A post from a woman on the general board. Seeking advice

[admin]

Hello, JennyB! They said you would check in, and you did!
I am anxious to respond and discuss Dr. Kline, but I am on my way to California for a week to babysit our 2 big boys while their nervous parents take off.

I will check in when I return, and I wish all my new friends a lovely holiday. Thank you all so much for making me feel so much better.

Barbara

[admin]

Hi Barbara,

It seems like there are lots of people who deal with this injury in a very positive way, hopefully you will see from so many responses that just about anything is possible if you want to accomplish it. If something I write helps, then I am glad to help.

I had to think about picking up my little girl when she was a baby. But I know the first thing I did was roll her sideways, then get my hand under the top of her back and base of her head. Depending if she was on the ground or on something higher up, I would lean my body as close to her as possible so the lift to my body was short and quick. I would then stand up and lean back so I could get her situated on me and get my hand and arm in a good position. I think this might be easier than picking up a toddler because she was so light.

I was thinking of picking up my daughter if my leg muscles were not what they are today, that would be a bit more difficult, just might take a few more steps. Thinking of your example would it be possible to lift her up in stages. From the ground to a couch or chair and from there up if possible or maybe one more level. This way you don't have to lift the entire way with your legs. That would be one idea.

Have a great trip to my neck of the woods in sunny hot California.
Dan

[admin]

Hi Dan, and everyone who has been so kind and helpful to me (on this thread, do you call it?),

That was some very good advice you gave me about picking up a baby, Dan. I'm practicing on a teddy bear, just to get the hang of it, and will shift over to 5 pounds of potatoes when I feel ready. Somehow, 5 pounds of potatoes is heavier than 7 pounds of baby.

By now, my toddler granddaughter is walking so much that I think I can get up from a couch with her, if I can catch her first. Or maybe I'll just keep her on my lap and read to her. I won't take any chances with them, and their careful parents will be right on top of me anyway.

I will have a lot experience to report, as my 3 children and their respective spouses and children will come in at the end of next week to celebrate our wedding anniversary with us. We must have done something right.

Our fifth grandchild, sex unknown, may be joining us very soon as well. My daughter is cleaning everything she can get her hands on, including the garbage, and her doctor is moving up her due date. It would be the best anniversary gift we could have.

Although I never heard of brachial plexopathy before my own problem surfaced, I was shocked to find out that it is also a birth injury that can surely be prevented. I forewarned my daughter, of course, who brought it up to her OB. We certainly hope for the best and safest outcome.

Yes, Dan, California was actually warm and sunny last week, a real miracle in San Francisco. They get about 6 decent days out there all year,and I consider myself lucky to catch even one of them. I guess you must come from Los Angeles.

Stay well,
Barbara-

[admin]

> Hi Barbara, sorry it took me so long to reply :0)
> I am amazed that the nerve damage took so long to
> show up, that's terrible. Have you seen an actual
> tbpi specialist-I know Dr Kline from Louisiana has
> written papers about radiation tbpi but I'm not sure
> whether his clinic is up and running after last years
> hurricane. I am wondering if they can do any kind of
> nerve grafting or transfer to help you????
> I got my tbpi like many others, in an accident, so it
> was like one minute I was 'normal' (hahahaaaaaa) then
> next minute, I had no use of my right arm. That was
> obviously a big shock, especially as I had 6 breaks
> in the arm so assumed that was why it wasn't
> working-I found out after a week or so my paralysis
> was permanent- but in some ways it gives you a low
> point from which to strive upwards. I was very upset
> at the beginning and assumed I'd never do normal
> things like have a job, kids, marriage, drive etc
> etc, especially as in my case it was my dominant arm
> that got damaged. But as everyone else says-you just
> do it.
> By 2 years post injury I honestly hardly thought
> about it, except when it hurt, which I'm afraid it
> still does. I had very little overuse pain from the
> left hand at the beginning and in fact have only
> started having that in the last few years. This has
> coincided with menopause, so I think that has a lot
> to do with it. If the good arm hurts, I stop using
> it. Works for me, and I'm still able to pick up my 7
> year old daughter with my left arm, and I can dig a
> fair trench for my runner beans, too :0)
>
> Your arm getting worse would be an awful thing, as I
> said, losing all movement and feeling in your
> dominant arm in a split second is one thing, but to
> gradually lose it, bit by bit, I would hate it and I
> feel for you. I wish I could help more with
> suggestions for gadgets and adaptions but the truth
> is, other than left handed scissors, I don't have a
> single one. I just do everything with one hand and it
> seems normal to me.
> Please keep us posted about your progress, I know
> that radiation damage is known as a cause of bpi and
> there used to be a highly vociferous group of women
> in the UK trying to get some answers about this kind
> of damage but I can't find their website now. I'll
> keep looking.
>
> Take care Barbara and everyone else, we all have
> different injuries and different issues, but at least
> here is a place people who know how hard it is can
> sympathise.
> Jen NZ

Hi, Jen!

I'm back, and trying to answer some of the responses I received from all of you.

I am curious to hear more about Dr. Kline in Lousiana; I never heard his name in my travels through radiation damage. I have seen Alan Belzberg at Johns Hopkins, and I thought he was supposed to be the last word. Can you give me a first name or an email?

You must have sustained a great deal of pain when you were first injured.....6 breaks?! I am sorry you had to go through such a trying time without a husband to help you. I don't know what I would do without mine, even though he still goes to work all day. I save a lot of stuff for him.

I am surprised that you had very little pain from the opposite hand. Are you able to use your damaged arm at all, like to balance light things, or hang up clothing?
Mostly, I'd like to know how you get into a bra without pulling it up from your feet! Not only does that re-inflame my good hand, it kills the bra!

Getting it off is a lot easier, but still my therapist tells me not to use my good hand for that. All the front closing ones require the use of my bad hand in a way that it just cannot do. They are really made for women who can't reach behind their backs, not for those of us with weak hands. Ladies, is there anyone out there who knows how to do this? I have this book that thinks the solution is not to wear one at all, which is no solution, only a cop-out. After all, there are innocent children out there who would be traumatized for life, seeing this old dolly bouncing around the streets. I wouldn't look myself.

Jen, believe me, menopause makes everything weaker, even the brain, I think, so I can't believe you can pick up your 7 year old with one hand! You must have been in wonderful condition before, or you have found some way to increase the strength in your left arm. You can dig a trench? Good heavens, I can't even prune my roses! Even to remove the dead flowers! I must really be a wimp.

(What kind of bean needs a trench, anyway? I used to use only a pole for them to climb.)

You are right about the scissors, though. They make a difference. But how did you learn to sign your name lefty? I am having a hard time just printing. It is a very slow process, and particularly frustrating when trying to take down a rapid phone message or a long number. I admire your ability to do everything with one hand; can I follow you around for a day and watch?

I know the group you are referring to in the UK. I actually found them before I found this wonderful group. They call themselves RAGE, and they are very, very vociferous. They are all breast cancer survivors, and all have been horribly damaged by radiation. They live with terrible pain, and are mostly interested in suing the Royal College of Radiologists....I don't have the exact name in front of me....and they publish a newsletter that would bring tears to your eyes. I do stay in touch with them, but I cannot compare my difficulties with theirs, although they did tell me how to open a bottle of wine singlehanded. I am truly bewildered by the poor level of treatment they received and continue to receive.

Sorry this is so long; hope I didn't scare you away with all my questions and comments. Are you really in New Zealand? I never knew anyone from so far away! The Internet is truly a wonderful invention.

Stay well...and plant a couple of those beans for me!

Barbara-

[admin]

Hi Barbara
Yes, I'm in New Zealand, and a very good place to be it is too I emigrated here 6 years ago from the UK. You're right, the internet is just an amazing tool.

I'm sorry if I made you feel like a wimp-of course you're not! All of our injuries are so different and I think the age you were when you got injured makes such a huge difference to both recovery and adaption. Both physically and mentally you are programmed to adapt quickly at age 21. If it happened to me now I don't think I'd find it as easy. I also think that if you still have some use of your affected arm, that's going to slow down the process of adapting to using the other one. I took around 6 months to be able to write properly with my left hand, and that was with me using it every single day. I still can't write for long with it, thank goodness for computers.
Bras-I am not that endowed either, like Xiggers. If I do wear one I can get hold of each half of the strap and do it up behind my back with my left hand, it's like I use two fingers to hold one strap and another two to hold the other strap. I used to do it like Xiggers, fasten it in front then turn it around. I think I must have long or dextrous fingers or something because I also tie shoe laces using one hand as two. I use my first 2 fingers together as one hand and my thumb and 3rd finger together as the other. But I've been talking to others with bpi for years now and nobody else seems to do it this way.
Runner beans are what they call gross feeders and my soil isn't that great, so I dig a 2 foot trench and throw compost in it to rot down all winter before I plant the beans on a row of poles. It's gloriously spring in NZ right now, daffodils, tulips, irises all in bloom. I am a very passionate gardener and I have half an acre which three years ago was an empty field. It's been hard work and although my husband has to break the ground for me, I do the rest. I'm doing it bit by bit, I need a few more years so I hope my good arm survives long enough.
I don't think I'm very strong, really, and when I pick up my girl she clings on with her legs, I'm not sure I could handle her as a dead weight. If I get trouble in the good arm, it's in the elbow or more often the shoulder. Avoid overhead pulling, I pulled down a rampant kiwifruit vine and couldn't use my arm at all next day.
Dr Kline's address pre Katrina was as follows
Louisiana BPI Specialists/Clinics
David G. Kline, MD
Robert L. Tiel, MD

Approved contact information:
Department of Neurosurgery
Louisiana State University Health Sciences Center
1542 Tulane
New Orleans, LA 70112
phone: 504-568-6120
fax: 504-568-6127

I don't know whether the address would be the same since the hurricane.

Dr Belzberg is also good, I have heard good stuff about him with adults. Another place where adult onset injuries are the primary interest of the team is the Mayo Clinic in Rochester. The reason I mentioned Dr Kline is because he's written papers about radiation damage to the plexus, but I would think Belzberg would be very well informed, too, his main interest is adult injuries which is quite important.
RAGE was the group I meant, typical of Brits to help you open a bottle of wine, got to get those priorities sorted, right?
Keep your chin up Barbara and feel free to mail me any time, my email is there if you click on my name.
Take care
Jen NZ

[admin]

Barbara,

Glad to hear about the learning curve on the Teddy Bear and sack of spuds. That is the attitude I referrenced back in my first post to you about working as hard as possible to overcome the things you struggle with. I think it is great you are doing what you can so you remain the active Grandma it sounds like you have always been. I am sure you are applying that attitude to all other areas of your life and seeing the rewards.

I remember my wife cleaning everything, she was the ultimate cleaning stereotype, the husband comes in to see his 9mos pregnant wife standing on a chair with one foot just to clean to top back shelf in the pantry. Your comment about your Daughter reminded me of that and give me something to look (cringe) forward to in about 6mos.

Yep, I am a Southern California boy, born and raised, so glad the heat is just starting to go away for the year.

How was the anniversary, how many, and do you have #5 yet, if so, boy or girl?

Please let me know if there is anything else you might want my two cents on.

Dan

[kellyma1973]

Hey Dan and Barbara and others. I found this sight yesterday when looking for advancements in treating the phantom pain (I haven't looked in almost 10 years), and I love it! Dan, I read your story almost as if I wrote it myself! I had an accident 15 years ago, also at age 18, recognized I had a choice - life of misery, or life as usual. It wasn't even a choice for me.

I think what you do for those kids is incredible. I try to share the emotional and mental positives that came from the accident to people who ask me about my arm.

Barbara, my sister just had a baby in January, and while I did have a hard time picking her up at first (she was usually handed to me), now that she's a little wiggle worm and can move around and crawl etc, she's much easier to pick up. She's an adorable little girl.

Anyway, I'm glad to hear than you are making progress, and I'm glad to hear about you in general, Dan. Your story is inspirational.

Take care everyone!
Mack

[admin]

Hello Dan and Susie and Kath and Xiggers and Jen and all my helpful friends,

We've been busy out here with good things. Our children made a small but elegant dinner party for our anniversary this year, which was rapidly followed by the birth of our second granddaughter. She is just beautiful, if a bit loud, and just what her 4 year old brother ordered. She is our fifth grandchild, and she is lucky enough to have a little girl cousin just one year and 2 days older than she is. Our little girls will have 3 older, handsome boys to choose from when their first proms comes up and their respective fathers won't let them go.

Mack, thank you too for your encouragement about picking up the new baby. It is much easier to have someone hand her to me, but when I had to lift her from a couch, I did, thankful for the receiving blanket she was wrapped in (all 6 pounds, 7 ounces of her), and thankful that her head is firmly attached to the rest of her. I am sure it will get easier.

As good as all of you have made me feel, I would still like to find someone who has had the same radiation damage that I have had, mostly because I don't know where this is going. I don't have a good feeling about it, but still, I have to know. Does anyone have an idea how to do that...is it called a new thread? Or do I need a whole different site? Do you think I can find it on the message boards? But so far, I haven't found anything even remotely like that.

And as long as I am asking technical questions here, how come I am listed "woman on board"...etc? I was sure I registered, but I am under "richinma2005" from the Boston area. I am from the Chicago area. I have no idea how that happened. Should I just leave it alone? Whoever richinma is, he/she must be awfully annoyed getting all of these messages that may have no relevance to them at all.

The other reason it bothers me is that there is no clue as to what my problem is, and I am amazed that any of you found me. How did you, anyway?

I know I have asked a lot of questions here that may not be too easy to answer, and I don't want you to think I want to leave any of you; I certainly don't. I just want to add what I don't know, and that of course, you can't know.

And another thing....I told you I was the queen of verbosity, did I not?...my therapist created a splint for my affected hand that is intended to keep my fingers from curling under. A couple of them are curled anyway, and I find the splint uncomfortable, even when I loosen it. I am supposed to wear it only to bed, but I can't tolerate it. Anybody have any ideas what to do about it? And do you think it works, for a while, anyway?

I hope you are all well,
Barbara-

[kellyma1973]

Re: Fingers curling:

Hi babs. I constantly stretch my fingers using my good hand. I'm careful to stretch every joint and my wrist as well. 15 years and almost as flexible as the good hand. Start out with every joint 10 times each 3x a day and see if you notice a difference.

[ptrefam]

Glad you are figuring things out Barbara. Congratulations on the new granchild. Yes, if you want to start a topic with a new heading then you can use new thread. If yours doesn't seem to be listing you correctly go to Your control panel on the top right and you should be able to change your info. I see you listed a guest. So, you also need to sign in to post under your name. Sorry, I don't have any info on BPI caused by radiation as I am fairly new to this and only learned of BPI last year when my son was injured. I read everything posted hoping for more ways to help improve his arm.
Sue