Have your say ......

[Karen]

I would like to hear from you, as a member of Behind the Gray, what you think about this website. I only want very honest opinions from member’s. Whether, it’s good or bad, it will be taken onboard and all suggestions will be considered. You can either reply to this post or you can contact me personally via PM or email behindthegray@gmail.com if you would prefer your reply to remain anonymous.

Here are some questions that I would like you to consider. Please just say whether you agree or disagree, but feel free to add any additional comments and please be honest with your response. This is NOT about what you think I want to hear......but, your say....

(1) Do you think that members of Behind the Gray should play an active part in the medical forums of the BTG message boards and provide support when needed if they can?

(2) The Green Room forum was set up for members that participated in the support of others on the medical forums of this message board and not purely for social networking?

(3) The Green Room forum is also for those that are unable to find day-to-day support and need to find a friendly ear?

(4) Behind the Gray was set up, to support other SAH’ers /Stroke survivors and their carer’s?

(5) Behind the Gray is friendly?

(6) Do you feel intimated to post in the Green Room or have you ever felt excluded?

(7) Are you put off from joining in with the Social Meets? Yes/No

( Do you think that we’re striking the right balance? e.g. Over friendly, not friendly enough or not offering enough support?

(9) Any other comments?

Thank you, for taking part.

[MUTTI]

HI KAREN,

HERE IS MY RESPONSE TO YOUR QUESTION.

1. NOT SURE YET ON THIS ONE.

2. I FEEL THEY GO HAND IN HAND.

3. YES

4. KEEP UP THE EFFORT

5. TO A POINT. FOR ME I FIND MYSELF FEELING STILL SO FAR AWAY AND RIGHTFULLY SO. SEEING HOW I AM IN AMERICA.

6. YES AND EXCLUDED.

7. YES TOO FAR AWAY

8. ? IT CAN BE DIFFICULT TO GET TO KNOW SOMEONE ON-LINE

9. I FIND THAT THE CARE RECIEVED IN DIFFERENT PARTS OF THE WORLD CAN BE LIKE THE DIFFERENCES BETWEEN NIGHT AND DAY. THERE FORE WHAT YOUR SUGGESTIONS MIGHT NOT BE SO EASY TO TAKE. LIKE SEEING THE DOCTOR FOR ME THAT HASN'T ALWAYS BEEN SUCH A GREAT OUT COME.

HOPE THIS HELPS A BIT. EVELYN

[Karen]

Many thanks for your reply Evelyn, it's much appreciated .... I've noted your comments and I'll see if I can address the issues once I have everybody's feedback. I may come back to you with some further questions at a later date.

[Skippy]

Hi Karen

My repsonses to your questions.

(1) Do you think that members of Behind the Gray should play an active part in the medical forums of the BTG message boards and provide support when needed if they can? Definitely if you feel comfortable and able to do so, the whole point of the forum is to try and support each other where and when we can

(2) The Green Room forum was set up for members that participated in the support of others on the medical forums of this message board and not purely for social networking?Again, yes definitely - if you want to network for social reasons - use Facebook and the like.

(3) The Green Room forum is also for those that are unable to find day-to-day support and need to find a friendly ear?Yes, most certainly as this is what helped me get through the traumatic first months - and I'm sure that's how it helped others.

(4) Behind the Gray was set up, to support other SAH’ers /Stroke survivors and their carer’s?Again, yes - the green room is an added bonus so that we can keep in daily contact with each other to see how things are going generally and also to share the good times we have.

(5) Behind the Gray is friendly? Very, if it wasn't I doubt that it would be so popular.

(6) Do you feel intimated to post in the Green Room or have you ever felt excluded?Not intimidated but sometimes excluded when you feel that there is a click for certain groups of people who seem reluctant to include others

(7) Are you put off from joining in with the Social Meets? Yes/NoNo

( Do you think that we’re striking the right balance? e.g. Over friendly, not friendly enough or not offering enough support?Completely the right balance - very friendly, lots of support

(9) Any other comments?Not really thinking about it - we're all different and have different needs and abilities - just don't make any huge changes to the way you run things - you're both doing a sterling job and I will never be able to thank you enough or setting up BTG or Ketih for giving you much needed admin support - you're both ace.

Other than that I love BTG and it's saved my life and my sanity - I honestly don't know where I'd be without you guys

Hope this helps Karen

Love Sami xxx

[Karen]

Thanks Sami, your views are much appreciated and again, we'll try to start addressing some of the issues you have mentioned.

[Tina]

Hi Karen...here are my responses

(1) Do you think that members of Behind the Gray should play an active part in the medical forums of the BTG message boards and provide support when needed if they can?

I know i do if i can answer, sometimes i don't know, so don't reply, rather than give wrong info.

(2) The Green Room forum was set up for members that participated in the support of others on the medical forums of this message board and not purely for social networking?

Yes i agree, i found the green room very supportive in my early days and still do. I also like the fact we can see how we are all doing and keep in touch on a daily basis. Sharing good and bad times.

(3) The Green Room forum is also for those that are unable to find day-to-day support and need to find a friendly ear?

Yes i agree again....sometimes family and friends , even with the best will in the world do not understand how we feel and there is just not the support out there...well not in my area. So glad i found BTG...thank you

(4) Behind the Gray was set up, to support other SAH’ers /Stroke survivors and their carer’s?

Agree totally.....we are there for each other....survivors and carers.

(5) Behind the Gray is friendly?

BTG is very warm friendly and caring......BTG is a very important part of my recovery and life and always will be.

(6) Do you feel intimated to post in the Green Room or have you ever felt excluded?

Never intimidated, was scared when first posted, but everyone so friendly and no one judges you if you make mistakes.. I try and answer everyone and include everyone, 'you know who you are' comes to mind

(7) Are you put off from joining in with the Social Meets? Yes /NO

NO, have been to two and really enjoyed both.

( Do you think that we’re striking the right balance? e.g. Over friendly, not friendly enough or not offering enough support?

Yes, i think you have the perfect balance .....i just think BTG is amazing......all credit to you Karen

(9) Any other comments?

No other comments apart from....keep doing what you are doing.....a huge thank you to you Karen and Keith and Chris.......i do appreciate the hard work that goes on behind the scene, and all the time and effort you have to put in. Thank you from the bottom of my heart.......without BTG i know i would not be where i am today.......thank you xxxxxxxxxxxxx

Hope this helps,Love Tinaxx

[Karen]

Many thanks Tina, your feedback is much appreciated.

[Cal]

Hi Karen,

Here are my responses.

1) I believe if someone knows first hand the answers to the questions then yes, they should provide support.

2) and 3) I do not actively reply to the Green room forum but I do read it occasionally and have found that it does support the people that use it daily. Everyone seems to be involved in each others lives and that is a great thing.

4) Yes, I totally agree with this. BTG helped me as much as Jim as I am the carer. All the questions I have asked have been answered and hopefully the ones I could repond to helped someone as much as we have been helped.

5) Yes, very very friendly.

6) I have posted in the past and I would post in the future.

7) We would join if we were in the area.

I definately feel that you have the right balance.

9) Without your help and the help of everyone on this site I do not know what Jim and I would have done. Sure we would have made it through everything we went through but without knowing what to expect. I believe everyone here was a gift from God for us. Please keep up the good work Karen, you have helped so many people and I am sure will continue to do so.

Cal & Jim

Many XXXXXXX's

[Sasbo]

Hi Karen

Here are my responses to your questions. Hope it helps.

(1) Do you think that members of Behind the Gray should play an active part in the medical forums of the BTG message boards and provide support when needed if they can?

I think that members should play an active part in the medical forums by relating their own experiences if relevant and, as we all appreciate, support from other BTGers is a huge help and comfort because we've all been through a similar event. We should all remember, though, that everyone is different and their symptoms and reaction to the variety of things we have to go through will almost certainly differ.

(2) The Green Room forum was set up for members that participated in the support of others on the medical forums of this message board and not purely for social networking?

Absolutely agree that the support is the primary function of BTG and is of paramount importance. There are more and more social networking sites being set up, as well as the established ones such as Facebook and MySpace, which are there for general communication.

(3) The Green Room forum is also for those that are unable to find day-to-day support and need to find a friendly ear? Very true and, I believe, a very, very important part of the BTG. The Green Room has been such a support to me since I joined, particularly in the earlier days when support was the primary function of the Green Room. Sometimes, nowadays, it's quite time consuming to sift through the posts for relevant info.

(4) Behind the Gray was set up, to support other SAHers /Stroke survivors and their carers? That's what I've always believed and understood, and still do.

(5) Behind the Gray is friendly? Very friendly and this, to me, stems from the administrators. Karen and Keith, are always supportive, not just of website queries, but in every way with a friendly, willing and helpful manner. Nothing is too much trouble and this is echoed by other posters.

(6) Do you feel intimated to post in the Green Room or have you ever felt excluded? Don't feel intimidated but do, more latterly, sometimes feel excluded.

(7) Are you put off from joining in with the Social Meets? Yes/No. No and would thoroughly recommend them to everyone because when you get together it's just like meeting up with old friends that you've not seen for ages.

( Do you think that we’re striking the right balance? e.g. Over friendly, not friendly enough or not offering enough support? The balance is spot on with the right level of friendliness and as much support as required.

(9) Any other comments?

Only to echo what others have already written. This site is by far the best one for SAH survivors, carers and family members as it's an embodiment of what we've been through and how we're coping and learning to live with the residual of SAH. More often than not immediate family can't accept what an SAH has left their loved ones coping with so reading other people's daily experiences can help with that acceptance. BTG has been, and continues to be, a major influence and help with my recovery and the friends I've made on here (both those I've met in the flesh and those still only met through the ether) I hope and trust will be friends for life. BTG has ensured that we've shared such deep experiences that almost certainly can't be shared with others. I really can't thank you enough for setting up the site and continuing to run it so expertly and with such an innate knowledge of what's needed by us SAHers, and thanks to you, Keith and Chris (and not forgetting your families for supporting you guys) for the many hours, days and weeks work you put in to ensure its continued operation. From the bottom of my heart, thank you!

If there's anything else you'd like to ask, please do, and if there's ever anything I can do to help please let me know. I presume there are costs involved with running BTG, in fact I'm sure there are with web hosting etc. - how can we, as members, help with these costs? Fund raising activities, perhaps? We, Fiona and I, would really like to be able to give something back in any way possible.

Sarah

[tennissmithy]

Sarah,

I agree about the cost issue, I have had discussions with Karen about the cost and am at present trying to get my landlord of the local to help out. He said he would but that was after a couple of lagers so fingers crossed.

Love and hugs

Laura

xx

[Guest yasmin]

(1) Do you think that members of Behind the Gray should play an active part in the medical forums of the BTG message boards and provide support when needed if they can? yes without doubt the support and advise of other sufferers is such an important part of recovery.

(2) The Green Room forum was set up for members that participated in the support of others on the medical forums of this message board and not purely for social networking?it seems to work well as it is and helps those who are at home all day and lonely in need of support i've used it many times and people are always kind enough to give you an answer

(3) The Green Room forum is also for those that are unable to find day-to-day support and need to find a friendly ear?yes but its also amazing how a little 5 minute phone call come help people who are also lonely and feeling low and don't have access to the internet

(4) Behind the Gray was set up, to support other SAH’ers /Stroke survivors and their carer’s? without a doubt and it doe's just what it says on the label and more!

(5) Behind the Gray is friendly? very

(6) Do you feel intimated to post in the Green Room or have you ever felt excluded? never intimated maybe excluded but only because I don't have the time to bond with people and thats not their or the sites fault

(7) Are you put off from joining in with the Social Meets? Yes/No no only by distance because I don't travel well since my SAH

( Do you think that we’re striking the right balance? e.g. Over friendly, not friendly enough or not offering enough support?the support is there and its up to each individual how much they choose to take, everyone seems friendly enough to me, friendship is not one sided you get back as much as you put in.

(9) Any other comments? karen and those of you behind the scenes you do and have done a marvalous job you have helped so many people but never feel that this is something you have to do forever and if you ever need a break have one the people on this site love you enough to give you a little break now and again Karen, your a very special person we all know that so thank you for what you have done its worth more than money could ever buy. yasmin

xxxxx ps I like sarah would always be happy to help out with a bit of fundraising or donations just ask

[Karen]

Thanks Sarah, Laura and Yasmin for your replies ....

Spoke to Sarah in the chat room just after she posted her reply ...... I value both of your comments ..... as like the majority of the BTG members, you have consistently contributed towards the support of others.... both in the medical forums and in the Green Room...

At the minute, we're okay for funding .... but will review it, as and when we need to. Like everything at the minute, costs are increasing .... for web hosting etc. I managed to get a really good deal last year ... or should I say, Chris did, bless him, but to remain on the same package, bandwith etc, then next year, our costs will increase.

I kind of play it by ear really ... I think that if I thought too far ahead, then I wouldn't be here today ..... that's perhaps a plus, from having the SAH ..... I take each day as it comes.... good and bad

Thanks for your support and input...xx