Today, I am numb. My mother and children had to hear of my diagnosis yesterday. I have a 20 y/o son, 14, and 13 y/o daughters. My son is studying to be a minister and is so optimistic. My daughters are terrified. I try to encourage them, but do not have the words to say to put their minds at ease. This is what hurts the most right now.
Ernie,
First, I echo all of the good advice you received from the others. This disease sucks but the people here will help you navigate the unknown, take the edge off of the frightening, and generally be a great help to you.
Now, a couple specific points... I hate - but understand - your numbness and feeling of helplessness WRT your kids. The day I told my son and 3 daughters (the youngest of whom was also 13) that I had ALS, I reminded them (and myself!) that all of the things we knew, believed and hoped the day prior to the diagnosis were just as true the day
after.
I think taking that banner into the fight has helped us to not have a crisis of faith in the face of this ordeal. As time goes by, I encourage you to keep an open dialogue with the kids; they need to absorb this in small doses! IMO, it helps to find the balance between ALS being the centerpiece of your lives and it being the elephant in the room that no one acknowledges.
After 3 years of this dance with Uncle Lou I had to give up my job as a manager when my speech became to bad for me to deal with employees and customers. As I was about to go on STD-to-LTD, my employer offered me the chance to work on some strategic planning issues from home. A blessing to be sure, and maybe one that you could also work out with your company. Less stress on you, and they still get the benefit of the knowledge that led to you being the GM!
Insurance: if you do not already, begin paying for your LTD so that when you take it the income is non-taxable. Easy switch with your HR dept, and runs me about $20 per month. I'll make that up in tax savings quickly and I have been paying it for 3 years.
Resolve to die with great resistance, and know that having ALS does not preclude you from living fully for your family right now!
Blessings,
Jeff
