I was diagnosed with Bell's Palsy on September 1, 2014 when I was 37 weeks pregnant. I am about 90% recovered today, but it has been an extremely long and difficult road to recovery. Although this condition is not life threatening, the functional and psychological impacts of facial paralysis are life-altering!
Imagine one day waking up and out of the blue, not being able to close your eye or blink, and needing to tape your eye closed just to go to sleep. Imagine not being able to speak properly, or chew or drink without food or liquid falling out of your mouth. Imagine not being able to puff your cheeks to blow out a birthday candle. Imagine not being able to smile. For me, my inability to smile made me avoid taking pictures with my son and family. When I did find the courage to take a few pictures, I was shocked to see my image; someone who I no longer recognized.
An unfortunate and devastating fact about this condition is that most doctors do not know its cause and do not know how to treat it properly. For example, when I was initially diagnosed I was advised not to take steroids because it could harm my baby. The next day I was advised that I should take steroids, but I was prescribed too low of a dose. When I was finally prescribed the proper dose, I was also advised to get electrical stimulation to treat my paralysis, which turned out to be the wrong approach and highlighted how disjointed care can feel if you're a patient with Bell's Palsy. I just broke down and cried. I had spent the first two months of my newborn's life running around getting treatment that was actually harming me…how could these doctors be so wrong?
What I learned was the importance of finding the kind of caregivers who not only understand the physical discomfort I was experiencing, but the mental and emotional aspects of facial paralysis as well. The therapies that wound up helping me consisted of targeted exercises, massage, synkineedling and other treatments. I've gained better facial movement, less pain and reduced synkinesis, and as a result I feel like I have my life back. A year after being diagnosed with Bell's Palsy, I was comfortable enough to finally take our first family photo. Moreover, I was able to look at my image for the first time in over a year and recognize the person smiling back at me.
By raising awareness to the general public and to the medical profession, we can ensure that patients receive the proper treatment and will work to find a cure so that we can change lives and outcomes, and turn disappointment and uncertainty into hope.