The Story of Mary
By Tommy Lesher
Mary left Oklahoma City on 14 October 1997 to go to Bolingbrook, IL to stay with our grandchildren while our son and daughter in-law made a business trip to Las Vegas. When Mary left home she was apparently well and functioning normally but was complaining about her vision being a little fuzzy. Also she was recovering from a bout with the shingles which was giving her a good deal of pain at the sight where the blisters had formed. She had been given a steroid shot in the spine at the level where the blisters had been just two weeks earlier. She began to complain about the fuzziness of her vision very shortly after receiving this shot and had complained to the doctor about it.. Within a week she was not able to read even with +3.25 magnification glasses. [She had been using only magnifying glasses bought at the drug store for several years at the suggestion of her eye doctor since her eyes seemed to be quite well and she did not have any astigmatism in either eye.] After another week she was not able to see up close at all but could still see fairly well at a distance. Her original plans included a trip to Cincinnati to see our latest grand daughter. Because of her pending loss of vision Mary came home early.
Before leaving for Chicago Mary had made an appointment for November 5 to have her eyes examined because of the changes she had noted in her vision. When she returned from Chicago on 27 October we managed to get her eyes examined by one of the other doctors in the same office. When she tried to read the chart she could only see the “A” on the next to the largest row of letters on the chart, and even then the “A” was not always discernible to her. [It seemed that she was able to see the letter some times but not others. ] The examination of her eyes indicated that all of the tissues of her eyes were perfectly normal with the exception of a small cataract that was beginning to show up but was not deemed to be the source of her problem.
Based on this exam she was scheduled to be evaluated by a Retina Institute. At the institute they performed their entire bag of tests [photos with dye , etc.] but none of them showed anything wrong with her eyes. They felt that Mary’s eye sight would come back spontaneously within a short time. Their recommendation was for Mary to wait 3 weeks or more before having her eyes examined again. However, Mary had insisted on keeping her appointment with her normal eye doctor on November 5th. This second examination indicated that her eye sight had deteriorated since the earlier exam and lead the doctor to schedule an MRI and some blood testes. These tests all came out normal.
Next Mary was evaluated by a Neurologist. He came to the conclusion that her eyes were functioning normally but that her brain was not interpreting the signals it was receiving. He suggested that she might not be getting enough blood to her cerebral area of her brain due to temporal arteritis. In an attempt to verify this a temporal biopsy, a special vision test and an MRA were performed. The doctor also prescribed a corticosteroid medication that was supposed to help correct the temporal arteritis. All of these tests were performed on the same day which lead to our being at the hospital 14 hours. Up to this time Mary’s hand coordination was steady, but I noted that her right hand was jerking on a regular basis near the end of these tests. This jerking of her arms and legs on the right side got progressively worse from that point on. All of these tests came out negative. There did not appear to be anything wrong with her eyes but her eye sight was vanishing. At this point all that Mary could see was very vague images among splotches of color. Early in the morning she complained about seeing bright splotches of different colors but this would subside to where she generally only saw green splotches the rest of the day.
When all of the tests that the Neurologist came out negative we were referred to the Dean McGee Eye Institute. From their examination they felt that the previous diagnosis was not correct but that there was some form of infection involved. They wanted the MRI repeated, an EEG and a spinal tape performed. We admitted Mary into the Hospital in order to get these tests performed as early as possible. This was in the afternoon of the 24th of November. At this point even her vision at a distance was nearly gone and she was losing her memory. She could not remember the layout of the house we had lived in for over 22 years. I had to lead her around by the hand even to go to the bath room and she could not remember how to flush the commode each time she went.
The brain waves of her EEG, and her general symptomatology, suggested that she had CJD. This was to be verified by the results of a test on the fluid obtained from a spinal tap. However, these results came out negative as well after weeks of delay because the fluid had been sent to the wrong lab and the delays of a holiday. Nothing appeared to be wrong but some silly pen marks on a piece of paper, but the patient died.
In Mary's case she was not only losing her eye sight, but her cognitive powers were failing on a daily basis. Shortly after I admitted her to the hospital she could no longer recognize me or the kids even if we told her who we were each time we spoke to her. Her throat was constricting to the point that we could not get her to eat or drink anything for the last two weeks before her death. Mary did not want to be force fed and we were told that use of and IV was not a long term solution. Therefore, all we could do was try to keep her as comfortable as possible. She was not given any medication except to fight off infection caused by the complication of a Pneumothorax that developed shortly after she was admitted into the hospital. [She had problems with Pneumothorax off and on for the past 2 years but it appeared to be in remission during the 6 months prior to the onset of the CJD symptoms. The constriction of her throat had caused her to have trouble taking the medication and this had lead to her gagging and coughing a lot.
She did not endure any perceivable pain but was being tormented daily with hallucinations that created extreme fright. Fortunately I discovered early that I could cut these hallucinations off by saying a couple of prayers. From what we, the family, could determine there was no doubt that Mary had CJD. The only thing we could not know was how long she would live. Luckily for the family, and me, our walk through hell with Mary was relatively short. Mary passed away at 10:50 p.m. on December 16, 1997. Tommy G. Lesher