United Brachial Plexus Network, Inc.

I have a 23 yr. old son who was in an accident in Jan. 2006. He was hit head on by a small pickup truck walking across the highway. He and his friends had been drinking all night and didn't want to drive drunk. We live across the highway from the bar and they figured it was a short distance to get to our house. He was in ICU for 6 weeks and then on the recovery floor for 3 weeks. He has had 11 surgeries so far and still a couple more to come. The truck ran up his left leg, over his chest, and over his right arm. The doctors were unable to save his leg so they had to amputate it, but luckily below the knee. As for his right arm, they declared it "dead". A friend of ours read an article about BPI surgery at Mayo in Mn. I contacted them and within 1 month my son had his BPI surgery, May 2006. Things have been going okay since the surgery, but he has had a lot of other issues to deal with, like getting a prosthetic leg, he had an illeostomy bag for 3 months, and therapy. We've had 2 check-ups since the surgery and things are progressing - slowly. Because he's bigger man the doctors said that it may take a little longer for the nerves to grow. At his last check-up in Jan. 2007, there was movement in his biceps which was wonderful and encouraging. He saw a therapist at Mayo and was shown some exercises. The basic one was to rest his arm on the counter at shoulder height and pull his elbow to his chest. He has tried it a couple of times, but just couldn't do it - why I don't know. I've pushed him to do his exercises everyday, and we just end up fighting with eachother. He has no motivation to do the exercises and it's very frustrating since he's so young and has the ability to do these. He feels that his arm isn't going to come back - so why bust his butt working out. I can't let him sit day in and out and not have him do anything - but yet he won't even try. Can anyone give me some pointers on what I can do to get him motivated to do these important exercises. He wants to get married and have kids and is an avid sportsman. He won't be able to do many of those things if he doesn't work on getting his arm back. As a mother, I'm supposed to protect my children and be there when they need me. I've given up my life these past 12 months and given everything that I could to my son - but come up empty handed all the time. I'm depressed and feel like a failure since I can't get him to see the importance of therapy. If he waits and decides later on to get motivated, it may be too late. The therapy needs to be done now within the time frame of the surgery if he's going to gain any movement back at all. Any suggestions from anyone would be greatly appreciated!

Hi
So sorry to hear about your son's accident and all he has been through. I have to say I felt exactly as he does about my arm and couldn't wait to stop therapy once it had been established my arm would not recover. I was a similar age (21) and my overwhelming desire was to forget about the doctors and hospitals and embrace life again. Your son's injuries were much more severe than mine and so I would assume he's even more tired of being poked and prodded by doctors than I was! He might find it easier to do those early exercises in a swimming pool, the ease you can move your arm in water is a big encouragement. It might also help if he talks to others who are in the process of recovering from surgery-it's a long road and the recovery process is very slow. The Mayo might be able to get him some people to talk to, or maybe some of those posting here will read your post and share their experiences. It would be good if he could at least keep the joints active because the thing that hampers natural recovery the most is the frozen joints from lack of use. The bicep will grow in strength if he exercises it but it will be very gradual. For me, in the end, life became so much more important than the arm that I didn't care if it recovered or not, I have never regretted my choice to ignore the arm and its lack of recovery. It did bother my parents more than it bothered me. I have always just felt glad to be alive after a horrible road accident.

One of the things that I would like to say is that it is perfectly possible to get married, have kids and participate in sports and life in general with or without the use of your right arm, I and most of the people posting here have done it for years. I'm sure you wouldn't be saying such things to him directly, but please be aware that the attitude among able bodied people that a paralysed arm is the end of the world is very discouraging and obviously it's wrong, not having my arm hasn't altered my life at all as far as I can see. It's really hard for you as a parent, you feel very helpless, make sure you take time out for yourself, you need a break too!

I hope things get easier soon, hopefully as move recovery happens he might get motivated to work the arm. Do try the swimming pool thing, many people have told me that when they saw the movement in water it changed their attitude to PT, they could see the possibilities.
Take care
Jen NZ

Hi Jen,

Thanks so much for replying to my message. I am going to look in to the swimming idea and see if that's a possibility for my son to participate in. We have a pool, but right now the weather is -35 so won't be much help until summer. I appreciate your thoughts about marriage, sports and a normal life. My son also feels the same as you about having his life after his accident. I guess I was coming across the wrong way and making it sound like he wouldn't be able to function without his arm. What I meant was that the doctors gave him a 70 - 90% chance of movement. What better odds are there after what has happened than that. If there was no chance at all to get movement back I could understand. But with the odds in his favor I would hope that he'd want to get back as much movement that he could. The other thing he doesn't understand is that lack of movement will freeze his joints and hamper his chances at improving at all. I'm very lucky to have the son that I do. Many times he has told me that he wouldn't have come this far if it weren't for me pushing him to progress. Again - that's what mothers are for. I'm sorry to hear that your arm will never come back but thankful that you are living the life you should and aren't viewing your arm as a "handicap". It was very inspiring reading your message and I'm sure after ready many more messages that I will find out ways that can be helpful to my son. Take care of yourself and keep on living!

Thanks,
Christi

Christi,
I often feel just as you do. My son was 18 when he had his accident. He had to learn everything over again, from holding up his head to swallowing, walking, ect. His arm does continue to gain strength, but it is such a long slow process. He goes through different phases. From working it every day to taking some weeks off. I used to get on him a bit more. I think if it was me I would work it every day. But, it is not me and as hard as it is for me to watch and wait it must be harder for him as the person with the injury. He has decided not to make the arm the center of his life. He wants to learn to run again and had been working on that while putting the arm on the back burner for a while. Now the last week he has faithfully worked the arm and legs daily. I also notice that sometimes he sits up in his room and is working it out when I am not even aware. Well, not aware until he can do something new and he calls me up to say "see what I can do now". We do go to the y on thurs afternoon when the hospital has the pool rented, he feels more comfortable then. Yes, in the water he can move it almost like normal. So if he's willing this is a great tool. I think your son just needs a break, let him take a little control of this. Sometimes I think they just feel so out of control of their whole life after something like this happens. I know that if Dustin never gets use of his arm he will be fine. We are so lucky he is here with us. As for girls, he hasn't had a shortage. As a mother it is just hard to step back, we want the best for our children.
We are in Neenah, If you would like to call my # is 722-8014. I hadn't heard of anyone else near Dustin's age in this area with a BPI. Where did your son go for therapy?
Sue

Hey Sue,
Thanks for responding and offering me your number. I am going to give you a call but it won't be until next week. We've got a lot going on this week. Mike went to outpatient therapy for about 2 months at Theda Clark - but then decided that he had enough and quit. This was last summer. He hasn't had any therapy since then and refuses for the most part. I am going to check in to the pool therapy and see how to get in to that program. I'm hoping that there are a few therapists out there that might be involved with this kind of therapy. I also have to check in to possibly home therapy but need to see what the insurance will pay. I'm just so glad that you mentioned the water therapy and now I feel there is a better chance at getting some movement back. It's only been 8 months and I know it's going to take a long time but he needs to get going. Again, I know that he'd be fine with only one arm, but like I said before - with the doctors giving him a chance at getting at least 70% back, I'd think he'd want at least that much. It's so hard to be a mother that I just have days I want to give it all up and run away. But the kids keep me here and I seem to find a ray of hope around each corner. How old is your son now and how is he doing? I'm hoping that some day our sons can get together and motivate each other. Thanks again for offering me to call you - I most definately will!
Best of luck to your son, family, and you!

Christi

Christi,
Dustin is 19. Not sure if I mentioned it but his accident was Nov of 2005, so we are 15 months out. Check with Lori at theda clark, they just let me bring Dustin when they have the pool rented at the y thurs afternoons. We also don't get charged as he is not using the therapists. With all his scars he is more comfortable when there a less ppl there, so this works out great. Also we can ask the therapists a few questions or watch and use what they r doing with others. I know the Appleton y also has several times each week set aside for ppl who need extra help. Dustin was in Theda clark for 7 1/2 weeks and did therapy there for about 9 mos. I think. He did have in home therapy when he was hard to move and I couldn't get him out of the house myself. He stopped therapy for a while, then decided he wanted to learn to run again so went back for a bit. Now that we are seeing more changes in his arm I would like him to go back for that but he hasn't decided he is ready for that yet. We return to Mayo in March for a check up. Will be interesting to hear what they have to say. We have set up our livingroom as a gym hoping to encourage him to work out more regularly. Looking forward to hearing from you. I know exactly how you feel, I also wanted to run away for a long time. It is hard on the family also. I wish I could do more for him, even though I too gave up a year or more to help.
Sue

Christi

Hi! I am so so sorry to hear about your son. I am only 2 years older than your son, but I know very much how you feel. My daughter is going to be 3 in April. She has a bilateral (both arms are affected) OBPI. I am sure this has been very difficult for your son. One day you are fine, the next this terrible thing happens. My advise: Get on the OBPI board and show your son all these little children who work so hard! These tiny children are so resiliant and inspiring!

It sounds like your son's injury is still young. My daughter had NO movement in her left arm for about 8 months after her injury! ANY movement is progress! Tell him about this site- there are so many others who understand.

Even though our children grow up, we NEVER stop being parents. Bring up the exercises. Get in the fight. Sometimes we all need our mom- and it sounds like your son needs you right now. I know how hard this is- it is hard for me to move my baby's arm and hear her scream, and watch those tears run down her face. But it is what is best for her. Your son will get over your arguments- one day, he'll thank you for it.

And hang in there- it does get better!

Veronica
Mom of Olivia, 34 months, bilateral OBPI

Veronica,

What a terrible thing that you have to go through with your daughter. How did this happen? I can't even imagine what pain she must endure while you do therapy on her. Have the doctors given you any outcome as to what to expect or how long this will take? I hope that it's all good news and the results will be positive! I'm going to show my son this site and hopefully this will give him a lot of motivation to see the progress that many have made. It will also be good for him to see that it's not all "peaches and cream" and it won't happen over night. I know that there are also some out there that haven't had much luck in their recovery. It just depends on how things happened to them. I say thanks everyday for the fact that we have our son. I try to stay positive in that respect, but then again just can't understand why he wouldn't want his arm to get better when the outcome the doctors gave him was so great. I'm still going to push the therapy, like you said, maybe he's reaching out to me and needs me to push him. I can get over the fights, but just hate the fact that it boils down to that all the time. Even though I feel weak at times and a failure, I bounce back because I know that this happened to our family for a reason and we are very strong. Thanks so much for the "motivation". I know it will get better! Take care of your daughter, be strong, and stay in touch!

Christi

Christi

What a great day for me to read your reply. Today was the worst day we have had in a long time. My daughter was injured at birth- she got stuck and the doctor pulled on her head to get her out. Her right arm is much stronger than the left- the left will never be completely normal, while the right is close.

I am SO PROUD of my daughter's strength- as you must be of your son. This is a hard road.

Therepy is painful. This morning her PT moved her arm (Range of Motion) for about 20 minutes, and Olivia just cried. It was like torture. After therepy- I cried too. I know your plight- and it is very hard. But we all have our cross to bear. It is too bad that it has to be a fight- but this is worth fighting for!

There are many adults that are injured, like your son- but there are many children like my daughter as well. Hopefully when your son sees how hard these little children have to work, he will be more inspired. I can imagine how hard this is on him. A prognosis like 70% use is great! If he works hard- he could do better. The human mind is a powerful tool- it is amazing what we can overcome.

The exercises are painful- they are frustrating! But it does get better. Like most things in life- you will only get out what you put in.

Stay strong. I know how hard it is. Sometimes you just have to cry. You are being a good mother- if only all children were that lucky!

Veronica

Christi,
Do you and Mike go to the Theda Clark rehab picnic? Just wondering as we will be there.
Sue