Welcome to Brian Bahr's CaringBridge website. It is my goal to keep everyone updated on how Brain is doing. To share our challenges, as well as our victories. In 2015 we moved back to the United States after living international for 10 years through Brain's work at ExxonMobil. God certainly had His hands on our move back to the States. Immediately after we returned, we made an appointment with a neurologist at Baylor University who specializes in Movement and Parkinson's Disorders. After having some issues with chewing for 2 years and no doctor in Canada where we were living knew what his problem was, his neurologist at Baylor diagnosed Brian in 5 mins with Tardive Obromandibula Dystonia. According to our neurologist, the dystonia Brian suffers from was caused by taking the antidepressant Seroquel. The saddest part is that the severity of his current diagnosis could have been prevented, if he had been diagnosed properly in Canada.
Since September 2015 Brian had gone from chewing weird, to a severe case of dystonia where the muscles in his jaw and face go into spams causing mouth clenching and grinding. The only relief Brain has occurs when he is sleeping. We have tried medications and botox and neither one of them are working. As a result of the dystonia, he has been out of work since February 2015; and will no longer be able to work. We have started the process for Long Term Disability. This is devastating for our family. He is our sole provider. He has gone from never being sick in his life to becoming disabled. There is no cure for dystonia but there is brain surgery, which is called Deep Brain Stimulation. This surgery can help control the muscle spasms in the hopes to regain his life back again, but it is not a cure. But it is hope of him having his life back. But before we can do that for the last 9 months Brian's jaw is almost completely shut as a result to the clenching he hasn't been able to eat solids in 9 months. His neurologist refered Brain to see a facial surgeon because there could be something else going on. CT scan was done and it showed a calcium deposit formed on his right jaw joint and could possibly be preventing him from opening his mouth. They did a procedure by putting him to sleep. We were told by the doctor if he can open Brian's mouth then the Brain surgery would be the only thing he would need. If the Doctor went in and he couldn't open then Brian would need his whole right jaw replaced. The doctor was not successful in opening. So as of last Thursday we are looking at jaw replacement next year and then DBS (Deep Brain Stimulation). It is very overwhelming and scary to think Brain will be put through 2 major surgeries in 1 year.
No matter what challenges lay before us God, has not abandoned us nor forsaken us. God will continue to carry us through these days and I can honestly say some of the days are dark ones. But then he shows us how much he loves our family by bringing so many kind caring people in our lives some of you reading this page are those people and some of you are strangers who care enough to reached out regardless of not even knowing my precious family. I know God will use us for his peruse to help others that have Dystonia, like Brain. To help others that maybe finding themselves in a situation like ours for an example: Should we sell our house? Where should we live? Will we be able to keep our insurance? Where will our kids go to school? Will my loved one ever get better and be there for his kids or wife again and be able to do simple every day tasks that we take for granted? Will he ever be able to work again or will he be disabled for the res of his life? What is Gods purpose in all this? These are questions that I ask myself everyday. But in doing so I also know God has this and he will help my husband in his timing. We will remain step fast in faith believing in his promises. God is good even when we can't see what lays ahead. I know God will take care of us.
I would like to thank my dear friend Kim Fitzgerald who found this website and helped me set up this website and Gofundme page for my family. We are so blessed to have you and your sweet family in our lives. Thank you so much
More then anything right now we need your prayers in an effort to keep everyone informed of his condition. We will do our best to keep this site updated with the most current information. Thank you for your care and concern.
A tax deductible to CaringBridge is used to ensure the service is available free of charge for all families, without the use of advertising.
To make a direct donation to the Bahr family, please consider a donation to Brian Bahr GoFundme page: https://www.gofundme.com/bahr-medical-fund