Just got the winter 09 news letter

    • Anonymous
      January 13, 2010 at 4:23 pm

      Dates for the next symposium and an article on flu shots, and the usual
      stuff.
      I don’t need to fly for the next symposium, its outside Phili. Yippee!
      Nov 5-7 valley forge.

    • Anonymous
      January 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

    • Anonymous
      January 14, 2010 at 11:59 am

      Is that the only symposium this year? if it is then we are going to try to go.

    • Anonymous
      January 14, 2010 at 1:00 pm

      What is this symposium?

    • Anonymous
      January 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.

    • Anonymous
      January 16, 2010 at 2:01 pm

      I’m holding out for them to come to Detroit, LOL.

      I’m assuming after Philly they will go out west again & work their way back east, so it may be a few years. But hey…I can be patient (sometimes!)

      Kelly

    • Anonymous
      January 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]

    • Anonymous
      January 17, 2010 at 7:19 pm

      From the Winter newsletter:
      Reversal
      Elaine Sparrow 9/23/09

      The 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 tube

      A 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 inside

      People 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 ear

      Emotions, so many emotions.

      The long road back had begun.

    • Anonymous
      January 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.