We were shocked when even his Assistant knew what we were talking about when we described the symptoms of Mary Ann’s version of Parkinson’s. KU Med Center was an hour away, but Dr. Koller had a monthly clinic at hospital right here, only ten or fifteen minutes away. We could hardly believe it.
Mary Ann’s symptoms had worsened as the medication regimen set up in the hospital in Tulsa before we moved to Kansas simply could not handle them. In the very first appointment with the KU Med Parkinson’s Department Neurologist, Dr. Koller, he assessed her situation and added a medicine called Permax. Permax is dopamine agonist. It works by stimulating dopamine receptors in the brain. It makes the basic medicine, Sinamet, more effective.
Within one month, the time it took to titrate the Permax to its therapeutic dose, Mary Ann’s symptoms were reduced to being barely noticeable. That level of functionality remained for almost four years. It was as close to a miracle as we have experienced.
In addition, a group of ladies in the congregation welcomed Mary Ann and took a special interest in her welfare. She developed friendships that ultimately grew beyond the fact that she was the wife of the Pastor. Connie, wife of Pastor John who had retired from that congregation was also someone who chose not to be defined simply by the role. She had set a good pattern for Mary Ann to follow.
I found much comfort in seeing Mary Ann develop those friendships and experience new relationships. She became much less intensely private and finally admitted that it was true when I told her “they like you better than me.” She had always in the past contended that the church folks were only connected to her through my ministry. That had changed with the folks at the congregation I was serving here in Kansas. Also she realized that she had friends from former congregations who remained friends with her long after we had left those parishes. They were truly her friends. In spite of the Parkinson’s, the dozen or so years here before I retired seemed to be some of the best for her in some ways.
We had found a townhome in a shared maintenance subdivision that was the right size (less than half the size of our home in OKC) with everything on one floor. It had come on the market the day before. We got in the first offer at full list price. The realtor realized that we were very fortunate to get into a maintenance free area at that price. It turned out to be a very wise choice.
Since Mary Ann could no longer work, eventually there was a small amount of disability income that she was awarded. It helped us alter the interior of the home so that it was more user-friendly for Mary Ann. Friends enlarged doorways for us. A contractor who was a member of the congregation built a roll-in shower and extended the bathroom a bit to allow it to accommodate a wheelchair comfortably in anticipation of that need arising.
We replaced the carpet with one that did not resist her feet moving when they shuffled. It was a firm enough weave to allow a wheelchair or walker to move easily. Parishioners did the labor on finishing the downstairs so that live-in help could stay there if that was needed. There were aesthetically pleasing grab bars that look like and can be used as towel racks placed strategically in the bathrooms, along with tall stools.
We found a couple of portable electronic doorbell systems that we put together so that there were four buttons spread throughout the places where Mary Ann spent her time. She could buzz me whenever she needed help. All the various tools provided an environment that was comfortable and welcoming. We made a very functional living environment for ourselves — with the help of a lot of parishioners. We are in debt to all of them for what they have done to help us and care for us.
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August 7, 2010 at 11:06 am
Dear Peter,
I just got Life Times from BCBS and read your article. I am not sure you would remember me, but I worked at Marshall Chev for 25 years and I am well acquainted with Gayle. I remember you coming in from time to time. I just wanted to express my heartfelt sorrow on your wife’s condition. I lost my husband 8 yrs again and know some of the circumstances you are goiing through. I will add you to my prayer list and my God’s gentleness and strength be with you always. Martha
August 7, 2010 at 11:27 am
Martha, I seem to remember a Martha at Marshall Chev. I am not sure but I am even picturing you in my mind. You have jumped into the blog as I am reviewing Mary Ann’s and my life together. She died about two months ago. Having lost your husband, you understand something of what I am experiencing now. I had no idea it would be this painful. I am on course in the grieving and surviving, but it sure ain’t easy!
I just saw Gayle a few weeks ago when I did a Memorial service for Mary Ann in Aurora so that folks who couldn’t make it to Topeka would have a time to remember her.
I hope you are doing well.
Peter