United Brachial Plexus Network, Inc.

Hello friends...........

I'm back and I've missed you ALL !!

We are finally back in our home, as you know if blew up after a lighning strike. I have survived and am dealing with my grief of losing my best friend (Hazel) and three days later my other best friend (our beloved doggie Dillon).

I wanted to give a very BELATED but heartfelt HELLO to all the NEW and old ADULT bpi's who frequent our board. If you wouldn't mind, could I ask for a brief hello back from some of you new folks I've been gone so long I feel a lil lost at who's who And of course you don't know me from Adam........do we have an Adam on here now hahaha

I am Tina/Tbaby/T. from Michigan. 45 3/4 years old (just for you kath) with bi-lateral bpi. I have a wonderful life which at times has been hard, but do not suffer any underlying anger or sense of loss (except with the lighning god's) haha I am who I am. Stubborn,independent,caring, I like to think thoughful and sometimes humorous There are a lot of things that due to my arms, I cannot do...........but I tend to focus more on the things that I CAN DO. One of the things that I can do and do DO way tooo much is prattle on, so I will give you all a chance to introduce yourselves if you would

Thank you and I'm soooo glad to be back

p.s. thank thank thank you :: mike,liz,kath,jenny,judy,dave-o,nancy,george and all the rest of my extended family that has been here for me.

Hi.... Tina Baby......and everyone else!

Well I am glad to see you again.... LOL... and not just on e-mail......

I was beginning to think I was the only adult/obpi on this playground..... LOL...

Or am I in the nursing home and don't know it yet....
LOL... NOT >>>>>> NOT>>>>>>

I am Kathleen aka Kath.... change my name so many times due to duplicate Kathleen's on the board...
I am 62 and 11/12...(Tina... I like that fraction thing)... LOL... I live in New York

Tina - John is older then I am so does that made him the Adam here???

I am right obpi... I had Horner's.... and I have functioned quite well until overuse got me three years ago... Overuse and the need for information on "Erb's Palsy" cause me to begin researching for information on this injury. I knew how to live with Erb's but did not know how to get treatment for it. I realized that no one seemed to have a grasp on what I lived with nor how to treat it... Thanks to the internet I met a great bunch of people on these boards Adult/obpi/tbpi/Mommies... and gathered so much information on OBPI... just by comparing notes and silly habits with other adult/obpi I discovered lots of my QUIRK'S are due to "Erb's Palsy" or as I prefer to call it OBPI... since I am not a salad and this is a birth injury.... I really like to call it as I see it... I guess I can be a bit direct at time... I blame that on bpi too.... LOL....

I have three children... the youngest just turned 30 (ouch! I was only thirty yesterday) I have four grandchildren... I think my Journey with Erb's was fine but now my journey with OBPI is so much better. I feel more empowered because of this website and all the information shared here... I am no longer intimidated by medical professionals, who I know have little to no experience with OBPI nor do I allow anyone to tell me something that I know is not true about obpi/bpi in general. I know where to go to get information if I need it...in other words I get much better medical attention and I know how to ask for it based on the knowledge I have gained by coming to the message boards and asking questions and receiving so much support from everyone...

I know my injury is not rare and that I am no longer alone with it.

I feel that this injury has made me stronger... I lost many things with this injury... and I gained much more in many different ways.

I can't think of anything I would let beat me... I never used my arm as an excuse. I tried to ignore the fact that I was different and most of the time I could because I hide it well... compensation is natural for us.

I am strong, stubborn, and determined... and like TINA.... I can prattle... (like that word) I have always held true to my feelings that a few kinds words cost nothing and are worth the world to someone in need... I enjoy the ability, provided by this adult/obpi board and the General/Tbpi boards, to give support to those in need ... This community in general supports all those in need of support.

I would love to see the rest of the gang check in and the newcomers...post more... Ask questions... long ago I learned that there are no silly questions pertaining to bpi...
thanks to tbpi I learned why my arm was always sooooo cold....
thanks to Moms I learned about ROM... and therapy needs...
and thanks to adult/obpi Q&A lessons -- 101...LOL... I learned that I hold things in my hand not remember I have anything in my hand...I loose somethings and look all over for them... until I looked down and discover what I am looking for... I am not aware that a tissue or ten other things are in my hand...
All because I was disconnected... Sometimes I collect so much stuff there...LOL
I am the world's worst speller...that is bpi fault! no doubt in my mind any more... hmmm now can I go back and change my grades in English in school...LOL.

Adult/obpi.... this board was created for us to share our common experience with bpi... to learn from each other.... and thus make life better for all of us. Our combined experience's make up the necessary data for a long range study... something that has never been done on Erb's Palsy and would be a great contribution to this community.

Kath

Hi Tina, So we call it Prattle now instead of rambling on. Like you told me: You did not miss me cause you were not posting, I did not miss you caus I was not posting or lurking either. Glad we are both back. Glad Kath pickd up all the slack and held things together lol....

As you know I'm lobpi and 55 5/12 ugh. But as we get older posters I get younger. Can't type too good with a wrist fracture on the obpi side and doc says it isn't healing, I get to wear a bone stimulator ????? next week. Oh the joys of being alive. Wonder if SSD will take this in consideration if/when I get to see the judge. Hope so. I have not starved yet (no pounds lost since being without much of an income.) Thought that would be one of the benefits. LOL LOL

I'm also behing on my "other hobby" of genealogy. Have a got a bunch of emails to catch up on. I have to say that obpi's are much more patient than others.
Thanks for being there
Peace and Blessings

Oh yea, Tina you better make peace with the lightening gods pretty soon. LOL
Sharon

Sharon ~~

Nice to hear from you and sorry the wrist is not doing so well. I assume a bone stimulator is just as it sounds?? Is it not healing because it's your bpi wrist???? I've always wondered what would happen and how well I would heal if I broke one of mine??? Has anyone else ever broken a bpi arm/wrist/finger?

Well, take your of that wrist and yourself, and remember..........you and I are close enough to send smoke signals. So if you need anything let me know. And, WELCOME BACK !

Kath..........................Love Ya
T.

Hi

Miss Sharon and Tina...

I hate to play alone... no I have never broken a bone... but I think some others have...

Now let's see if the other kids on the board will jump in...
Maybe if I give a yell they can hear me... LOL...
PAT, JUDY, STEFF, KATRINA, STEVE, CHRIS, MICHAEL, STEVE L, NANCY.... and Erica are among the missing...

Last but not least... the present holder of the title "Oldest BPI baby" ...lol... John P.....

I think Steve and Michael moved away... LOL... they use to jump right in...

Have any of you had recent bone density tests?
I have had two... both say I have the bones of a young adult... don't know what that means ... just I have strong bones no signs of osteoprosis (spelling) darn that bpi... I would be a great speller if it were not for that.... LOL... thank God for spell check... but I do spell better when I type...

do you think we can have spell check ryan?????
us old obpi except for Nancy lobpi... can't spell...

Kath

Wow Kath-----------

There are THAT many MIA's ???

Maybe if we BOTH YELL? PAT-JUDY=STEFF=Katrina-Steve-Chris-Michael-SteveL-Nancy and ERRRRRRica

OK kids.come out and play.

Never had the test yet, even tho they keep saying I'm getting to THAT age??? (how dare they) Anyway, I'm sure my bones are good and strong.......I have Grannie Hillbilly blood

Spell check would be verrrry nice
T.

John P. here - at 63 3/12, the senior member of the adult OBPI group so far. Isn't someone else out there! Kathleen is trying hard to catch up but I'm afraid it's just not possible - not in the foreseeable future anyway. Still lurking and occasionally posting when I think I can add something to the discussion. I really haven't paid too much attention to my injury over the years. Too busy raising a family, working, etc. As I've said before, for me, my injury has been more of an inconvenience then a problem. All of our injuries are different and we compensate and adapt accordingly. Last winter, I experienced a new nagging pain in my shoulder (it's gone now) and I decided to surf the web for info about adult BPI experiences. A note from Nancy Birk led me to the forums and a whole new awareness of this injury. It's not surprising to find other adult victims but I'm surprised and disappointed that this injury still happens so frequently. Reading of parent's pain is difficult because I know the pain, anger, and sacrifices of my own parents. Tears come to my Mother's eyes when she is reminded of my injury (she turns 94 next month). However, I am encouraged by other posts such as Michelle-16's appointment next January and Brittney's enthusiasm for soccer (her ear-wiggling analogy was right on). Thanks to all for your insight.

Nice to meet you JohnP. Everyone needs a position and you seem to have the "senior" position at the moment. I have the sole rights to "MOST hated by electrical god's" ,even tho Judy seems to be closing in on that one.

I agree with your statement about not paying too much attention to the arm(s). I have always just accepted and moved on regarding my own. It wasn't until a few years ago that I was having pain and sought out this place myself. It has brought me much joy, more information then I ever could have imagined and lifetime friendships..............
Again, nice to meet you.

Tina and John...

Yes you can have the titles... John I am so happy that I can't catch up in age I am the youngest in my family and hated having to be the mature one here... LOL... I hope to keep trying to catch up for years to come...
Tina keep away from storms... Judy is trying to catch up... maybe one will eat Willy the snake or perhaps her Alligator... the one who lives in her yard...

I really just ignored my arm... never spoke about it... just moved on and tried everything... until I had no choice... I guess hurting both arms was a wake up call for me because I finally had to pay attention... to my aches and pains... and was happy to find out there were ways of taking care not to injure myself any more...
The information shared among adult/obpi really helped me to understand some of my little quirks...I thought I was getting old and that was why I forgot things were in my hand... so happy it was only bpi...LOL...

Now where are the rest of the kids... does anyone one want to arm wrestle? or should we play kick ball...

KathM

Ok guys, no arm wrestling for me and my co ordination isn't what it used to be, but hell nothing is like it used to be, I'll keep score even though I hate not being in the action and out in front.

I never paid much attention to my obpi arm until prob the last 10 to 12 years when it decided it did not want to work as well and itf started the aches and pains. Then the frustration of either no doc would address the situation (or did not know how to) or the fact "you have to live with it as there is nothing that can be done" None of which are acceptable answers. But then that may be the stubborness that a lot of obpi's learned early on. LOL

My last bone scan was the pits, worse than last years. osteoporsis is way in the red zone. I have never done anything half assed, so why start now ha ha ha.

I really believe that I have more of a problem dealing with all of my other medical problems than I do my obpi (except the pain) I live a very different life style now. I was always busy doing something or other (always staying out of trouble of course LOL ) and now that so many physical things can't be done I get so it's hard to handle. I like to think I still have my mental factualities but I do often wonder. Like a therapist told me not to long ago, You must focus on what you can still do. I do agree with that but at the same time, I wanted to tie one of his arms down to his side with limited movement just to see how he would deal with it.

Hey Tina, I noticed that the storm that just passed though our area did not have any lightening in it. Hope the winds didn't carry you off. LOL

Sharon