Facial Paralysis/Synkinesis support groups in NYC?

[andrea]

Hi Everyone-

I've never posted anything on this forum but I have definitely done a lot of reading since I was diagnosed with an AN. It has been 2 years since my surgery and I have been dealing with facial paralysis and synkinesis ever since. I'm getting to a place where I feel like it would be helpful for me to meet and talk with other people dealing with these issues. Is there a support group of any size or sort that meets in NYC?

Thanks,
Andrea

[Debbi]

Hi Andrea,

There is an excellent support group that meets in NYC headed up by ombrerose (Lauren). If you do a search for her here, you will find her profile and contact her.  Or, most likely, she will be around later to reply to you here. 

I am 4 years post and have been dealing with facial paralysis and synkinesis since.  If you'd ever like to chat, I will be happy to talk to you.  You can PM me from here or go to my profile and send me an email.  I've gotten a lot of good results from facial therapy and am going this week for my first round of botox. 

Debbi

[mandy721]

Hi Andrea,
I am one the co-leader of the NYC support group and I think it would be great if you could join us. We meet every other month at NYU Langone Medical Center and have a great group.   There are a couple of people in the group who are dealing with facial paralysis and synkinesis, including my husband, Ken.
Thanks to the wonderful support of this group and Debbi, Ken has been working with a facial retraining therapist and the results have been very positive.   The therapist both he and Debbi work with, Jackie Diels, is giving a talk at NYU this coming Wednesday morning and the local support group has been invited to attend.  I will send the details to you by a personal message. 
Hope to meet you soon,
Miranda