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Tears In My Coffee

We were lucky enough to get a fiery, five-foot tall, red head who was a fire cracker! With a broken English-Rumanian accent, she told us she didn’t know that much about this disease but would help us understand it. I think we both educated the other. We were so glad we invested in her, our faith of her abilities as a neurologist.

Her first decision was to get rid of all medication that was being taken. It was the theory of “if the meds aren’t working, why be on them?” we started on our own course to get a handle on this disease. As of this writing, my husband is off all Parkinson’s medication. At the beginning, there was a marked improvement or should I say, a marked change. The zombie state had left him. My husband was more alert.

The changes didn’t last long as my husband was progressing into a different stage of the disease. He no longer had a full night sleep. He would get up many times for trips to the bathroom. His speech had become very soft and very slurred. His falls were becoming more dangerous. A wheelchair was now part of his life. We had many runs to the emergancy room for stiches and x-rays to check for broken bones. He is easily agitated and tired. He has outbursts of anger and has mood changes. He has a starry-eyed look that is sometimes very frightening.
To compensate for all these ailments, the drugs of choice are now an anxiety pill for the mood changes and a sleeping aid. On a good day, the drugs do their job.
As I sit here and contemplate our lives, little did we know that this would be the journey we would be taking. My husband started on this journey in 1998, being diagnosed with Parkinson’s. It is now the fall of 2003. We have been walking the PSP path now for five years. 

At this time, my husband’s body is failing. He began to choke on water, so we thickened all drinks. Soon, to stop choking, he decided not to drink. Food was becoming a problem as was weight loss. The decision to insert a peg tube was made. He now is fed a formula four times a day to sustain his life. My husband has severe neck and shoulder pain. He now has massage therapy to soften the muscles. The neck muscles are stiffening and pulling to one side. He needs assistance to walk, to get out of bed, to go to the bathroom, and to dress. Because he doesn’t blink often, his eyes become dry and needs to have drops applied many times a day. He has trouble seeing as the brain will not let the eyes work properly. He is in stage four of the dreaded disease, PSP.

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