Member Articles & Stories
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:
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.
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.
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.
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
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.
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.
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.
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.