I know there have been many questions about Marc's condition and we are blessed to have so many friends and family who care. I figured I would give everyone as much info as we have now as well as what happened when.
I believe it was 2 weeks ago that Marc got sick and stayed home a couple days. When he did go in to work on day three he called me on the road saying that he could not open his right eye and there was numbness and paralysis on that side of his face. He was able to make it to work and get to the nurses office before Jim got there to drive him to the ER. After trying to get care at the VA FW outpatient center he went to Hugley ER in burleson and had an MRI, CT scan and bloodwork done before being sent home with a follow up appointment with a neurologist the next day. That neurologist ordered more extensive blood tests and an MRA. All of the tests came back negative for tumors, evidence of stroke or cerebrial aneurysm. So that was good news. However, his eye still would not open.
After a trip the following week to the VA ER due to his condition seeming to worsen in that eye we finally got a diagnosis of blepharospasm. The neurologist there assured us he could drive and prescribed muscle relaxers.
Muscle relaxers only help about 5% of people with this condition and Marc is not one of those 5 %. This past monday Marc was driving to work when his left eye spasmed shut too, rendering him functionally blind. Thank God he did not wreck and was able to safely pull over and call us to come get him. We contacted the VA and the earliest anyone can see him is October 2oth. The next step in treatment is botox injections in his eyelids. These injections need to be done every three months for the rest of his life in order for him to be able to see on a consistant basis. Since it seemed so far away we tried to get an appointment with another specialist outside the VA sooner and the soonest they could see him was Oct 17th. So basically we just have to wait.
So far I have learned that this condition is exsaserbated by light and that we need to find Marc some specially tinted glasses so that we can lessen the chance of spasms when inside looking at a computer or TV and especially when outside. Driving tends to be a huge trigger so we are not sure if he will be able to drive himself even after treatment.
Right now we are just trying to adjust to life. Marc is out on FMLA leave until we can get him treatment an after that we pray he will be able to return to work, even if that means I drive him to and from his job. If not we are looking into his disability benefits and I have started searching for a flexible part time job that would allow me to bring in some income and soften the financial blow.
We are requesting prayer for a speedy recovery and for our financial concerns to be remedied. Also, the emotional toll on all of us has been enormous. Marc is frustrated that he has gone from a fully functioning independent adult to someone who can't even get himself his own clothes or serve his food. My caregiver load has doubled and there really isnt much of a break. Adaline is more emotional since she is unsure what is going on.
Thank you again to all our family and friends who have provided support to us as we face the next challeges ahead.
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