This Journal includes my beloved husband's journey with CJD.

It includes all the different diagnoses he went through before he was finally diagnosed with CJD, and facing the challenge of brain donation for the research study of CJD.

April 1998

An armed robbery took place at the convenience store where he worked.

This was a very traumatic experience for him. A lieutenant at the police department said, "With his age he probably won't ever get over this" Of course, I didn't tell Russ this,

Russ began to have problems with his sight and he was also having hallucinations.

May 1998

Russ was a graveyard shift worker so he would sleep in the evening until it was time to get up to go to work. He would wake up and I would find him in the bedroom closet thinking he was in the kitchen. On another occasion he opened the upstairs door thinking he was going to the bathroom. We had a fan in the bedroom for noise control and he couldn't remember how to plug the fan in the outlet.

I began to be concerned about him. He would go to work, and I would go to bed and cry.

During one of these crying jags, God gave me a vision and I saw Jesus holding him in his arms. I believe this was God's way of preparing me for what I would be going through.

June 1998

He began to have problems at his job with sight and confusion. He was given a medical leave. I got him an appointment to see our family practice doctor because of the problems he was having with confusion and his sight. He had this itchy rash in his hair and on his back, I also noticed he had a lump in the back of his head. He was going to take the bus, so I told him which way to go He couldn't understand what I was saying.

He had his directions all confused thinking north was south and vise versa.

Thank God I made other arrangements to get him there. Blood work was done.

It did show abnormalities. The doctor thought he had kidney or liver problems.

Russ was used to being up at night. One morning I woke up at 2 am, and he was in the dining room and had completely pulled the wick out of a candle. He doesn't remember doing this. He was sitting in a dining room chair, and was hitting the floor with his shoe saying, " Don't you see them?" I said "What?" He said "Centipedes," He was killing centipedes. He was hallucinating.

We got the blood test results back from the doctor showing Russ might have diabetes. More testing was to be done.

In bed his whole body would tremble. I have an antique bed, at times the tremors would be so bad the entire bed would shake. We would be in bed and he would ask me questions such as, "Do you go to the university?" "Where do you work?"

I feel he was beginning to loose consciousness of who I was,

I know he felt bad about it because he would say "I'm sorry."

He walked to Taco Inn, which is a few blocks from our house, to buy some pop.

A half-hour later he wasn't back. I waited there and didn't see him. I walked on home wondering what to do. I knew I couldn't call our son as he was at work.

I thought about calling the police, Thank God when I got home he was sitting at the dining room table with two bottles of pop. I said," Where were you?"

He said. "I got lost" He had been out wandering around.

I knew he could no longer leave the house by himself.

I had taken our dogs out in the evening, since it was so nice I decided to stay outside

with them. When I came back into the house, Russ was in the kitchen, he had two gas burners on the stove going. He also kept turning the kitchen faucet on and off.

I said, "What are you doing?" He told me

"I'm turning the burners off by turning the faucet on and off".

I told him "You don't turn off the burners that way". His response was "Look they are going out". After this incident I was on the phone with "Ask a Nurse" at 10:30 PM.

The nurse suggested I call the doctor, either yet tonight or in the morning.

I called the doctor in the morning, explaining to him all that had happened.

He said, " He needs a psychological exam."

The doctor did put him on Librium, which I feel helped.

July 1998

On July 4th,we walked a few blocks to view the Holmes Lake fireworks display.

He was beginning to walk very slowly, despite this we went. My twin sister and my brother -in - law were there so we sat by them. After the fireworks display, we were walking home he asked me, "Have they ever been at our house?"

I said, "They have been at our house many times." I felt so sorry for him.

On July 10th,he had to go to the hospital for an Echocardiogram plus a MRI. That morning he was very confused. When we arrived at the hospital, he told the lady at the admissions desk, "I'm just here to mow the grass." That evening after dinner he said, "Don't I need matches to light the lawn mower?" I said "No."

He then went to the garage to get the lawn mower out,

I thought he was going to mow our yard. I looked outside and saw him mowing the neighbors yard.

My first response was laughter. I called our son at work, I could hear the lawn mower, but I couldn't see him.

He finally appeared he was coming up the neighbor's driveway,

he had been mowing their back yard. Russ came in the house, he wanted to go back outside, saying he had to scout out people's yards. I believe he thought he was still working for a lawn service he used to work for.

After he got off work, our son came over with his girlfriend.

Our son called the doctor, The doctor told him the MRI showed abnormalities, and He wanted to admit Russ into the hospital. The doctor thought Russ might have encephalitis. He was in the hospital from July 10th to July 16th, having numerous tests, He was seen by a neurologist. He was having a hard time getting his words out. The doctor talked to us about an Alzheimer's support group. Russ wanted to go home so I asked him "Where is home?" He replied, "Canby." Canby was his hometown in Minnesota. At times he would talk about his family like they lived here in Nebraska. He would get frisky and wander down the halls of the hospital wanting to go home. At the hospital a social worker met with us, A very dynamic woman.

She worked all day on plans to get Russ into a nursing home. In my heart I couldn't do this. So on the afternoon of July 16th Russ was released to go home with me. When he got home

One of the first things he did was walk up to the bedroom door like he was measuring it. He wanted to walk out the dining room door to go outside in his underwear.

He had planted beautiful flowers all around the house, I had gone outside to weed them. Going back in from time to time to check on Russ. I came in once and found him in the kitchen wearing my sunglasses (I think he thought he was wearing his glasses)

He was in the process of opening a can of dog food for lunch,

Thank God I came in at just the right time.

Our son would come over from time to time on his bike.

One time he came over, and after he left, Russ asked, "Who is the boy that comes over with his bike?"

We got the results of the tests back from the hospital, The general idea was that Russ might have Alzheimer's a slow virus, or cancer. Cultures would be done to detect it. We were also told he might have a touch of Parkinson's. A stroke was ruled out. It was during this time that our son and his girlfriend learned, that emotional trauma could "trigger" Alzheimer's.

Russ was in the bathtub taking a bath and was going to shampoo his hair with brown

Shoe polish. He was still smoking, and the ashtray was the only thing on the table.

He kept asking me, "Where is the ashtray?" His sight was getting worse.

The end of this month there was a diagnosis of NAIM

( Nonvasculitic Autoimmune Inflamitory Meningoencephalitis).

He was given steroids to take for 30 days.

August 1998

Russ was beginning to have problems talking, He would try to speak, but it sounded like he had a mouthful of mush. His bathroom habits were getting bad. I walked him to the bathroom, when we got there he would say, "I don't have to go" I caught him peeing in the tub, Then the next day he had a bowel movement in the tub. Thank God he cleaned it up. I was getting frustrated. I called his sister in Minnesota, she told me she couldn't handle that herself.

I called a nursing home sharing with them what he had done, trying to get some advice.

He was beginning to have twitches, he would also clench his fists and hold his right hand to his chest.

On August 31st, he had an appointment with the neurologist to follow up the treatment with the steroids. When Russ was in the hospital in July the neurologist gave him a Memory test which he scored 12 on.

At this appointment they gave Russ the same test, He scored only a 1.

His condition was deteriorating.

September 1998

Russ began having fits. On the first occasion,

He was sleeping and suddenly jumped out of bed, he fell to the floor, pulled himself under the bed. He curled his fingers around the bed slats and was crawling to each one.

His behavior reminded me of a monkey, except he was growling like a bear. This initial episode lasted about 10 minutes. I was so scared,

I felt like my heart was going to jump out of my skin.

I talked to him, which seemed to calm him down. He continued to have similar "fits" I began making his bed on the floor.

He bit his tongue on at least two occasions during these fits.

September 4th was a special day for me as my twin sister and I were having a birthday party. I got a break as my brother-in- law came over to care for Russ while I went out to the beauty shop. He saw Russ's condition and decided in order for him to go to our birthday party, He would need a wheelchair.

It reached a point where he could no longer get into the bathtub.

I had to bathe and shave him while he was lying down.

Russ could no longer feed or dress himself.

September 8th, Our son's birthday, I invited him and his girlfriend over to celebrate his birthday. He Got Russ up to the dining room table so I could feed him.

I lit the candles on the cake,

And Behold a Miracle! Russ was singing happy birthday along with us!

Our son just broke down and cried.

It was beginning to be a very emotional time. Russ would get up on his extremities and try to get up, I'd say "You don't want to go, boom, boom." He would begin to cry.

We hugged and cried together. I told him "I'm sorry you're going through this",

Trying to comfort him.

One specific memory I have of this we were crying he patted me on the back, I felt this was his way of telling me It's all going to be okay. Sometimes he would be lying in bed on the floor and just start laughing, I would say "What are you laughing about silly goose?" We would laugh together.

Sometimes he would be lying in his bed on his back,

Then his hands would go up into the air, His eyes looking full of fear.

The demons were attacking.