United Brachial Plexus Network

Hi everyone
Just a quick ask. In one of the posted messages I saw the title of book called "Living One Handed in a Two handed world" or something like that. I am in Australia and can not find this anywhere, so here I am asking help.
Sean, my son, is doing much better. We saw the "where do we go from here doctor" on Thursday and she has sugested that Sean try nuerontin for the pain. How have others gone with this? Also that he starts physio to build up the muscles around the shoulder area. He is going to see a rehab recreational specialist so he can water ski and swim again soon. He is amazing. This weekend for the first time since the accident he has gone away for the weekend with friends to a sleep out rock concert. He is working so hard to get his life back on track.
Anyway i hope someone can help with the book and where to get it.
Merry Christmas to all and keep praying for the miracle.
Moira

The title is "One Handed in a two Handed World"
You can order on line from either company
both are charging $20.00 (American $) plus shipping...
I hope this helps..
Kath


Barnes & Nobel Book stores....
http://www.barnesandnoble.com/

and also

Amazon.com delivers all over the world...

Hi Moirap,

"One Handed in a Two Handed World" is an excellent book for anyone with a BPI and I highly recommend it! In fact, I work at a library and I just recently persuaded them to buy a copy for our collection.
For those out there who would like to see this book or any other before purchasing it, I have a suggestion. Go to your library and request to borrow it through their Interlibrary Loan Department. Libraries around the world all have this service, and it's usually free.
This is my job at the library where I work in New Jersey..just today I borrowed a book for one of our patrons that came from Alaska!

Good luck to you and have a great holiday!
-Stephanie

Hi, i haven't seen the book, but have a question; the 'rehab recreational specialist' your son is going to see, as far as i know we (UK) have nothing like that here, or perhaps i'm wrong and they go under another name, do you have any info on what these guys do?
Sounds like your son is getting back on with his life well, great!, and good luck!

You asked about neurontin. This is actually a drug used for epilepsy. I tried it and I was up to 2,500 mg per day before it even took the edge off of my pain. The side effects were awful! It might have just been me but I tried for a month to get the side effects to go away before I stopped taking it. To be perfectly honest I could not function with this stuff in my system. I now manage the pain without any meds now. I went to a doctor of natural medicine who taught me relaxation techniques to help control the pain. I have days though still where the pain is almost impossible to live with but I get through them. I now look at the pain as being at least a positive sign that my arm feels something. If there was no pain I think I would have given up hope of ever using my arm/hand again.

As to the book I ordered it and have read it. It is really good and I wished I would have found it sooner.

Hi
Thanks for your reply. The Rehab recreational person was great. She came to the house on Thursday and talked to Sean for quite a long time. She works with people interested in water sports mainly, so sean is going to have swimming lessons to alter his technique and a special harness is being made that will allow him to waterski and wakeboard. We watched a couple of videos with people sking in competition, they were amazing. This will be great for Sean, he loves the water. Alison, his rehab person, is happy to work with him to have a go at any sport that he feels interested in. Fingers crossed that it all goes well.
We are in Australia so i don't know what is available in the UK.
Good luck anyway. Merry Christmas
Moira

I have used Neurontin since December of 1995. It was pretty much a night and day difference from using Tegretol (forgot the correct spelling). I'm not falling asleep driving to work and the pain decreased significantly. I take 600 milligrams/morning, 600/noon and 900 before bed (w/100 milligrams of Elavil to help me fall asleep). I have also found that doing stretching exercises (to injured left arm) before I go to bed or when the pain returns, tend to help releave the pain (but doesn't seem to help my spelling). Also, I have found that if I stay busy concentrating on something (even just driving) helps minimize the pain. There is always pain, just in different intensities. Don't treat him like an invalid. He will get tougher by the day and he will be respected for that. Good luck and I say a prayer every evening at bedtime. I goes: Dear Lord, please restore motor function to my left arm and left hand. Please releave me of my pain and suffering. Please bless the doctors and the scientists with the tools and technology to repair the damage I have done to myself.
Take care and have a wonderful Christmas.
Arnie.

Hi Arnie
Thanks for the reply. We dont' treat him as an invalid, but it is almost unbearable to watch him in pain. he is truly amazing us all with his determination and courage. These qualities seem very evident in all who have a BPI. I hope the neurontin works for him too. Thanks for the prayer that you say if you don't mind I will pray it every night and morning too.
I believe in miracles and I am sure that one day there will be a breakthrough and an answer to our prayers.
Peace to you and yours this Christmas
Love
Moira

Merry Christmas Moira,
I know the kind of pain he is dealing with. It's good that you're giving him support. That's probably the best thing he needs at this point (prayers are good too). My family and friends were of great support to me. I was going to the pain clinic at the University of Michigan hospital and they prescribed the neurontin. Before that, if I can remember correctly, I was trying what I think was battery powered unit that would shock or massage specific nerves on my chest and back. That didn't work at all. My family doctor told me about the exercises and that if you do not stretch the muscles, they will begin to shrink and tighten (this is where the pain comes from) and once they harden up, elasticity can never be restored to them. If that happens, once a process or cure is developed, those muscles that hardened up will be rendered useless. I was a prototype mechanic/fabricator before my accident, and to take my mind off of my pain, I bought a 1969 Mustang to restore. Every little project I did on that car was a challenge, but it kept me concentrating. Most of my pain comes when I sit around "dormant" watching television, and as I completed projects, I gained back confidence and proved to my family (mostly myself) that I could still be independant. The car is done now, and I have a few trophies from it, but the biggest one was my pride. He'll be OK. As I said, he'll just get tougher.
Take care, Arnie.

I found this on a web page......It has sample pages and it also said it had some used copies too!
T.

http://www.amazon.com/exec/obidos/tg/st ... eader-link