My Two Cents
HANG ON HERE WE GO!
As I have pondered what to put in my update, I realize that ALS is an UGLY disease . It has no good to it, the only good is, ” GOD is our STRENGTH & COMFORTER” as long as we keep our thoughts and wants to HIM we muddle right along. But we are human and have a side of us that is not very pretty, we drag our selves down when we lose focus on the only one that can Comfort & give the Strength to get thru the day. This disease has changed Greg not only physically but his personality too. When I look at him first thing in the morning, I can pretty much guess what kind of day he is going to have, and then I will ask him how he is doing, his response confirms it. If it is going to be a bad day I start talking to my Heavenly Father, & if it is a good day I start Thanking Him.
I miss having a conversation with Greg, oh he can use his Ipad to communicate, but after a couple of sentences he tires of that. He sometimes will write it down, only if it is short though. He says that the way he communicates now he can not get across the emotion he is trying to put he. Sometimes I know what he is trying to get across to me just simply by a certain look or action. Some actions I get right off the bat, and other times it is a struggle. He uses sign language to to tell me he Loves me. I told him I am going to video tape him sometime so I will always have it.
The UGLY side of ALS is when he gets tired of slobbering and gets Angry, discouraged, and Cries, oh these things don’t last long, but I feel helpless when they occur, wishing it was me and not him. Greg has always been a Strong man, not only in strength but in Wisdom , and spiritual. Now he can not open a bottle of water, but he still has use of his legs and arms, although he says he doesn”t feel much strength anymore. One thing that has not faded from him is his Spiritualality, THANK GOD for that. I had a Lady ask me the other day if there had been any changes to Greg as a person, I told her He’s not the same Man I married 43 years ago. I know we change as we age, but I never thought an ugly disease would be the culprit.
Greg is getting to where he doesn’t like to get out much anymore, and does not like loud noises, makes him nervous. He spends most of his time in his office where he has a comfortable chair to sit in and a tv , futon for sleeping on, his computer, in the closet he has all his food and medical supplies. Even on days when Reed and Finley are not here he will spend most of his time there. It is peaceful & quiet I must admit. He has been sleeping in there at night, tells me he wants me to get use to sleeping by myself. And too I think he is thinking that if he was to pass it won’t be in the bed I sleep in. He has never said it to me about passing, but I think it is on his mind. You see ALS sites claim most people with ALS pass in their sleep.
We try not to think about the future, we know that by the GRACE OF GOD we will prevail! We have Good people that is always willing to help. Our Sunday Morning class comes the last Sunday of every month,that is something we look forward to and LOVE everyone of them as if they are Family. We also have neighbors that are always checking in and offering their services. Our children take much comfort in that because they live so far away, but if we needed them they would be here ASAP.
So people Greg and I ask that you continue to PRAY for us as we live with this disease one day at a time “SWEET JESUS” 🙂
AS ALWAYS MUCH LOVE IN THE NAME OF ‘JESUS’