On September 24th Russ had to go to the hospital to have a CT scan done to check for Cancer.The tests showed No cancer.

Our son and I were very frustrated with Russ's Misdiagnosis

I called our doctor, He suggested we get a second opinion either at the medical center In

Omaha or The Mayo Clinic in Rodchester, Minnesota.

On September 30th Russ had an appointment to see a neurologist at the Medical Center.

The neurologist went through his medical records. After looking at Russ,

She thought he had CJD.

On October 12th my caregiving days were over. I felt sad and relieved. My sadness was that I had been there to give Russ that personal care, And I would miss that.

My relief was that caregiving is a huge responsibility and the majority of that time I felt emotionally as well as physically exhausted.

I'm grateful to my family for the breaks they gave me, Though I needed more.

I tried to the best of my abilities, and have NO regrets.

Russ had to go to the hospital for his second spinal tap and his second EEG. He never came home. The neurologist

Thought he was having myoclonic seizures,

So he admitted him into the hospital.

October 13th was a special day to remember, as this was the last time I fed Russ food.

The nurses were afraid he would get food caught in his lungs, so I gave permission to have a tube put through his nose to his stomach for tube feeding.

He also received his medication this way.

On October 19th the neurologist from the medical center called to give me the results of the spinal tap tests, The spinal fluid had went to the National Institute of Health.

The results were positive for Creutzfeldt-Jakob disease.

I'm grateful my son was with me when she called. We cried and we were there to support one another. We went to the hospital, Our son told his Dad "You are one in a million"

He also wrote this on the blackboard in his room

I told PoPo ( My nickname for Russ)

"Your one of the chosen"

Russ had always talked about donating his body to science when he died.

God works in mysterious ways as now he had

"One of the chosen's" brain.

I had to face the challenge of getting his brain donated for the study of CJD.

My sister had previously found out from the Internet that at the time of death because of CJD the body had to be cremated because of contamination to the soil.

I called a friend that worked at a funeral home, she said "Because of this disease

he would need a Ziegler case" A Ziegler case is a sealed unit that fits inside a casket.

This would mean more money for burial. I also talked with a funeral director,

his response was "I'm not equipped to handle this."

I had talked with infection control nurses at the hospital.

They were very helpful, they gave me leads to about 3 research centers that were interested in Russ's brain. They also located a pathologist in the area that was interested in doing the procedure. The procedure could not be done at this hospital due to fear of contamination to the pathologist and their employees. The

Infectious Disease Control Doctor spoke with a center that informed him that before Russ was buried his brain, eyes, spinal cord, and nerve type tissue would have to be removed when doing the autopsy.

I am still working on the brain donation, along with the Social Workers and Nursing Staff at the nursing home. God only knows how it would all turn out. The nursing home staff had called and left messages for the pathologist that was interested in doing the procedure, but we were not hearing back from him. I was ready to contact the national news to make an appeal to the pathologists all across the country to have this done.

My sister e-mailed one of the most powerful women in the United States. Oprah Winfrey. Her staff e-mailed back saying "Unfortunately, due to the overwhelming amount of mail that Ms. Winfrey is receiving, she regrets that it is impossible to answer each and every message personally."

On November 2nd, the nursing home staff called the State Health Department and found out that CJD is not a reportable disease unless the patient is under 55 yr. of age.

On November 4th,they informed me that no matter what age CJD is NOT a reportable disease in Nebraska. What am I to believe? They called the CDC and were informed that the State of Nebraska, HAS TO APPOINT a pathologist to do the autopsy. Thank God for some good news! The next day I learned from the nursing staff that the state appointed pathologist refused and said, "This is the second time I have been asked to do this and my answer is no." Nebraska is one state where a pathologist can refuse and not face recourse.

This pathologist worked out of the hospital that had previously refused. The pathologists weren't educated about CJD. They had no idea what we were going through. It would have meant a lot to hear those two words "I'm sorry." I found out that the state of Nebraska doesn't have to appoint a pathologist. What a mix up! I pondered the thought, "With death comes dignity." The doors of dignity were closed because of CJD. They also told me they had talked with some of the funeral directors and they didn't want to do the embalming, but without it burial has to be within 24 hours of death.

How does a person plan a funeral in 24 hours? If there was no autopsy we could have a traditional funeral. I told the nursing staff Russ will have a traditional funeral and the autopsy will be done. At this point I was ready to have his body shipped to another state

to have the autopsy, but he would still have to be embalmed before he crossed the state line. Who would do the embalming?. I could be strong in my beliefs, but in my aloneness I cried and felt discouraged. God gave me the strength not to give up and to persevere.

I called Dr Paul Brown at the National Institute of Health and left a message saying we needed a pathologist and that the surveillance team is needed here. The Surveillance Team is located in Great Britain, They visit CJD patients and their families. He did call back leaving the message giving me the name of a pathologist in the area that would be interested in doing the procedure. It was the same pathologist we weren't hearing back from before. I called the center that was interested in Russ's brain. I spoke to a doctor.

He gave me some interesting facts: "The eyes do not have to be removed, and no damage to the spinal cord. Very, very unlikely any contamination to the soil would occur, No need for cremation. No rules against the regular burying of these individuals. The Ziegler case is unnecessary. Doing an autopsy on a person with CJD is better than having to one on an AIDS or Hepatitis patient." I asked him to come and do the procedure, he said "You have pathologists there."

My son and I were making plans for Russ's funeral. The casket we liked was an unsealed one. The owner of the business said "In order to avoid possible contamination to the soil you better get a sealed one." I put my foot down and said, " I do NOT want to hear more negativity or static about this disease." I found out that as long as vault is sealed it's not necessary to get a sealed casket.

We got the casket we wanted.

I called my brother-in-law's Dad who works part time at a funeral home, He told me that one of the directors, called the State Health Department about this disease and the proper handling of the body.

Thank God we have a funeral home now.

I finally heard from the pathologist that was interested in doing the autopsy procedure. I told him we would be honored to have him do it. He apologized for the ignorance of the medical community, His concerns was where the procedure would be done. I told him I had talked to someone at the funeral home. He was going to call them.

The morning of November 7th. The pathologist called me, the first thing he said was, "Your persistence has paid off." He had called the funeral home and arrangements were made to have it done there. After receiving this good news I was on the mountain with God, I didn't want to come down. I love those mountain top highs! My message to CJD families is: "Have faith and don't give up. It will work out the way it is meant to be."

Russ always kept his weight between 150-160 pounds. The nurses weighed him

he now weighed 113 pounds! His body looked like he was a POW.

The nurses tried to keep Russ comfortable.

November 26th. Thanksgiving Day! A day that will live in my heart forever. I had to battle the staff at the nursing home about him being put in a wheelchair. The wheelchair had been taken away. I had made plans to have my family at the nursing home for Thanksgiving dinner. I wanted Russ at the table with us The neurologist called the nursing home giving the ok for the wheelchair. After all as long as there is no seizure activity CJD doesn't discriminate against wheelchairs. I enjoyed having my family with me, but I will say what was most memorable was that our son and I had that private time with Russ outside in the beautiful weather, and were able to give him a long ride.

We noticed his hands were starting to turn purple.

I had Russ's room beautifully decorated for Christmas. I also played Christmas tapes and would sing those songs to him. I told him Merry Christmas.

I got hospice of Nebraska involved with his care. They provide excellent care and support.

On December 7th. Russ's lungs were starting to fill up with fluid causing this terrible noise. His breathing had become labored. His temperature and blood pressure kept going up and down. His hands and feet were swollen. He was really suffering. We spent more time with him along with other family members and friends. Our son and his girlfriend were staying with me in case the nursing home called. On December 10th I got a call from the nursing home at 8:45 A.M. Russ was mottling. We were needed at the nursing home. I sat by Russ in his bed all of a sudden this terrible noise stopped. I thought he was dead.

I got up and began to sob. Our son went to get the nurse, she came in checked him and said he was still alive. She left and our son sat by his Dad, held his hand said, "Dad, I know it hurts." With that Russ died.

He was going home for Christmas to sing with the Angels

Medical History of some other CJD victims include:

1. Stitches: Russ had stitches in his finger and hand in the early 1970's

2. Russ was a blood donor in the early 1970's

3. Seizures: Russ had a grand maul seizure in 1994

Trauma-CJD link: The armed robbery was a very traumatic experience for Russ. I talked to a doctor and found out he believes "Many people have associated trauma with CJD and in people who have experienced trauma, CJD seems to become apparent more quickly."