By Brad, Dystonia-plus syndrome, United States, February 29, 2020
I have segmental Dystonia. I was a career firefighter/EMT. It began with rapid eye blinking and involuntary jaw movements. I was diagnosed with Meige Syndrome (a combination of the two affected areas). That was 13 years ago. Since then it has spread to include my neck (torticollis) and my upper limbs, especially my hands (now segmental). I get Botox injections all over my face, neck, and forearm (for my hands). I also have to take medication. Although, I was still able to perform my duty as a firefighter, the meds I must take created too much risk for the fire department. I was forced to retire on a reduced involuntary disability pension. The worst part of my disease is my loss of control over my jaw.
The inability to speak clearly, and never on the phone, has created a horrible deficit in my ability to enjoy life. It has led to complete social isolation. Once you tell your friends that the hardest thing for you to do is speak, they simply stop communicating with you. The isolation is devastating and life changing. So, now I'm isolated with only my poor wife to hear how I'm so depressed and in pain (from spasms) everyday. My face is twisted. I've knocked out to upper front teeth from the jaw clenching. I've lost three lower front teeth because my gums are tearing away. My hands are always clenched unles I'm using them. The Botox helps a little but is far from complete control of my symptoms.
I am 58. I've had my condition for almost 14 years. It is still not completely controlled and has made life very challenging as I have a 18 yr old (only child) enrolled in the top public university in the US. My Dystonia has deprived me of having conversations that can help us achieve our goals. Also, my front teeth loss, and involuntary arm, face, and hand movements, create the appearance of a drug addict. This is one of those horrible disabilities that are unseen and patients are misunderstood. We need a better system for those of us with an unseen disability. I can't tell you how many times I've said to my wife, "I wish I was in a wheel chair so people could see I'm disabled.