Day by day
The remodel of our bathroom continues. Destruction is over and drywall went up last week. This week the walls were painted and they have begun the tilework. We will all be "relieved" (ahem) to have a toilet on the main level again.
Yesterday we were able to have a telephone conference with Dr. Neel about some new issues and symptoms that Kevin is experiencing. Even though we never did get the video portion of the call to work, it was comforting just to be able to relay our concerns and get his feedback. He is prescribing an additional medicine, one that will hopefully slow down the degeneration of Kevin's swallowing ability and also help alleviate pseudobulbar affect (increased laughter/crying), which is common with ALS patients. Kevin has made the decision to discontinue the voice banking; he has a significant number of phrases already with which to "build a voice" and the task is becoming more effortful.
Earlier this week we were very blessed to have the opportunity through the ALS Association to obtain a free hospital bed. A huge benefit of the hospital bed is that it can be raised and lowered, which helps with getting in and out. We are still working out the details on how/when to pick it up; thanks to my brother Tim for offering his muscles and his truck to help with delivery! We may be sending out a call for additional help in unloading it from the truck into the garage, where we will store it until we have a place for it inside. (I think we will be able to provide masks; stay tuned.) We are very grateful to be able to secure this bed, although we are also mindful of the reason it is available: someone else has lost a loved one to this terrible disease....
Thanks to all who have checked in to see if we need anything. We haven't been going anywhere except for the occasional walk (roll, in Kevin's case) through the neighborhood. Neighbors and friends have been delivering groceries. The kids have been very busy with online learning the past few weeks, but we've been squeezing in board games and family movie nights as well. Spirits are generally good, and even though the kids do miss their friends, I am enjoying not having to drive to activities all over town!
Stay safe (and home, if possible)!
Jane
Yesterday we were able to have a telephone conference with Dr. Neel about some new issues and symptoms that Kevin is experiencing. Even though we never did get the video portion of the call to work, it was comforting just to be able to relay our concerns and get his feedback. He is prescribing an additional medicine, one that will hopefully slow down the degeneration of Kevin's swallowing ability and also help alleviate pseudobulbar affect (increased laughter/crying), which is common with ALS patients. Kevin has made the decision to discontinue the voice banking; he has a significant number of phrases already with which to "build a voice" and the task is becoming more effortful.
Earlier this week we were very blessed to have the opportunity through the ALS Association to obtain a free hospital bed. A huge benefit of the hospital bed is that it can be raised and lowered, which helps with getting in and out. We are still working out the details on how/when to pick it up; thanks to my brother Tim for offering his muscles and his truck to help with delivery! We may be sending out a call for additional help in unloading it from the truck into the garage, where we will store it until we have a place for it inside. (I think we will be able to provide masks; stay tuned.) We are very grateful to be able to secure this bed, although we are also mindful of the reason it is available: someone else has lost a loved one to this terrible disease....
Thanks to all who have checked in to see if we need anything. We haven't been going anywhere except for the occasional walk (roll, in Kevin's case) through the neighborhood. Neighbors and friends have been delivering groceries. The kids have been very busy with online learning the past few weeks, but we've been squeezing in board games and family movie nights as well. Spirits are generally good, and even though the kids do miss their friends, I am enjoying not having to drive to activities all over town!
Stay safe (and home, if possible)!
Jane
Thanks for the update, Jane. Andy and I have two new N95 respirators. If you would like them, I will mail to you. Just shoot me an email.
ReplyDeleteAll good here in NJ as well. Watching the Covid-19 numbers crawl westward from NYC. All being careful and mindful.
I am glad you got a hospital bed. I am glad spring is coming and lifts all our spirits by allowing outdoor walks/rolls in the sunshine. Please tell all your family we are thinking of them and sending good thoughts and love your way. :) Kim