Sunday, September 25, 2016

GBS CIDP Symposium - Brief Recap

Had a blast during this GBS CIDP Symposium.
TLDR: I might be helping out with online social networking outreach and teaching liaisons/directors how to effectively use networks for outreach. I met someone in Round Rock that might be giving the Ketamine Therapy a try. If you are a GBS/CIDP peep and you have a chance to attend at least one Symposium, give it a shot!
The longer overview....
So many stories, so much research is being done and is help funded by the organization and it was great to see so many healthcare and nurses mixed into the crowd of those hit by and family members of those hit by GBS and CIDP.
Today I skipped a panel to grab a nap before the final event and overslept a little. When we got down there, most of the tables were full and we couldn't find a seat so we scarfed out food at one of the standing tables and grabbed drinks after and promptly became wall flowers. Many thanks to Jerry Jones from the Board of Directors for inviting us to sit with him at his table. I didn't realize it but I was then sitting next to and talking to Joel Steinberg, a member of the board of the organization and a member on the medical advisory board as well as being an MD, PhD, CWS, ACLS, and former GBS patient. We got to chatting and it looks like I might be able to help out a bit in giving tips and guidance on using social media as an outreach tool for both patients and medical professionals.
Sometimes over sleeping on a nap leads to nice situations...
Earlier in the symposium I chatted briefly with a few other of the regional directors and liasons about the use of social media as an outreach tool. Many of them had an interest in using it but when they tried before it fell a bit flat. I really hope to be able to host a webinar for the regional directors to give an overview on how different networks can be used in outreach and kind of the different tips and tricks to using each individual network. I haven't been quite as active in my hunt for new patients on networks lately because I have had my hands a bit full with other things, but if I could coordinate a team and help guide their approach, that would be a much more effective route and it doesn't leave one person trying to devote many hours to the approach if we can spread it out by region. So I hope to try and pull that together in the coming months.
I have been very hesitant to step into any kind of official role because I know me and I know I would pour a ton of energy into it and right now my plate is full and I just don't have that spare energy. But this gives me a chance to arm the current directors and liaisons with tools to help them in their roles so I can at least contribute a little in a less direct manner. Maybe in the future I can still consider a 'point of contact' or 'liaison' role but right now I am just have a full plate.
Also have had a chance to meet a fellow GBS peep from Round Rock which is pretty awesome and got to hear a great story from them. They had a surgery a little while back and they noticed that after the surgery they had a pretty strong uptick in how they felt from their residual nerve issues as well as felt like they had more energy. Was it in part from the anesthesia they had? That would follow the idea with my ketamine therapy... >:3 Gave them a copy of my ketamine zine and info about my pain doc and really hope they have a chance to give it a try. I really can't wait to see the results. If ketamine is something that can truly offer benefit and relief to GBS patients several years out struggling with pain and a plateau of progress, it means so much to be able to see more people find relief!!
Ketamine was something mentioned very briefly in the pain management presentation but it was more as a side note and didn't have any details listed with it other than its name. While passing my ketamine zine out to some of the presenters/directors/board members/doctors I came across one doctor that has used ketamine therapy for a patient, though he didn't seem much enthused about the potential of it. I think he said he recently referred someone to go in for treatment with it but I don't think he has had a chance to talk to the patient yet about how they felt after. I hope they recieve as much relief as I have so that it starts opening doors as an option for other GBS peeps further out from onset! (Though I keep saying GBS peeps, I really do think the level of exhaustion I felt could bring up issues for those with CIDP and those that are still newly recovering from GBS. I worry that the stamina/endurance issue would cause too much of a risk for relapse. But I'm not a doctor, I just know how it felt for me. :x)
There were some great panels covering the ZIKA virus and the GBS connection and it was really interesting to see the stats that have been pulled from the affected areas.
I definitely was to look up more information on the IGOS program that tracks GBS cases. Unfortunately, they need to start recording from onset so I can't contribute to the stats but I am interested in seeing what kinds of detail they are able to collect and just how globally spread out the research can be. I learned a lot about the issues of GBS in Bangladesh and would love to learn more. (ex: there are no respirators there, if a loved one's lungs go out, family members have to take turns pumping the air. your family and friends are literally breathing for you.)
While I might not be able to make it out to the next Symposium in 2 years, this was a great experience and I hope GBS/CIDP peeps have a chance to experience it at least once in their life.
It was overwhelming in a good way to see so many people turn out and I look forward to seeing the organization grow as outreach and research continues.
For now, time to crash and sift through all the information received over the past few days and come up with a potential outreach plan for social media that could be used. :x
The only thing that bothered me more than I expected during this symposium was how unsettling/hard it was to be in the large crowded rooms talking at individual tables. The noise from the crowd was still a bit overwhelming and I guess I haven't really been in that kind of situation much, to that degree, and between the sitting/standing up all day for the panels on Friday and most of Saturday I think both had me tensing up and kind of aggravating my neck and shoulders issues but I do have a 'top-off' session of Ketamine already scheduled for October 4th so hopefully that will help get me back on track. And a day or two of resting will help get me there too. :>

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