InstantForum.NET v4.1.4Spinal Cord Injury and Paralysis Forumhttp://www.spinalcordinjury-paralysis.org/forums/Information@ChristopherReeve.orgSun, 05 Feb 2012 01:36:54 GMT20http://www.spinalcordinjury-paralysis.org/forums/Topic4429538-6638-1.aspxHello Everyone!I should have done this shortly after the accident but better late than never!!A little over 3 years ago my father, a master electrician, was inspecting an electrical cabinet(7ft tall, 4ft wide) then they domino-ed. The last one knocked him over and his neck hit a concrete step. This has left him a vent dependent quad. He is currently in a nursing home 2 hours away from me. The last month and this month have been full of good times and blessing!! We now have a van and we have been painting up the college town he lives in! We will be closing on a duplex this Friday! So soon I not be driving to see him! Through this experience I have learned a lot and I have some truly great friends and family that have been there for me and my dad. Just looking for new friends experiencing the same things that I can relate with!Thanks for reading!Les is the Lone Star State :DMon, 11 Oct 2010 16:12:52 GMTLeshttp://www.spinalcordinjury-paralysis.org/forums/Topic4438284-6638-1.aspxHi, I'm a student at Glasgow University, and I'm interested in the role of empowerment in Disability. There are some who go on to achieve great things - how is it done? Who helped ? What was the thing that somebody said that changed thinking and perception? What challenges do you particularly remember? If anyone is willing to share their experience, I will acknowledge the source.So, basically, I'm looking for the turning point - or tipping point. What stopped you thinking "poor me"?I believe that there are powerful lessons to be learned here - if everyone will share!LindaWed, 03 Nov 2010 11:39:24 GMTPioneerhttp://www.spinalcordinjury-paralysis.org/forums/Topic4437639-6638-1.aspxFirst let me apologize if this is inappropriate or the wrong place to post this request. I am a songwriter and aspiring artist who has written a song that I hope will change the way people in wheelchairs are viewed and possibly provide comfort to people who can relate to the little girl in my song. First and foremost I want to make sure that I have not offended anyone with the song. I am not wheelchair bound but have had health issues over the years. While sitting in the hospital awaiting a test, the idea for the song came to me. Since I don't live my life in a wheelchair, I want to make sure that I haven't inadvertently said something that doesn't accurately reflect the thoughts of someone who does. I am posting a link that forwards to my MySpace account. The song is called Smile and should be the first one that plays. I will also post the lyrics below in case you would rather read it and not listen.Please let me know your thoughts on the song. Anything and everything will help. If you don't like it, or if you do, please tell me why so that I can make it better. If something doesn't make sense, or is confusing, please let me know.It is a super low-budget demonstration version of the song, so if you listen, please only judge the lyrics, not the song as a whole. It costs a few thousand dollars to do a song professionally so I do cheap versions on my computer first. The lyrics have actually changed slightly since this recording; the lyrics printed below are the current version.I don't know what I will do with the song since I don't know how well it would do on the radio. If anyone thinks it would somehow help people, let me know how and I will do my best to get it to those people.Thanks so much for your help.Ricky [url]http://www.RickyHarris.com[/url]SmileWritten by Ricky HarrisLittle girl was tossing pennies in the waterShe'd make a wish each time somebody passedHer tiny fist turned white as she wished harderShe said these words, as her last wish splashedDo they realize they don't smile at me?They look at me but don't see who I amI didn't choose this chair or broken bodyI wish that I could make them understandCHORUS I want to run, I want to climb I want to make it one whole day without the urge to cry Brush my own hair, eat what I choose Fall down and not care about the bruise I want to try out normal for a while and I want someone to look at me and smileShe saidMy mama took me to the playground yesterdayKids were lining up as they chose teamsMy heart raced as I hoped...but they looked awayI only get picked in my dreams REPEAT CHORUS She turned and saw my misty eyes, I smiled at her with my best smile Fought the tears but one broke free, when she smiled...at meAs that angel rolled away, in my head I heard her say REPEAT CHORUSMon, 01 Nov 2010 22:37:29 GMTRichardhttp://www.spinalcordinjury-paralysis.org/forums/Topic4418583-6638-1.aspxI guess everyone here has their own stories and I won't bore anyone with mine right now. I just want to find some people to talk to and share with. I feel very isolated in my non-walking world. I am 8 months post, so anyone newer that needs any advice, or anyone older with any to give, please contact me. I am just now getting to the point where I need to reach out and befriend others like me or I feel I may suffocate....Mon, 13 Sep 2010 14:40:46 GMTtracyhttp://www.spinalcordinjury-paralysis.org/forums/Topic4437316-6638-1.aspxMy name is Patrick and I have always worked with kids and their families. I took up boxing at age 49. I had had both knees operated on and a double level fusion on my c spine about 10 years ago and gave up ice hockey so I was looking for a new sport to participate in. I was worried about getting hit from behind but I love sports and I always wanted to box. It went well for a while and I developed great skills but my age made me slow so i took a lot of hits while sparring. Jan. 2009 I took a hit and a bone broke and was driven into my cord at C-7-T-1. It took the docs 10 days to figure out why I was a mess (In spite of the fact that I kept telling them ) cause the MRI they took at first was in shadow. Somehow I lucked out and when they found the damage, and completed surgery, I could still feel my whole body (though it feels like I'm covered in wool below the injury area) and I can still walk, though poorly. I have severe neuropathy and my pain is awful bad, with every symptom in the book, Even with meds the many bazaar types of pain keep on, and I have paraparesis, so by noon I am on a walker, but I can volunteer a few hours a day and I can even train, though my balance stinks and I have a lot of problems. My favorite thing is to teach kids boxing skills, not for real fighting but to develop self esteem and learn self control. Somehow I am able to do this. After an hour on my feet I suffer terribly and I can barely get into the house when i get home, but it's worth it to me. I've only met 2 guys who have The type of results from their SCI that I have so it gets sort of lonely. I am very grateful I came away with so much of me intact, but it's still hard to adjust to the many things that don't work any more. Up until about 2 months ago I was in denial and constantly pushed myself too far. I got really sick because of this so I smartened up. Now I am working on grieving and finding meaning and purpose in life for who I am today. I want to be grateful for what I CAN contribute instead of ashamed for what I can't. Because , as my doc says I didn't get better and I am not in a chair, but I am somewhere in the middle, I feel like no one understands sometimes and I tend to isolate myself. I had another double level fusion on my Lumbar spine in April, to see if it would help me walk better (there was a lot of damage in there too and the pain kept me from walking for more than a few minutes). Oddly enough, it relieved my sciatica and increased my neuropathy! But for sure...I can walk now with my walker pretty far, so the trade off was worth it.I'm here because I want to reach out more. I hope you all don't mind. I don't have usual paralysis but I have enough wrong with me that I think we have more in common than one would see at first glance. I don't mean to come across as a cry baby. It's just that i never have had much chance to express my feelings about the drastic changes I was hit with. I just joined a support group, which I think was a good move. I know everybody here understands this. One day I was ME and the next day i was someone I didn't know or understand. I'm working on it. Every day I still wake up hoping it was all a bad dream but instead the pain hits me the moment I open my eyes and it takes about 15 minutes to stop spasming enough to reach over for my pain meds and wait for them to work, wait for my wife to massage my legs, and then hobble into the bathroom to see if I will be able to urinate or will need to cath. I know this is nothing compared to most folks with SCI. I do. It's all relative though because for ME... well, I am still adjusting. I fight my depression because I know I can help kids , maybe not at the level i used to but every little bit helps those little guys out there. It's what keeps me going. :unsure:Thanks for listening!Mon, 01 Nov 2010 05:58:00 GMTBoxerboihttp://www.spinalcordinjury-paralysis.org/forums/Topic4435416-6638-1.aspxI was paralyzed after having. A pain stimulater at. C5 . Originally a comp quad from c4- much therapy and med changes has me at hoping for more as my body after two yrs still changes. Now a inc quad left. Arm is c4 damage and contracted. Right is c 5 damage with zig sag. Sci to mean signals get through but painfully with. Severe spasms. And tone. Zanaflex I've made huge changes and taught how to use spasticity to do sit to stands and use a platform walker. With awesome afo.s I made. 3. Steps. Recently tried waking in my pool with assistance lol. Ankle weights helped me bare weight vs tippy toe. And kept legs down. Vs going up and face down to drown as has happened. See why floaties vdont work on kids. My. Daughter is giving me the birth blood from my granddaughters cord for stem cells. Due in 9. Weeks. How do I make this happen. I'm a rare quad I've been told. Right leg is challenged more left lets me drive with left foot accelerator and I use a tripin. Electric wheelchair. . Going from no movement neck down to current makes this 48. Yr old eager. Please helpWed, 27 Oct 2010 11:53:36 GMTluvaquadhttp://www.spinalcordinjury-paralysis.org/forums/Topic4430263-6638-1.aspx[size=2][i][/i][/size]Hello all my name is Juliet. My Brother was paralyzed two years ago after being shot in the back, he is T11 complete, he has adjusted remarkably well mainly because of his positive attitude.but he does have days when frustration gets the better of him. he uses a manual wheelchair and drives himself. The problem is when its raining he has to either stay at home,or if he's out stay in his car until the rain stops or someone comes with an umbrella. Does anyone know if there is an umbrella or covering that can be attached to the chair. My brother is a regional manager for a high end jewelry store chain and the rain has forced him to sometimes cancel meetings or work from home. any advice would be appreciated. Thank youWed, 13 Oct 2010 09:23:18 GMTjaylavhttp://www.spinalcordinjury-paralysis.org/forums/Topic4408880-6638-1.aspx[size=2][size=7]Hello everyone, My husband was injured back in 1989 just 1 week shy of our 1st year anniversary, very tough start for newly weds. He was 28 years old when he was injured when a tree fell and hit him in the back causing instant paralysis from T12 down. He has down very well adapting and for 15 years never had any kind of phantom pain whatso ever. He had a friend that was injured years before him that had these pains in his legs and my husband was very thankful that he had never experieneced this. Well, back in 2004 he was broadsided and then the pains began instantly within the first 20 minutes from being hit his lower extremities felt like they were on fire. It has been hell for the last 6 years for him, lots of testing, problems with medications to try to take the edge off the pain. After years of this he is finally down to two meds but I find that he is not himself most of the time and seems to be more and more withdrawn. He was always pretty much a loner but he kept up with this friends, now he barely calls anyone and can really go days without saying too much to me either. I am at a lose as to what to do, he is not one for going to talk to anyone either. He is truly a wonderful man but I fear this pain has changed him a lot, he has no tolerance for any one. Well sorry this was so long for my first post but was wondering if anyone has experienced this and I would welcome your input.Thank you,DJ[/size][/size]Thu, 19 Aug 2010 09:49:39 GMTDonnahttp://www.spinalcordinjury-paralysis.org/forums/Topic4430528-6638-1.aspxI do energy-related geological research for the state of Alabama by day, write SF and fantasy poetry & short fiction by night. I publish a genre poetry magazine, coordinate social-justice actions for my church, and feel very strongly that "pearls before swine" is the funniest cartoon currently being drawn, with "Sylvia" a close second.Wed, 13 Oct 2010 22:05:31 GMTDavid10http://www.spinalcordinjury-paralysis.org/forums/Topic4427241-6638-1.aspxI am still getting over my car accident that happend almost 15 years or more ago. I have C5-C6 "[i]Incomplete[/i]" SCI. I still can't beleive it's taken so damned long to get over it. You'd think after that amount of time had pass I would get over it but nope it almost feel like it had just happened yesterday. I'm guessing that i'm not alone..at least I hope not. Nat..Tue, 05 Oct 2010 12:52:34 GMTnathttp://www.spinalcordinjury-paralysis.org/forums/Topic4397559-6638-1.aspxHi~I joined the community today and thought I would get the introductions going as I would love to hear more about others.The name says it all, I am a Walking Quad, parent, friend, blogger and injured for 20 yrs. I have seen and heard alot over the years and hope to hear from others as well as share my personal experiences.How about others?Fri, 23 Jul 2010 08:18:24 GMTWalking Quadhttp://www.spinalcordinjury-paralysis.org/forums/Topic4405499-6638-1.aspxI WOULD LOVE TO GET TWO STICKERS PLEASE-I HAVE TWO RIGS!:hehe:Wed, 11 Aug 2010 02:38:39 GMTSTEVENhttp://www.spinalcordinjury-paralysis.org/forums/Topic4423992-6638-1.aspxDear all,I recently joined this forum and am not sure whether I ought to be posting here since I was so very lucky (being unlucky!) after suffering a C3-C4 fracture after a fall, with a subluxation C-5-C6. I am not paralyzed as we speak. This was in 2006.After the surgery I was suffering from semi-paralysis left side..it kept coming and going but I was "only" on a respirator for two days and nights...the surgeon and neurosurgeons here (I'm in France) told me that I was very lucky to be alive (which I am) and let me out of the hospital much too soon.I did numerous hours of physio therapy but still lost the ability to work and yet today the doctors seem to not know what is happening to me. I have been in and out of hospitals ever since!I am so tired all the time, I have a pinched nerve in my left shoulder after the surgery (confirmed by the neuorologist) I used to do sport quite a lot and was very active in my professional life. I lost quite a lot of muscle strenght left side and on July 16th this year I woke up in absolute agony...couldn't move at all..Verdict herniated disks S1-L5 and L3-L4 with a pinched sciatic nerve....I lost all feelings in my left side, ##### plus my left leg and foot and hand trippled in size..then the veins burst...this happend on and off for two weeks but in August in France, well there isn't really anyone available for you (its the holidays) unless you want to go to the emergency roomIt has been two months of absolute agony, sorry if I'm complaining too much. I had a epidural last Friday(Spelling??) which did nothing at all... and have been on morphine and anti-inflammatories ever since July 16th.I barely leave my house, its a miracle that my husband is still standing by me, it hasn't been easy for him. The doctors told me that they would like to avoid further surgey, so do I but I cannot keep taking this amount of medication. I have started doing sessions with a recommended Chriroprator, I will see him twice a week as of next week.I am truly sorry for the rant but I would be really grateful for any advice on the above matter.Thank you very much in advance,AnneSun, 26 Sep 2010 18:31:41 GMTAnne_Boashttp://www.spinalcordinjury-paralysis.org/forums/Topic4401643-6638-1.aspxMany years ago, I was the victim of a horrific car accident and now I am a quadriplegic, paralyzed from the chest down with limited movement in my hands. Being wheelchair bound, I am completely dependent on others for aid. In spite of my difficult and extreme circumstances, I do set the highest standards for myself. I have earned my bachelors degree in African Studies and two Master degrees in Social Work & Criminal Justice. Achieving these goals has been motivated by my strong aspiration in improving the quality of my life by setting higher standards with the ultimate goal of earning more, thus trying to become less dependent on others to put bread on my table. No matter what I attain, and objectives I reach, to my complete surprise disgust, my disability legally restricts my ability to work and more importantly, make money in order to decrease my subservience to others. The guidelines set down by our Sate and Nation’s Social Services, restricts me to making a certain amount of money per year. My aid, provided by the state, runs to many tens of thousands of dollars annually, and if I earn more than a marginal amount, I am in jeopardy of losing all my benefits, which vastly exceeds any potential income, making it impossible for me to repay my student loans. This quagmire of legal restraint and red tape, is stifling my ability to “get on”. In short the state supports me by paying for my aids yet denies me the opportunity to earn more than a certain amount so I can get myself out of financial difficulties. My hands are tied and I need your help and advice on how best to tackle this “Catch 22” situation. I want to work; I want to earn; I want to repay my loans – but I am not permitted to better myself. My disability, compound as it is, draws greater burden than ever on my existence, my life. If you could spare some time to talk with me, I would be forever in your debt. Kindest regards, _____________________ Monica Eca4331740@aol.com L ocation: new orleansMon, 02 Aug 2010 12:26:08 GMTmonicahttp://www.spinalcordinjury-paralysis.org/forums/Topic4414068-6638-1.aspxWell, I live in canada. I shovel my own snow, have a little diesel tractor and snowplow my own driveway as I live on 10 acres of grass and have been in a chair for over 20 years. I'm a para so some things are alittle easier for me but if I see it and I think I can do it, well I figure out how. And sometimes it doesn't happen for me but at least I tried. I've fallen off the back of a snowmobile, almost fell off a quad, got into other car accidents and a few other things that got me in trouble but am still here looking for something else. (just don't know what next) I'm 38 and I guess I'm the kind of guy that gets sick of the same things alittle quick so I have alot of unfinished buisness. Which is why I'm here. I have a few more things in life I have yet too do and not enough time too do them. Like everyone else I have a few questions and will post them as they come up or have the time as I type and talk too much as it is! If you have a question for me, lay it on me I promise too be gentle....Wed, 01 Sep 2010 13:40:45 GMTBen s7k 3j7http://www.spinalcordinjury-paralysis.org/forums/Topic4416071-6638-1.aspxMy name is Jerri Lynn, on July 21,2010 my eighteen year old son Chance was critically injured in a car accident. Chance was ejected from the vehicle and broke his neck in three places. The doctors stated that the break in his upper neck was like the one Cristopher Reeves suffered. My son was put in a halo for the upper breaks and had the two lower one fused. Chance has movment except for use of his right arm, after going back into the hospital for other complications we were told that his neck is not healing, he will need another surgery to try to fuse his upper break, the doctors have explained that this surgery is risky due to the location of the break, it is very close to the spinal cord. I am very scared for my son and he is very depressed and refuses to get counseling. Has anyone experienced such a surgery and if so what can I expect?Tue, 07 Sep 2010 00:04:40 GMTjerrihttp://www.spinalcordinjury-paralysis.org/forums/Topic4404891-6638-1.aspxhello. I am a 39yr old paraplegic as a result of an aortic aneurism. Its only been a yr and a half and i am having a hard time both emotionally and physically {i have lots of burning pain}. if any one cares to chat and has some ideas i haven't tried let me know.Mon, 09 Aug 2010 18:51:40 GMTkerryhttp://www.spinalcordinjury-paralysis.org/forums/Topic4407406-6638-1.aspxHello everyone, my name is Deanna I am 39 am a single Mom to a beautiful 15 y/o daughter named Aly. She was in a car accident on May 4, 2010 and crushed T3 and broke T4 and is paralysed from the waist down. (Initally it was the chest down). We just lost my Mama in Oct. 2009 who lived with us and it was unexpected then we moved then the accident happened. We are dealing with multiple dr. appointments & rehab and after spending 10 days in picu at Halifax Hospital after an 8 hour surgery we were sent to Brooks Rehab in Jacksonville for 47 days then sent home to set up dr.s and therapy (that sucks here) now we're going back to Jax on the 26th of Aug. for ten days then being flown to Shriners in Philly, PA for an eval for 5 days then????? I guess back to Jax for outpatient rehab, unless Shriners decides to keep her. She is an Asia grade C??? but has a 70% chance to walk again with intense PT. I', hoping and praying and moving our home into storage until whenever we get back then try to find someplace that's wheelchair accessible. This has been the worse year of my life!Sun, 15 Aug 2010 17:54:39 GMTDeannahttp://www.spinalcordinjury-paralysis.org/forums/Topic4402949-6638-1.aspxI want one of those free stickers, and was wondering if this was the right place to post about that. Also, if someone else wants to post about it, feel free to use my topic.Wed, 04 Aug 2010 21:31:24 GMTRachelhttp://www.spinalcordinjury-paralysis.org/forums/Topic4405325-6638-1.aspxPlease send me a sticker - Thanks Much!Tue, 10 Aug 2010 17:34:54 GMTAMELIAhttp://www.spinalcordinjury-paralysis.org/forums/Topic4404190-6638-1.aspxHi. My name is Christina Symanski. In June 2005 I was paralyzed from my chest down in a diving accident. I'm an artist. I enjoy working in oil paints & teaching others about my situation through my artwork. I was an art teacher prior to my accident. I graduated from Kean University in 2003 with my B.A. in Fine Arts with K-12 teaching certification. I taught in a local elementary school and had about 500 students, ranging from first to fifth grade. I enjoyed teaching very much & miss it terribly. Now I paint (using my mouth) at home & am a member of AMFPA. The work I submit to the AMFPA is primarily still life paintings. I paint mostly autobiographical paintings for my personal body of work.  My paintings depict the struggles I've encountered and my feelings toward living with paralysis. I also enjoy painting social commentary pieces that address the various obstacles of finding a cure and current issues that impact the disabled community at large. I've exhibited my work locally in New Jersey galleries. My work was featured in two solo gallery shows as well as one group show. My story has been written up in several publications (mostly newspapers). I've also participated in filming a couple of television programs, which I will be posting soon. I'm passionate about advocating for a cure to paralysis & dedicated to educating others about spinal cord injuries.I'm always looking to meet new people & network. Please check out my website at [color=#8A0886]www.christinasymanski.com[/color]. You can follow me here, through my website & Twitter.Send me a friend request if you're interested. ;)Sat, 07 Aug 2010 21:23:30 GMTChrissyhttp://www.spinalcordinjury-paralysis.org/forums/Topic4403355-6638-1.aspxI would like to have a sticker sent to me. Thank you!:DThu, 05 Aug 2010 16:37:46 GMTJennyhttp://www.spinalcordinjury-paralysis.org/forums/Topic4400218-6638-1.aspx[size=2]Hi all! I'm Janelle (or JLo)!I studied communications and journalism in college. Some people do math and numbers. I do talking and writing. So you'll find me here in the new and fabulous online community (and on the web) writing about this, that, and the other thing. I write some of our [url=http://www.spinalcordinjury-paralysis.org/dailydose]Daily Dose blog[/url] entries, [url=http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4572089/k.7867/Tell_Us_Your_Story_Center.htm]success stories[/url], and just about any other fun writing project that comes my way, such as the one I recently wrote about [url=http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6076283/k.3E81/Traveling_with_Your_Wheelchair.htm]traveling with your wheelchair[/url].Often times, I'll come across something in everyday life that I think would be awesome to share.Like how I recently went bowling with a group of friends and thought about all the [url=http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4453491/k.6243/Sports_and_Competition.htm#]sports and activities[/url] for people living with a spinal cord injury.. like [url=http://www.ikanbowler.com/]adaptive bowling[/url]! Or how my passion is dance, and how many [url=http://www.disaboom.com/wheelchair-sports/the-top-five-integrated-wheelchair-dance-sport-organizations]integrated dance companies[/url] there are out there.Hope you enjoy reading some of my posts! Feel free to reply back and say hi! [/size]Thu, 29 Jul 2010 13:19:41 GMTJLohttp://www.spinalcordinjury-paralysis.org/forums/Topic4400164-6638-1.aspxYou'll see me listed on my profile as Gerthro. If you have any questions about the community feel free to send me a message. It's new for all of us. There is a lot more here then was in the old community.We still have this forum area, which is still the best place to ask and answer questions about paralysis, but now we have a place to post photos, form groups based on whatever interests you, join a chapter of the Foundation, and update friends on what you are doing all day.Oh yeah, it's a lot easier to make friends on this new platform too!Enjoy! Questions and feedback are welcome.RobThu, 29 Jul 2010 11:50:32 GMTGerthro