Mary Ann insisted that her diagnosis remain secret for the first five years in Oklahoma City. Some of it may have been her unwillingness to accept that it was so. Certainly, much of it was that she didn’t want people looking at her and treating her as if there was something wrong with her.
It was very difficult to keep that information in since it had such a powerful presence in our lives. Recently, Daughter Lisa told me how difficult those years were for her, not having permission to talk about it openly. Mary Ann gave me permission to reveal it to a couple of people so that I would have someone to talk with about its impact on our lives. If I wanted to add anyone to the list, I asked for permission from Mary Ann before telling him/her.
The secret became especially difficult to keep when the symptoms began to become more visible. She would not let me tell our best friends from KC with whom we even vacationed at times. I can remember the evening she gave me permission to tell them. We were vacationing together in New Braunfels, Texas. Mary Ann stayed at the condo since she was tired. The rest of us went to a Beer Garden in nearby Gruene. We sat together at a table and I finally told them what they already knew, that she was sick. I told them it was Parkinson’s.
It was helpful to be free to talk about it with folks in the congregation when finally Mary Ann gave permission to reveal what it was. All of them were loving and caring to us as we tried to deal with it.
Mary Ann had worked with a couple of Temp Agencies when we first arrived. After about three years of that, one of the companies to which she had been assigned, Jack Cooper Transport, hired her from the Agency. She worked something short of full time for the next six years there. The people she worked with became her friends and support group.
Mary Ann could not be involved much in the life of the congregation since work took all the stamina she could muster. There was certainly no chance to have the energy to do anything in the evenings, and little left on weekends. I took Fridays off and tried to keep up with the house cleaning. I was not terribly conscientious at it, but I tried to get the bathrooms and the vacuuming done and the beds changed so that we could spend time on Saturday together.
We made friends as a couple with some of the families in the congregation and visited, ate together, enjoyed each other’s company at various times. The people in Oklahoma are some of the most gracious folks we have met. The attitude there seems to be that people are accepted until they prove themselves unacceptable. Folks don’t wait until people have somehow proven themselves to be worthy before accepting them.
Finding a Neurologist who knew enough about Parkinson’s to deal with the complexities of Mary Ann’s early onset variety was a challenge. We never found one! We started with a fellow who was pleasant to talk with. He prescribed the basic beginning dose of the standard medication, Sinamet. It helped some, but each time we met with him, we sat in his office across from him as he sat at his desk. He asked if we thought the dosage should be changed in any way (yes, he asked us).
Immediately after the diagnosis, we began going to the Parkinson’s Symposia done at KU Med Center in Kansas City. They have a Parkinson’s Clinic with a national reputation. We would drive up there, at first without telling anyone why we were going to KC. As a result, we had access to the latest and best information about Parkinson’s treatments. It seemed clear very quickly, that the Neurologist we were using just did not have more than a very basic understanding of Parkinson’s and the available treatments.
We looked until we found another Neurologist in OKC. That was our worst experience. He is the one who came into the exam room without ever looking at either of us. He sat at a little table just inside the door, looking down at the chart. When he talked to us, he never looked up. It was actually very weird. By this time, Mary Ann had been on the basic med for treating Parkinson’s for a few years. It worked reasonably well, as is usual in the first stages of Parkinson’s.
The last time we went to him was more than I could tolerate. He suggested that Mary Ann might not actually have Parkinson’s, but have had a mild stroke impacting the left side of her body. When I asked why then the Parkinson’s medicine seemed to be controlling the problem, he made a circle around his ear with his finger, indicating that improvement was in her head. By the way, any Neurologist who knows Parkinson’s at all is aware that one of ways of confirming the diagnosis is to use Sinamet. If the symptoms improve, it is most likely to be Parkinson’s. Even I knew that.
By this time, Mary Ann’s symptoms were becoming more obvious. After about eight years of taking Sinamet, the side effect of dyskinetic movements becomes a problem. Those movements are the wavy ones that are often visible when Michael J. Fox is in the spotlight. Mary Ann never had tremors, the fast movements in a hand or fingers. Tremors are often a symptom of Parkinson’s, but not always. She did have the dyskinesias that come from many years of using the Sinamet.
One time when she was at work, she just slipped off her desk chair on account of those movements. She hit her side on the corner of a two drawer file and broke some small ribs. There was nothing other than pain medication that could be done until they just healed on their own. Mary Ann’s co-workers at Jack Cooper were caring and supportive, always watching out for her.
After the horrible experience with the last Neurologist, we were at a loss as to what to do. Somehow, I became aware of an attempt by a hospital in Tulsa to develop a Parkinson’s program. It was brand new. A local Neurologist was developing a team approach. We applied and Mary Ann, of course, qualified.
She was scheduled for three weeks of in-patient care as they would try to come up with a medication regimen that would work for her. Tulsa is 90 miles from OKC. I was doing full time ministry, trying to go back and forth. Mary Ann hated being there, and I hated having her there. What was especially frustrating was seeing how haphazard the treatment was. Pills were often not given at the scheduled times. (the doctor’s schedule). The Staff seemed unaware that the timing of Parkinson’s meds is crucial to their effectiveness. Having been to enough of the KU Med Center Symposia, I knew that protein in the stomach at the same time the Sinamet competed with its absorption and reduced its effectiveness. That meant there was a need for low protein meals early in the day when the Sinamet was taken and the ability to move was most crucial. I mentioned that the Neurologist in charge of the program. She did not consider it an issue of any importance.
The medicine regimen that Mary Ann ended up with was a fairly complex combination of regular and time release Sinamet. A problem was that the time release version of Sinamet exacerbates the side effect of dyskinetic movements. That was Mary Ann’s most difficult problem.
Mary Ann just could not stand staying there the whole three weeks. She managed two weeks. When she returned to OKC, it was apparent that she would not be able to handle returning to work. She was on temporary disability from her work, but it was at that time that we moved, since I had been called to a congregation here in Kansas.
During the years in OKC, the Parkinson’s grew in its impact on Mary Ann and on our lives. We never found our way to anyone there who seemed able to handle the complexities of Mary Ann’s early onset variety of Parkinson’s.
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