My sharing of the symposium…
AnonymousNovember 11, 2008 at 9:06 am
All I can say is what a great experience! I have been to many medical conferences in my past but this one had a different flavor with so many patients and family members at it. Everyone was willing to tell you their story and discuss any topic. The sharing was astounding. From my personal view, I realized how fortunate I am to be where I am today in my recovery and really what good care I have received and the family support I have. I felt the conference confirmed many of things that we on the forum do and believe.
For me the State dinner was very enjoyable as well as informative. I met folks from my state of course that I didn’t know existed, in fact one woman only lives about 5 miles from my house! Two of the participants had CIDP since childhood and had adjusted their lives but were doing well. Another had GBS 15 years ago and came for the first time. Another woman had GBS and ran the Detroit marathon last year! All of the stories touched you in some way. Either you could relate so much to what they were saying or you had such a respect for all their resiliency. At the State dinner, as someone said they raffled off a Rolex watch…..my ticket was one number off! Story of my life….day late, dollar short and now a number off! :p
There was a man there who wrote a book about GBS. His father had GBS but he changed the character and now its being made into a movie so he was looking for folks with GBS to talk in the documentary that would accompany the DVD. The name of the book was “Cherry Whip” His last name was Antman if you are interested I think its on Amazon although I didn’t check.
I took some notes during the sessions but Dawn has beat me to the punch! I thought it was fantastic to have the “Brain Tank” there from Neurology. They added much to the conference. They presented information in an informative but yet humorous way at times so it kept your attention. The physicians were very open to answering questions, they got mobbed after they would finish speaking.
Meeting some the forum members was another highlight. I was disappointed that there wasn’t something a little more organized so we could find each other. It was left up to us. I understood that we were going to have lunch together but there was no organized way to go about it. It was so exciting to find someone you “knew” I felt like I was on a scavenger hunt all weekend! That was something that surprised me too was that the forum wasn’t “advertised” as a way for patients/families to get support. I told a few people about it so we may be getting some new friends here!
I have a few pictures but I need my daughter to find the cable for the camera to download them…..I borrowed her camera. So as soon as I get them I will post the family pictures! I know that’s what some of you are waiting for!
So if you can, start saving your pennies as I felt the conference was well worth the time and money. I would like to attend in 2 years again.
AnonymousNovember 11, 2008 at 12:28 pm
Jim, we missed you, but you were where you needed to be. Thank God that you were able to return home to a familiar medical system rather than Carolyn getting really sick on the road to the symposium. I hope that she is improving each day. WithHope for a cure of these diseases
AnonymousNovember 11, 2008 at 4:49 pm
I hope to be able to go to the next one and can’t wait to meet many of you in here. Sounds like it was a very heart touching experience. I’m glad though that you all had a good time and enjoyed being there. I am online now trying to catch up and see what I missed! 😀 Hugs Jan
AnonymousNovember 11, 2008 at 6:14 pm
I’m right there with you Jan. I had such a wonderful time. I couldn’t believe that every single person I met was so compassionate and caring. It was a trip of a lifetime. I met so many wonderful people and hope that I will be able to keep in touch with each and everyone of them. I’m terrible about remembering names but I am trying so hard. Some of my pictures didn’t turn out very well due to the lighting so I may need to see if some of the others would be willing to share pictures. The experiences were great and I have already started a piggy bank specifically for the next symposium. Believe me guys it is well worth the travels.
Take care and enjoy all the info
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