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Tears In My Coffee

We reside in a small town in southern Minnesota. My husband and I have been married 31 years. We have four grown children, ages 23 thru 28 years. We have had a good life, good jobs and a nice community in which families congregate and grow. Life hasn’t been that bad.

As a wife, I had a suspicion that there was something awfully wrong with my husband. Oh, he would go to work every day, put in his 10 to 12-hour days, come home and we would do the family things. But something started not to feel right. My husband started to come home totally wiped out. He had dark circles around his eyes. He would have a bite to eat after work and find the couch to nap and wake up to go to bed. His handwriting was almost unreadable. He had a slight tremor in his right hand and was starting to drag his right foot. At times, one would think he had a few too many drinks. There was mood changes and arguments. All these things were not my husband.

I finally made an appointment with the family doctor for a physical. They too decided that there must be something not right. We connected with a neurologist. After MRIS, testing, drug after drug therapy, we were led to believe my husband had Parkinson’s disease. At 54 years of age, we were dealing with Parkinson’s.

Two years into the Parkinson’s diagnosis, all the drug therapy that was used on my husband had seemed to fail. He wasn’t getting better but had progressed much faster than a Parkinson’s patient would. He was now using a cane, falling at a more rapid pace. He was no longer driving his vehicle, his voice was becoming soft, his words were slurring. The drugs that he had been taking made him in a zombie state. The neurologist then decided to send him to a specialist at the Parkinson’s Institute near Minneapolis. After an eight hour session, we came home with the dreaded news. My husband had a rare disease called progressive supranuclear palsy. Formally named, Steele-Richardson-Olszewski Syndrome. In short, PSP.

PSP. Say that over a few times. Not much is known of this disease. The chance of having this disease is 5/100,000. It is much harder to find help. There is no known cure. Most drug therapies do not help. Doctors seem to play a guessing game on how to treat it. The life span is about 5 to 7 years, and with good medical management and home care, the patient could live 10 years.

My husband’s neurologist had no answers for him. They said they had never treated anyone with PSP and “what can we do for you?”; that was a question we thought we would ask them. Needless to say, we went to a new neurologist.

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