Wondering if anyone has ever attended one of the past symposiums. I was diagnosed with GBS in March of 2012 and still struggling with lingering effects from it. Would attending the symposium answer questions regarding handling fatigue, balance issues, pain?
I go to the gym 3 times a week and practice yoga regularly so I'm just wondering if it would be worth it and would I learn anything new attending the symposium. I'm sure it would be helpful to meet others struggling with these issues as right now I feel so alone. It's difficult having a disease nobody's heard of, right? lol
My mother went on my behalf in 2014 (I am living abroad and she happened to be in Florida). She is a nurse so is medically more in tune than some.
After the first night (informal gathering) she nearly left. She felt it wasn't very uplifting as some of the family members were representing their loved ones who had passed and rather than success stories and coping mechanisms, it was more stories of how people don't improve or recover.
She did stay the following days when the actual forum started and she was happy that she did so as she met many medical/GBS/CDP professionals who shared some really good input. She did ask many questions and learned some new things about the condition. She also met some really amazing people who recovered in full - which as we know is helpful to our own recovery (ie never give up!).
Her general feedback was that if you are in the area is a good forum to attend, but if you are going to spend money and time to travel there for the magic cure you may be better off consulting with local specialists instead.
maybe others have different perspectives, but this was hers!! Sounds like you are doing everything you can to continue your recovery. keep up the good work!
Thanks Jenn, your mom's review is very helpful. We will need to travel from Oregon to Texas, which is expensive, and have two other important conflicts that same weekend so we'll need to make a thoughtful decision.
Again I appreciate your honest opinion!
She told me that medically most of it would have been over my head! But she was able to meet some remarkable people with some great recovery stories.
As you continue to recover, maybe save this one and see if they come to Oregon next!
best of luck!
That was a good question I'm trying to get into support groups and get as much information as I can get. I'm from Washington, I have had GBS SINCE DEC 5 2012 I have all the struggles and effects you are having. My whole family and friends don't understand this. I wish I could get them Educated on this. I would like to learn more. I miss my old life. Thank you JennPicc for the feedback