AnonymousMay 1, 2007 at 12:38 am
I live in Annandale, PM me. If nothing else we can ‘talk’ out those bad days. I do think there is some sort of Neuropathy Association that meets monthly at Farifax Hospital, but it’s at nite and while I can still drive I won’t do so at night. You are not at alone, and here is a good place to be.
AnonymousMay 1, 2007 at 12:42 am
I live in Annandale, PM me. If nothing else we can ‘talk’ out those bad days. I do think there is some sort of Neuropathy Association that meets monthly at Farifax Hospital, but it’s at nite and while I can still drive I won’t do so at night. You are not at alone, and here is a good place to be. I see that there is a chapter in Fairfax for GBSFI as well.
AnonymousMay 1, 2007 at 2:34 pm
Cathy and homeagain,
I am trying to organize a Chapter meeting in D.C or around Tysons in June. At the chapter meeting one of the things I want to discuss is the possiblity of having a regular “coffee morning/evening” – I would say every 4 to 6 weeks or so. I feel that this would be a wonderful place to sit down in an informal setting and just have a chat with other patients and/or their families. Please could you both pm me with your details and I can let you know exactly when the meeting will be. I have also been in contact with a number of people in our area who I think would love to meet before the official Chapter meeting in June.
AnonymousMay 1, 2007 at 3:04 pm
Ali and homeagain,
I hope we can get something going. I’ve been trying for the past 5 or 6 years — it would be nice to get together with others in this area. Evenings are better for me – I still have to work – I work in Vienna just around the corner from Tysons. Maybe late afternoon would work — I’m off at 4.
There’s a Chili’s around the corner from me. 🙂
AnonymousMay 1, 2007 at 9:40 pm
[FONT=Arial]Here is my suggestion ….[/FONT]
[FONT=Arial]How about we meet on a Saturday or Sunday? Mornings or evenings work for me, but It may very well turn out that the weekends work best for most. Would you gals like to meet before the Chapter meeting? I have been contacted by a few patients and will let them know about an informal meeting for coffee/food if you are both up for that. [/FONT]
[FONT=Arial]I have been the liaison for N.VA and D.C for about 5 months now and have been working very hard to try and get a meeting together, and finally it seems as though it may take off. I am very passionate about getting patients and or families together. I have spent hours speaking to patients over the phone and I feel there is such a great need out there. After 21 years, only now am I beginning to realize the great emotional / Psychological problems out there for people who suffer from residuals of GBS on a long term bases, and CIDP.[/FONT]
[FONT=Times New Roman][SIZE=3][/SIZE][/FONT]
[FONT=Arial]Mary Kelly joined me as a co liaison earlier this year, and having spoken with her a number of times, I am positive that we have the vision and ability to build a strong network for patients and their families. I think it would be wonderful if next year, during May, we have a Miracle Mile walk-a-thon to raise money for the foundation. I very much think that this first year is a learning curve for us, and by the end of this year we shall hopefully be in full swing.[/FONT]
[FONT=Arial]Lets Roll Northern VA and D.C. we have some awsome days ahead of us![/FONT]
AnonymousMay 1, 2007 at 10:55 pm
daytimes, and not during rush hours, please…I can drive to Tysons, and probably give a person a ride from point B to C, providing they get to my point A… Thing is, well, you know, once you over-do, you have to do something else…even if it’s nothing?
Pm’s coming your way w/suggestions of places to ‘meet’..WHO needs structure? Face to face contact and actually meeting others who are paddling and bailing similar boats is enuf for me to start…Then, later, maybe we can get more ‘structured’ , as others. First tho, little steps. Great Idea!
AnonymousMay 2, 2007 at 6:44 pm
Hi fellow Northern Virginians,
Another Annandale GBS person checking in. I’m interested in getting together too.
Weekdays between am and pm rush hours, Sundays, and sometimes on Saturday late afternoons (3 pm or later), are all good for me. Tysons is a good location for me too – I don’t go into DC anymore.
Ali, please let me know if I can help in any way.
AnonymousMay 2, 2007 at 10:22 pm
sort of sorted out? Weekends, after 2-4 pm and all prefer Tysons? Now we have to zero in…
I do know that Inova Fairfax Hosp. has some sort of PN meetings at their meetings centers, but if they are on Hospital premises or at their alternative site I don’t know…All they offer on their web-site is a phone number. I recall that the times of their meetings were on a week-end evening…and since I don’t do nites…that all was out FOR ME… So, where? Any ideas Where? That is key to us even landing in a restaurant or any place, even a coffee-house – should we all wear some outlandish color [not pink, but something to ‘identify US as US’? Of course the first few times informally are easy, for anywhere, but, after that we’d probably need a church or firehouse or something…BUT…let’s just get together first! Then worry about the details! I am FOR IT! Even If we don’t get ‘something’ going, it’s really nice to see and meet people who are in our leaky boat, or ones very similar! Good thoughts till later?
AnonymousMay 2, 2007 at 10:28 pm
[B]SuzyQ[/B], thank you for the offer! You have offered in the past, and I really do appreciate it. I think these first 5 months have been a huge learning curve for me, and hopefully, as i said before, the teething problems will have been sorted out by later this year.
[B]Cathyb[/B], There is no date set yet, unfortunately, and I hope to have the date set by Friday, letters and emails will then go out at the beginning of next week. My thinking is that the meeting will be held around mid June on a Saturday afternoon. It is the local chapter, which consists of Norther VA (and I have included some areas south as well), and Washington D.C. I am leaning more towards having the meeting around Tysons as I have found it extremely difficlut to find a venue in D.C. I know that one of the liaisons in Beltsville MD would possibly like to join us, so my thinking was that Tysons would be easy to get to from D.C. and Maryland.
AnonymousAugust 14, 2010 at 11:45 am
These are really old posts, but I’m hoping someone is out there monitoring them.
I’m located in Alexandria, diagnosed with GBS July 2009. I’m back to work full time as of this past week, but continue with severe neuropathy and pain in my feet and ankles.
I would love to get and offer support, if there’s something going on!
AnonymousAugust 16, 2010 at 9:32 am
I am so excited to hear about other warriors in the area. I live in Manassas and would love to get together to share stories and get information. My story has been a little different as i was pregnant when I was diagnosed. I now have a beautiful 3 month old baby boy.
Needless to say it’s been a hard road. Since information is so limited and my dr at Georgetown said I am a pretty severe case, I don’t know where I stand (no pun intended), when it comes to recovery in relation to other suffers.
Anywho, I know I missed one get together but would love to meet everyone.
I am on short term disability so my schedule is open.
hope to talk soon.
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