Dean
Forum Replies Created
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When I first read this article, I was disappointed, sad, mad, and let down to only name a few of my emotions. Thinking back to when I received all my testing to confirm if I had ALS, I got a spinal tap… The strange thing was the day after my spinal tap I got a CSF leak from moving furniture the following day (Horrible headache). The surprisingly strange thing is my ALS symptoms seem to slow down slightly after the leak which finally clotted after several days. Maybe having the CSF taken out every couple months has something to do with the slow progression group? Just a thought! Throw everything against the wall and see what sticks. I also agree that mental stress effects my progression dramatically. Our brains and emotions play a part in this decease for sure. I pray we all get a working treatment in our life time and eventually a cure. God Bless all pALS!
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Hello Giselle,
My first symptoms of ALS were shortness of breath like your husband. I kept thinking my struggles with working out (jogging, elliptical, HIIT training) were due to me getting older. I was also noticing facilitations in both of my calf muscles. By the spring or early summer of 2019 my breathing issues were getting worse until I finally ended up in the ER on 11/19. That’s when I received a diagnoses of ALS. There are no words to explain the blow that diagnoses took on me and my family. I started on Riluzole by 12/19 and have noticed a somewhat slow but steady decline in my abilities. I also started on the Trilogy breathing machine for at night lying down and resting during the day. It’s been a long and difficult road dealing with all of the ALS symptoms along with COVID-19 locking everyone down in my state.
I have also had the issue with my voice being slurred and raspy. I’m still able to walk, use my arms, drive, etc.
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I played Football only through High school, afterward I went into construction but continued to workout (run, weight lifting, HIIT, Cross Fit, and MMA), I eventually into law enforcement. I’d like to know the % of athletes, former athletes, who contract ALS.