I fully understand the challenges ahead of my team at A Life Story Foundation as we try to raise awareness and create action around the horrible disease that is ALS. This challenge was never clearer than a couple of weeks ago when I was surrounded by, of all people, medical professionals.
After a long day of traveling and a long night (the good kind) night of eating and drinking with family I woke up feeling less than $1 million. I did, as most do right after they wake up, walk towards the bathroom. Unfortunately, right before entering the bathroom I tripped on a wire hanger (I'm sure there is a Mommie Dearest reference in here somewhere) and quickly fell to tile floor. As I have almost no use of my arms, I used my head to break my fall. The details after this point have been provided by others who were there as I do not remember much after the hanger.
My girlfriend saw the whole thing unfold in slow motion just a few feet in front of her. She screamed! She quickly picked up my head as I was unconscious. I cannot imagine how scary all of this was, all happening so slowly yet so quickly. She called 911, she called my parents who live a few miles away. Everyone was on their way!
The EMTs arrived in no time at all. This is due in large part to having a hospital a few blocks away. My mom arrived right behind them, driving slightly faster than she normally does I'm sure.
"He has ALS!" It was said early and often to the paramedics and firemen. After all, this is the extremely important part of this puzzle. I imagine they are trained to assess and evaluate every situation as quickly and accurately as possible. So why would they not want this valuable piece of information?
I was talking by the time they arrived, but because of my speech which has been directly affected by ALS, they thought I may have had a stroke because I was slurring my words. Nope, no stroke, just ALS.
After evaluating my speech, then came the part in the performance where they attempted to pull me up by my arms like I was a buddy of theirs who fallen on the basketball court. "No, you can't do that!" screamed my girlfriend.
It was obvious, there was a complete lack of knowledge. There was one paramedic with a laptop who searched for ALS to find information and procedures on how to treat someone with this decease. He found nothing. I cannot tell you how this infuriates me on every possible level!
Uneducated or misinformed is a common problem with ALS across the board. It was just that much more difficult to swallow coming from a group of medical professionals. My team and so many others in the ALS community are willing to teach anyone and everyone about this disease. So, Manatee County, how do we make this happen?
I will always show grace and patience (or at least to really try to) to those who simply do not know what ALS is but for the paramedic who said "so here is a trivia question, what great baseball player died from Lou Gehrig's disease?" while I was strapped to a stretcher as my family looked on, I look forward to your helping us educate your coworkers in the very near future.