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Dad's Progression

My dad's death and our CJD experience is still very painful at times. When my dad first started getting sick he knew something was wrong and worried because the doctors couldn't diagnosis the problem. Later, he was also frustrated he couldn't control his emotions or coordination. I certainly wish we would have known about CJD earlier.

In February 1997 my dad gave me a "What if I died in the near future" talk when we were on a trip together (I'd gone with him to drive since he was so tired). It disturbed me to hear my dad talk like he thought he was going to die. I told him I wasn't even going to think about him dying--at least not for another 30 years or so. He had such insight; he knew what it would be like handling things for my mother, getting his large estate settled, and getting along in life without him.

My dad's illness was such a mystery to our family and the doctors, too. My dad had kept a daily journal ever since they got married in 1950. When he was first in the hospital and the neurologists were searching for answers, I got the current journal book and we read it to try to see if he'd written about anything specific he hadn't shared with us. Unfortunately, his journal didn't reveal anything we didn't already know; however, it was sadly interesting to read of his tiredness, frustration, emotional feelings, etc., plus see his penmanship deteriorate over time.

After six weeks in the hospital, my dad died on June 21, 1997. We figure he showed vague early signs about two years before, with the main progression beginning a year before his death. Here's the basic progression:

Spring 1995: Development of asthma, persistent cough, became tired more easily, shaking in hands when performing tasks requiring hand-eye coordination such as writing, pouring a beverage or serving food on to his plate. The doctors called these "essential tremors" and believed the asthma medication caused them.

Fall 1995: My dad's yearly medical checkup showed high levels of protein in his blood. The doctors supposed this was because his body was still trying to repair bones in his foot which were severely broken in an accident several years ago. Blood tests also suggested hepatitis but couldn't confirm it. A liver biopsy showed cirrhosis as if he'd been a drinker for years (he never drank). The unusual blood proteins levels remained higher than normal and evened-off. Nothing was done about it before other symptoms started.

Fall 1995-Winter 1996: Several mild-to-severe asthma attacks, two of which required Emergency Room trips. He retired in December 1995, but continued to work full time. Rested more to alleviate the asthma and fatigue.

Late Spring-Early Summer 1996: Continued asthma, cough and hand tremors. Fatigue, increased signs of stress, occasional memory lapses, first signs of loss of appetite and beginning weight loss.

Summer and Fall 1996: Increased fatigue, occasional change in temperament, more signs of stress, vague change in eyesight, more frequent memory lapses, loss of interest in favorite activities, continued lack of appetite and weight loss.

Late Fall 1996-Winter 1997: Severe fatigue, flu-like symptoms with violent vomiting attacks which required trips to ER, periods of dizziness and loss of balance followed each vomiting attack, more frequent bouts with abnormal temperament, eyesight problems which doctor couldn't determine, continued weight loss.

Late Winter-Spring 1997: Incredible fatigue, heightened stress level, occasional periods of blank staring, startled expressions, sensitivity to light but also inability to get enough light in a room to read. Increased dizziness and loss of balance leading to trouble walking, driving, etc. Continued weight loss with no real interest in favorite foods. On May 2, 1997 one doctor suggested Multiple Sclerosis as a possible diagnosis. Emotional outbursts, occasional childlike inappropriateness in words and actions. Hallucinations on May 7, 1997. Everything was completely out-of-character for this dignified and active man.

Entered hospital first thing Thursday morning, May 8, 1997. First suspected diagnosis was a stroke. Daily--almost hourly--decline. First small jerking seizures followed another violent vomiting attack on May 11. Continual tests daily (MRI's, CAT-scans, bone scans, blood studies--you name the test, he had it done) with "nothing wrong" on every report. Seizures and occasional blank-outs for the next few days. Increased inability to think or reason clearly. Unable to recognize family members who were always there, but usually able to recognize visitors. Seizures increased dramatically in the fourth and fifth days in the hospital, with arms and neck twisting. Refused to eat on the fifth day. Within eight days of entering the hospital my dad was mostly unresponsive, with violent all-body seizures. He had to be restrained for several days to keep from tearing out the IV's.

We first learned of CJD on Sunday, May 18, 1997. Spinal fluid was sent for testing the next week, but the sample was lost in shipping--something our doctors nor we knew for over a week. Ten days after the first spinal fluid sample was collected, another round of samples was taken and shipped.

We looked for the moments when my dad's eyes showed he knew of his surroundings and who we were. Each of us--my mother, two sisters and I--had a chance to talk to him during these brief periods. The last time I spoke to my dad when he was aware, I was able to tell him how much I respected and loved him. While we were holding hands and arms, he was able to barely speak, "I love you, too." Those were the last words my dad said to me.

Any occasional momentary consciousness ended with vomiting attack on May 28. He then continued to decline in a coma with seizures. The test results finally confirmed CJD, but it came only about 10 days before his death. From the research I did after hearing about CJD, I didn't need the lab results--he had the classic symptoms and progression of the disease.

My dad died at age 66, on June 21, 1997 at 3:12 AM. At that time I lost my father who I deeply loved, respected and trusted, also my business partner and best friend. It is a loss I will feel for the rest of my life.

I've often wondered how my family would have been affected if my dad had died of something more "normal" like a heart attack, stroke, or even in an automobile accident, rather than from such a mysterious unknown disease as CJD. In this particular case it has been indeed hard.

CJD is so cruel. I saw my dad waste away and not be able to communicate with us. He had such a sharp mind, and we assumed it would be his body that would eventually break down, but his mind would always be there. CJD attacked and killed his brain, leaving his body to slowly die.

I think back to May 2, 1997 when a doctor first suggested Multiple Sclerosis as a possible diagnosis. I was in disbelief and numb by this news. My dad tried to put it into perspective by saying MS took years to run its course. He said, "At least its a slow killer." We had no idea it was really CJD and he'd be dead in six weeks.

I hope that recounting my dad's CJD progression will help doctors who are struggling to diagnose a patient. I further hope family members of CJD victims will be aware of any early signs they may see, as well as be able to see the progression of the disease.

Don in Atlanta

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