May 15, 2014
The New Normal
Living with ALS is living in a constant period of adjustment. Just when we think we have a hang of things and have settled into a routine, Tad has a decline in his mobility. He seems to get sick every few months and never fully recovers back to his previous ability.
The most recent adjustment has been the shower situation. When the kids and I started back to school after Christmas break (2014) we must have brought home a virus from school. None of us got sick, but Tad fell extremely ill. The doctor was worried about his constant coughing to the point of almost not catching his breath. He tested him and treated him for Pneumonia to be on the safe side. He was so weak he couldn’t get up without assistance. I had to dress him, shower him, and help him out of bed and his recliner (things that he could all do before this point). He has recovered from the illness, but he never got back to his previous strength. I still have to help him in and out of bed, dress him, and help him in and out of the shower, but we made it work and have found our new routine.
Tad has still been driving up to this point, but recently he was told that would not be wise. Even if his ability was there, it is a huge liability for our family. If something were to happen, the other party could sue us for all we have if they found out Tad has a neurological disease. This has been the one thing he could do to feel like he was a contributing member of the family. Driving the kids to and from school is pretty much his reason for getting out of bed each day. They talk and pray on the way to school and then he gets them started on their homework when they get home. We agreed he would finish up the school year—only one more week to go—but then we will have to make other arrangements for next year.
We are starting to look at getting a chair lift for my car or even purchasing a minivan with a chair lift. We admit we are kind of slow getting prepared for the future possibilities of this disease because we have always been so optimistic. We waited probably too long to get our shower renovated to make it accessible. We try to live in the moment, but we must prepare for the future possibilities. Our optimism hasn’t faded, but we must also be realistic. Every day we must adjust to our new normal.
The Sunday Girl 
I just found your site. My husband is just beginning the process of diagnosis This article is almost a year old. Any update on Tad?
I don’t get on here much. Life is pretty busy being a caregiver, teacher, mom, and wife. Tad is slowly regressing. He had a feeding tube and diaphragm pacer placed in September, but he is too stubborn to use either. His talking is really slowed and he is not able to do much independently. Despite all that, we continue to be hopeful. I am actually in the process of writing an update to let everyone know what we’ve been doing recently.