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Thread: What can I do?

  1. #1
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    What can I do?

    Just two days ago, early New Years Day, one of our best friends injured his C4-5 in a freak accident when the boys were playing out in the snow just having fun. He's had some definite swelling of the spinal cord and permanent damage, via the MRI results, to what extent they're not sure yet. He's already had pins and screws inserted to fix the break and faces at least one more surgery to fuse the bones. He still can only feel above his nipple line, is breathing on his own but has difficulty with secretions and coughing, they are to get him a cough stimulator. He can raise his arms and elbows but has no extension ability or use of his hands though he has sensation throughout his whole arm. He's very calm taking responsibility for his actions and says he's going to be fine. I don't know if things have set in for him yet. I just don't want him to hold his questions, doubts or fears inside trying to be strong for all of us. I'm a registered nurse and have seen outcomes of these injuries good and bad. Although when its someone you love its hard to watch. You just want to give him strength back in his now weak body. I'm having a hard time coping because I was the first responder on the scene with one other EMS friend of mine and I keep asking did we do everything right. He's 28, full of energy, an avid skier, hunter, boater, and I want to help him in any way I can. I guess what I'm asking is what did anyone here find you most appreciated from your support system? We visit him often and try as much as possible to ignore the fact that he's struggling internally with all this. I can tell in his eyes although he doesn't sau much. He's a dear friend, like a brother and I feel so helpless. I know he needs my support and that is not even a request that needs to be made but I need some to. I need some direction. His family has little if any medical knowledge and are in mercy to the health care team who are truly great but they still have lots of questions and fears which they direct to me, I've become somewhat of an advocate. Today he gets a greenfield filter and they're nervous about that, every step is scary but in his best interest I know. I guess I always fear the worst and want to be more positive for him. What can I do? What should I not do? We try to lighten things and use some humor with him, they're a very sarcastic, loving family, just light humor but it seems to direct the attention from him and all that has happened. Is there something I can bring him, he has not use of his arms at this point so I'm trying to think of distractions for him to help put focus off all the negative. I no longer work at the main campus of the hospital and now wish I did to be there more but got too burned out to stay. I tell him a lot that he's got to use his stubbornness, which he truly is, into getting out of there cause we all hate hospitals...he smiles...he's a tough guy and if anyone can make it through he will, I just want to do my part. I know he'll be so much better off at home. He's so independent and just needs something to be in control of. It's just hard for me getting past the initial moments of seeing my strong, young friend so vulnerable and helpless. Its a movie replaying all the time in my head as I held his hand and couldn't do a thing but wait for EMS. I guess I'm scared for him and the challenges he faces because he just doesn't know yet.

  2. #2
    What I wanted was FACTS and STATISTICS. I got neither.

    I didn't want sugarcoated or over-negative.

    My BFF had to wait with me for the EMS and had to tell them to back the hell off until they had a neck brace and backboard. She's scarred forever, it's the only thing Jill can't joke about. And we have been through some serious hell and laughed all the way, until that.

    The haunted sensation will ease up for you, I promise, it did for her (finally).

    It's way too early to say how it will turn out for your friend. IMO the indicators are good, with sensation in his arms. AB's never fully appreciate what a blessing hand function is. Walking is nothing compared to hands if you ask me.

    Tell him to work hard in rehab. Can't overstate the importance of good rehab. He has to go to one, seriously.

    Print this article:

    http://sci.rutgers.edu/index.php?pag...3@AcuteSCI.htm

    Here are many more:

    http://sci.rutgers.edu/index.php?page=articles

    We've all survived this. He will too. Don't worry that he's not dealing. It comes with time, and is overrated anyway. The mind does what it needs to in times of crisis.

  3. #3
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    I am so sorry that this has happened to your friend. I suspect that it being just a few days out from his injury that he is in shock, both physiological and emotional. The latter may explain the fact that he seems so calm to you. What he is able to do at this point seems to be a good indicator that he might regain a lot more function, although no one can speak with any certainty about that this early on. When I was in the hospital I was on a Stryker frame, which I don't think they even use anymore, but it was a god-awful contraption which kept me looking through a little square of fabric for half the day, with only a view of the linoleum. It was virtually impossible to eat, and too scary to even try. My BFF use to lie on the floor so that we could make eye contact, and she brought me milkshakes because I could get calories that way and not fear the solid food. Mostly, it was just her being there that helped, and often the humor got very bizzare. Since I had a view of the floor and she way laying on it, we often discussed housekeeping issues and how long a particular piece of dirt had been in the corner. We talked about the surgeon who forgot to clean the blood splatters off his shoes, forgetting that often the only thing I did see of him WAS his shoes. We made escape plans a lot. She was going to back the truck up to the loading dock and we were going to go out for a drink and a movie, just leaving a note behind saying "I'll be back, don't worry." It was silly, and it was also lifesaving. Just be yourself. Make sure they are watching his skin like hawks for pressure sores. My BFF actually took over bed making for me because she was upset that she had found me lying on wrinkles. Good luck.

  4. #4
    Below is a portion of an artical I found some time ago. It gives a good explation of how he may be feeling right now. It's a good read for youself and his family. Like the first sentence says, unless you've been there, you have no idea what's going on inside his head.

    Gene


    Understanding the Personal Impact of Spinal Cord Injury

    Unless we have actually been there, can any of us really know what it is like to experience a spinal cord injury? A sudden departure from the physical world as we once knew it. An unexpected transition from being an active participant to a relative observer. The joys of spontaneity, adventure and freedom banished from life forever.

    Every spinal cord injury (SCI) is unique, and so is the personal impact that the trauma has on the life of an individual – the only one to truly understand his or her own particular challenge. But there are some things that everyone who has survived SCI will face, and we can at least attempt to appreciate how it might feel to deal with these intense physical and emotional consequences.

    An Abrupt Change of Course
    The degree of change is so immense and so immediate. Initially pain, immobility and
    disorientation eclipse everything. Thrust into a hospital environment, with unfamiliar people around who speak a language all their own, a drug induced haze holds you in confusion and unknowing. Upon emerging, the realization of what has happened to you finally begins to hit. A journey on an emotional roller-coaster begins, and the rapidly changing scenery might be fear, disbelief, horror, self pity, anger, humiliation, gratitude, resentment, hope and despair. You have so much to work out. How do you get your dramatically changed self through the day, adjust your outlook and remain positive? How do you retain a sense of self-worth and a reason to continue living, while accepting that you are dependent on others for almost everything you once did so easily for yourself? This is an incredibly stressful load to cope with all at once, and when no one has ready answers for you, except to say how unlikely it is that you will ever recover, you are confronted with the enormity of your ordeal.

    Often there is intense embarrassment to deal with. The fact that the accident occurred in the first place, that your body has betrayed and is failing you, that you have ruined your life and let down everyone close to you. A moment ago you might have been young, fit and strong and now you are lying in a hospital bed, being fed, washed and dressed in support stockings to stop your ankles from swelling. It can be difficult to let go of the regret and self-recrimination that can occur.

    One of the most painful and unpleasant aspects of a SCI, especially during the early
    stages of recovery, is the loss of control. Imagine feeling trapped inside a body that no longer moves of your own volition, that you cannot express yourself through, that perhaps can’t even breathe without the help of machinery. It can be overwhelming, and the mind simply cannot accept that there isn’t a way out. After a period of frantic searching, desperately clutching at any strand of hope that presents itself, you must ultimately accept that you have no miraculous trick up your sleeve that will restore movement to your broken body, and the realization of this finality can be shocking and deeply depressing.


    Moving Into the New
    It is very tempting to stay in the old reality of freedom of movement through dreaming and reminiscing, rather than accept and move right into the new. Escapism is a very natural response that can help one survive the devastation and loss, and creative visualization is a tool that can be wonderfully relaxing and liberating for anyone experiencing significant limitations in physical function. But unless it is held in perspective, escaping reality has the potential to hinder the healing process and re-entry into the world and life and relationships. Learning to live predominantly in the ‘now’ and finding joy in that is so important, but incredibly hard when the present moment is bleak or painful and the lure of the past is so seductive.

    Moving on involves more than just accepting the vast lifestyle changes, it is also about allowing a process of change within. Whether they choose it or not, people recovering from SCI’s may find that their life roles become quite different compared to pre-accident days. A brick layer is not likely to return to the work site, an athlete may never train or compete again, a mother who yesterday so deftly cared for her small baby now requires that sort of physical care herself.

    This isn’t to say that their injuries have changed their respective personalities, or that their hopes and desires are necessarily any different now. Will, personal power and potency, sexuality and humour are not elements of our physicality – they are inherent in our emotional and psychological character. Survivors traverse incredible emotional extremes and can discover what they’re really capable of. In many cases their resolve is strengthened and their understanding of the human spirit and what makes them who they are expands. People who have experienced this opportunity for deep personal growth are very valuable. Their strength and determination are inspirational to others and they have much to teach and offer to society.

    Enemies and Heroes
    The late Christopher Reeve very publicly demonstrated how SCI impacts on an individual’s life. He suggested that one of the particularly destructive enemies the modern world faces today is disease. Throughout history humans have always engaged in battles, and Reeve believed that research into the treatment of disease is the war we now ought to be fighting if we are to become a truly humane society.1 Only the best that medical science can possibly offer will prevail, particularly if we are to overcome the obstacles in finding a cure for paralysis. Winning this battle will not only relieve the world of the devastation and suffering associated with SCI, but the billions of dollars normally spent each year caring for many hundreds of thousands of paraplegic and quadriplegic men and women worldwide will ultimately be saved.

    When the first Superman movie came out Reeve was asked, “What is a hero?” He replied that it was someone who commits a courageous action without considering the consequences, like a soldier risking his life to rescue an injured buddy. After his injury his definition changed. Reeve later described a hero as an ordinary individual who finds the strength to endure and persevere in spite of overwhelming obstacles. Much like the people who are suddenly struck by SCI – in seconds left unable to move or even speak, treading absolutely daunting paths towards at least some kind of recovery. He believed these are life’s real heroes, and so are the families and friends who stand by them.2


    The longevity of the condition is a factor that makes paralysis both difficult to endure
    and expensive. When a disease such as cancer is diagnosed, the individual
    becomes sick and then either recovers with treatment or dies, usually within a
    relatively short period of time. With SCI, a person lives with the resulting paralysis
    for the rest of his or her life, and if you consider that the injury is most likely to have
    occurred at a very young age, this might be for some forty or fifty years.

    Struggles of the Mind
    Many who continue to live with SCIs say that some things worry and upset them
    less over time, and yet other issues seem to become more frustrating or distressing.
    To know intellectually that we are not our bodies, and that, metaphorically, they are
    merely houses we live in, might be a comforting philosophy to those with SCI, but it
    isn’t necessarily a state of awareness that can be maintained and lived by day in
    and day out. Could you ever get used to not being able to give someone you love a
    hug? Would sensory deprivation concern you less over time as you go without
    feeling warm sand between your toes at the beach, without the luxury of silk or
    velvet under your fingertips? Your sex life is dramatically different now, and although you may find wonderfully exciting and satisfying ways to give and receive pleasure with your partner, there are sensations that you miss, limitations to how you can express yourself and a certain spontaneity that is lost.

    All of us have pressures and frustrations to deal with in our lives, but imagine adding
    to that the burden of permanent paralysis. It is almost inevitable to at times find
    oneself immersed in anger, self-pity and depression, and it can be worse than most
    peoples’ darkest hour.

    No Room for Apathy
    We can look at the survivors of SCI who bravely continue to live their lives with
    enthusiasm and joy, and make the mistake of assuming that it’s OK, that the human
    spirit will prevail and we should just accept the physical losses. But coping well with
    SCI does not equate to apathy about the opportunity of making a full recovery. There
    are people in our society who now feel they have so much less to look forward to –
    that the best of their lives are now memories receding into the distance.

    While discovering cures for paralysis will give movement and life back to those
    already injured, it will also mean a far more optimistic outlook for the 1 million people
    around the world who will go on to experience SCIs in the next decade alone. It is
    vitally important to invest energy and resources in preventing as many of these
    spinal injuries as possible, but unfortunately many will inevitably occur. We are so
    vulnerable – a dive into the surf, or another car crashing into us when we least
    expect it, is all it takes. Contributing to the quest of developing curative treatments
    for SCI paralysis is the equivalent of insuring your future and your children’s’ future,
    eliminating the potential for future generations to suffer such tragic loss.


    Imagine the difference you can make
    Rapid progress is now being made in the area of neuroscience research, and we can
    confidently say that it is not a question of if, but rather WHEN, we will see a cure for SCI.
    Imagine how you might feel when that day arrives, knowing that you were involved in achieving something that medicine deemed impossible until recent times. SCI is a global problem affecting all of us, either directly or indirectly, and needs to be dealt with in a global fashion. Now is the time for all of us to take some responsibility and do what we can to maintain the exciting momentum developing in the area of SCI research.

  5. #5
    I am glad you found our forums. Can other family members come on here too?

    Ask what his ASIA level of injury and completeness are. I suspect he may be an C5 or C6 ASIA B (can he feel his perianal area at all??). Can he extend his wrists?

    Keep visiting and being supportive. You wouldn't believe how many "friends" disappear at this point. Don't stop going even if he is rude, sarcastic and nasty to you. He will test your true friendship to see if you truely love him for who he is and not just his physicality. Don't let him drive you away.

    Help him and his family ask the right questions and be in charge of his care. He needs to get moved ASAP to a major SCI Center. A Model System SCI Center is best. If that is not possible, at least be sure it is a CARF accrediated Spinal Cord System of Care (SCSC). Even if this means traveling out of town or state, this is critical vs. going to a local convenient (but less expert) rehab center. This will be his boot camp for life with SCI, so he needs to get the best. They may have to fight doctors, discharge planners and insurance over this.

    Be honest with him. Help him maintain hope (in spite of what the doctors say) but also be realistic about making plans for his need for rehab, a wheelchair accessible home, planning for caregivers, etc. etc. at least for the near future. Help him cry if he needs to...and it is OK to cry with him! He may not be able to feel you hold his hand...a hand on a shoulder or upper arm, or even on his face may be more comforting.

    As far as what to do right now, does he have an iPod or MP3 player? Can you load it up with his favorite music? The nurses can help him put it on, and it will help him pass the time and perhaps even rest more (all the alarms in the ICU can make sleep nearly impossible as you know). Bring him posters, family and friend pictures and post them where he can see them. Read to him if he is interested (he may have some problems concentrating though at this early phase, esp. if he is on a lot of pain meds).

    Forget all that death and dying Kuebbler-Ross stuff. It does not apply for adjustment to a SCI. The best predictor for how someone will adjust is how they previously adjusted to and coped with adversity in their lives. Not everyone needs to or goes through any specific stages, but they often do deal (at different times) with anger, depression, bargining and dispair. Coping is the goal...not acceptance. Encourage him to fully take advantage of the counseling services he should have access to at the SCI rehab center. Too often I see young men turn these down as they don't see it as manly, yet they suffer because of it and often need it later.

    You may find it helpful to download some of the clinical practice guidelines for SCI which you can find at this site:

    http://www.pva.org/site/PageServer?p...bs_generalpubs

    I forgot to ask....any chance he is a military veteran?

    Come back and ask more questions. We are here to help.

    (KLD)

  6. #6
    this time will probly be the hardest part by far, just be there and have faith that everything will be okay. Its important to be there during these first months but after he goes home and gets adjusted, make sure you dont fade away. It might be hard to not be able to do the things you guys used to but still make an effort to be there as much as possible. its a diffrent life but definetly worth living. He doesnt have to give up all the things he liked to do before, like hunting. My boyfriend (c5-complete) loved hunting before and he can still do it now he just had to do a little adjusting. Maybe if you remind him of this that might make him feel a little better. Dont ignore the fact that he's in pain, but dont bother him about talking about it either. Just take his hand, look him in the eyes and say "i'm here if you ever wanna talk about anything", or somethin like that. it might just take a little time before he gets ready to talk about it or he might not ever really let on about how much pain this has caused him. i hope everyone here helps you as much as possible and you get some answers and piece of mind.

  7. #7
    KLD's answer reminded me of more. Assuming he will get into a top-notch rehab (and you are hereby entrusted with the duty of making sure they realize how crucial this is for his future, and for his family)-On weekdays at rehab he will be really busy. They don't really encourage visitors during physical therapy, but my other BFF is pushy. I LOVED when she would come cheerlead!

    And the weekends can get long and lonely. She brought movies, and magazines we laughed at. Saved my sanity.

    God bless her. Her husband died the same day I was injured, yet she did all this for me...

    Basically, things that make him feel like HIM. It is hard to find yourself when your body has malfunctioned, yet inside, we remain the same.

    Post rehab is another ballgame. Modifications will be required. Best to prepare for the worst, and assume a complete injury. I'm sure the family would appreciate any help (physical or financial, or organizational) towards the construction projects they are facing and probably have barely begun to realize.

    In rehab, even more important than physical conditioning is the education. We can die in these bodies pretty easily once SCI'd. I've found few nurses or even doctors realize all that changes, so I mention it to you. A good rehab teaches one to lie in bed without getting sores, to get out of bed or hire the people that manage it for you, to not die of heat because we don't sweat, to cath every 4 hours, they trouble-shoot and problem-solve. They teach you so much that I can't over-emphasize how important it is. People are tempted to keep the newly SCI'd in the nearest rehab to home, reasoning that they need friends and family at that time. In reality, they need the absolute best rehab obtainable, no matter where it is. 8 weeks of life isn't much time to give to acquiring the tools of survival.

    Sorry for the lecture. I'm glad he has you. Feel free to ask what you need to know, and tell him we're here when he needs us.

    P.S. I'm C5-6 incomplete, injured 7 years, just got back from a scuba trip. First one post SCI, and I went with people with more complete injuries than mine. Point being, it's not over until he gives up or dies. As Princess above posted, her bf is still hunting. Lots of us here are living complete, if modified and less spontaneous, lives. Please drop that into the conversation when you think it's appropriate.

    I found rehab to be easy, I was way driven, it was a year later that I hit a wall and had my little personal Come-to-Jesus meeting with my future. Sigh, it's a brutal business, everybody does it differently but nobody gets off easy. I suppose everybody had some tough conversations with themselves. Eventually, you just gut it out and come through the other side.
    Last edited by betheny; 01-03-2008 at 11:42 PM.

  8. #8
    Dear Bandit,
    You wrote a very moving post. It takes me back to when my daughter was injured almost a year ago, Jan 13th. She is a C5 , incomplete.

    You look at the person you love and you grieve. You mourn the person they were. You know their life is changed forever.

    I also am a registered nurse and as someone who knows too much , I pictured the worse. But my daughter had her own ideas. She tells me that as she layed paralyzed in the ICU , it never occurred to her that she could be paralyzed the rest of her life. After four weeks she could only move her left thumb, inner thigh muscles, lift her arms and shrug her shoulders, she told grandpa, "You know, besides it sucking that I broke my neck, overall it has been a positive experience."

    What I think she meant was that things were progressing and she was moving in a good direction. The human mind is an incredible thing, it wants to survive and in doing so can adjust "reality" to make it ok. And it IS OK.

    No one ever told my daughter she wasn't going to walk. When the doctor told her she had a 40% chance of getting "some" movement back in her legs, she heard 40% chance of walking. I really feel that by letting her set her "own" reality she has gotten where she is. She is walking with a walker and a bioness on her right leg, not far, but moving. Her bowel and bladder are back with no accidents. When she was in the hospital , they kept trying to get her to practice self cathing. She told me she said to herself , "I am not going to need to know that!". Who knows.

    Follow your friends lead and cheer for the smallest of accomplishments. Know that you are doing exactly what you are supposed to be doing no matter how much or how little you are doing. And how wonderful for your friend that you were with him during a very scary time.

    "Why accept reality when it is not the reality you want"

  9. #9
    Senior Member BeeBee's Avatar
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    I'm sorry to hear about your friend, it's so hard to watch someone you love suffer and struggle. I wanted to provide suggestions on medical (rehab) care. I know my profile says DC, but I lived in Rochester Hills for years and still have a home there. My son did his rehab (T12) at Beaumont Royal Oak. Mistake. There a number of better choices without going too far from home. I suggest contacting Rehab Institute of Michigan (RIM) in downtown Detroit (Mack Ave), they have a vew (3years old) inpatient center and excellent outpatient facilities. Alternatively UofM, over in Ann Arbor, has a pretty good program. Either of which would be better than Beaumont - they specialize in Stroke victims. I swear, when my son (at 17) was rolled onto the floor the average age dropped by 15 years. He was always afraid his new roommate would die overnight. You didn't say which hospital, so I may be making assumptions based on your "Troy" location.
    Anyway, my $0.02 based on personal experience with the area.
    BeeBee

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