This becomes more and more of a struggle for me. When do you stop lying to others about what’s going on. I’ve been blessed so far with no major tell-tale signs except a dysfunctional leg and the random speech slurs. My leg is always a topic and everyone always wants to know what happened. I mean what do you tell people? Where do you cut the line at who really knows? I see a lot of random people daily through work and it just gets old lying. Then you wonder if you’re just doing the world a disservice by lying about it. Should people be more aware that this disease is out there. I mean we are talking about 1 in 300,000 people and to be honest between my father and myself I’m not sure I’ve had another person tell me they had ALS.
The reality is I don’t want to admit it yet but it stresses me out more to hide it. Regardless of feeling better and stronger now than 3 months ago the reality is I 99% have this disease. I’ve made my peace internally that I’m just going to ride God’s plan and live life to the fullest but I cringe every time I talk to someone about it. I’ve held off on talking to my children about this because we aren’t 100% sure and no child needs to hear that. I remember when my parents told me and I was destroyed. I don’t mean that in a light way by any means. That tore me to the core until he passed and then I was a wreck for years after that. Until I met my wife I was a professional at pushing people away and not growing relationships. To be honest I’m still trying to fix myself. Ironic that over the past 20 years I’ve shut everyone out from my feelings, find out this stuff, now I’m opening up, and one thing blocking me and bothering me is being open about the same thing that made me shut the door in the first place.
Anyways outside of that I feel pretty good. Fasciculation’s are still bugging me to death but changed up the meds a bit to help me sleep. They might tone me down a bit too much and the past 2 days have dragged too much. Lastly, I got my test results back for vitamins/levels and my vitamin D is still low. I’ve been taking 4000iu’s a day of D3 and just don’t get this. Body is just not processing well right now but everything else was in line.