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Tears In My Coffee /
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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 didnít
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
ďif the meds arenít working, why be on them?Ē we started
on our own course to get a handle on this disease. As of
this writing, my husband is off all Parkinsonís
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 didnít 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 Parkinsonís. It is now the fall of 2003.
We have been walking the PSP path now for five years.
At this time, my husbandís 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 doesnít 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