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Do you know what CJD is? If you give blood, one of the first questions they ask is if you have a family member who has ever had the disease. I have, so I can’t give blood.

I’d never heard of it either until the summer of 2002 after my Mom began showing symptoms such as poor eyesight, communication difficulties that soon manifested itself as dementia. She died 2 months later after spending half of that in a coma in the hospital. That’s the same day we found out the name of the disease that killed her.

CJD stands for Creutzfeldt-Jakob disease, a form of brain damage that is always fatal. There are 3 manifestations of the disease and one of those is commonly known as mad cow disease. In this case, transmission is via contamination. The other 2 forms are familial and sporadic. Familial CJD, of course, is  transmitted genetically. Sporadic CJD is neither genetic nor contamination … basically they don’t know how it happens.

Due to the hospital fumbling the autopsy we don’t know which variation my mom had. She most likely had Sporadic CJD due to her age and how it manifested itself. Essentially the brain turns into Swiss cheese. CJD is both a horrible and peaceful way to die.

It is so rare that doctors may take weeks to even suspect it as a cause of the symptoms. My mom was already in a coma in the hospital when the doctors began testing for it and sending the results to the NIH. It took several weeks. In that sense it is frustrating for the victim and family members to know that something terribly wrong is happening and yet not know exactly what. Even before the hospital, my mom was frightened and knew something serious was going on, so much so that she created an audio tape of her “last words” to her family (more on this later). We found it as we were cleaning out the house after her funeral.

On the other hand once the disease progresses far enough, that sort of self awareness is no longer present and her neurologist explained to us that death by brain damage from that point on is one of the more peaceful ways to go. That doesn’t make it any easier to watch.

The United States claims that there has been no verifiable case of mad cow disease within its borders. I wonder how they know. Public health officials took no pains to ensure my mother’s body was handled safely and that she was tested properly. If she had had mad cow disease they wouldn’t know it.

Since the post mortem autopsy wasn’t performed, we don’t know the variation of CJD that killed my mom.

We literally knew nothing about the disease at the time, so my wife and sister helped dress her body in temple clothes as is the custom with Mormons. I later learned that nobody should have been allowed near the body and that it should have been cremated fairly quickly.

How she contracted the disease is the great unknown as well.

Some years before she had traveled to the UK with her sister. That’s where people do get the disease…or DID get the disease as I later learned that her visit did not coincide within the period of time that officials had defined as dangerous.

My mom had also been participating in a health study called Women’s Health Initiative. It was a landmark study where post-menopausal women were given hormone replacement therapy. A couple of months after my mom’s death that entire nationwide study was called off due to the women on estrogen getting significantly sicker than the women on the placebo pills. I checked and they claim that my mom was taking the placebo.

The estrogen pills other women were apparently taking were a derivative of mare urine, a protein that would potentially have transmitted CJD. I find that suspicious, but of course I am just paraoid.

And now… My mom’s final words recorded during her last days of lucidity and left on her nightstand for us to find after her death….

If you had this unusual chance what would you say to your spouse and to your children?

My mom chose to bear her testimony of the truthfulness of the Mormon faith. The children were instructed to make sure our dad went to church. She loved us very much and our seeing one another in the afterlife depended on our collective faithfulness to the things she knew to be true. Even at the time her words rang shallow and hollow to me.

On your deathbed, wouldn’t your final words to your loved ones differ a bit more from the rote testifying than can be heard every first Sunday of the month?

There was definite fear there, but there wasn’t the passionate awareness of what each of her loved ones needed to hear as individuals. Now that I’m out of the church myself, I feel cheated by this opportunity she had to talk to me one last time. The church pretty much owned my mother her entire life and even at this last moment that could have been sweet and personal … but it was a testimony meeting instead.

I still have her last words on CD, someone in the family digitized it and gave us all a copy.

I never listen to it.

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