Very worth the time needed!

11-26-09
~`~

http://news.bbc.co.uk/2/hi/uk_news/magazine/8378262.stm
"How do people cope with 'locked-in' syndrome?
"Understanding has been helped by the film the Diving Bell and the Butterfly"

Okay!!!! good visit!!!! now - - -

~`~
11-24-09

OKay! more about -1) "needs assesment"
It may not be necessary that each of us needs a new designated computor. Someone else cann determinr that. I just know one must be by the bed - used by med pros, officials, care team, patient from beginning to the end. I Can have no doubt because of my need of one way back when - and - now.

It could cut cost and pain if used from the beginning. It could facilitate healing greatly.

Still wondering about the why this is so important now! World changes???

2) "benefits analysis"

Nevermind anything else. From the begining being online has been like living unseen in all of the libraries in the world. How could I want anything else?!!! It's a dream. What else matters in the - - my world?

Well it could be a bit better. Even if not, I'll manage. I can't use the local library audio books. Don't quite ubderstand the methods yet. So I'll manage with the Library of Congress tapes. And listen to other stuff here.

How does being online help me? Here I can talk with anyone. I am also more fluent live now, but not as comfortable. I've become less wordy. :) I like that. :)

I think also, that I listen better. That carries over into reading posts, too. Just better communication over all contacts.

Being online is being alive for me. I can read, knit, crochet if not allowed to communicate. It means there is no point in trying to be a human. I do VofW hats and neck pockets from the yarn dumped here. I try to keep one of each going every day - - - - even if I'm studying, surfing.

When I first came to the nursing home - games on line was nearly all they knew of. That's changed a little. The speech therapist may have made that change. Some of the games are really good brain builders.

Has my commuication changed? Yes. Most definitly. Listening, speaking are still difficult. Ok, - if that is all I can do. Most of the time.

I wish more of the caregivers had better training. I wish I could tape some moutha shut for a shift --- at times. They seem to have a need to hurt, - not help!!

I think a computor person could help nearly all the injured/family to communicate better giving/taking. I think all must learn as able. I think one, computor, must be online at bed side from the beginning. No memory can be trusted to hold all that is needed.

I most definitly talk better, more, and fluently now, than before having one at bedside. I die more quickly if prevented from being online in the libraries.

Almost enough for right now. Thanks so very much, Naomi. It helps me to be helping another. Please ask, use and ask for more. I'll do the best I am able. Someone will fix - if I go capluy....:)

Can't proof now. will give as is? ok?
lovin hugs :)gwenith

was interrupted by younger daughter and new son in law. Greatest afternoon!!! So only a little mmore. :)
~`~

So I think it is most important that communication be facilitated as needed. Lots of good reading about how to do it. And we can always share some more.
What ever is close and handy makes a good start.
Don't forget any means of commuication including visual arts, music, touch, sign.
An opportunity for all ! ? ! ! ! ! !
This machine is most NECESSARY.

Partly, I think, because the population density and work place needs are more adjustable. We may become more able to see and share the whole world. Fun! What wonderful fun life to live!!! How marvelous that we now can talk with folks anyhere. I can be an example.

Dead. My life died within two years of surviving the brain surgery. 20 years later, here I sit with all of the worlds open to me. I just need to reach and grab!

At first, 1989 - 99, I tried to be quiet, invisable. But there was less of me and less of the world each day. So I walked away. The first three days, I walked about 30 miles down to the next little town. Wrecked my cart, took$10.00 donation. Slept, showered, rode 40 miles to a junction. Day by day I got closer to the state line.

Rented a basement room for a year. Got better room above ground. Disagreed with library. Got a machine and on line.

Ok for a while. Stroked out again. Had to get closer to family caregiving. Tried but couldn't. Ended up here in the bottom (of four) nursing homes in Casper, Wyo. If I got here 12-94, I've been here nearly 5 years. After the first year out in the heat, I got this room where I can see the mountain. I got mighty sick and then better.

On line again courtesy of another inmate, I caught up with others, and the EC@ folks. This "health care" business is slow. It's changed a good bit since I didn't die. :) And I'm anxious to see what more can happen here. Keep eyes open. :)

Needs! a bedside computor. For all - around contact with tbihome. Family, friends, caregivers.
1. for online records.
2. Room traffic record.
3. Commuication, contacts.
4. Search for good info re new body/brain.
5. Practice brain games.
6. Record experience - - - -

Commuication skills will change - no matter what. Speaking with folks you may never see! Learning! Laughing!

How long do I want to live on line? For as long as - - -

more soon :)gwenithugs

some more aser for Naomi. More soon.

  11/22/2009 13:32:07
~``~
Thanks ((((Naomi)))) !!! Wonder if I can ever repay - what you have done here --- just for me.
 
Wow~! It _is_ good to have some work to do Thanks. Will do the best I can. Thank You.

I have from you, Auel's_"Mammoth Hunters"_ and _"Plains of Passge"_. If I get the complete set - - -
I'll feel richer than any other. However, if others haven't had the chnce to read them yet - -. I most need
the rest of the story. That requires I stay well. She's 3 years older than I, and much more active. :).
I'm wishing her well and happy for a long time.

I like your call re "Follow. . . " It's great for me too. Helps tell our story. I'm hoping to learn more of you and your story soon. For now, all goes well - just explainning. It keeps me wondering - What's next?
~``~
Now then, more of the story.
I had my first look inside a nursing home December, 2004. I soon saw that my ignorance was kinder than reality. I tried to go with their ways. Things got worse and worser.

I soon saw that my igorance was good. I tried to go their ways. Things got worse. - and worser.

So I sat down in my room to wait. Got sicker. Got sent to the back corner to die. I cooled the room. Let the doc work, ejoyed a dozen room mates. All but one got better and enjoys. Maybe - the one enjoys too. We have no way to know yet. :)

I continue to cause as may changes as I can. This is consideed the least of the four nursing homes here. I've no knowledge of the others. I begin to say ok as folks get better with better training etc..

Lots of folks chaging. Here and everywhere. I like. :)

We are all getting ready to change as the world forces us to do. I hope it gets easier for all. I hope what we are doing makes life more wonder filled for many.

Do you suppose that we are being forced to learn more about our brains for future needs? It's world wide! It's the leastest to the mostest? WHy? There are usually good reasons. Wish I could remember that scifi author. Wy did!!! Seenher larest post here.
Thanks much. :) (( ))

You and I (I hope) will make a big difference for many who are living this experience. I hope we set an example for others to build on anywhere.

Computors are a certain necessity. For communication, learning, - - - . For all your reasons and more. I want the primary caregivers - family or friend to be met with one of those care filled tote sacks including the bedside computor for medical records, room traffic, brain care, building, pleasure and communication like ours.

So - I'm hoping that you have notes to share. - about all of the tools and practices which you have explored.
There's more than one way to be sure we each have a machine to use.
  ~`~

nuff for now :)gwenith hugs

HI! Hello All!
So glad to be back! I'm not paying attention so very good!!

Thanks (((Wy))) Those books are good for this brain healing road. Hope all can get copies. Even before my own upfront and personl experiece, they made good reading and thinking.

Which causes this Question. Why now? Why so many brain injuries, diseases, differeces? Why are we learning so much more now? We've had the injuries since the beginning. Why do we need to know so much more now?

Glad Naomi. Hope you two can enjoy each other lots. I've more written in answer to your request. Not able to put it here - - yet - - - .!!:(

Pat!!! Glad you are ok again. It's horrid to be "shut up"!!!
I'll go back to the wilds when I leave here. Thank you unended for sharing the site. It helps a big lot.
love always, :)gwenith hugs

greetigs all!!! Pat ain't it he- ll to be shut up?
Me too!!! Not sure wht happened. Trying to catch up

And stay on line!!!
Back soon as - - -

hiya Gwen,just got my computer back it crashed, good to see ya

~`~
Good morning All!!
I'm ready to start. Doing coffee and news since 5:30am.

I Will try for more info on how important a computor is to me.
Actually - I'm dead without one.

I am not good at "touch" relationships now. My responses are too hard to do "on time".

More later. Thanks. :)gwenithugs

Glad to see you found your way to www.tbihome.org (((Gwenith))). I FINALLY was approved for membership there, tried posting a note that you were having computer problems but it didn't get posted.


I've been trying to write Wileen on my cellphone with possible passwords and tricks to help fix the old computer, but my phone keeps messing up. So I'm logged on now and am finally going to get that email out!

I hope you're feeling better dear, I'll check back soon.
Love, Naomi

Ann McCaffrey



Brain & Brawn Ship Series
(also with Margaret Ball, Mercedes Lackey, S.M. Stirling, and Jody Lynn Nye)
The Ship Who Sang , Walker 1969
Partnership , with Margaret Ball, Baen (Reissue) 1992
The Ship Who Searched , with Mercedes Lackey, Baen (Reissue) 1992
The City Who Fought , with S.M. Stirling, Baen 1993
The Ship Who Won , with Jody Lynn Nye, Baen 1994
The Ship Avenged , with S.M. Stirling, Baen 1997

Brain and Brawn Compilations
Brain Ships , with Mercedes Lackey and Margaret Ball, Baen 2003
The Ship Who Saved the Worlds , with Jody Lynn Nye, Baen 2003
The City and the Ship , with S.M. Stirling, Baen 2004

Just a checkin in needs assessment note. (pardon please sp/grammar)

Any BI needs a memory --- by pen/paper or companion.
Epecially if great damage or ??? .
I think playing the brain improvment games should be medical necessity.
I think doc notes and med records can be accessed. And commented about. It offers another window of give/take info.
Provides means to stay interested in living - surfing -

A question. What if we are experiencing so many different brain damages as means of preperation for some experience? Space travel? Wish to recall the writer and her books - _( the Ship that Sings)_ ? not sure of title.?

best, :)gwenithhugs :)

Just a little thinking.
Without going back to the beginning of this thread I got my first computor early in the year - like Jan or Feb.. Because I had no library books.

After a bit of exploring I found ecfans.com That stopped me a bit. After a while, I found enough intestional fortitude to begin posting at the Auelboard.

After a bit, I began to share what I was learning about myself and others. I began to share my healing and learnig there. Did a fair to good job. But lost my chace to speak there. only rarely now!!!

enuff now! :)gwenithugs

Hi you!! Naomi! Hoping you are as well as you sound in print on line!!!

Just letting you know that I will try to do a daily word here for now. - in response to your requests.
Will appreciate any and all of your, or anyone's, thoughts to help guide where I go with it.

All for now. Thanks much. tbihome here I come hoping to sign in correctly!!!
Hugs. :)gwenith

Hi (((Gwenith))) Glad to see you here. Very sorry to hear your laptop is being cantankerous. I got an e-mail from Wileen and am goi8ng to try to help her get the one I sent you fixed.


In the meantime, it would be good if you could check in at the www.tbihome.org main discussion board. Your fans are calling for you and are a bit worried.


I do have more Jean Auel books here but I think they're duplicates of the ones I already sent. Would you like to have them?


About the "Follow Your Bliss" meaning for me. The quote from Joseph Campbell is "Follow your bliss and doors will open where there were none before." So for me it means being able to have the tools about you that help you identify what you're passionate about, what you really enjoy doing - and maybe are unable to do right now due to BI or needing to live in an assisted care facility, or being isolated in your own home.


I think an important step in healing offenses to the brain (injuries, strokes, disease or toxic event) is being able to learn about your condition and finding others that will be supportive and safe as your world begins to make a bit more sense.

So, first goal in my mind, is getting computers out to people with BI and their caregivers who need and/or want them and pointing them in the direction of communities where people dealing with the same things can help teach, offer support and be an understanding source of advice, etc.

The computer also provides the tool to open the door to the World Wide Web where a previously isolated survivor or caregiver can connect with other people that may have drolpped out of their lives, hobbies they've missed, allow them the chance to search for that idea or interest that really brings them joy. Maybe it's teaching others. Researching medical advances. Writing biographies. Helping change the laws and policies that impact your family now. Reading, gaming, creating, learning anything you can imagine, taking a cyber-tour to the South of France, or taking the train ride across Europe.


A computer, unlike anything else in a disabled persons world, opens doors into the minds and lives of others. Allows you to discover the things in life that excite and motivate.

My daughter's dream was to act. Years after her brain injury I encouraged her to try out for a small part in a local play. She did, she got a few rejections, but then she got some parts - and she was ECSTATIC! She began checking upcoming plays, movies, community events, etc. Once she took the first step to follow the dreams she'd always had - it was incredible how many connections she made, the referrals she got, awards, etc. She had risked fallowing her bliss - and as predicted - doors opened where we never knew them to exist before.


My dear friend Gwenith here has so much to offer - her insights, her experiences, her judgements, love and caring and leadership by example.


I would love to see her write about the things she's done and learned in her life - if that's what she wants to do. She's a natural teacher who possesses the best quality I know - a never-ending hunger to learn more. A curiousity that keeps her mind ever-expanding.


A part of my bliss was to find a way to begin accumulating old laptops and making them usable for people like my daughter and Gwenith. This is a part of my life where I am limited in what I can do, so giving this gift to Gwenith was also a gift to myself to see her appreciation and that she was able to go further and faster than before.


So that's what the "Follow Your Bliss" tag means to me. It means continuing to be able to get working laptops that can be personalized and tailored to the initial needs of those dealing with Brain Injury or Disease so the vast wealth of information they have to share with the medical field and society in general is made a possibility.


Darling Gwenith,

what I was thinking I would like you to try to do as a member of this team is to try to write about how quality of life can improve if one has access to a personal computer and the internet. Write that part of a

1) "needs assessment" (do you need it? To begin with? For just awhile? Does it matter if connectivity is continuous and reliable? How long do you think you'll want to have a computer of your own?) try to answer for youself and if you like, as you think it may apply to others

2) "benefits analysis" (how does it help you? has your life changed having your own computer? Has it had an impact on your health? On your relationships with others? Have communication skills improved or declined since getting the computer?) and again, answer for yourself and if you can, as you think it may apply to others

Those are the questions that first come to mind if we want to try to get funding to get more and better computers more often, and people who can commit to getting them set up for shipping.

My darlin ((Gwenith)) there's more you could do if you like, or less if you're not up to it.

Like, you wanna be "Vice President of Design" who picks out the initial programs that each computer should be sent out with. Or, would you like to have people who are new to the BI world come here to get some ideas about the computers and what they can and can't do, etc? There are so many possibilities.


You please be healthy, or at least be working at getting that way. You're my inspiration, friend, and more.

Love n hugs, Naomik

Hi Folks, Plese help by posting and levig a address!
I'm usig an older laptop of my daughters supply.
Don't kow what axed my gift from Naomi/Pat/?/?.
Last Moday morning - thnks for caring.
Will try to keep up with you here.

Hugs and muchlove, :)gwenith