Showing posts from July, 2015

Still Lacy

Last night we watched the movie "Still Alice" based on the book by the same name authored by Lisa Genova.   The main character's struggle with early onset Alzheimer's was heartbreaking and familiar.  Although Lacy does not have Alzheimer's, HD results in dementia symptoms.   The message of the film was that we are still ourselves and we still respond to love even though a neurological disease may rob us of our ability to communicate who we are or what we feel to anyone else.   At the end of the movie, Alice is able to communicate to her family that love is the universal language we can continue to speak even when our voice is silenced.

We went to see Lacy on Sunday with some friends.  The sheer number of people in the room was hard for him to handle.  Our friends have known Lacy all his life.  Lacy remembered them, but was just too overwhelmed to be able to handle that much interaction.   For a few minutes, though, Lacy was his old self, smiling and eagerly shaki…

Sunday with Lacy and Moses

Today, we visited Lacy.  He was so happy, relaxing in bed, a little sleepy.  We sat next to his bed, or lay down with him to give him a hug.  I asked if he wanted to hear me read to him from his picture Bible.  Lacy gave a small nod.

"What part of the Bible do you want to hear today?"

There was a long pause.  I could tell he wanted to answer.  I waited until, finally, he was able to get it out.


So I read beginning with the burning bush all the way to the parting of the Red Sea.  Lacy looked at the pictures and concentrated on what I said.  I would stop and ask "What happens next?" but he wasn't able to tell me, so I'd answer for him.

We finally left when we noticed a big yawn, and his eyes began to close.  He was ready for a nap.

Earthen Vessels

There are days when I feel so overwhelmed.  This week has been like that.  I think my feelings are partly due to being unable to get out and walk.  I've injured my knee and will probably need surgery in the next couple of weeks.  I am definitely one of the "earthen vessels" the Apostle Paul writes about!

Changes have been steady.  Lacy is slowly losing function.  He is having a much harder time walking now.  He has to wear pull ups and he feels humiliated by this. Lacy is angrier than usual, but that is partly because he is losing what little independence he has left.

Huntington's Disease had been called the cruelest disease known to man.  I believe it.  HD takes the body, the mind, and the emotions.  It's like having ALS, dementia, and Parkinson's Disease all at once.  No treatment, no cure.  Even if a cure is found in a few years, it will be too late for Lacy.  We can see the future and it is a bleak one.  The pain of this disease is so great, it can't …