It's February of 2018 now and we are 3 years into Brett's diagnosis of ALS. Also known as Lou Gehrig's disease. I (Stacy Davis, the best wife ever ;) ) will most likely do all of the writing. My plan is to use this site to keep everyone updated on his progress and to record our journey.
I will start out with a little background information on his diagnosis. He had been having trouble with his hands feeling weak and had trouble unbuckling harness at work. He thought he might carpal tunnel syndrome. In September of 2014 we made an appointment with orthopedic doctor to check it out. At the orthopedic dr's office they started doing a nerve conduction test. Almost as soon as he started the test he stopped and told Brett that he was going send him to a neurologist. WHOA! That raised some red flags but nothing too major.
In October of 2014, Brett had his first appointment with Dr. Laganke of Cullman, AL. I attended this appointment with him and as we sat in the waiting room we both knew that this had to be something serious. We looked around his office and noticed that the Dr. actually specialized in MS (multiple sclerosis). That was actually my first thought when he told me about the appointment. I am a google fiend and instantly started comparing MS to what he was experiencing. The only problem I had was that I did not recognize all of his symptoms. We went back to see the Dr together and both of us was nervous and emotional already. The Dr. was extremely nice and sympathetic. He ask lots of questions and did an initial assessment on Brett. One thing I noticed was he ask him to stick out his tongue, which I thought was very odd. We ask him what he thought could be the problem and he said he would have to run some test to rule out some things. At one point Brett ask me to step out of the room so he could speak to the Dr. When I came back in he was very emotional and couldn't even hardly talk. The Dr scheduled many different test including blood work, heavy metals test, EMG, and MRI. Once we got home Brett told me he ask what the Dr thought it might be when I stepped out and he told him it could possibly be ALS. I thought maybe it could be something like MS. I will be honest I had no idea what this meant at the time. I had to google it on my phone. As I was reading I was in total denial. I mean, really 3 -5 years. What?!?
I remember I was sitting on the front porch and typed in ALS in the google search engine. All the puzzle pieces starting fitting. The speech, the weak hands, I finally understood why the Dr. wanted him to stick out his tongue. Now I understood why he had been so upset. I found out he actually had to look it up too. We were both blindsided and had no clue the path we would soon be taking. Following that appointment in October Brett went and did all the test and returned in November. This time we both at least had an idea of what ALS was and what the Dr. was looking at. Of course we had lots of questions and Dr. Laganke was patient and empathic through the entire visit. I think we may have actually stayed well past closing time.
Fast forward summary, Brett took cocktail mixture of meds to begin with and has since stopped almost all of those. He started a Clinical trial in Tampa that measures the progression and takes lumbar puncture every 3 months in April of 2017. He has had 2nd, 3rd and 4th opinions in Huntsville, Vanderbilt and Duke. He has started the recently released medication Radicava. He is participating in a PatientsLikeMe blood draw and progression status. He attends ALS clinic in Huntsville every 3 months.
As a family we have been to Disneyland with a fantastic group called Inheritance of Hope where we met other families like the Dewey's and the Loner's who are in the same situation. We met some wonderful people there and made some great memories! Some of these people were Karen Shelton who worked at the hotel, Lisa Duscio and the Milligans, the McAdams, and so many more. We have participated in 2 ALS walks. Chance and I have attended a camp for kids who have a parent with ALS. This also was an awesome experience. Hope loves company was the organization and we made some great connections and friendships there as well.