Jakob Cruezfeldt Disease

January 28, 2015

Stan and Becky Lockhart, and my hub Matt, July 2014

You may have heard about the former Utah Speaker of the House, Becky Lockhart, who just recently passed away from a rare and rapid moving brain degenerative disease called Jakob Cruezfeldt disease.  I guess there are only a few cases of this disease reported in Utah every year and you just don't hear about it much.  This sad story especially peaked my interest and made me gasp a little when I found out what she had died from . . . for a few reasons.  First, I have spoken on the phone a few times with Becky's husband, Stan in the last few years, scheduling Matt (my hub) to speak to the spouses of the legislature, and he's such a nice guy!  I feel bad that he would lose his wife at this stage in his life! Last summer Matt had Stan and Becky on his BYU radio show where they talked about service to family and to the community!  I went back and listened to the show last week.  Here's the link if you're interested in listening.  BYU Radio Show from July 1, 2014

Second, Becky is my age which seems far too young to be dying of such a bizarre brain disease!  

And finally, my Grandma, Dale Tanner, my Mom's Mom, had this very same disease back in 1980 and passed away at the age of 60.  My thoughts and prayers are with the Lockhart family at this time!  

I heard or read an interesting thing lately about this Jakob Cruezfeldt's disease . . . that "it's like Alzheimer's disease on steroids!"  It's Alzheimer's disease condensed into just a couple of months instead of 10-15 years as it sometimes can last!  If you had the choice, what would you choose?  Most people would probably choose the faster moving disease . . . I think I would!  I think my Mom would have even chosen the other if she could . . . but I have to say that I am grateful for the time I have had to spend with her!

In my recent reading of my Mom's journal from the 80's, I came across the entries about when her Mom was dying of this disease . . . which was happening right at the time my youngest brother was born, which I didn't remember was the case!  What a bitter sweet time in my Mom's life! 

April 19, 1980

     I am sitting in LDS Hospital two days post partum after delivering a darling 7lb 4 oz baby boy.     We haven't decided on a name yet - either Stephen Richard, Daniel William, or David Michael . . all possibilities?
     We were thrilled to have another boy.  All of the kids plus Bill and Grandma Cora came up to see him last night.  Michael (age 3) leaned over to the window of the nursery and gave him kisses.  We really feel blessed to have 6 healthy children.
     It's a beautiful spring day as I sit here writing this and I'm enjoying the few days of rest and quiet.

My Granny Tanner and Gram Preece, in the late 70's!

     This has been a difficult time as mother is in the hospital too, suffering (dying) from what we think is a fatal brain degeneration called Jacob Cruezfeldt disease . . a disease similar to the one that Dad died from 13 years ago (Picks Disease).
     Since Christmas, Mother has complained of some vague complaints that I thought were the result of chronic depression . . . complaints of headaches, ringing in ears, tightness in her neck muscles, etc.  I told her I thought she needed to become more involved in other's lives so she would feel more useful and worthwhile, and not so turned inward.  This however was not her problem at all.  In the middle of February I received a call from (brother) Rick saying that Mom had "flipped out".  In talking to her, she described having periods where she lost touch with reality, which I'm sure was very frightening.
     I tried having Mom come to stay with me but it was a very difficult situation. She had to be told what moves to make or she didn't do anything -- "Mom, it's time to go to bed now." 
     We finally worked out a system where a different person would take her everyday and then she would sleep in her own bed where Rob (brother) could watch her. 
     On March 12th, she became paranoid and agitated and too much for me to handle.  Thinking she had had a nervous breakdown, we took her to 3 North at LDS Hospital where she stayed for two weeks.  It was determined by the neurologist (Satovick) and Psychiatrist (Moench) that her illness was not mental but a physical brain degeneration. (Jakob Cruezfeldt disease) 
     She very rapidly deteriorated physically to where she was unable to walk, talk, eat, swallow or respond in any way, but only to open her eyes.  This is how she is right now and it's very difficult for everyone.

Mom and her 4 siblings: Rick, Rob, Deanne and Mike

     All of us kids spent last Saturday cleaning out closets and drawers of Mom's house so Mike (brother) and Sandy can move in.  We've become closer as brothers and sisters because of the many family meetings and decisions we have made together. 
     She is now on 7 West at LDS and I hope and pray she doesn't linger on much longer.  I'm sure Dad will be glad to see her again!  
. . . . . . . . . 
Stephen (I'm assuming she decided on the name at this time :)) just wet on my bed -- his waterworks are terrific! :) . . . . . 

June 2, 1980

     I'll try to remember all of the events since my last entry in April . . . 
Mother continued to get sicker and sicker until Mike called me at 7:20am from the hospital one morning to tell me of her death.  She took her last gasp as he was in the room making rounds.  I will miss her more and more as time goes by and as the memory of her suffering diminishes.  I did not appreciate her enough while alive (I'm sure a common feeling), but wish I had spent more time with her.  I know she loved me although we were not terribly demonstrative, and I knew or felt no criticism from her.  She relied more on me in the last several years than I did on her.  She was always a witty, concerned and immaculately dressed woman. 
    Her funeral, held on May 8, 1980, was one of the nicest funerals I have ever attended.  It was held in the Yale 2nd Ward with Roger Thompson conducting.  Marvin Ashton and Deanne (sister) were the only two speakers and Terry Summerhays sang two musical numbers.  Bill Tanner (uncle) gave one prayer and Rob (brother) the other.  Rick offered the family prayer before the funeral and Mike (brother) gave the dedicatory prayer at Salt Lake City Cemetery where she was buried next to Grandpa Storrs and Dad.  I felt a sure knowledge of life after death and am sure she is happy with Dad!


January 29, 2015

Hike with Mom, January 23, 2015

This photo on the right is from a small hike we went on last Friday, less than a mile from their house.  I'm so grateful that we can still be walking and hiking and it's the middle of January! It was a little muddy in places but not too bad, and she was a little confused about where we were and what the best ways were to go down, but we had fun anyway!  Here's a little glimpse into our walk/hike:  
Short video of our hike! 

I treasure these times! I do not ever want to repeat the words that she said about her Mom . . . "I did not appreciate her enough while alive, but wish I had spent more time with her."  

Although the disease of Alzheimer's is so long and drawn out and sometimes very difficult, I will forever be grateful for the big chunk of time that I have had to take lots of photos, video, make memories and to really appreciate her and her life while she is still alive!  

Love you forever, Mom!