N,
He is young, your kids are young, and it must seem inconceivable, this diagnosis. Give yourselves time to process as a couple, then as parents, before anything/anyone else.
Belle,
Please don't wave Lyme in front of the newly-diagnosed, in particular. Everyone who has an ALS diagnosis should get a second opinion from a specialist in neuromuscular diseases. Lyme will be one of the many alternative diagnoses considered. The research discussed here and elsewhere reveals that the prevalence of Lyme antibodies in PALS and the general population is the same.
Irresponsible, profit-oriented practitioners have implied otherwise, often wasting the short time and limited funds that PALS have to accomplish their personal goals. Unfortunately, ALS and Lyme are both areas in which dishonest hucksters abound, and so it's not surprising that some ingenious souls have combined them. I've had Lyme and my husband had ALS, so I'm pretty familiar with the differences.
Best,
Laurie