It seems like there are enough people who are members or visit this site that we could drum up numerous support groups just by knowing where we all live. As example I live in Central Wasington State. The nearest support group for me is in Seattle…200 miles away. Wait it is no longer there. My next best bet is now CA or UT.
If the site had an area that listed members by state, city and first name, it might be possible to form more support groups that may be more readily accessible by our members. Someone we can talk to face to face etc. Once a group of 3-4 or more is formed we could then add them to the group section where the support groups are listed and information about them. Right now there are numerous ones in the U.K. But very few in the U.S. with one to a huge region if you are lucky. I would love to see 2 or more groups per state.
I tried to set one up in North Dakota but didn't get much response - 3 or 4 maybe?? One problem here in ND is that the numbers aren't that high and everyone would have to travel quite a distance. I do plan on talking to my neurologist when I see her next month to let her know I'd like to start a group - maybe I'll get more response there. I was hoping to include any facial pain patients, not just TN. I have the paperwork from TNA and I know I could handle the work - just need the members.
I had MVD 6 months ago and I'm really feeling good now. I'd like to help others who aren't. It would need to include a very large area though - ND, SD and probably eastern MT.
I have contacted everyone on here from ND, SD and also done the same on the TNA site. You can search members by City, State on this site using the advanced search on the members tab. Then I contacted each one directly. Like I said, I got a few responses but not as many as I'd like. Maybe with some responses from my neurologists contacts, I can get it going...
Agree, I tried here, offered to be the organizer but got no replies at all and I know here in Houston I am not the only one with TN. On line is great and so is this group, but would be nice to have that occasional in person support! I have also looked into caregiver support groups since I am more a nurse to hubby than anything, none close by. But thankful for on line support for sure!
Perhaps a moderator will view this and a page of members by state could be set. At least then we would have a specific list of who to mail and ask rather than giving a shout out. I am sure there are people that are members that don’t visit this site often but, may be interested in something local to them if asked.
As for me,getting out of the house at all was a huge chore when i was in pain.Going to a meeting to discuss pain,treatment,ect..with a group wouldn't have any attraction at all.On this site,you have not only unlimited numbers of members,but a database of questions and opinions and answers going back years.I'm not trying to discourage you from doing this.I'm just saying it wouldn't be something that would interest me and a couple of reasons that may explain the poor response you've had in the idea.When my TN was on i could barely talk to my wife,much less any number of people.Talking and smiling were huge triggers for me.
I was thinking that too Don. I know when it’s bad it’s BAD. But what better people to cancel on lol people that understood why you couldn’t be there. I really would love to meet with people regularly. I feel very alone stuck within my head and surrounded by people that don’t get it. They look at me and on the outside accept for my right eye that swells I look fine.