Update from Joan

The girls thought I should contribute something to the blog from the perspective of wife and best friend. It is difficult to know where to begin but I was thinking about March one year ago, when Bill and I were working really hard to do some paint up and fix up to some things  on the acreage.  We wanted to put the house up for sale in May so that we could proceed with our plans to move to the Black Hills.  We did not have a clue that anything was wrong with Bill.  During the years that I was a nurse, I never knew a patient with ALS….This is a tough way to learn.

ALS is a nasty disease; there is no other way to say it.  Bill has had a very aggressive case.  Each day since we first really started noticing the symptoms, he has gotten worse.  I anticipated that he would reach a plateau at some point but that has not happened.  Apparently his is worse because his trunk and respiratory status has been affected mostly, although now as each day goes on, he is also losing more and more of his remaining arm strength.

ALS is a disease of loss, both for the patient and his loved ones. My heart breaks with each change in his status.  His daily care still works out pretty well. He is able to walk to the bathroom and that helps so much.  That level of independence is so important to him.  My prayer (one of them) right now is that he is able to maintain his legs.

Right now we are also losing Bill somewhat because as his respiratory status worsens his anxiety increases and his ability to enjoy us being around him has lessened….I miss him, and his voice, and his jokes, and funny sayings.

I have always said that ALS is “whacky” because in the midst of all of the loss and pain, there are moments of sheer bliss, where we have been able to be closer than we have ever been.  I often think that had Bill been suddenly gone, we would not have had the opportunity to spend this precious time together.  I am very thankful for that and for the other blessings that have come with this.  We have a family  bond that was close before, but is now  “unbreakable.”  We have friends and extended family who are awesome and the ALS has gifted us with the ability to see that.  If I could change things, of course I would make it so Bill never had to go through this, but I can’t ... so we learn to count the blessings that we have received.