I wouldn't say there is a dearth of information for someone recently diagnosed with ALS. Nor is there an overabundance of information that serves the recently diagnosed…
...Well,not in a way that made sense to me. Specifically, not in a voice and tone that resonated with me.
I wanted my information presented almost like a conversation in style...in a pub…over cold beer(s)…with an endless supply of unhealthy food...and an occasional game of pool.
Perhaps that’s the better way to describe my approach; more like ALS for Dummies than a medical journal.
That being said, while I aim for a more casual approach, I want to be clear that I strive to be precise and up to date whenever I'm quoting research and statistics.
Lastly, I refer to this project as a roadmap because every patient with ALS starts their journey from a very similar place, and end at the same place. Our paths will be different, for sure, but we will face many of the same obstacles and choices. I hope this effort is of some use. I hope it helps to inform you as you face some difficult decisions.