United Brachial Plexus Network, Inc.

Maureen.... try to get him to get to the boards.... or you can offer him my email, I will chat with him personally! Like I said to Joyce, I WAS THERE so I can really relate! The best thing I ev er did was to meet others and see that I was not alone in what I was feeling! I thought i was a freak of nature, no one else had this injury, no one would understand what i was talking about. it is AMAZING when you learn that you are not the only one!!! My email is wildncrazyney@aol.com Joyce gove this to your son too!! Hoep to see you all at camp!

COurt xx

I really didn't read all of the threads but would like to stear your son towards a organization a good friend (BN Amputee) has started. http://www.ampedriders.org we have worked together to bring hope to others that enjoy "alternative sports" and need to test their limitations and get after it.

Being a TBPI for the last 7 years has not slowed me down at all! I surf, Snowboard, Skateboard, Sail, play with my kids, work. Everyday stuff. I will admit to creating a adaptive sling in order to enjoy these activities, and do have plans to amputate.

Here are a couple more links for him to check out.
http://ampedriders.org/images/skaters/R ... perwan.jpg

Yup thats ten foot deep.
http://ampedriders.org/images/skaters/R ... totail.jpg

Hope this helps, remember its just your arm, the rest of "YOU" is still here.

Rob

Hi Joyce, I am sorry to hear about your son's accident. My son had his accident in May 2004. We are nearly at the 12 month mark. I know how hard it is to keep a positive attitude during this time, but don't give up. All I can suggest to you is to be there for him, even if he doesn't want it push your way in and even nag if you have too. I know it is very hard but just do it.
We have supported and encouraged our son as much as possible during this time, he too suffers terrible pain, but we have encouraged him to keep going. Not to give up on the things that he did before. He has only lost the use of one arm, not the use of his legs and he still has a brain that he can use to his full benefit. He is doing hydrotherapy at least three times a week to keep his arm in physical shape, he has started to fish again which was his passion before the accident, he has got himself into a course and doing Real Estate certificate so when he is able to work again he will have some qualifications and he has continued to keep in constant contact with his mates and goes out with them on a regular basis. They too have supported him and not let his injury hold him back.
Make some enquiries around about rehabilitation programmes for you son and sporting groups that cater for people in your son's situation. Once you start looking you will be surprised what is available.
Good luck and is you want to email me anytime for a chat....regards Michael's mum Narelle

Rob,
Nice...now thats what I'm talking about. So...whats my excuse...

Hi Joyce,

I've been thinking about your post for a few days now, and I think you pinpointed one of the major reasons why your son is having a hard time when you said 'having to move back home and nothing to do...'

Having nothing to do is a big reason why so many of us sink into a depression, or become too obsessed with all the ifs and maybes; it prevents us from moving on and finding out that there certainly is life out there, maybe not as we knew before the TBPI, but a good life, full of as much activity as you want regardless really of how severe the injury is.

Moving back home after a life of independence can be felt on an emotional level as taking a very big step backwards, and unfortunately can cause so many more problems...but not always. I guess what I am trying to say here is that you may sometimes, daily even, find yourself in a very difficult positon, and very much torn between doing everything for him, which is after all a mother's instinct, or going the other way and being too harsh in an attempt to get him to 'snap out of it.' Extremes in both is not good as you are no doubt well aware.

The main thing to remember is he is going through a kind of 'mourning' and hard though it is to bear watching him go through this, it is completely normal and to be expected. I am not saying completely abandon him to his own devices, but allow him to go through this...very difficult for you and a very fine balancing act!

The thing about PT and getting him to go to a clinic; well all I can tell you is my point of view from my own way of dealing with this injury. I personally found that the day I decided to not carry on with formal PT, or continually hope for a surgical cure was the day I suddenly felt liberated and fully recovered, ready to get on with life and to accept what would or wouldn't happen in terms of regain of any use. It was a real turning point in my recovery, and I think many of the long termers would relate to that too. So you see, sometimes giving up on all that after a certain length of time can actually be a positive step.

I did always do stretching at home, and continue to this day as I believe it does help with the pain, but thats all I do.

Something else that springs to mind; you might find that having a certain amount of a sense of humour about this tough situation will go a long way...again, once I found I could laugh about it, and this happened on a daily basis after a while, life became so much easier for me and all around me. Laughter truly is the greatest 'medicine' that we humans possess..and it's free!

I just wanted to end this with something about meeting other people with TBPI (sorry..this is sooo long!)When I was first injured, in fact up to several years after, wild horses wouldn't have dragged me to a meeting of others like me...I even went to several bike rallies in the early days when there were others with a TBPI around, but I didn't let on that I had one too. I just wasn't ready then. I suppose it was a kind of denial...even tho I was comfortable with the injury, and never hid my arm or anything, I just couldn't bring myself to talk to others, so I can fully understand anyone who has the same attitude. Each one of us has to come to meeting others in their own time.

It will happen, and when it does, they will wonder why on earth it took them so long. Everyone who has been to a meeting with others have all said what a fantastic experience it was, and want to continue, even if it is only on message boards such as this and the UK TBPI one. We have many, many lurkers here and on the TBPI Group boards. Hopefully, one day they will join in and when they feel safe and comfortable enough actually go to a meeting too.

Anyway Joyce, sorry about the long message but hopefully it might help others too. Well done for asking the questions...so many parents do struggle on alone with this and I think this is a shame. There are lots of you out there who could really benefit from sharing their experiences. Lets face it, you are going through agonies yourself and need support too, just like us.

All the best

Lizzy B :0)

Thank you Liz,

I feel better after you said that you too did not want to talk to people in the beginning. Gianni is two and a half years post accident. What was the turning point that let you open up? Do you have any suggestions for me to help him open up?

Maureen aka Gianni's mom

Hi Maureen,

The turning point for me was when I actually started to look for information about the injury on the internet and came across these message boards. I was absolutely horrified to find out that some babies get brachial plexus injuries during the birthing process, and at that point, I realised how little knowledge I had about TBPI in general, let alone the obstetric stuff.

I lurked around the adults board for weeks, just reading the messages and it wasn't until about 2 months after first finding the boards that I had the courage to actually post something. This place can be very scary for a newby...anyway, 3 or 4 people on here answered my query, and from these people I realised there were far more of us than I ever imagined.

I realised slowly over the following months that getting a group together over here in the UK was good idea, since at that time, there were many Brits posting here.

Anyway, I could go on all day ;0) but the time scale for all this, for me was about 6-7 years after my injury I decided to come 'out' and look for info or maybe others like me: couple of months looking around on here and I finally posted; about 9 months or so after that we had the first meeting at my house...and now we have the full on charity status over here, the website, messageboards etc and the annual social meeting/gathering here in the UK.

So you can see, it took me quite a long while. Some people open up well before that...Court is a great example...and some may never end up mixing socially or otherwise with others..it is enough for them to know that there are others out there, and maybe something to think about in the future when the time is right for them.

We can all of us testify that these meetings, camps or whatever are hugely beneficial to all concerned, but its like the old saying, you can lead a horse to water...etc etc Gianni is still very young...I honestly can't think of anything that you could do to get him to open up, but I bet he will one day. He just needs more time, like I did.

All the best Maureen, my best to Gianni too...

Lizzy B

9/04--pretty early to be throwing in the sponge, so to speak. I agree with everyone else who said that your son is in the dreaded "adjustment" period.Sucks bad, but at six months I was at the worst of it. I'd say it is also pretty early to "accept" the whole senario as well. 50% chance is pretty good, I've got zip--but "hey that's the way it goes." It's a day to day (sometimes minute to minute) struggle at your son's stage--let him ride it out.
I would, however encourage him to get some sort of outside interest--soon. Me, I gutted an old metal barn, took me most of a year but it got me out of the house. No expectations, no time constraints, i'd just go out and work at it until I got tired of it. It worked great for me. Then I started volunteering at th hospital, which was even better(many nurses who think your great)and now I'm workin on a Bachelors degree. If you would have told me any of this six months post accident, I would have said you were nuts.
The pain is still bad, but so what.
Onepaw