United Brachial Plexus Network, Inc.

I have a question for you guys. As you know, my husband suffered a TBPI in Nov of 2003. He had surgery Mar 2nd in TX ~ 2 nerve transfers to regain bicep and shoulder function.
Well, my question is... How do I deal with all of this? He is starting to get down in dumps all the time. He can't work because of the injury, but thank god we have great family who are helping us out a lot. He is getting to the point where he lays around a lot. I just don't know what to say or how to deal with it when he is in his moods. I thought maybe some of you who have been in our situation might have some advice. I am at a loss.....

Thanks,
Jessica

I would suggest getting him into some classes or retraining at the local community college. That should take his mind off of his injury and get him looking to the future. What really helped me was getting back to work as soon as possible.

Hi Jessica,

This is a tough one. The emotional effects of bpi are hard to process. I can only speak of my own experience, but know that everyone on this board has had to rely on personal resources they never knew they had.

My injury was more than 20 yrs ago, and my strongest memory is just how much it pissed me off. The first two years were spent putting humpty dumpty together again and my focus was on trying to regain some sense of normalcy. There were drugs, booze, despair, a marriage breakup, and frustration. Eventually I went back to school, retrained, and ended up the moderately functional man I am today.

I saw a therapist a few years ago and that was a very good thing. I should have done that a lot earlier. Please hang in, see a therapist (both of you),and keep going. It will not get better overnight, but in time, it will.

Good luck,

Henry

Hi Jessica,

This is a tough one. The emotional effects of bpi are hard to process. I can only speak of my own experience, but know that everyone on this board has had to rely on personal resources they never knew they had.

My injury was more than 20 yrs ago, and my strongest memory is just how much it pissed me off. The first two years were spent putting humpty dumpty together again and my focus was on trying to regain some sense of normalcy. There were drugs, booze, despair, a marriage breakup, and frustration. Eventually I went back to school, retrained, and ended up the moderately functional man I am today.

I saw a therapist a few years ago and that was a very good thing. I should have done that a lot earlier. Please hang in, see a therapist (both of you),and keep going. It will not get better overnight, but in time, it will.

Good luck,

Henry

All I can say is you need to have alot of patience. If he wants to be alone, let him, give him that space.
Do not keep asking how the pain is, it is always there the same. If he blanks out during conversation, be patient, the pain will pass. As for myself, I cannot stand being touched on affected shoulder, super sensitive. If he has spots like that, be very carefull not to touch them. Finally, If he is sitting there fighting pain, don't console him or touch him. Because for me that makes the pain worse. We need to focus all attention on the pain, any outside input actually makes it worse. Those are some of the things that I experienced, I hope that helps.
But most of all be patient......

Denny..

Denny,

Thank you so very much for your insight. I needed to read that, because I thought I was showing concern & empathy by periodically asking how the pain was. You helped me realize that my son wants to put that behind him as much as possible, & he doesn't need me reminding him about it. I'll try to give him some more space...

Ellen

Jessica...
I totally hear what you're saying and I feel the same way you do. My boyfriend of almost 4 years was in a motorcycle accident on July 27, 2003. I lost my boyfriend and best friend on that day. The past 8 months have been HELL!! At first it wasn't that bad, he was in the hospital for over a month, came home and started to adjust well, but once he started healing ( obviously except for the loss of use in his arm )his attitude changed, he was either sad, mad, aggitated, or tired all the time. He slept the day away while I was at work and when I came home he would just sit on the couch while I cooked dinner for us. He never wanted to go out anymore, he didnt want to chance running into someone he knew and had to talk about how he was doing or if they didn't know about his accident explain why his arm was in a sling. After several months of this he finally started getting out of our apartment, but at night. He would still sleep all day, then he'd go over his friend's house at night to "hang with the guys". I never saw him. After weeks of this I had enough and confronted him. He gave me some lame speech about not wanting to hold me back from living my life. He was trying to push me away on purpose. I'm 29, ready to get married and start a family and he doesn't want to start any of that until he starts to see results from all of his surgeries. He told me he doesn't want to have a child until he can pick it up. This is what a TBPI has done to my life. I now have moved out of my apartment 2 weeks ago that I shared with him and back to my parents home. I needed to get away from him for awhile. We still love each other and talk everyday, but I can't believe he has let this take over his life. I might sound selfish, but he lost his arm and I have lost him. He is very depressed. He admitted to me he thought of ending his life one night. The pain and misery of the entire thing has consumed his life. I thought I was doing everything right, I did everything and anything for him. I guess there really isn't anything we can do as loved ones that can actually make them forget about the injury, it's with them 24/7. I thought standing by his side, going to every dr. appointment, and being physical and emotional support was helping, but I was wrong. He'd rather be alone and miserable than be with me and risk ruining my future. Who knows, we might end up together again, but for now I'm still standing by his side and going to dr. appointments and helping him as much as I can. I guess my advice to you is don't let him push you away. Give him his space and let him kow you're here for him, let him know that he's not a burden on you and that you love him unconditionally. I told my boyfriend that in the hospital when we thought he was going to have to have an amputation. He asked me if I'd still love him even if he had a "stump" and I said I loved him with or without the arm and I still do. I hope this helps you in some way. I'm still in awe about the entire situation. It has been almost 8 months and it still feels like weeks into his injury. I guess the only way it can get better is by them making it better. There's only so much we can do for them. My guy refuses to look for work. His short-term disability from his work ended in February so now he has applied for unemployment since he has been denied long-term disability twice now. Now he is going to appeal that once again. He needs to get motivated and look into vocational training for a new career. Hope some of this "rambling" has helped. Take care!! Dawna

Thank you all for your support and advice. He is doing a bit better tonight. I had a breakdown earlier tonight. I had had enough of him laying around, so I took me and my daughter to my parent's house (they live in the same neighborhood as us). My mom ended up coming over and talking to him (she can somehow always get through to him, not sure why). That helped. His dad also called tonight and that seemed to help even more. I just told him I love him and it makes me sad when he is down because all I want to do is make it better and when I can't I get frustrated, sad, and mad. I told him I will try to stop asking him what is wrong and trying to get him to talk, but that I am always here for him. One thing I did not mention in my first post is that he has some stuff going on w/his mom, she is in the process of divorcing his dad, it's a long story, but ever since Kyle heard about the divorce thing and confronting her about it his moods have gotten worse. Before this, his moods were good ~ I was actually surprised at how well he was dealing with it. But, since all this with his mom things have changed. I don't think it's just coincidence.
Anyways, thanks again ~ it's so good to have this place where other people can understand what you are going through.

Jessica

Hi
I think someone posted the address of the adult tbpi site in the UK on another thread, here's a link to the messageboard attached to that website. http://pub28.ezboard.com/badultswithbra ... usinjuries As well as many tbpi there are some partners who regularly post there and who have been where you are now. It might help if you and your partners were to check some of these stories out (there is a message board there solely for people's stories) and maybe read some posts there as well as here.
I am currently working on a new page for the website proper which will be about the emotional effects of a tbpi, I'll let you know when it's put up on the site, I think there is as much need for this kind of thing as the medical stuff, in some cases more. Post Traumatic Stress Disorder is very common among tbpi, other life traumas happening at the same time would be totally devastating. Try and encourage them to seek counselling or find someone outside the whole scenario to unload on, we the injured people can feel tremendous pressure from our families to 'get over it' which leads us to feel very guilty for the pain we cause our carers.
For myself, I think I would have sunk into despondency much more than I did, but my parents basically forced me to go back to my own flat and live my own life, from 1 month after I came out of hospital. I thought they were very cruel at the time and thought I would not be able to do anything or survive the pain, but now I think it was absolutely the key to my emotional recovery. And I have to say that even now, 24 years later, I still get annoyed if people fuss around me-yes I know they are doing it to help me but it makes me feel like a crip. I survived this because I WILL NOT feel like a crip.
Please tell your partners that one armed parenting/child carrying is possible, I have had 3 kids, was a single parent with the eldest and looked after them all with one hand. I can still pick up my youngest (aged 5) and carry her if I need to. I hope things seem better for all of you soon, and if you or your partners want to mail me about any of this please do, I am jennybradley@xtra.co.nz

Jessica,
I'm not sure I can help, but I know for me the battle is between my ears. Being a man, always being able to be a good provider and protector was very important to me. I felt as if I lost that ability when I injured my arm. The image I had of myself changed drastically. For me there were at least three elements to this injury I had to deal with, the loss of my arm, the pain that I feel, and the change in my self-image. The surgeons can help with any arm recovery that’s possible. The pain doctors can assist with pain management. But the self-image part is actually tougher cause often we don't seek out help. Guys like to tuff it out because of our ego. And sometimes we hurt our loved ones and ourselves. Finding this web site helped give me the hope and belief that I could regain my image inspite of my injury. I found that very important in motivating me to get my life back. I can't tell you how to give Kyle hope, but I think it’s vital for the recovery process. Hope this helps...Karl...