by Eugene Grabinski, Sr.
I’ve been sitting here on the balcony of my 5th floor condo. I can see hundreds of trees from my vantage point – three of which I have picked out for my wife, Rita. Every night I throw a kiss to each one of these trees as I say goodnight to her. To pay tribute to Rita for all of the trials, tribulations, and suffering that she underwent with PSP,
I wrote a book about her entitled, My Soul Mate. The term “soul mate” means that we complete each other. We were deeply in love and we tried to make each other as happy as possible. Rita and I were in first grade together in the city of Chicago and had known each other a little over 70 years. She died at age 76. There is an interesting story about when we were in the third grade – Rita turned around to me and asked, “What’s one half of 30?” I looked to see if the nun was watching because that would mean trouble. The nun had her back turned, so I said, “15.” Rita then said to herself, “Gee, I want to marry a smart guy when I grow up. He’s pretty smart. Maybe, I’ll marry him?” Little did she know how true that was going to be. Rita had PSP for about 6 years. In 2001, I saw a small tremor in her left hand, so we went to the neurologist, and he diagnosed her with Parkinson’s.
We were quite upset about that, so we took her to another doctor who said the same thing. After about 2 years, we made an appointment with a neurologist at Loyola University Medical Center. Since Rita didn’t have a downward gaze, he suggested that we see an ophthalmologist who confirmed that she had PSP.
We knew nothing about this particular disease and he explained to us that it was rare and had no known cause or cure. To make sure of the diagnosis, we took a trip to Mayo Clinic, and they too confirmed that she did have PSP. During the 2 years before we received the correct diagnosis, she fell six or seven times, twice quite seriously and hurt the orbit of her eye, and one time I had to take her to the emergency room. Most of her falls, when I reflect back, were due to the fact that she could not see what was below her, like a curb or a step.
About 4 years into the disease, Rita began having trouble dressing, undressing, washing, and she also needed help going to the bathroom. She was also having trouble with balance, and I needed to walk with her in order to get her from one setting to another. I took care of Rita during those years, putting her to bed every night and getting her ready in the morning. I didn’t mind this because she would do the same for me, and she was such a beautiful person.
One time she told me, “I want to dance.” It was quite sad to hear this coming from a woman who loved both music and dance, but now had extreme difficulty doing the simple two step. It didn’t stop her from trying. Rita was also a very accomplished piano player but could no longer play due to PSP.