[leslie-gafford]

Thank you Dagmar!  I am interested in reading as much as I can and figuring out the best ways to do the right things for John.  I feel like once we have a confirmation from Mayo in Jacksonville (next week), and John can quit thinking he doesn’t have it ( or if maybe he DOESN’T have ALS), that we can move forward to finding out the best avenues to take, the best attitudes to have, and the ways we can live with it for as long as we both can.

 

[leslie-gafford]

I can relate to the “time-out” concept, and the dilemma of wanting to be there for my husband, but wishing he was still busy with work and pre-occupied with projects so that every little thing I say or do doesn’t require a consult and communication…how terrible of me!  Also, I noticed just days after his diagnosis, that in certain circles, my expected difficulties are not the most desired topic of conversation – I immediately felt “different” from other members of a group of friends who have been my BFF’s since middle and high school; we get together basically monthly to have dinner and complain about simple stuff, but when it comes to ALS, they can’t relate, and they don’t know what to say or what to ask.  Caregivers need care, understanding, some portion of normalcy daily, and also a time-out!