Arkansas Support Group - Inaugural meeting

[Migoi]

Just thought I would pop in and give a brief update on the inaugural meeting of the Arkansas Support Group that was held this last Saturday, June 13.

Starting a support group where there hasn't been one is a somewhat slow process. This is okay since I am more of a 'keep putting one foot in front of the other', slow steady, amble along type of guy.

I scheduled this first meeting in a town fairly centrally located to the state, since the assigned coverage was the entire state of Arkansas. I found a room in the local library there and scheduled the meeting. The ANA front office sent out the invitations, sent out reminders, and sent me bunches of support materials.

On Saturday morning, Cyrilee and I took the drive down, found the room..and had a wonderful meeting. If was a bit unfortunate that no one else was able to make it...but it was a pretty good meeting all the same. I did get several emails before the meeting of folks expressing interest in attending but having already made prior commitments for that day.

With this in mind, I have tentatively set aside the date of September 19 for the next meeting. I'm thinking I will have it somewhere toward the middle of the state but am not exactly sure where yet. If there is anyone here that has suggestions for a place...I'm open to those suggestions.

On the upside...since the next scheduled meeting is after the symposium, I'm sure to have new and exciting information from there to share..

..take care.. tim b

[Kaybo]

Tim~
I also liked what you said on Facebook about it when we asked how it went...something about it might be kind of good that not a lot of people showed up b/c that may mean that there are not a TON of people out there with an AN or need support.  Of course, you said it so much better!

K

[Migoi]

Kay, you said it just fine. And it's true, if it turns out that the slowness of the startup is due to folks coping with their AN related challenges just fine with no real NEED for a support group..that would be the best of all possible outcomes. Support groups should exist to fulfill a need in the communicty, not just exist for the sake of existing.

My only regrets with the whole thing is that I managed to schedule it on the same day that our local state park was doing a wonderful presentation on bats (with a world class bat researcher as guest speaker) and we had to rush back up here to be able to attend that (total pda schedule check fail on my part). Next time we intend to make the trip into a weekend away. Plus the restuarant we chose for lunch was fairly terrible, with the exception of the sopapillas for dessert, they were onolicious.

thanks for the support...

..take care... tim b

[leapyrtwins]

Tim -

thanks for the update on your meeting.  I was wondering just this morning how things went.

I suspect that others are a lot like me - very good intentions of attending a local meeting, but then other things get in the way.

There was a local meeting in my area on Sunday, and while I was hoping to get there, it just didn't happen.  Things are crazy at work - I'm still doing 2 1/2 jobs (long story), my father is having some medical issues and my mother was out of town for the weekend, and then there are my kids who are basically on their own from the time they get out of school in the afternoon until I manage to get home from work - and summer vacation starts Thursday afternoon 

It's just tough to juggle everything, and add that to the fact that the meeting was an hour away from me.

I do have to say though, that local meetings are very valuable and generally very informative and I hope to be able to attend some in my area in the very near future.

Hopefully your September meeting will bring participants.

Don't lose faith,

Jan   

[Migoi]

Jan, thanks for the support. It's that prioritizing that you speak of that encourages me. Everyone prioritizes what is happening in their lives. That folks prioritized other things over the support group meeting means that their AN challenges are not so overwhelming that it shoves living their lives into the background..an altogether good thing.

This is not to say that when one attends a support group meeting it is only because the AN challenges are overwhelming..but just that the support group meeting is on the same priority level as other regular activities.

My concern would only be that folks out there are in need of a support group but the perception is that the program I'm putting together wouldn't fulfill the needs they have... if there are folks out there with those thoughts...please let me know. I'm proceeding from my own best guess here and I have been know to have thoughts askance to those of other folks.

I'm not one that gets discouraged easily. A former colleague once told me that i was "annoyingly optimistic" and I remain so in this current situation.

..thanks for the support..

..take care... tim b

[cindyj]

Hey, Tim!  We just had our first meeting in Atlanta last month...I scheduled it, by mistake, on Memorial Day weekend   We had a good turnout, but know that we will get more for the next one.  Haven't scheduled it yet, but also shooting for September (I just need to remember to not have it on Labor Day!). 

The majority of our folks attending had already had treatment and were doing really quite well - was very encouraging to see.  There were a few folks waiting for treatment and they really seemed grateful to have an opportunity to meet with both pre-treatment and post-treatment patients.

So great that you are striving to get a group started in Arkansas - keep going - you should get more participation with each meeting, I would think.  I know everyone will appreciate your efforts!

Cindy

[Jim Scott]

Tim ~

Kudos to you for stepping up to the challenge of organizing a support group in your state and for remaining positive in the wake of what could have been a discouraging situation.  Your optimism and tenacity are valuable tools when attempting to do something as potentially daunting as organizing a support group for AN patients in light of the fact that acoustic neuromas are relatively rare and patients may be geographically scattered, busy or simply not interested in attending meetings, no matter how convenient the location. Your hope that AN patients in your state are doing so well that they don't really feel the need for a support group is admirable for it's positive approach to what could have been a disillusioning experience.  You're clearly the right person for the task you've taken on and I join many others in wishing you great success in the future.

Jim

[Keri]

Hi Tim,
While I knew that no one came, I didn't realize how far you travelled. You're and your wife are troopers to invest all that time and have such a good attitude about it. If I were in Arkansas, I certainly would have been there to meet you two! I think you'll make an excellent support group leader.
I have gone to one so far, a couple of days before my surgery. I think it was a bit too big. It just took to long to get through everyone's story, but that's not anyone's fault. I learned a lot and met some nice people. But at the end when I tried to talk to people, I couldn't understand what they were saying (big noisy room). I missed the next meeting (like Jan said ) fully intending to go. I wish some of them were on the forum so I could see them here, but only one that I know of is.
I hope it goes better the next time. In the interim, you're a great support to us here! (and funny too)!

Keri

[Migoi]

Thank you all for your kind words. Most of the time folks look at my particular brand of cheerful tenacity and simply decide that there is something seriously wrong with me.

I'm sure it will all work out..we just don't know what versionof it working out it will be yet, but then that's the whole fun of the journey, getting to discover the end result.

Cindy, thanks for the reminder about looking out for Labor Day in September. Just checked and it's on 9/7. I've tentatively scheduled the next meeting for Sept 19, so it should be good. Because my current job is renovating our log home and surrounding land, I kind of lose track of the days and especially when the holidays are...

Jim, I went into this knowing that participation could likely be minimal. ANA only lists about 33 members in the entire state (which works out to within 1 the number of folks that statistically should have an AN). Melanie, the ANA support group leader support person, said that on average only about 12 to 15 percent of the ANA members in an area ever go to a support group meeting. That put maximum expected participation just short of 5, minus me is 4, got "I'm interested, but bad timing" emails from 3 so my actual expectation was maybe one person would show up. So, one person not showing up wasn't really a big deal... it was a nice day for a drive and we had great sopapillas for dessert.

Keri, I like driving, well, I like moving around in general. Lots of interesting stuff out there and you can't bump into it if you're sitting still. Actually, I've driven a lot farther than that just to have lunch with a friend. Are you planning on going to the symposium in August? Yes, the 'lots of people in a room' thing is very difficult for me also. Recently we went to Cyrilee's HS reunion. Lots of folks talking excitedly about people and events I did not know (with one evening event in a bowling alley)...at the end of each day, I was totally wiped out. Until then I didn't realize how tiring it is to strain to hear and understand. Of course, giving up on the understanding and just replying or commenting based on your best guess about what is being said around you is fun too. If you say things that don't match the conversation but do so in the correct tone while sagely nodding your head...folks will think you are profound and it's their fault they don't see the connection.

Again, to all...thanks for the support and kind words. The line in my signature about who AN's affect is once again proving to be most true....

..take care... tim b