Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything!
EDIT 3: I am popping in on my lunch break because we apparently hit the front page and I have had a bunch of people asking about donations to ALS research. So I am putting this up top.
The ALS Association is the big one but, on a personal note, I also want to plug the Eleanor and Lou Gehrig ALS Center at Columbia University. The doctors, nurses, and other staff there helped me through the most difficult period of my life and were a wealth of up-to-date knowledge.
Hi everyone, my name is Jason and I have ALS. I started showing symptoms in October 2018 and was diagnosed in January 2019.
My symptoms started in my right shoulder. I originally thought that I had pulled a muscle salsa dancing. I lost the use of my right arm by March, my left arm by May, and I started experiencing head drop by July. I slowly lost the ability to walk over the following year, and started using a BiPap machine to assist with my breathing with increasing regularity.. By September 2020 I was having difficulty swallowing or speaking. By November I could no longer stand, swallow, speak, or breathe without the BiPap. I received a tracheostomy in January 2021 and spent three months in the ICU because we couldn't get parts for my home ventilator due to COVID-related shortages.
Over the past year and a half I have had two trach failures, one of which nearly killed me. I have been approved by insurance for 24/7 home nursing coverage but haven't had a fraction of that due to the nursing shortage. I have also had a couple bouts of pneumonia... because why not?
I am happy to answer any questions you may have about my experience with ALS, living and working with total body paralysis and a ventilator, cats, music, movies, what hypoxia or toxic CO2 build up feels like, or anything else you want to ask.
Cat photos will be provided but you'll have to provide your own refreshments. All I have is feeding tube formula, which is probably pretty gross.
EDIT 2: It is 11pm locally and my nighttime meds are kicking in so I am going to fall asleep soon. If I have not answered your question yet I promise I will. I intend to respond to everyone. I mean, I can lay here drooling or I can lay here drooling while answering questions on Reddit. I will be back after work tomorrow to continue. Until then, here's a picture of my orange buddy, Zim.
Edit 4: I am calling it a night. I will be back tomorrow after work to keep answering, so if I didn't get to you today I hope to get to you tomorrow.
EDIT 5: I am still working my way through everyone's questions so please be patient. I will get to everyone eventually.