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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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