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 24 I knew little about quadriplegia, that was all about to change. Lying in a hospital bed I remember thinking of all the things I’d never be able do again. Now after living in a wheelchair for 14 years I’ve found with determination and help from friends there’s nothing you can’t do.
My Kawasaki and Suzuki Katana 650 Motorcycles
BEFORE LIVING WITH QUADRIPLEGIA
Like most young Australian blokes I was into motorcycles, surfing, fishing, 4×4, camping, and travel. I owned and ran a successful electrical contracting business turning over $128K/yr. I had ridden a Katana 650 around Australia with my brother and two mates and spent five months on a Kawasaki 650 twin riding across USA on my own. I was athletic handsome and worldly wise at 24 years of age. 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
I don’t remember every detail as I lapsed in and out of conciousness. On a northbound corner of the Gateway Arterial Highway near Nudgee where I had seen accidents before, one a deceased driver of an overturned utility whose lifeless arm lay pinned between the door sill and roof at the feet of two policemen taking notes in the dark of night. I slipped off the highway at 100 kph (60 mph) and recall thinking, “You’ve done it this time Graham” as I speared head first toward the southbound lanes embankment. I smashed my cheekbone into 6 pieces, broke nose, mandible (jaw), orbital (holds eye in), clavicle (collar) bones, fractured 3 ribs and shattered 4 teeth, and that was with a $300 Shoei full face helmet on. I would recover from all these but not two badly broken cervical vertebrae in my neck.
The impact on C5 and C6 crushed my spinal cord resulting in incomplete quadriplegia (tetraplegia). You would think at 100 kph I would have left the motorbike behind but no, the hot exhaust came to rest on my hand and I was now unable to move it. Watching smoke rise from my hand of course my brain was sending, “Pull your hand away” messages but these couldn’t get past the damaged section of spinal cord to my limbs, I was paralyzed. The exhaust burnt the four fingers on my left hand to the bone. Having dated a nurse for ten years I knew I would most likely now be a quadriplegic for life.
ANGELS ON MY SHOULDER
Two men in a vehicle behind me noticed I suddenly left the road and pulled over to check. Between unconcious lapses I instructed them to lift the bike off my hand and not remove my helmet or move me. To take my mobile (cell) phone from my belt and dial emergency services on 000 then my parents. Not wanting my mother to find out this way I requested they ask for my father, due to urgency mum was told first, her heart sank knees went weak and a feeling of sickness washed over her. I’m sure my father suffered the same yet a strong quiet man he called my brother hitched the 6×4 box trailer and headed for me.
Between unconcious lapses, the man I would later come to know as “Dave the motorcycle copper” a policeman, arrived at the scene. I recall answering his authoritive 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. I only remember parts of the journey to hospital by ambulance. The paramedics had fitted a stiff collar to my neck upside down consequently lacerating the back of my head. My best friend left frantic alone on the highway was met by my father and brother, his wife accompanied me to hospital. After complaining it felt like my head was resting on a steel bar one to many times I was told to shut up.
FIRST DAY IN PA HOSPITAL SPINAL INJURY UNIT
Side X-ray of Titanium Plate & Screws holding C4-C7 and hip bone block together
I was in the Princess Alexandra Hospital Spinal Unit. The surgeon warned, “You may feel a bump here.” I looked up to see him swing the mallet, whack! Two pointy stainless steel bolts were hammered into either side of my skull just above the ears. Curved scissor like tongs fix to these bolts and 7.5 kilo (15 pounds) were hung from a rope running over a pully wheel attached to the bed head. This stretched neck vertebrae out in effort to relieve pressure on the spinal cord and limit any head and neck rotation that may cause further damage. It isn’t so much the broken spinal column vertebrae, but the level (height on spine) and amount of damage to the actual spinal cord itself inside the spinal column which determines severity of paralysis, loss of function and sensation.
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 the leading spinal cord injury specialist in Queensland at the time, Dr. Vernon Hill suggested an operation to stabilize my neck. Replacing the badly broken cervical verterbrae C5-C6 with a block of bone taken from my hip fixed in place with titanium plate and screws.
Front X-ray of Titanium Plate & Screws holding C4-C7 and hip bone block together
By removing the unstable C5-C6 and bone fragments and locking C4, hip bone block, and C7 together this way circumvents further injury to the spinal cord should I suffer an abrupt impact, fall or blow. Considering my thrill seeking lifestyle, the operation taking eight hours was a complete success, and of huge benefit to me. During a recent annual check-up at the P.A. Hospital Spinal Unit I had the priveledge of catching-up with Dr. Vernon Hill and thanked him for saving my life.
3 MONTHS IN PA HOSPITAL SPINAL INJURY UNIT
My girlfriend left me, it was hard on her and my lack of will to live didn’t make it any easier. I believe you need to love yourself before you can let anyone else love you. I didn’t love me as a quadriplegic. She had a gorgeous 18 mth old daughter. I sobbed, “I’ll never run down the beach, pick her up when she falls or walk her down the aisle. Go find someone who can.” She did but we keep in touch.
I was moved from the 4 bed Acute ward into the nearly full 48 bed Spinal Unit. 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 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. 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.
6 MONTHS IN PA HOSPITAL SPINAL INJURY UNIT
Broken Clavicle & Dislocated Shoulder
I regained some limited weak arm movements enough to push myself one length of the Rehab room. Quadriplegia is weird as no two quadriplegic’s are the same. Some “incomplete” may regain a little movement others “complete” nothing. In rare and often inexplicable cases they actually walk out. I can say, don’t push or expect them to perform anything, all you need do is let them know you love them.
Just as blind people develop amazing hearing and can feel the difference between a $10 $20 dollar note, losing the use of my legs sharpened my other senses. I started to see all the little things. Feeling sun on my face would fill me with warmth, the nervous tone in a friends laugh would make me grin all day (maybe that was the medication lol). My father would smuggle in a six pack of beers on Wednesdays. We’d sit in the sun at the end of the spinal unit and down them. Mum brought fruit and flowers, great to bribe the nurses and trade with other wheelies. The best thing they always brought 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 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 N PA HOSPITAL SPINAL INJURY UNIT
Brain lesion and fractured mandible
Diagnosed as a C4 incomplete quadriplegic with no finger movement or wrist extension I test drove a couple of power wheelchairs and of course, chose the fastest. At 30 kph it’s hard to beat the Quickie P200. Compact and turning on a dime is essential for navigating “normal” households. It can also be broken down for transport in a car. My modified P200 with Jay 2 gel cushion etc. was $9500. Later I bought a van with hoist. Had a ramp put on the back door at my loving parents home, modified my room, shower, toilet and installed an air-conditioner as a quadriplegic can’t regulate their body temp. We don’t sweat very well and so feel the cold or heat. The CRS (Commonwealth Rehabilitation Service) was excellent and even paid for the 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 for a living as a quadriplegic. I followed up leads in accounting I’d started in hospital, began teaching myself how to use a computer and built working scale replica’s of balsa-wood 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 disability or 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. In the early morning light watching my Father gardening a bee landed to pollinate a flower right in front of me. In an instant my life changed again that day. Overpowered by something so tiny overlooked by most. Just another “little thing” yet so incredibly beautiful and I was still alive and there to see it. I felt a tear slip away and grinned at father who was now watching me.
Wheelchair Bound -- Heros Are Made Not Born
LIFE IN A WHEELCHAIR LIVING WITH QUADRIPLEGIA
I’ve been a quadriplegic for fourteen years. It took two years to come to terms with my life as a quadriplegic and think, yeah I’m doing ok, have self esteem, confidence, contentment. Then five years came. I caught myself in the mirror one day and smiled nodding, “Now you’re doing ok, have accepted life as a quadriplegic.” It was an awakening. Shortly after that day I found my Mother with her head in her hands crying softly in the living room. When I asked what was wrong she replied, “nothing, I’m just tired.” quickly wiped her eyes and went on with her day. It was me. The strain of being my primary carer was enormous and 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 mum.
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 file three inches thick. Community groups friends and contacts made over the years all pulled strings for me. Four years ago I moved into my own three bedroom fully 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 continue to advocate for the disability sector playing a key 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 to overcome the stigma of being “disabled.” Hence The Mad Spaz Club and battle for disability funding, public awareness and support. Keep your eye out for us wheelies and all those ‘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 this it will not only answer some questions but help others to not feel so alone. Believe me you’re not alone, one third of the population has some kind of a disability or cares for someone with one. 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-ins on. It’s way slow at 14kph and speed drops significantly uphill. I was told you could get four pole motors for it, lies!! I’m not going to bother rewinding pissy two pole motors.
I should have gotten the Blast wheelchair 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? 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, never Kendy. Let that notion go, focus on reality and what you do have. 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 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.