yes that would be well worth it im sure! Obviously only location, location, location could be a problem ;) I live in Hampshire........
I would be up for meeting up been a difficult year but I am coming more to terms with things, however, dvla revoked my driving license a few weeks ago for some unknown reason so I am now fighting to get it reinstated and my GP, is hopeful of sorting it out soon, hence, in the short term I am struggling to get out and about. But count me in.
Carl
I also wish I could meet an AVM survivor face to face. Hope we both are able to do that someday.
Take care,
Debbie
I haven't been able to meet another AVM Survivor, but three other ladies who had brain injuries and myself would meet once a month in a town about 15 miles from here, for coffee and we just talked! Shared stories -- good and bad!! It was great and I looked forward to it -- but 1 of the ladies was killed in a car accident, one died from cancer, and one died from some other disease. I have tried to find other people to talk with, but it just didn't happen, then I came across this site. It has been a godsend!!
I am hoping to go to California to meet with the doctors who helped me become a Survivor!! Trying to go this winter -- still a maybe!!
Hey I got the awesome opportunity of meeting Grace from New Jersey dow the shore! It was awesome to meet such a wonderful women who gets its....so differnet than just typing....unfortunately haven't seen her since but hopin to over the holidays! So grateful for this site as can ou imagine what we would be witout this???!! xoxox Mare
Agreed! Let's do it!
After meeting her I would agree you should be jealous! ;-) Yeah she's an amazing, inspiring person. I hope you get to meet her one day. Thanks so much for the welcome as well Suzy! :-)
Hi Rich,
Surprisingly I have once-when I was somewhat incoherent, and I've been involved in live support groups that are geared toward stroke survivors - seems to be much more popular =)
I do understand that there's a HUGE difference and that it is relieving to know that someone else has been through what you have been...I'm even grateful for anyone who has had some kind of disability even if we don't share similar values, backgrounds-spiritual, economic, etc...warped, I know. It's almost like I cherish when someone else can understand; however I have been "blessed" by many who have sympathy and pity for me...that's another whole ball of wax. I thank Ben and team for starting this website...it is very helpful especially since AVM is not a highly understood term even.
Until education catches up,
Julie
Hello Rich,
I have met a few AVM survivors either through people I have met by networking or through a support group that Toronto Western has set up. I know exactly what you mean I don't know what I would do without my family but sometimes I would love to be able to talk to the people who have the exact feels and thoughts I do!
i live near bath, so far i have not driven long distance but my wife would drive and would also like to be involved, i think it is good for carers to catch up aswell, in my recovery i have signified the lack of help or advice for carers as a huge downfall in the system and feel it is important for family and loved ones to be included also. they need to share thoughts and experiences aswell.
once we get an idea of numbers and geographics perhaps we could move from there??
well that would be very useful im sure! And as the text says, useful to meet up. Hows about anyoe will ing to visit, post your town and how far away u can go......
Im from southampton, i think birmingham would be as far as i could go.....
hi carl, ok thats cool, im sure i could visit your location, thats not a problem.
I live in Gloucestershire, not far from you Phil.
As I have not had a bleed and no side effects I can travel
It may help me to decide what to do by meeting and taking to people.
I have never met another AVM survivor, and I have been a survivor for over 50 years.
hi beansy, quite afew have met in the us, so good luck!
ANyone in the uk, down south?
I always feel a little jealous, when I hear that they are meeting for AVM Survivors picnics together in California. How many AVM survivors do we have close to the Orlando area? I would like to get together with others and talk about what we all have in common. I actually received a invitation to a lecture on Reclaim my brain on 12/15/11. I RSVP and now hoping to meet other AVM, maybe?
I live in Sarasota, not too close to Orlando????
beans
Hey Beans, if u ever come this way, let me know, we could meet.
Ok, I will, but don't know how I would get there. I don't drive, but I have a nephew here who goes that way for work very often. That would be great.
I would love to join you all for the meet up! We live up north though, not far from Newcastle, but depending on where you decide to have it we may be able to get the train. I think it would be a fantastic thing to organise, I always feel a bit sad when I read about the meet ups they have in America that we don't have anything like that in the UK.