United Brachial Plexus Network, Inc.

Looking for peer support or conversation for my son, 16, who has suffered TBPI a year ago, in a ski race crash. Left arm is non-functioning. Completely paralyzed from elbow down. Capable of shrug only at this point. Had surgery at Mayo 10months ago, including free muscle transplant from leg into arm, nerve transplants from both legs into left arm, and intercostal nerve transfer. Still working at accepting new normal. Suggestions on help with process, cope with pain and get back into athletics?

I just sent you a "PM" and would be happy to talk to your son.

Dan

HELLO, MY NAME IS BYRON I'M FROM L.A.,CALIFORNIA,I'M NOT A TEEN BUT I DO HAVE A TBPI THATS FAIRLY NEW,4MONTHS TO BE EXACT.I JUST WANT TO TELL YOUR SON HE HAS GOT TO HANG IN THERE AND STAY POSITIVE,LIKE I SAID I'M NOT A TEENAGER BUT BEFORE MY ACCIDENT I WAS VERY ACTIVE,WORKING OUT,SPORTS AND MOTORCYCLES,WHICH UNFORTUNATELY IS HOW I WAS INJURED SO I CAN ONLY IMAGINE HOW TUFF IT MUST BE FOR HIM AT SUCH A YOUNG AGE TO BE DEALING WITH THIS.IT'S A FRUSTRATING INJURY AT ANY AGE ESPECIALLY WHEN YOU ARE USED TO BEING ACTIVE,I HAVEN'T HAD SURGERY YET BUT FROM WHAT I UNDERSTAND IT TAKES A WHILE BEFORE YOU START SEEING ANY RESULTS SO TRY TO BE PATIENT,I KNOW IT'S EASIER SAID THAN DONE BUT HE'S STILL VERY YOUNG,HIS BODY IS STILL GROWING AND SO IS THE RESEARCH AND TREATMENTS FOR THIS INJURY SO STAY STRONG,KEEP YOUR MIND BUSY AND STAY POSITIVE,WHERE THERE IS A WILL..THERE IS A WAY....I LOVE RIDING MY MOTORCYCLE AND PLAN TO RIDE AGAIN,EVEN IF IT'S WITH ONE ARM..SO I KNOW BY THIS TIME NEXT YEAR,HE'LL BE BACK ON THE SLOPES!..DON'T GIVE UP! GOD BLESS YOU AND GOOD LUCK!

sandra,
i'm 5 months out from my accident/injury. i've had some good progress with my hand but no lift at all yet. it has been good for me to communicate with the others on this board. i'm 59 but if your son needs to exchange ideas with those in the same boat i'm here. good luck.

if he still wants to ski race, let him get in touch with : Disabled Sports. this organization runs programs for ski racers with disabilities.

http://dsusa.org/

I hope this doesn't sound cliche, but 2 years out from my accident, and I've found the biggest limitation has been in the mind and not the body. The phrase I hear the most from my loved ones is "I can't believe you can do that." Attitude really is eveything and every day I discover I can do something I didn't think I could do. It's just a matter of trying.
I think it's especially hard for a parent to NOT help when they see their child struggling, but letting them struggle through it is often the best thing to do to help them cope and become independent. I noticed in the beginning people had a tendancy to just take something out of my hand and do it for me if I was struggling, as if I were a child and that was actually much harder on the self esteem than struggling to do something. I now have everyone trained to only help if I ask for it and I think that's one of the reasons I've become independant enough to live completely on my own
I've found the most helpful thing to do before trying something out is to form a plan of attack. In most cases it's simply a matter of changing the organization, techniques, and methods you would use for two hands into ones you would use for one hand. Sometimes I get frustrated, but more often than not I end up glad I tried.

I am 3 years post injury and I was a teenager at the time of my accident. And boy has it ever been life-changing. But the old saying holds true in this case more than ever 'what doesnt kill you, will make you stronger.' The journey is not one that I can say has been easy but there is no greater satisfaction than realizing you can do something you never thought you could do, especially after countless tries. Everything is about how you choose to view the challenges (or opportunities) you have been given. I couldn't have put my thoughts as I was reading this discussion into words any better than what Angela said.

I as well would be more than happy to talk with your son over private message if HE would like to talk, or you would like to chat as well.

Keep your head up and remember how important you are in his life. I know sometimes (at least in my house) my desire to prove to my own self I could/can in fact accomplish and find a way to do xyz task led family to think i was pushing them away.... When really it was just a way to not lose self-esteem and to move on with life. But they are my life and I couldnt be where I am with out them. Much luck to the you, your son, and your family and hope everything works out for the best.

To all who have posted replies about Lucas, 16, my son who crashed ski racing and suffered evulsion of c5/7, t1, thank you. We are taking it day by day and most days are good. He did get back into skiing in a less competitive venue, but he's having fun and getting accolades...going to high school ski championships at the end of the month. That said, the difficult moments, and they are more moments now, and not days, are when he feels incapable of something; or self-conscious of his atrophied, scarred and paralyzed arm; or when he has to explain to his peers for the umpteenth time that his injury is permanent one, those are the tough moments when I don't have the right words for him and he resents my asking him why can't he just try a new normal....I will never fully understand his loss, obviously, but I encourage him not to allow his arm to define him, to challenge himself to defy the standards, but the injury is still new enough and he is still recovery from his nerve transplants; transfer and free muscle transplant. I think he cannot fully identify his new normal until his healing is complete, which will take several more months....a lifetime for a teenager.

It takes time to whole-heartedly accept the "new normal"... I can relate to all of what you just said. Keep encouraging him, it's the best thing you can do. Be there to help him, but let him work through his obstacles himself unless he wants help (As Angela said earlier). That helps self-esteem immensely, just realizing you can in fact fend for yourself and accomplish all your daily needs, particularly on the off days/moments. Especially since he is at the age where his independence is very important to him as well as plans for his near future. I am so happy to hear he has gone back to Skiing, that's pretty awesome and an accomplishment in and of itself!

GOOD TO HEAR HE'S SKIING AGAIN,NOTHING CAN REPLACE THE LOSS ONE EXPERIENCES FROM THIS TYPE OF INJURY,IM ONLY 4 MONTHS POST INJURY WITH NO SURGERY YET AND I'M IN MY LATE 30s,UNTIL THIS ACCIDENT I HAD BEEN INJURY FREE,A SPRANG OR BUMP HERE AND THERE BUT THAT WAS IT,I'M HAVING A DIFFICULT TIME EXCEPTING WHAT LIES AHEAD AT THIS STAGE IN MY LIFE,SO I CAN ONLY IMAGINE WHAT YOUR SON IS GOING THROUGH,BUT LET HIM KNOW HE IS AN INSPIRATION TO PEOPLE LIKE MYSELF WHO ARE NOT READY TO SLOW DOWN YET AND I KNOW HOW FRUSTRATING AND UNCOMFORTABLE THE QUESTIONS CAN BE,PEOPLE SEE YOUR ARM IN A SLING AND THINK IT'S NOT THAT SERIOUS,THEY DON'T REALIZE IN MORE CASES THAN NOT,THIS IS PERMANENT AND FOR THOSE OF US GOING THROUGH THIS,THAT'S A HARD PILL TO SWALLOW.ANYWAY I HOPE THIS YEAR IS BETTER THAN THE LAST ONE AND MAY IT BRING YOU JOY,HAPPINESS,SUCCESS AND MUCH PROGRESS.