Jack and I have had long discussions re: keeping this private or sharing it. Linda (and Bob) have shared some of that with us.
We finally decided to just let all know as it is slowly seeping out thru people we have told.
We have now seen a great number of doctors and Jack was hospitalized for a couple of days last week. His disease is progressing more rapidly then expect; we pray for a respite in its progression, as sometimes happens. In the meantime, we are dealing with what he has the best we can.
We lost a friend and neighbor to this wicked disease 6 years ago, so are well aware of its behavior and progression.
We have been very encouraged by a visit from another ALS patient who lives in our neighborhood. They gave us hope, not for a change in diagnosis nor outcome, but for living now. The visit made a huge difference to us.
Oh, Gracie - I was sooo hoping the 2nd opinion would be different. But you have already found the silver lining in such terrible news: the willingness of folks to share what they learned [the hard way], as the neighbor did. Of course we offer prayers and sympathy and love, [and we mean it - you and Jack are loved here], but nothing will help as much as someone who's 'been there'. I'm so glad you have that help. The internet, too, will be a huge resource for keeping up with it all [meds, treatments, support groups, strategies], and it's good that you are both pretty savvy online.
You might not even need us anymore.
But you both are part of this community, so please don't think we moved on because you're 'off the road' - we want to know how you are, and we really want to hear from you if there's anything we can do. We're still here for you [both of you], as always.
We appreciate your prayers and kind words. God's blessings on all.
