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Thread: New C2 SCI in Jackson MS

  1. #41
    Just wanted to give an update on Adam. He is still doing great on the pacer. He has not had to use the vent in over a month. We took it off of his chair and put it away. So that part is going well. As for the other rehab, we continue to do massage and stretching on a daily basis. We are trying to get into some outpatient therapy at the Rehab hospital here in Jackson but they still won't take him because they say even though he is off the vent, he still doesnt breath on his own. They don't know what to do because they have never seen anything like this before. We have applied to go to the Kennedy Kreiger Institue for more re-hab but haven't heard back from them yet. Anyone have any experience at this hospital? We have also ordered an e-stim machine and are waiting for that to arrive to get busy stimming him. We are having a golf tournament in Septmeber to help raise money to buy an FES bike so we can get busy with that at home. We figure if we can't get him into therapy somewhere, we had better just get busy here. Other than that, we are now starting to see some attitude change with Adam. He has been so upbeat since the accident, very positive and very accepting of what happened to him. We all thought that was unusual, but also great that he was dealing with it so well. I think now that time has gone by and more of the reality has set in, he is now starting to go through some depression and some anger. The last 2 weeks has been tough on everyone. We have tried to talk to him and he says he is fine, but he doesn't act fine. He has no interest in doing anything other than watching TV. I set him up with his lap tray, mouth stick and cell phone so that he is able to make calls on his own and answer his phone on his own. He is very angry that we are making him do this. I thought he would be happy to have some independence, but for him, he just wants us to do everything for him. Anysuggestions on how to handle things from here would be greatly appreciated. I'm exhausted and have no idea what to do now.

  2. #42
    I have no advice. But It sounds like Adam is going similar things as me. I am still not at home yet so not exactly the same thing. I was doing really well in June and July but lately I have been having lots of problems with anger and depression. It's not all the time but enough that its causing problems. And unfortunately most of my anger gets directed at my parents. The staff here and other friends and family too. But my poor parents are taking most of it. I don't know why. Maybe because they are here more than most everybody else. And they are the most involved with getting things ready for my transition home. But when they try to encourage me to do something or try something new an argument is sure to break out. I've been trying to stay aware of this so that I don't do it. I feel very bad about it. Yet I keep doing it. I don't know if this is what Adam is feeling. But its like there is a swirling vortex of anger, confusion, sadness, and grief and its hard to break out of it. Being aware of it is a start. Figuring out how to get over it is harder. So when you feel like this and somebody keeps trying to get you to use a mouthstick to answer a phone or read a book, it can be enough to push you over the edge. Even though you know that they are doing what needs to be done and that they are just trying their best to help. It can be hard to realize how much you might be hurting someone or how terrible you are acting.

    I don't know if that helps.
    Last edited by orangejello; 08-19-2006 at 12:19 PM.

  3. #43
    Senior Member
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    You take your anger out on the people you love the most. I can now look back 17 years ago and see it in my own self. I can also see it in my teenage daughter (different traumatic experience but same end result) when my father as well as her grandfather passed away within a year. It took several months but the anger came out and she lashed out at me because I am the one she loves most.

    I hope this helps. I dont think we ever lose the anger, it just seems to subside. I cant imagine what either Adam or orangejello are going through as my circumstances were totally different. They were the same in the anger and frustration really ate at me.

    I think grieving our loss of physical function is a process much like grieving the death of a loved one. The more time goes by the easier it is to accept and there are some things we just don't accept.

    I hope everything works out for Adam as well as orangejello. I have no advice to offer than just to have as much support as your families are giving yall is a blessing. I really miss my dad and my grandparents on both sides of my family. I feel that their support helped me lead a more productive better life. Even though you dont see it now your lives will be far better with all the support. I guess that is why our parents love us so much as babies.....otherwise there would be alot of teenage orphans LOL Some days mine would be one of them if I didnt love her so darn much......LOL
    Last edited by darkeyed_daisy; 08-19-2006 at 03:09 PM.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  4. #44
    Quote Originally Posted by ddjdiver
    Just wanted to give an update on Adam. He is still doing great on the pacer. He has not had to use the vent in over a month. We took it off of his chair and put it away. So that part is going well. As for the other rehab, we continue to do massage and stretching on a daily basis. We are trying to get into some outpatient therapy at the Rehab hospital here in Jackson but they still won't take him because they say even though he is off the vent, he still doesnt breath on his own. They don't know what to do because they have never seen anything like this before. We have applied to go to the Kennedy Kreiger Institue for more re-hab but haven't heard back from them yet. Anyone have any experience at this hospital? We have also ordered an e-stim machine and are waiting for that to arrive to get busy stimming him. We are having a golf tournament in Septmeber to help raise money to buy an FES bike so we can get busy with that at home. We figure if we can't get him into therapy somewhere, we had better just get busy here. Other than that, we are now starting to see some attitude change with Adam. He has been so upbeat since the accident, very positive and very accepting of what happened to him. We all thought that was unusual, but also great that he was dealing with it so well. I think now that time has gone by and more of the reality has set in, he is now starting to go through some depression and some anger. The last 2 weeks has been tough on everyone. We have tried to talk to him and he says he is fine, but he doesn't act fine. He has no interest in doing anything other than watching TV. I set him up with his lap tray, mouth stick and cell phone so that he is able to make calls on his own and answer his phone on his own. He is very angry that we are making him do this. I thought he would be happy to have some independence, but for him, he just wants us to do everything for him. Anysuggestions on how to handle things from here would be greatly appreciated. I'm exhausted and have no idea what to do now.
    I think it has to do with the fact that, if you try to do something and can´t, reality sets in even more and let´s face it, reality is unbearable at this point. And if you try to use adaptive equipment that you in fact can use, it follows that you are disabled, since you have to use adaptive equipment. Whereas if people do thigs for you, it does not necessarily mean that you are disabled.
    If I try to cook in my as yet not renovated kitchen, I am in for 2 days of bitter tears. But if someone does it for me, I am sad but not devastated.
    In short, he is using a well known defense mechanism known as AVOIDANCE.

  5. #45
    Thanks for all your responses, it really does help to know that everything we/Adam are going through is just another step in the physical & mental recovery of a very bad situation. Things did get worse with a situation last weekend. Without getting into much detail (last time I told the whole story on here it did not turn out good), anyway, in short, I am the stepmom and his main caregiver. Adams mom has had no involvement. She came to visit last weekend for the first time. Only stayed 4 hours, didn't come back or call Adam, but stayed in the area for 4 days. This really hurt Adam and all of us because in one day it seems like she has un-done all the progress we have made. This has especially been hard on Adams Dad as well as myself because we have to deal with his anger from the situation and he doesnt want to talk about it. I think we need to get him some counseling. I think having an outside party that is uninvolved will help him sort through some of his feelings. It is just so hard,and I feel so bad for him that he even has to deal with this stress. He has enough to deal with just dealing with was has happpened to him physically. Apartently she hates me because I am taking care of him, even though she choose not to. I don't understand it. But I have enough to deal with than to worry about how she feels about me. I just wish for Adams sake that she would call him everyday, take some responsibility in his care, and be a little grateful for what we are trying to do for him. You would think that would be a given for a mother but I guess not in this case. Anyway, I'm done complaining. Suzie, I am so glad to hear you are off the vent. I know you have to be excited. Orange, did you decide to get more therapy at another hospital? Weren't you thinking about Craig? There is a possibility we may be moving to Denver. My husband interviewed for a job there and we are all praying that he gets it. We would love to be close to Craig so Adam could continue some out patient therapy.

  6. #46
    I'm very sorry about the loss of your dad Daisy.

    It's so true that family support is the key, isn't it. I don't know where I would be without my parents. Things would be much tougher for sure.

  7. #47
    Senior Member
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    DDJDIVER- What an awesome step mom you are!!!!!! In case no one ever tells you so...... You must have one huge heart to step up and take care of Adam. Its all about love isnt it???? I cant believe his mom just took the easy way out. She has no reason to have any hard feelings at you....Sounds like she needs to be thinking of Adam. I cant imagine how that must make him feel that she stayed 4 days and only 4 hours were spent with him. You deserve some jewels in your crown.....

    I wish you all the best and I hope yall get the job too so Adam can go to Craig.

    You are amazing!!!!!
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #48
    Quote Originally Posted by ddjdiver
    This has especially been hard on Adams Dad as well as myself because we have to deal with his anger from the situation and he doesnt want to talk about it. I think we need to get him some counseling. I think having an outside party that is uninvolved will help him sort through some of his feelings. It is just so hard,and I feel so bad for him that he even has to deal with this stress. He has enough to deal with just dealing with was has happpened to him physically. But I have enough to deal with than to worry about how she feels about me. I just wish for Adams sake that she would call him everyday, take some responsibility in his care, and be a little grateful for what we are trying to do for him. You would think that would be a given for a mother but I guess not in this case. Anyway, I'm done complaining. We would love to be close to Craig so Adam could continue some out patient therapy.
    Hi Ddjdiver,

    It really saddens me to read stories like yours. I'm only a T-5 para and am fully independent and I still get pissed off at times from this damn SCI even though I'm 27 years post-injury. I can't even fathom the loss that your stepson is going through now, especially since his injury level is so high. Let's just hope that he regains more function as time goes by.

    When a close family member dies it's a terrible loss but with enough time the grieving usually ends. We all die at some time so it's a part of the human experience and we sooner or later learn to accept it and can move on. But the physical loss your stepson is coming to realize now must be horrendously depressing and even frightful for him since this loss won't ever have a natural duration or ending. Being SCI'd for a lifetime is an unnatural occurence. Only since the advent of antibiotics, modern medical devices and medical knowledge have SCI's been able to live a near normal lifespan.

    Every SCI'd person should get professional counseling as soon as possible or is practical. It would be nice if psychologists and/or psychiatrists made housecalls so it wouldn't be as though he's going to see another doctor in another "sterile feeling" office or unfamiliar setting. And with the clock ticking away as the psychologist and/or psychiatrist looks at his watch in anticipation of his next patient/client. But Adam should get some professional counseling from a non-family or friend and hopefully he'll be able to vent some of his pent up anger and frustration there. He, you and his dad may need to "shop around" a bit until he finds one that he likes and can confide in. This can be quite a daunting task in itself.

    And please don't ever feel like your complaining here. You have taken on a very difficult responsibility and hopefully you can feel free to vent your problems here and find a little relief in it.

    I don't like taking care of me! .... I can only imagine how hard it must be on you to take care of someone else and all of their needs and problems and the unpleasant daily routines that you're already aware of and the ones yet to be encountered.

    You're a very selfless and loving woman and I wish you and your family the very best in this bad situation. Things will get better and easier with time especially if you can Adam into an outpatient therapy program like the one you wrote Craig has to offer. Adam needs to get out among others in his condition so he doesn't feel so alone and as though he's the only one in his situation. It can be a very lonely place trapped inside a body that no longer works like it did such a short while ago. You didn't post the date of Adam's injury in your/his Profile but I'm assuming it's fairly recent. Take care of yourself and try to get some home healthcare such as a PCA to help take some of the burden off of you and your husband. Adam may appreciate someone else outside the family doing the more intimate and personal things that need to be done.

    If Adam's birth mother isn't trying to help at all and perhaps is even making things worse there may be some legal recourse you could take to make her pay for some of her son's needs. I don't know the legal standing there is in your particular case but she should be doing something to help her son out in his time of such great need.

    It isn't fair.

    Best wishes.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  9. #49
    My husband is C3/C4 incomplete injury. I can understand the carer situation. I know his mum behavior is unacceptable but Adam still have you and his father. Give him some time to cope with this. I'm sure he will overcome it. I hope you and and your husband should take sometime to communicate with Adam.Try to know how he think..can he accept he is paralysed? If he can..then you can talk to him more about the importance of independence living..look for people around this forum..so many people that still happy even they are quad..for example...i found a website http://www.myspace.com/Suzukicrash...I know he got temper..but do not let him put the anger on family member too frequently..it will become a 'routine behavior'..By the way....don't try to arrange party for him..I don't think he can accept it..People like them..so care about how others look at them and think of them..He is not 100percent open minded yet..
    I started to let my husband accept his situation by bringing him out to shopping centre with wearing cap..so he can try to ignore what he don't like to see...Oh I choose weekday to go for shopping...so not much people around...

  10. #50
    This original post is over a year old, so I am not sure if this person is still here, or if any responses are still relevant.

    (KLD)

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