Our Mother, Claudia Ann
White Harmon
The Strength of Our Family
Claudia Ann White Harmon, a beautiful Christian woman who was taken from us way too early by the disease known as Creutzfeldt Jakob Disease.
She was the loving wife of 40 years and the wonderful mother and grandmother of three children and three grandchildren, especially for our youngest sister who was born with Down Syndrome 30 years ago. Mom was a selfless person whose life revolved around making her family happy. Even as I, my brother and sister grew to be adults, mom would make sure that Santa Claus and the Easter Bunny would still come to visit us. To her friends and family she was never known to have a bad day. She so looked forward to turning 62 on May 22 and retiring in September.
Tragically, on May 1, 1999 when mom came home from work, she complained of feeling dizzy. She had seemed a little more tired than usual that week. Although her complaints at the time did not seem out of the ordinary, after all, mom had been working a little more than us ual the past couple of weeks.
The following week she complained that everything was spinning and she felt as though she was in a state of drunkeness. Mom continued to go to work thinking she could work through the dizziness. The second week came and mom decided to go see the doctor. She drove herself on, Monday, May the 10th. The doctor diagnosed her with Vertigo and an inner ear infection. He prescribed Prednisone and Antivert.
Mom felt that the medication would help her and she tried to continue worki ng. We did not, at the time, think anything was wrong. We talked to a few other family members and friends that knew other people that had similar experiences with Vertigo. Vertigo seemed to be somewhat common. The doctor told us it would take a couple of weeks for the medicine to work. The third week arrived and mom was at work when she called dad to come pick her up. This was very unusual. Dad went to get her and noticed that she had slurred speech and seemed different. She complained of having double v ision, so he drove her to the doctor immediately.
The doctor ordered an MRI and a EKG for later that day. Mom took both tests and we later found out that both showed absolutely nothing to be abnormal. Another round of Pednizone was ordered and the doctor scheduled Carotid Duplex a Transcranial Duplex Studies. Mom stayed on the Prednisone throughout the week as the doctor ordered.
The fourth week approached; we continued waiting for test results. Mom seemed to worsen, she was extremely sensitive to bright lights, easily startled, having muscle jerking and balance problems. Our family was tormented by the rapid decline of such a strong and healthy woman. We called and pleaded for the doctor to do something.
Finally during the fifth week May 31, the primary doctor sent us to an Ear, Nose and Throat specialist. He said mom did not have Vertigo and that he felt her problem was much more serious. He called our primary doctor with this information in order to help express our feelings of frustration.
The sixth week, June 7, we were sent to see a Neurologist. After a 2 minute exam and a 3 minute conversation with mom and dad, he put her on Zoloft, an antidepressant the miracle drug... that had cured many others just like her and he also ordered an EEG. Mom con t inued to get worse with muscle tremors, walking became increasingly difficult, her depth perception was distorted, she was unable to hold a conversation, and her memory and vision were beginning to fail. She would say to us that we looked as though we wer e standing sideways or upside down and she also started having hallucinations (she was seeing legs hanging from the ceiling). My husband and I, both in the medical profession, felt very strongly that my mother was not depressed.
Finally, the EEG results ca me back and the Neurologist felt like mom was having seizures..... so he prescribed Dilantin to help control them. Mom took 300 milligrams on Friday, June 11 and 8 hours later cried out that she could see and that everything was clear. We were all so elat ed and felt we were finally on the right track. This feeling of happiness was short lived. The following morning, mom awoke feeling drunk and dizzy again.
Week seven Week eight June 14-21 we could not continue to deal with the progress the doctors were making. I decided to call a physician that I worked with at the hospital and asked him for a referral for a different Neurologist.
We took mom on Monday to see the new Neurologist and he delivered some bad news. He felt it was one of three diseases, none of which had a good prognosis, none of which were treatable or curable. He advised us to continue the Dilantin and ordered the MRI and EEG to be repeated that week.
Mom continued to deteriorate on a daily basis. She was found putting toothpaste on her hairbrush and after returning home from the MRI she did not recognize her house that she had lived in for 36 years. By this time, the spastic jerking movements increased and she began to complain of headaches.
On Friday, June 25, 1999 mom fell limp and nonresponsive in the recliner she had relaxed in many times before. We rushed mom to the Emergency Room where the new Neurologist awaited our arrival. God must have sensed our pain because this man was compassionate and he had a true concern for my mother. It was this night that my family first heard the words of Creutzfeldt Jakob Disease.
Mom never spoke again, the only means of communication were moaning or other physical signs of pain. Mom stayed in the hospital in Columbia S.C. for a week. She was start ed on intravenous nutritional support and required regular administration of pain medication. Further evaluation was done with no findings. The Neurologist referred us to MUSC in Charleston, S.C. to confirm the suspected (CJD) diagnosis.
We arrived at MUSC thinking we would learn a great deal more about this disease from the doctors. Unfortunately, we learned about CJD researching it ourselves. We made calls to several CJD research scientists, studied information on the Internet (CJD Voice, etc) and read CJD publications.
By this time, Mom was totally dependent on nursing care, she could not walk, her muscles were rigid and she had a vacant stare. The doctors informed us the Gold Standard test for CJD was a brain biopsy. We had nowhere else to turn exce pt to this exclusionary type of procedure. The brain biopsy was performed and three days later we got the answer we hadn't hoped for. It confirmed CJD.
Learning about the terminal nature of this disease, we felt strongly that mom would want to spend her last days at home. We were then faced with the decision of nutritional support. We agreed that mom would not want her death to be prolonged, so we decided against surgical placement of a feeding tube (the Infections Disease Physicians advised the surgeons against the Fendoscopic placement of a feeding tube due to the infectious nature of the disease and the inability to properly sterilize the equipment).
So on July 14, 1999, we brought mom home and our family cared for her aound the clock under the guidance of Hospice. She left us for Heaven on July 23 at 5:15p.m.
We love you mom and miss you dearly, Travis, Ray, Ann, Tammy, Danny, Sharon, T.J., Jeremy, and Julia.