Greetings, Michael. I’m so sorry for your diagnosis. I found the same situation with the ALSA here in north Florida, incredible folks but much more geared to PALS and CALS much further into the disease. As someone diagnosed in the past few months, I too have given a good deal of thought to this idea, and as useful as the comments and posts cited by Karen are, and they are remarkably helpful, I feel that regular conversations between the newly diagnosed does not really occur.
For me, dealing with the fear of the unknown is still my greatest challenge, and while all of us with ALS experience this, I think those that have lived with the disease for a year or more have moved more into a “fear of the known,” since progression has become more pronounced, the next function loss is usually better anticipated, and adaptation and acceptance have become more real. No less scary, but more real. I treasure the fact I can still do everything at this moment, but the “real” starts when I can no longer use a hand, arm, or leg (I do not have bulbar onset), because I know at that point we are off to the races.
One of the problems with starting a more lively dialogue among newly diagnosed is that there is so much variability in function at the time of diagnosis. I have read several posts from those diagnosed roughly the same time I was (late spring) that seem to be much further along in their functional loss. As the sticky posts describe so well, the general progression steps are predictable, but we have no idea who will move faster and who will move much slower along those steps. Obviously, those that are already further along (ie, significant loss of walking ability at diagnosis, or difficulty swallowing, for example), have a much quicker timeframe to make decisions about home modifications, transportation, medical procedures, etc., than someone like me that still has no significant functional failure at this point. I can only plan so far ahead not really knowing whether my arms or legs will go first.
I don’t know about your relationship situation, but for me, getting the house and finances in order for my wife was first priority. We got a new roof, new decking and fencing, de-cluttered, sold a motor home to access a good amount of cash, got the vehicles in good working order, etc. Somehow getting the house in order made me feel better. As the sticky describes, making a decision about work if you are not already retired can be traumatic. I made the decision to stop working shortly after diagnosis because time with my family won out over staying employed. However, telling friends and colleagues is deeply personal, and dependent on so many factors that there simply isn’t a “one size fits all.” That one is one you’ll have to figure out on your own.
As a fellow newbie, I’ll be happy to respond to any questions you might have. I also know that there are 2-3 other newly diagnosed that I believe will also be very helpful (Lisa G., where are you.). All the best, Kevin