Member Articles & Stories
A Tribute to My Mom with All My Love
During my Mom's illness, I visited the Many Faces of CJD
page many times and read the stories from family members and friends whose
loved ones had died from CJD. I visited the page because the doctors thought
Mom had either CJD or Paraneoplastic Syndrome (the two disease have very
similar symptoms) and I wanted to gain as much understanding of the disease
and be prepared for what was to come.
Many months ago, I decided that if it was CJD, I would add
Mom's story as a tribute to her, and to help others who face this disease in
themselves or in their loved ones. A few weeks ago the doctor called me with
the autopsy results…Mom had CJD. So here I am with Mom's story…
Kay Jean Cizmich was born in Martinez, California in 1934.
She was the second of six children. She grew up in the Bay Area of
California. She married our Dad, Herbert Clemence, in 1955. He died in 1968
at the age of 36 from an auto accident. It was pretty crazy in the Bay Area
in 1968 to raise three girls alone, so Mom moved us to Oregon. Mom didn't
work outside of the home, she was happy being a homemaker and a mom.
I'm the youngest and when I turned 18, she went to college
for a horticultural related degree. She'd always loved flower gardening, had
a green thumb that was incredible and wanted to become educated in that
field to find a job. Unfortunately, her college education was cut short when
she became ill from Malathion poisoning, lost part of a lung and could not
continue to be around those substances. She left college and shortly after
began working for the State of Oregon DMV in a clerical position. She worked
for the State for about 14 years.
She had always been healthy, other than the Malathion
incident in the mid-1970s. So, during the summer of 1998, when she had
insomnia, extreme fatigue and some vision problem, we thought it was from
other causes (like the insomnia caused the fatigue and she just needed to
get use to the updated prescription in her new glasses). But in late October
1998, when she told me she was having trouble walking, which she described
as "I'm staggering like I'm drunk, I can't move my left foot very well, and
some of my toes on my left foot are numb" I knew something was up. Also, she
was having trouble remembering even simple things from day to day. We
decided that if she wasn't better in a few weeks, I would take her to the
doctor.
Her first doctor's visit, of which there would be many
more, was on November 18th. He thought she may have had a slight stroke and
scheduled her to have a brain MRI. On the way home from the doctor's, we
stopped at a store so I could buy her a cane. She needed it to help steady
her because she was having quite a bit of trouble with her balance at this
point.
The MRI was on November 30, and showed no sign of a
stroke, Parkinson's or MS. We were so relieved, but still needed to know
what was wrong so we could "fix it". On January 11, 1999, we saw the
Neurologist for the first time. He ordered a blood test to see if she was
suffering from vitamin B toxicity. She was and she stopped taking her high
potency B vitamins, but her condition continued to worsen. She was now going
to bed by 7pm, which was completely abnormal for her…she'd always been a
night owl going to bed well after midnight.
During February, Mom went through more tests: electrical
"shocks" to see of the nerves in her legs were damaged (they weren't) and
lung rays for tumors (there were none). I asked the doctor for a referral to
the Oregon Health Sciences University (OHSU) because that is the best
facility in Oregon and I figured if anyone could cure her it would be OHSU.
He agreed but the earliest available appointment at OHSU was April 26th due
to a long waiting list.
Her condition worsened and by the end of March she needed
a walker, instead of the cane. She fell many times trying to continue to do
things around the house like she use to.
In mid-April, the Neurologist admitted her to the
hospital, so he could run a battery of tests. She endured a second brain
MRI, a complete spinal MRI, a spinal tap, a nerve biopsy, a bone scan,
several blood drawings and two 24-hour urine collections. They tested for
everything they could think of. I was on the internet looking up diseases
and symptoms trying to find a clue. All the tests came back within normal
range except the test for Porphyria and arsenic, both were only minimally
out of the normal range.
Finally April 26th arrived and I took Mom to OHSU. She was
so happy to see Dr. Johnson (the OHSU Neurologist) because she and I were
sure that now we would find an answer. I had taken all of Mom's X-rays, MRI
film, etc. with us for Dr. Johnson to review. He spent two hours with us,
did all kinds of tests with Mom (memory recall, spelling words forwards and
backwards, squeezing and gripping with her hands) and then he went to look
at all of the film. When he came back into the room, he said "I'm sorry that
I don't have something more positive to tell you. I can narrow the possible
list to one of four diseases, but I think it is most likely it is either
Creutzfeldt-Jakob disease or Paraneoplastic Syndrome. Unfortunately, we have
no cure for either of them and both will take her quickly". Mom and I looked
at each other and she said "well, Honey, we all die from something".
On the hour long drive home, Mom and I talked about her
dying. Mom had a very strong belief in God and life after death. She wasn't
afraid to die. She told me that her three girls (my sisters and I) were the
most important thing to her in her life, that she would never leave us but
would be on the other side watching over us.
In May, I contacted the local Hospice program. The hospice
nurse met with Mom, my sisters and I. Mom completed the paperwork, including
Mom's advanced directives concerning her end-of-life wishes. My Mom's
sister, Marilyne, came from Alaska to care for her. She now needed help to
dress and with daily necessities. Mom began using a wheelchair by the end of
May. All of Mom's sisters, her brother, some nieces and nephews came to see
her.
She was such a trooper through all of this. She never
asked "why me". She worked hard to keep doing things for herself or to help
us when we were transferring her. She told me that her last year was going
to be "like one big dream". She was grateful that she had no pain.
In mid-June, Marilyne returned to Alaska and we moved Mom
to an assisted living facility. Mom's condition kept changing at such a
rapid pace that the assisted living facility could not keep up with her
care. In July, I moved her to a nursing facility. During August, Mom
continued to recognize us, would follow our conversations, but she talked
less and less. She had some paranoia and hallucinations, which frankly we
think could be attributed to the medications she was given.
On August 21st, Mom told me she would be crossing over to
the other side soon, but she would try to hold on to my birthday (Aug. 31).
I told her that I loved her, but not to hold on for my birthday if she got
the chance to cross over before that. I didn't want her to stay in the
condition she was in…in fact all of us had told Mom that it was OK to let go
when the angels came for her.
I last visited with Mom on August 28th as I helped her
with her dinner and into bed. It was a good visit. She smiled as I told her
about riding Dancer, my horse and how well her cats and bird were doing in
their new homes.
The next morning, when her sister Mimi arrived around 7:30
am (like she had done every morning since June 12th when we moved Mom from
her home), Mom was in an unresponsive state. She remained that way, except
on August 31 (my birthday), when she "woke up" around 5pm. I bent over her
in her bed and she looked at me and very clearly said "Hi, happy birthday,
love you"…those were the last words she spoke to me and the best birthday
present I'll ever have. I told her I loved her and kissed her. She also
puckered her lips to my sister Stephanie to give her a kiss and told her she
was pretty. Shortly after that she lapsed back into the unresponsive state.
Two days later, on September 2nd, Mom died peacefully with
all three of us girls, her sister Mimi and one of my brother in-laws at her
side. We had known her time was near and had stayed with her all-night long.
I have given OHSU permission to share Mom's brain with Dr.
Pierluigi Gambetti of Case Western University in Cleveland Ohio for
additional studies and genetic research. Dr. Gambetti and his fellow doctors
at Case Western specialize in CJD research. During her illness, Mom
commented more than once that she felt sorry for the doctors who wanted to
help her but could not, and that perhaps from her they would learn something
that would help others with CJD in the future.
I miss my Mom very much, but I have visited with her in my
dreams many times. I know she is OK now on the other side and that true to
her word she watches over us.
Here is the progression of her symptoms:
Spring and Summer 1998
- frequent bouts of insomnia
- chronic fatigue during the day
- some difficulty with vision
October 1998
- numbness in left foot - little toe and adjacent toe
- stagger when walking - commented "I walk like I'm
drunk"
- chronic fatigue
- short term memory problems
- retiring to bed at 7pm - would retire between 11 pm and
2 am prior to illness
November and December 1998
- staggering increased - held on to furniture, etc. when
walking to steady self
- felt "shaky or jittery" inside of body
- began using cane to aid walking
- vision, fatigue and memory problems continued
January 1999
- fatigue comes and goes - some days felt "well" again
- shakiness now evident in hands, but it is worse in AM
- using cane full time for walking
- vision, fatigue and memory problems continued
February and March 1999
- several bouts of vomiting at night - food undigested
even several hours after eaten
- began using walker instead of cane
- sensitivity to noise - very startled by sudden or loud
noises
- other symptoms continued (shakiness, vision, fatigue,
poor short term memory)
April and May 1999
- symptoms continue and increase in severity
- weak, needed assistance bathing, dressing
- taking naps several times during day
- good appetite, but huge craving for sweets
June and July 1999
- bladder incontinence begins
- began using a wheelchair in early June - by July too
weak to move chair on own
- moved to assisted living in mid-June, then nursing
facility in mid-July
- increased daytime sleeping and retiring at 6pm for the
night
- "phantom" eating gestures after meal is done
- loss of use of both legs - no longer able to support
herself at all
- bouts of paranoia and severe nightmares
August 1999
- mid-August no longer able to feed herself - still
interested in food, especially sweets
- needed assistance with all daily living tasks
- talked very little, but still able to follow most
conversation
- all other symptoms continued
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