Asked to head a BA support group

[Jellybean2]

I have been asked by my neurosurgeon to head a brain aneurysm, AVM and stroke survivors support group. I am honored to help anyone in need as I survived a ruptured basilar artery aneurysm 1 1/2 years ago. Does anyone have any suggestions for me on how to start off the group or ideas for discussions?

[cat3]

Where will the group be based JB ; will it be a physical gathering in a designated place or an online support group ?

I think the main purpose of support groups should be to allow members to talk freely about whatever they need to offload, either about the 'event' itself or any of the countless frustrating/worrying issues resulting from it.

Presumably the group will be publicised at the hospital where you were treated, perhaps on a bulletin board ............. and interested people will be invited to phone you to register their interest ?

A lot of guesswork on my part, so I'd be interested to hear what you actually have in mind so far. xx

[Jellybean2 in reply to cat3]

The group is not online it will be a once a month physical support group. The foundation will supply the funds to advertise and get the word out. I'm just nervous in what to begin with. The whole manual states not to share our own personal stories for 3 sessions. To me, others need an inspiration not a mystery. No one is allowed to speak of themselves for too long. We are instructed to cut them short. I am not comfortable with that because everyone deals with such a tragedy In different ways.

[cat3 in reply to Jellybean2]

I believe honesty is the simplest solution. Maybe some general references to the fact that you were treated for an aneurism 18 months ago, but that your own story needs to remain on a back burner for the time being.

Surely that small amount of knowledge would give a group of new members ( all strangers and a bit apprehensive ) a sense of connection, and put them immediately at ease.

And if you explain from the outset that you've been given clear instructions to follow, on the basic format/structure of your meetings, it should save any embarrassment if anyone needs to be interrupted. e.g ........'and It would be helpful if we could all avoid too much detail initially, so that everyone has an equal chance to join in'.

Opening with an invitation for personal introductions of names and types of brain issues can be a handy ice-breaker. And 'post-it-notes' for everyone to write their names on & wear can be extremely helpful !

I can understand how this might be nerve wracking on the first session, but I'm betting you'll handle it perfectly well just by playing it by ear. Good luck JB ; let us know how it goes. Cat xx

[Hidden]

Hi JB Congrats on being asked. If it's a physical support group rather than online, where & when would the meetings/sessions be held? Are you getting any support to set it up and run it, where would the funds come from for such things like newsletters, advice/information sheets, refreshments etc. These are all hypothetical questions and most may not apply if it's online but you'd still need an admin team i would suggest. I'm only raising these questions as i have a friend who runs both a physical and online stroke support group and it can take a lot of work. Rachel x

[NightBird]

Congratulations! I think Cat's right and people should be able to bring their own current issues. But it's always useful to have some prompts if people are hesitant, or to fill dead time at the end. I'd keep them simple. How's work going? What's been happening in your family this week(month/whatever)? What positive things can you say about the past week? And what do you still need to learn or build on?

Lia

[NightBird in reply to NightBird]

(The work one might not be appropriate if most of them aren't working. Ask them about themselves first, and tailor questions to the group.)

[randomphantoms]

Hi Jellybean

That's wonderful.

Can you ask the neurosurgeon what he/she has in mind?

It might help you narrow down the options. My guess is that you would probably be looking at a physical group.

We, in the forum, are the lucky ones who can access this wonderful virtual support group. There are many who cannot.

If you have the energy to trawl through the posts on the forum there are many recurring themes and tips on how to deal with the issues. Fatigue, noise emotional meltdown are a few.

Contact Headway and have a chat. I'm sure that they will have ideas for you.

Love n hugs

Xoxo

[Hidden]

Hi Jellybean, what a good idea. I think one of the main problems is to let people know about your group. You need notices in doctors' surgeries, health centres, etc. Many people find it hard to find out information. Maybe a note in your parish magazine, free paper, etc.

[GrandmaM]

There was a very good article in the Dec/Jan 2016 issue of Neurology Now magazine about support groups.

journals.lww.com/neurologyn...

[EVC70]

I've been asked by Kaleidoscope plus group that his by me to start a group as well.

[lcd8]

Where are these groups please and is there any plan to roll out the idea of a support group if it proves successful? I would find a support group useful but whether I could attend would depend on how near me the meetings were and when.