sis in law and her boyfriend asking if I could come over to wash and stlye her hair (I had been helping them with this for quite some time now.) I sent them a msg back letting them know I wasn’t sure what was going on that evening but that I would let them know. I got what I perceived to be a really rude msg back telling me my sis in law can’t understand why I can’t spare 10 miuntes to come and help her. I was really offended by this as I felt I have always commited a lot of my time to helping her with personal things (girly things) and the one time I couldn’t get there when she wanted me to she made it out to be like I never helped her.
I did msg back and let them both know that it wasn’t that I couldn’t “spare the time,” it was that I was waiting to hear from her brother. I did end up having to go bring him dinner and I talked with him about what had happend and because he felt his sister was out of line he asked me to not go there that eveing to which I abliged as I felt uncomfertable and hurt anyway and didn’t really feel like going.
I did not go there the next day either and after a lot of thinking I spoke with my boyfriend and told him that I was really hurt by the way his sister talked to me and I felt that I was owed an apology. He supported me and I also asked that if his sister were to bring this up with him to not get involved as I didn’t think he should be stuck in the middle of a fight that he wasn’t a part of. After a few days he did go over and see her and she did ask him about our fight. He simply told her that it didn’t involve him and that we should work it out ourselves. She then said to him that “she didn’t need any of my petty bullshit,” (referring to me) and he got offended by that comment and told her that talking like that was unnacceptable and that he was going home. She then called the both of us every name in the book along with a few expletives as he was leaving.
After that moment we both chose to not see her again until she had realized what she had done and apologized.
That was in early September. In mid October his parents let us know that she would be heading to project walk at the end of October. My boyfriend recieved a letter from her 2 days before she was leaving and it basically asked him how he could do this to her, and he promised he could take anything she threw at him and that she didn’t understand why we were both mad at her and said once again that she didn’t need any of my petty bullshit.
My boyfriend and I both wrote letters back to her the same day explaining why we felt the way we did and why we had chosen to stop seeing her and emailed them to her and her boyfriends shared account. We never heard back from her.
My boyfriends parent went up to California with them for the first few weeks to help get them adjusted and comfertable and when they came home they informed us that my sis in laws boyfriend and seen our emails, opened them, read them and then chose to not tell her about them. We were sooooo mad!
My apologies for giving you this long winded story, I was just worried you wouldn’t get the full picture if I didn’t explain fully.
Basically I am just on the fence and unsure of what to do. Some days I feel really bad and feel like I have abandoned her and other days I say to myself, no you deserve to have a life too and too bad if you can’t always be there.
I just want to know if I am being irational about this or over the top. I really did go out of my way to do things for her and help her in any way I possibly could. I felt really unappreciated when she said what she said because I felt as though she expected me to do things for her and it had to be when she said.
I can’t imagine how she feels and I know she has a lot of bent up anger about her accident and her injury. Counselling has been sugguested to her but she isn’t willing to go. I know that she is dependant on others to do some things for her but in all fairness we can’t always be there when it’s conveinant for her. Am I wrong, am I being selfish? and either way what should I do???
Again sorry for the rant and thank you in advance for your words of wisdom.
Ashley
Hi Ashley, you and your partner have every right to live your own lives. She has obviously been taking you for granted and that is not a nice feeling I’m certain. As we discussed previously, having a spinal cord injury, being a paraplegic, quadriplegic, or any reason for use of a wheelchair, does not come with an automatic lisence to be an ass. In fact wheelchair users should be, and usually are, more appreciative as they realize just how valuable a hand can be – even with the little things.
I don’t feel you have been selfish at all. Your sister-in-law asked you a question and you gave her a reasonable answer. Instead of carrying on like a narcissistic diva she should have said no worries and asked someone else for assistance. Given some more time she may come to realize her mistake and apologize. If she doesn’t, no contact is still better than being used. ~hugs~
Oh God! Thank you so much for this site.
My partner is c4-c5 incomplete after a diving accident 14 years ago, he was 26. We met 2 years ago playing an on line war game, so I met the man first. We chatted on the game chat and instantly hit it off, his sense of humour, his loyalty, his intellect so many things. As typing was difficult for him we moved to microphones and spent huge amounts of time with each other talking or not. I spent hours just listening to the sound of his breathing and or snoring.
We got so in turn to the rythms of each others day, that they started to dictate our lives, we would log in simply to find each other. Thats how I lodged the first complaint about his care. I hadn’t logged in for 2 days so I rang him only to find he had no carer turn up. The third day I got abit peeved, so searched the net to find DSQ, and emailed a complaint.
I lived in NZ at the time, he lived in Queensland. Life turned to custard for me in January this year so I thought bugger it he’s not happy and hates Christmas, my life sucked, so, I suggested that for Christmas 2010 I come to Oz for a holiday to visit and we do a big family Christmas at his place and if needs must we could be miserable together.
Somewhere and nowhere, maybe always our relationship changed, we admitted to each other how much we had come such a huge part of each others lives. We bought web cams, we never turned them off and for the first 3 weeks I slept in a chair in front of my computer witht he camera on. Until I moved my bed into the lounge and started selling everything I owned and shutting down my business. I searched the web for every bit of information I could find on quadripelgia and learnt about things I never thought I would.
In August I came to oz for 4 days for his birthday, it was like coming home, everything about being here felt so right, he felt right, nothing about him or his care daunted me. I returned to NZ for a week to finalise my life, pack up my daughter and moved to OZ a week later.
We have struggled ever since, we have had to deal with the education system, housing, centrelink, immigration, advocacy groups, service providers, carers and family and not one of them has been a positive experience.
I have scrubbed a house that hasn’t been cleaned in 14 years, I have taken on all his care and do everything he asks me to do. For 14 years he has been at the mercy of some really questionable carers and his service provider is now subject to a massive complaint including human rights issues.
He is precious and paranoid about his health, but at the same time disinterested. He expects me to be beside him 24/7 and I do indulge him as best I can without going insane. He has spent 3 years in bed because of a pressure sore that he has had for 5 years and won’t heal, at one point I sat and listened to him talking to me as a blue nurse pulled maggots out of this sore. It is now healing. He ate takeaways for years because he didn’t trust carers, he now has fresh cooked meals and is even on a diet to lose weight and improve his health.
This man gets all of my time and all of my attention, I have spent thousands improving the state of his home and replacing really suspect appliances.
In a fit of depression he now tells me I ignore him! I have been told so many things in the last 4 months, if I go to the shops it’s because I can’t wait to get away from him, what it is really is that we need something so I wait until a carer gets here and I go and get what we need. He thinks I should send a carer to do it and take my chances on what they bring back. Carers should do all the housework, they hadn’t done it for 14 years but if I teach them what to do then they can do it. I have little faith.
Everytime I turn around I am the one doing something wrong that upsets him or adds to his depression. I have corrected so many issues for him and he just seems to get angrier and angrier at me, whether it be because he can’t do manual tasks and I can or because he can’t and doesn’t particularly want to have sex. Rather than try and explore he gets angry and gets stoned.
I am at my wits and and don’t know what the hell to do anymore, I don’t want to abandon him, there used to be so many admirable qualities about this man, that I fell in love with him.
I’ve even had to ask him to at least say good morning to me, he says it to carers, my daughter, and evryone else that walks into his house, after 4 months I have to ask. And that sort of sums up whats going on.
Please, please what on earth do I do to get him some help to deal with whatever is going on for him or do I just give up and go, which I really don’t want to do.
Ur insight would be much appreciated.
Jo
First i must ask does he have gov funding?
I would be putting my foot down and make him realize he has a life to live, but also you do too. There is life after spinal cord injury and he needs to be reminded of that. You are his partner not his emotional voodo doll, that he can just stab at when he wants to. The carers also need to be taught what they are there to do, or get new ones. There are a lot of very good carers out there that enjoy what they do, and they care for both the clients and partners needs because they see that it’s not only about the client.
Remind him of why you came here to live, the man he was 4months ago, and just how much you do love him but want and need the other him back.
mazza
Jo: One of the first things I typically ask people having relationship problems with wheelchair users, quadriplegics etc, if they were not in a wheelchair, had no disability, what would you do? It is never going to work if you stay out of pity or guilt. But first, there is an even higher priority here. In all my relationships my partners and I shared the philosophy, the children come first. What is best for your child? She is the number one priority.
I’m not suggesting you let her screen your partners or dump men because she doesn’t like them. I am saying be careful to not let your relationship troubles affect her. If your relationship is damaging her, if she feels insecure, unsafe, caught in the middle, if she is being negatively affected in anyway your primary responsibility is to protect her.
As a quadriplegic I can tell you long term forced bed rest is incredibly frustrating and destructive to emotional and intellectual well being. You could rebuild the entire house around him, do back-flips, hire strippers, feed him grapes.. he will still find something to complain about. That is not your problem, it’s his. You cannot change it, only he can, so stop trying. The best thing to do when he complains is walk away. I would be willing to talk to him if you wish.
One of the fastest ways to destroy a loving relationship is to make your partner your carer. I have seen it happen over and over, you can read about it on this website, you will lose yourself and just become a pair of hands. If you both wish to even begin mending your relationship you must cease doing his personal care period.
Now this is something you can control Jo. He needs to be told straight up, no more personal care or you are gone. He got along fine before you and will again. If he now needs extra care I can put you onto some decent care agencies and help him apply for greater funding.
It is pointless for me to offer further advice until these two happen. Children secure, personal care ceased. Without them Jo, you might as well start packing your bags.
Jo: First, may I say that I am sincerely sorry about the situation you find yourself in. That being said, I think sometimes we create our own problematic situations. You noted in your comments that you used your computer to listen to your boyfriend’s breathing for hours; would you have done this if your boyfriend was not paralyzed? You wrote that you lodged complaints about your boyfriend’s care instead of allowing him to take care of his own assistance program; would you have done this if your boyfriend was not paralyzed? You’ve spent thousands of dollars and devoted hours to upgrading his care, while at the same time your boyfriend expresses increased anger.
Jo, this is going to sound really harsh, but what I am going to say comes from my heart in the hope your situation can be improved. Your man is not a pet to be watched for hours on the computer. You cannot expect to learn everything there is about paralysis from a few websites and expect to fully understand what his needs are.
Let your man be a man. He is in charge of his health care. He is the one who is responsible for what his carers do. If he fails to care for himself, that is HIS responsibility. If he asks for your help with negotiating alternative care, then help him. You cannot rescue someone who does not want to be rescued.
Your primary responsibility, as Graham mentioned in the above comment, is your daughter. How is she doing during this upheaval? Suddenly moving to a new place, meeting your boyfriend, going to a new school, watching her mother become distressed: these are all triggers which could cause problems for her. Should your daughter be around someone who is using substances to cope with his depression?
You are dealing with a number of stressors, please take care of yourself and your daughter first. You will find more strength to cope and your daughter will appreciate the attention from her mother. Look for a support group or friends you can turn to , but ultimately it is you and your daughter who should be your primary concern. Let your boyfriend be the man he is.
Hey man sorry about your situation, but as a paramedic for 5 years I was VERY offended by you referring to the medics who came to help you as “Idiots”. just for your information, a C-collar is not supposed to be comfortable, and alleging that they further harmed you by taking you to the wrong hospital is ridicules, we are VERY WELL TRAINED on how to put a collar on. I doubt they told you to “shut up” and you were told to lay still so YOU didn’t injure your self further, I don’t know how many times i have said this but WE ARE NOT A MIRACLE SERVICE, you crashed into a wall going 60MPH/100KPH and its the Paramedics fault that you cant walk? really? They came to HELP YOU, if you want next time drive yourself to the hospital if we are so bad. YOU PARALYZED YOURSELF, and we bust our ass trying to save people and its somehow our fault when they don’t get a perfect outcome. I hope you read this and maybe think about putting the blame where it belongs.
Nice bedside manner you have Greg. I hope you offer more compassion to those you care for. You sound like the one who told me to shut-up, an event witnessed by my friends wife, a nurse herself, and the senior driving who scolded the rookie. As a paramedic you should know I was completely unable to move at that point, to be told lay still is asinine.
It was one of the state’s leading spinal cord injury specialist doctors concerned over the amount of blood coming from the back of my head who informed me the collar had been fitted incorrectly. Protocol deemed it be investigated. I will not share those findings and results here, suffice to say you do not get severe lacerations to your head from a full face motorcycle helmet unless it becomes severely damaged, mine was not.
Nowhere did I, have I, or would I suggest it was the paramedics fault I cannot walk, nor did I ask them for miracles. Many friends and family said if only they drove me that day, phoned me, talked longer etc. I told them as I tell you now Greg. I was in control of the bike, I lost control of the bike, my accident was entirely my fault. You should be aware with acute spinal cord injuries time to treatment is of essence to best outcomes and as I say, at least now in Australia the nearest hospital first policy has been dropped.
As a quadriplegic of 16 years I’ve met and know many Ambo’s (what we call our paramedics, short for ambulance officers) doctors nurses firemen and police. I have tremendous respect for them all and know the vital duties they perform on a daily basis. You will get the occasional idiot in any profession. In my experience five or so idiots in way more than 1000 is pretty good I think.
I can only imagine how stressful your job must be. I thank-you for the job you do and hope you don’t now judge all quadriplegics by one you may not like. I can see how you read all my paramedics were idiots in the article so I’ll change that part to be clearer, it was just one idiot. Everything stated in the article are provable facts. Right down to my medical records and the scars on the back of my head.
OK, well I do apologize for coming across so harsh, but you must understand being in my profession you have to be “harsh” or you wont survive. I didn’t realize you were in Australia but in the US, to be a Paramedic in most states you must have a degree in Paramedic Science, or Applied Science plus about 2500 hours of job training, so a misplaced collar just wont happen (at least not when I’m on the job”
Its tough sometimes (I’m not trying to complain or anything) to go all out to save people, be scratched at, spit on bled on and ect, and never once get thanked, in fact mostly the feed bad I get is people saying I didn’t do enough or it was our fault, some people need somebody to blame.
What type of collar did they use that cut you so bad? our collars in my agency are foam and plastic and very flexible, and to block the head in we put a really soft foam pad under the head that has adhesive on either side that our blocks attach to, and then we tape the head to that.
for suspected SCI now we have a new treatment that was just approved, we take chilled saline and administer it VIA IV through a central line and it basically stops time and pretty much eliminates swelling witch causes the most damage. I came across this website looking for more information on SCI’s, I’m doing a lecture for medic students about spine injury’s and why it’s important to do your job right and new techniques for spinal immobilization.
So anyway the reason I snapped at you is because I’m really passionate about my job and co-workers, and if i didn’t care about people i would not do this job. and I admit that a few times i have snapped at a patient in the heat of the situation. but the way I look at it is would you rather have a jerk that will save your life, or in incompetent nice guy? I know what SCI’s do to family’s as my sister in-law is a C2 complete and thats quite rough, anyway hope all is well with you.
C2, that is very tough, most die at the scene. If no one has ever thanked you allow me, thank-you. I know the scratching spitting vile patient dilemma having dated a nurse for 10 years. Even more irritating to me are those you help only to have to go back a week later and help again, and again, and again. Some people never learn.
I can’t recall the exact name of collar used on me. Chilled saline is interesting. I’ve heard our ambo’s now carry an injection to stop what used to be called “spinal shock,” the swelling and spinal fluid that strips myelin sheath from nerve endings. I phoned a paramedic friend who will get back to me with accurate answers on them both to post here.
yeah, “spinal shock,” or “neurogenic shock” is caused when your brain can no longer control the size of your vessels and arteries (your brain constantly gets information from the body and adjusts accordingly) when they are no longer under control by the brain they will dilate to there full size. so in turn your blood pressure will drop and cause your vital organs to not get blood. when we use cold saline mainly to slow down the body, and your vital organs are able to survive longer without oxygen. since the spinal chord is living tissue, it will benefit. we were one of the first EMS outfits in the country to try chilling the body or “medically induced hypothermia” and it gave great results. kind of like when they found the “ice man” that was 30,000 years old and intact, it was preserved by the cold. in shock cases we have whats called the “golden hour” and freezing things extends the time.
we were actually sued a few years back, we had a patient who had a C3 fracture, after assessment we found that the spinal chord and p-nerves were intact and the patient had full movement and sensation what we call “intact CMS”, circulation, motor, and sensation an. they were getting ready to board him and one of the rookie paramedics forgot his notebook, and when he went to grab it he tripped over the patient on the ground, causing a complete sever of the spinal chord, and he died three days later. just a little story for you.
The collars that the Queensland Ambulance Service (QAS) carry are called Stifneck and are made by Laerdal. They can be contacted as follows; http://www.laerdal.com/au/doc/124/Stifneck-Select-Collars-Adult-and-Pediatric
Customer Service
Laerdal AUSTRALIA
8 Stamford Rd.
Oakleigh, VIC. 3166
Free Call 1800-331-565
Free Fax 1800-635-835
Graham,
I just want to thank you for sharing your life changing event with everyone. I came across this page while doing a research project for my Medical Terminology course for school. I personially do not suffer from quadriplegia however, I do understand what it is like to have a disability. I have been living with Lyme Disease for 14 years. It has caused me to use both a cane and a wheelchair. Most days I am lucky enough to walk but even on good days I am in an extreme amount of pain. Unfortunately because doctors where I live do not want to treat for Lyme Disease it went untreated for so long that it will probably never be cured. It is slowly destroying my vital organs and has taken a toll on my immune system. Even so I try to stay positive, every day is a blessing and every day is an opportunity to try something new.
I got married to a man that I thought would be there for me but he later decided that my illness was to much for him to handle. But it worked out for the best, I met the love of my life, a man that knows what my disease means and that there is a very real chance that I will end up in a wheelchair in the near future and he stands by my side and supports me no matter what. He isn’t embarrassed to be seen in public with me and loves me even on the days that I don’t love myself very much.
Your story was such an inspiration to read and I am so grateful that I came across it. Again, thank you so much for sharing and I wish you all the best. You seem to be one amazing person!
Anna, when 64 year old Arthur looked across from his hospital bed and pitied his fractured cervical spine from a surfing accident (ironically in Noosa) as a lad was catching up with him but at least he had lived a full life whereas I was stuffed at 26, a quadriplegic for life. I quipped, I may be stuck this way for life now but you will slowly get worse every day. The realization hit him like lightning.
Years later a friend with motor neuron disease told me the worst thing about his progressive illness was the unknowing, struggling with telling his own daughter yes I’ll be at your wedding, not knowing if he’d be able to hold his own head up let alone make the 6 hr flight in 12 months time. Knowing a little about Lymes’ disease I’m sure you can relate.
Having cheated death many times I surmise the closer we come the brighter life shines and more valuable minutes become. It’s all to consuming for some. Best laid plans of mice and men go astray. All we control with certainty and leave behind are our words and actions in the here and now today. I thank-you for making my day with your kind words Anna. Treasure the little things as much as your loves and burn bright my friend. By the way, he did make the wedding before passing away.
Hi, Interesting site, I broke me neck on 1-12-1973 at 20 years old, C6/7 incomplete with a 14 year lifespan on discharge, I spent 12 months in hospital and 2 years in rehab, rehab was mostly drugs and alcohol mixed with some very intense physio and tough learning. I make no appologies for my behavior as I was a mechanic one day and a year later came home a quadriplegic after being a rear seat passenger in a car which rolled 6 times due to mechanical failure.
Managed to get married and lost my wife 20 years later but drove a car and still work as a welfare worker in a prison, ive drag raced a car in sydney for 10 years and have recently met and fallen in love with a wonderful lady, we will be marrying next year so my message to those with SCI is to grab hold of life and bite off more than you can chew and chew like hell, life is only what you make it even if you are able bodied, everyone has problems, the whole point is what you do in return, I hope this gives someone some inspiration to carry on despite any challenge
Hi Owen, I would love to hear more from you. If you are interested in sharing more of your inspirational story with us please contact me through the form at the bottom of this page. Thank-you.
Hi, I am a product design engineering student in Glasgow, Scotland. I’m currently researching into an area for my 4th year final project, and was looking at aides in particular for quadripledia patients in order to assist with the use of arms. While researching into quadripledia i came accross your website. The stories from here are truly inspirational.
I was wondering if you could help me with understanding a bit more about quadripledia and perhaps any parts of daily life you find physically difficult?
My basic thinking is for a product which can be controlled by a control stick activated by the movement of the head, in order to move the arms from a stationary position. This would allow patients to perform simple tasks such as opening door handles, pressing buttons, and assist in places where shops or houses etc have not been designed to account for quadripledia patients needs. As i am still trying to gain an understanding of the quadriplegia condition, do you have any recommendations or problems that may be encountered with this type of product for a patient?
Thanks for any help you can offer.
Hello Vicky, many quadriplegics (tetraplegics) can move their arms to some degree, those who cannot typically have a spinal cord injury at the C4-C1 level, known as a high cervical injury, these and people with advanced MND (Motor Neuron Disease) and MS (Multiple Sclerosis) are your target audience. As far as such quadriplegics go, the main desired functions are to form a grip, scratch their head, adjust bed covers, operate remote controls, raise cup to mouth, turn a page and open doors. Round door knobs are impossible without a grip. Many will already drink through a tube, have electronic doors, air conditioners etc. The major wishes of high level quadriplegics, driving and transferring to and from bed unassisted remain simply that, a wish.
Hi Graham,
I have enjoyed your site and found it to be very informative especially for those who are new to or have not had SCI for long, id generally class those who have not been injured for 5 years or less as new to the crazy world of spinal.
When I had my accident I felt like id been transported to another planet where there were a whole set of new rules and virtually nothing from able bodied life worked anymore, you entered a ” System ” where you were told when to get up, go to bed etc. I have friends who had life expectancys of as little as 4 years, not very good news when your 20, however things have changed and technologies like the net provide tons of information although im still amazed at the lack of info new quads and paras just dont get. I feel this has much to do with the hospital systems which are encouraged to get new patients out in 3 to 4 months whereas I was in for almost a year.
After reading the many questions regarding sexuality, relationships and long term survival I felt compelled to say that in my experience all these issues can be dealt with effectively by maintaining good contact with friends, mixing with a good deal of non disabled people through work, socialisation and talking to others with disabilities, read everything, try most things with care and fear nothing, everyone of us is breaking new ground and by passing on this info by way of these sites we become empowered to change or manage our lives the best way we can.
In regard to the desire for high level quads to drive I must add that ive recently taken delivery of a van ive had converted for driving from an electric wheelchair with remote access from the rear, its a snap to drive and no problem getting in or out especially after dragging myself in and out of my car to a manual chair, almost anything can be done, its always a matter of how much it costs but anythings possible if you want it bad enough,
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