Receiving a Spasmodic Dysphonia and Blepharospasm diagnosis was devastating for me. My dad had the same condition and his was a tragic slow and steady debilitation that gradually took him from us. He trusted the medical world and did everything they recommended, i.e., eyelid surgery, botox and deep brain surgery. There was no upside that I could see. I determined I wasn’t going to go down that same path.
Yet, I combed the internet looking for hope and found nothing, but the same recommendations he had followed. I joined some facebook groups and was discouraged to read entry after entry of complaints and hopelessness.
But then, someone posted the link to Dr. Farias’ Dystonia Recovery Program. I immediately went to the website and saw the many exercises and training in the program. It looked like the answer I was looking for. I signed up immediately. I began doing the breathing, eyelid and voice exercises. I started walking religiously, dancing, and signed up for a couple of virtual seminars to get some more personalised help.
I have improved so much. I used to only be able to walk 50 feet before my eyes would squeeze shut. I realized the other day that I walked for a couple miles with no eye closures. I used to grimace when sitting in a meeting because my breathing and neck were straining. I can now sit comfortably through a meeting. Since my last virtual seminar, I’ve been practicing reading out loud while doing squats and jiggling my stomach (seriously ha ha). I can now read with a fluid comfortable voice. I spoke with a friend on the phone and she exclaimed, “Your voice sounds so much better!” Little did she know, the stunts I was doing to keep my voice working. But Dr. Farias teaches that our muscles have just forgotten their job. Nothing is lost. I believe him and, especially with the success I’ve achieved, will continue to do whatever it takes to develop the neuroplasticity to regain full function.
Bottom line, to anyone suffering with dystonia. There is help! Have hope. Believe you can improve and join the Dystonia Recovery Program and watch with wonder as you gradually heal and get your life back.
Sue Richardson