Just got the winter 09 news letter
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AnonymousJanuary 13, 2010 at 5:36 pm
Elaine,
My sister is in the hospital with CIDP. She has been completely paralyzed for a month. Unable to speak. Hooked up to feeding tubes, catheters, vents and trachs. Only 30 years old.Your poem hit the nal on the head. I could see where you were. I was in the room with you. I heard the noises and saw what you saw.
Thank you so much for giving my sister the voice that she doesn’t have right now.
If anyone hasn’t read this, you must.
Jenny
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AnonymousJanuary 14, 2010 at 1:35 pm
Every two years the Foundation hosts a very large symposium.
There may be smaller gatherings about the country in different sectors but
this one is the Big Daddy of meetings.What occurs at this symposium is a large facility is selected that can handle alot of GBS/CIDP patients, family, caregivers, doctors, etc.
It turn out to be like 2-3 days of mini workshops, discussion of topics on the disease, current treatment regimes, what is currently being done to develop
new drugs as well as use of orphan drugs.you can learn alot about the conditions involved, family issues, mental and physical adjustment and a whole wealth of information and stuff like that.
They select the top Neuromuscular doctors from the Big Hospitals. like
Hospital of the Univ of PA, Johns Hopkins, Mayo and all over the country and
even other countries. these doctors speak periodically throughout the day on scheduled times and you can sign up and go from topic to topic. whatever interests you.
Last symposium was in Chicago at a beautiful hotel resort. they offer discounted room rates and lots of help for the disabled. My wife and I went and enjoyed the experience very much. She learned alot and understand more than if she never went.I highly recommend it if the condition is new to you. It is also good for well versed people, Some very good questions are brought up and you get live feedback in some open forum situations.
There will be alot of talk about it once it gets nearer.–tim–OH also if you do a search on this site, alot of folks posted pictures so you may be able to see what the last one looks like.
There were alot of topic threads started from after it as well. -
AnonymousJanuary 16, 2010 at 8:11 pm
I can’t find the poem. Is there a link to it?
[QUOTE=wifeofthegreat1]Elaine,
My sister is in the hospital with CIDP. She has been completely paralyzed for a month. Unable to speak. Hooked up to feeding tubes, catheters, vents and trachs. Only 30 years old.Your poem hit the nal on the head. I could see where you were. I was in the room with you. I heard the noises and saw what you saw.
Thank you so much for giving my sister the voice that she doesn’t have right now.
If anyone hasn’t read this, you must.
Jenny[/QUOTE]
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AnonymousJanuary 17, 2010 at 7:19 pm
From the Winter newsletter:
Reversal
Elaine Sparrow 9/23/09The acrid smell of alcohol
burned her sensitive nose.Grey-green walls and floor to ceiling
windows
with automatic blinds that closed
against the bright sunshine
casting shadows of machines, desks,
chairs, beds and a tubeA breathing tube
cycling on and off
breathing in, breathing out
keeping a young girl alive.White coats and green scrubs
“Martians working from outside the
spaceship”, she thought.“Where am I”?
A young girl, 19, paralyzed.
Smelling, hearing
unable to move.Tears on my face
trapped insidePeople on the outside
poking and prodding
working to keep me alive.Stuck, trapped in this room
the tube room
my life support.Voices described my condition,
staff dressed in white
caring for my needs.Eyes not seeing.
Mouth not speaking.
Skin not feeling.Ears hearing, mind fearing,
I left
All went black.
In fear I left.Nutrients dripping into my veins
flowing through my body.I waited.
In the unknown and
unknowable darkness
I waited alone for this unnamed illness
to reverse its hold on my body.I waited.
For my body to accept itself.
To own itself once more.And then one day the sun came out ~
My finger moved
I wiggled my earEmotions, so many emotions.
The long road back had begun.
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AnonymousJanuary 18, 2010 at 12:30 am
Pennsylvania? When will it be in Minneapolis? I guess I missed th boat when it was in Chicago… Why is it ALWAYS on the deer opening here in MN? That is the biggest day of the entire year for all of the men in my family. Oh well, we do have two meetings in the Twin Cities every year & I have made it to one in almost 8 years. Dr. Parry always speaks at the spring meeting & it was so good to see the man who saved my life. He autographed his book for me & I purposely wrote out a check to show him my handwriting; he had once told me I would never get the use of my hands back.
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