28 Days for
Daddy
The end of September 1998 seemed to be
pretty much like any other month, but this time it was different.
This was a time when all of our lives would change forever. A
rare neurological disorder was in the beginning stages of tearing
my fathers and our families world apart. Slowly and methodically,
the disease called Creutzfeldt-Jakobs disease was taking over his
brain.
As we celebrated his grand-daughters birthday one Saturday, we
noticed that our father seemed somewhat quiet but we couldn't see
any reason for it, "maybe he is just tired" we said.
But other signs had begun to show as well that we had not been
aware of at first. These signs became more evident in time.
Our father was a retired business man who was always very good
with numbers. Recently, however, he had begun to make
mathematical errors that couldn't be explained. Occasionally a
friend or acquaintance would ask if he had been feeling ok
because he had said something out of character.
The next few days, dad seemed to be right by moms side every
minute of the day, almost as if he knew something was wrong. The
Sunday after the birthday party, dad made a comment to mom that
he didn't think he could help usher in church that day because
his hands were shaking too much and he couldn't tie his shoes. He
also was feeling like he knew what he wanted to say but was
having trouble expressing himself. Dad thought it was Alzheimers
setting in on him. Mom took him to the hospital instead of church
that day.
Dad had been on a lot of medications over the past years for high
cholesterol and high blood pressure, and the first thing the
doctors thought was that he might be getting over-medicated. So,
after about a week in the hospital, and a change in medications,
dad went home and seemed to do ok for a few days. There was more
trouble ahead.
One morning, dad awoke mom saying that he was being stung all
over his back by bees, and he wanted mom to get them off. Of
course there were no bees on his back, but now there was no doubt
something was wrong, but what it was, was still a mystery. In
addition to this, his equilibrium seemed to be off a bit. Mom
took dad back to the doctor, but the doctors couldn't explain it
either.
On October 16th, during a family get together, dad seemed to be
particularly bothered by bright light and the sounds of his grand
kids playing. The lights were not that bright and the kids were
not that noisy. Later that night, as I was talking to dad, he
told me that he was seeing things that he knew were not what they
seemed. "The light is falling" he said as he jumped to
try and catch it. "I knew that it wasn't really falling but
it looked like it really was".
I was beginning to remember that I had heard of similar symptoms
before about a friend of mines brother. But I also remembered
that she had said it was an extremely rare disease her brother
had, and that only one in a million people contracted it. She
recounted her brother's experience. "He started doing things
that didn't make sense. He was buying things he didn't have any
use for. I remember him saying he felt like he was drunk a lot of
the time, and that things weren't making sense to him."
Could it be possible that two people who worked together
experience such a rare thing in both of their families ? Just the
same, I started asking her about the symptoms. I also spent hours
on the Internet researching CJD. By now, Dad had been
experiencing many of the same symptoms. Loss of the ability to
reason and expressiveness, loss of equilibrium, acute sensitivity
to light and sound, and hallucinations.
It was now the end of October. I remembered thinking that little
more than a month ago every thing seemed normal. Mom took Dad to
the doctor when he started hallucinating again. The doctor put
dad in the hospital for a second time to run a new battery of
tests. Dad's long term memory was good but his short term was
almost non existent. One night, I happened to be in dad's room as
the doctor came in to check on him. As the doctor was leaving the
room I followed him out into the hall and asked him about the
possibility that my dad had Creutzfeldt-Jakob's Disease. I'll
never forget the look on his face as he said, "how do you
know about that?" His doctor confirmed that it was on his
list of possibilities, however, he wanted to run tests that would
identify curable diseases first. I remember dad telling his
doctor, he felt like there was something wrong between he and
mom. He said, "I don't know why, but I feel like I am
arguing with my wife too much over little things. I am being
really bothered by insignificant things. I love Martha, I really
do, but these little things are driving me crazy and they
shouldn't." I had seen one of these exchanges just moments
before as he was arguing to remove the bar above his bed because
he didn't need it and it wasn't necessary. After running MRI's,
MRA's, EEG's, Cat-Scans, blood tests and who knows what else, his
doctors determined that they would need to send dad to a major
medical facility for more sophisticated testing. Dad would not
come home again.
After dad was moved to a major metropolitan hospital, mom would
call daily with reports. Sometimes the report was "no change
today," or "he is still having "seizures". A
lot of the time, however, the doctors would spark a glimmer of
hope and the report was more like; "I really think he is
doing better, and I think the doctors will find it soon". By
this time, because of the extensive research I had done, I was
pretty sure of the diagnosis. All the symptoms pointed to CJD,
but I didn't want to burst the bubbles of hope the family would
have occasionally. Hope was all we had by now, but it was fading
fast as his condition worsened on a daily basis. I still don't
understand why the doctors weren't more up-front with us. I'm
convinced they knew what it was long before the biopsy was done.
By now, dad was pretty much unresponsive to outside stimuli. We
would look forward to the brief moments of coherent communication
as they came, but they would fade fast and the reality hit hard.
I remember one of the last things I heard dad say was, "how
sweet it is." This was pretty much his outlook on life. For
all practical purposes, he really didn't know what was happening
any more. EEG's had become a daily event now, Mom stayed by dad's
side day and night. A dramatic increase in seizure activity was
of primary concern. Heavy sedation was ordered to try to stop the
seizures. On October 24th, when the seizure activity did not
subside, doctors placed dad in a drug induced coma until they
figured out what steps to take next.
The next step was to do a spinal tap to check for spinal
meningitis, and a brain biopsy to check for CJD. There was no
facility in the state that was willing to test for CJD, so the
biopsy had to be sent to the Mayo Clinic in Rochester MN for
analysis. Meanwhile, dad's condition did not improve. Dad
remained in the comatose state for about two weeks.
At the end of the two weeks, there was nothing more that could be
done. The biopsy had not come back yet, but his condition had not
changed, and dad had a living will. The family had gathered
together, and the decision was made to turn off life support. Dad
continued to breath for several hours after his machines were
turned off.
I will never forget the laboring sounds of his final breaths. It
was as if he was saying "I want to live". Dad died on
November 6th, 1998; 28 days after he was first hospitalized. The
results of his biopsy were reported 4 days after he died, and
confirmed that he was a victim of CJD.
Something to think about:
Information cited by the CDC on my home page indicates an
incidence rate of 1.2 per million people. If this number is true
and accurate, how is it possible that, in a small desert
community of approximately 50,000 people, I have personally
learned of 4 confirmed cases of CJD (not including my dad), and
17 cases nationally. Is this a statistical anomaly, or do the
"CDC's" numbers not accurately reflect the situation. I
strongly urge you to read and send the letter linked to our home
page by the button labeled WRITE YOUR LEGISLATORS. If you include
your mailing address they will respond both by e-mail and by
mail. If enough of us respond, maybe someday we will find a way
of treating this disease. Please tell your friends about this
site.