We tend to see people as victims when they have a certain disease or are suffering from unfortunate circumstances, but that is an unhealthy way to view things. People that are going through hard times should be seen as survivors rather than victims of life.
Mike Brignac is one of our local survivors. He is a husband, father of five, and teacher at F.K. White Middle School fighting against a disease named dystonia, but continues to battle for his quality of life.
Dystonia is a neurological disease that causes abnormal muscle contractions. These muscle contractions can either be almost constant or irregular depending on each specific case. These involuntary movements can cause contortions of the body or seem like quivers going through the different muscles in the body. Dystonia can be worsened by intentional movements made by a person because it can set off a chain reaction of involuntary reactions that can travel into the nearby muscles.
While it can have many causes, such as a mutated gene, the effect of a sickness or the result of an injury, Mike’s case is caused by an environmental event that happened four years ago in August of 2010. He was working in Mobile, Ala. at the time helping with the clean-up of the disastrous mess after the BP oil spill when a nearby refrigeration company unintentionally leaked a chemical called anhydrous ammonia. It is because of this extended contact with anhydrous ammonia that Mike Brignac began his fight with dystonia.
The day after the chemical release Mike began to notice that something was amiss, but believed it to be temporary. It took many doctors and many months to finally come to a definite conclusion before Mike was diagnosed. Once he was told he suffered from generalized dystonia he was relieved to finally have a name for his symptoms. However, it was then revealed that he would most likely live with a permanent disability as a result of the disease. It was a devastating blow.
Mike’s life changed rapidly. Overnight his life had become a fight between what his mind was telling him to do and what his body decided to actually do. His muscles began having a will of their own.
Mike describes dystonia as “having a muscle cramp all over your body, from your face to your toes.” Waking up to another day is to wake up to a constant fight for control.
He not only faces the effects of dystonia, but also the effects of the medication he takes to try to control the symptoms of the dystonia. It makes even the small things difficult to accomplish. He has problems focusing on a task, his speech can slow down, and the correct way to say even simple things often becomes a challenge.
There is no cure for dystonia as of yet, but there are a few treatments that sufferers of the disease can try if they have the financial ability. Medicine is usually the first and sometimes only option available to many families. Unfortunately, medicine does not have any effect on some types of dystonia, but Mike’s form is aided by the use of medication.
There is evidence that Botox injections can bring some people relief, but, in the event that insurance does not pay for the injections, they are mostly unaffordable. Mike’s doctor has sent in several requests for insurance to cover injections, but all attempts have been unsuccessful thus far.
A final option is Deep Brain Stimulation, also known as DBS, which seems to be effective in helping treat the symptoms that are associated with both Parkinson’s Disease and dystonia. DBS consists of an implantation of two electrodes in the brain which are each connected to a battery pack situated underneath the skin of the chest.
Mike is very passionate about raising awareness for dystonia. He sees himself as a “billboard for the disorder.” He walks with a limp, and many times people that happen to be passing by ask why. Encounters like these and the reach of social media are his personal methods of bringing attention to dystonia.
His advice to other families that are dealing with dystonia is to get multiple opinions, ask questions, and research. An individual should find the right doctor for them that truly understands what they are going through, the effects of the disease, and the methods of treatment. Don’t be afraid to ask the doctor about anything, keep a running list of questions to bring to a future appointment, and find out what dystonia specialists and dystonia sufferers have learned through the web. Ultimately, Mike says, “don’t let any doctor minimalize what you or your loved one is going through.”
Mike says that dystonia has impacted him in a positive way by helping him to realize how valuable his time on Earth is. He regrets that he has missed so much of his children’s lives, but realizes that he could have died on that day, four years ago, when the ammonia was released into the air. He is thankful for every day he is given; every day that he shares with his family.
Orange was chosen last month as the color to represent international awareness for dystonia. Mike’s birthday was Sept. 29, and this year the students, faculty, and staff had a special surprise planned for him. He showed up at school to a sea of people in orange T-shirts united to both celebrate his life, and offer support for his continued struggle with dystonia.
Mike’s fight against dystonia is far from over, but he helps give hope to others living with diseases. He inspires students and adults alike to not be afraid of their battles but to face them head on. He encourages people to “be strong and determined.” Whether you or a loved one has dystonia or you are simply facing a different kind of fight in life, there is hope in the middle of the darkness.
If you would like more information on dystonia, visit dystonia-foundation.org or dystonia-parkinsons.org.