MY FACE / Facial Paralysis Support Network
"Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one'"- C.S. Lewis
Who are We? Facial Paralysis Patients are a unique and under served population. The Facial Nerve Support Network was borne of the patients of the Facial Nerve Center, and the valuable friendship of two patients hoping to bring others together to forge  special relationships with people who understand the frustration and the transformative effects of facial paralysis. One recurring theme in meetings is, that, in a way, you are mourning, or parting with, some part of your identity- and it can sometimes be a lonely and painful process. 

The  response to the first meeting was overwhelming.  Since, sessions generally host approximately twenty individuals, many regulars, as well as many new patients who come from far and wide, to share emotional experiences that not many can relate to. 

The sessions engage in valuable, unburdening discussions regarding symtoms, the sharing of strategies for relief, surgical and treatment experiences, coping strategies for the physical and emotional self, but most importantly, it's comforting to be in a room with people with a smile like yours- we are not alone!

Members suffer from a host of conditions, yet the treatments and the physical and emotional side effects are the same. Our interaction is invaluable, but our collective sharing allows us to share information that can inform care givers in the field.
MY FACE serves to facilitate communications between facial paralysis patients as well as other existing patients and future patients. This space is for patients to share their experiences, create and maintain a dialogue, ask questions to be answered, and, most importantly, stay connected as a group, helping to provide on-going support between meetings and patients far and wide. The conditions that bring us together are myriad, but the treatments and the physical and emotional processes are similar, if not the same. Below you will see a list of the conditions that have brought facial paralysis patients together, as well as common sentiments and useful tips offered by our caregivers and membership.

 Conditions  Symptoms 
  Advice                      
Bell's Palsy
Brain Tumor
Excisions
Ramsay-Hunt
Syndrome
Mastoidectomy
Moebius Syndrome
Polio
Accidently		 Synkinesis
Assymetry
Eye Closure
Balance
Stress Management
Treatment Anxiety
Distorted elf image
Social Anxiety
Hearing Loss 		 Be vigilant about your physical therapy
and other regular medical visits such as
eye exams.
Trust that your caregivers will do what is
necessary in due time and allow yourself time.
Concentrate on other aspects of your life.
Regularly engage in stress management
techniques and healthy living- consider exercise,
yoga and meditation.
Remember there is always hope, visualize positively
and try to maintain a positive outlook.
Begin to accept your new identity.

 


 

    

 

Copyright . Lucia Rodriguez. All rights reserved.