JAN 10

Carol’s journey to DBS surgery continues….
We are off to Portland today. I have appointments tomorrow and Tuesday. These are baseline studies to measure my physical skills, my thinking skills and take a good look at the Parkinsons symptoms I experience to determine if this surgery is the best next treatment. Why am I being considered? My doctor has been increasing my medications. She has tried adding amantadine and I reacted poorly. Entacapone was also tried to supplement and extend the sinemet . This also caused an adverse reaction. The sinemet is “wearing off” before the next medication time. I have developed dyskinesias, probably due to the amounts of carbo/levodopa I am taking. In me, dyskinesias look like my body is swaying to the tune of some great song. I also have some very weird hand and arm posturing, which my doctor calls postural dystonia. I am losing mobility of my ring and pinky finger in my right hand and my toes are curling while the second toe has developed a mind of its own and is trying to take over my the big toes job. Tremors have increased on my right side. Pain has become almost unbearable at times.
This surgery is not a cure. It’s like another course of treatment. I have lived very well with this disease and I hope this treatment helps further. I will keep you posted through the next couple days. I should know more by the end of Tuesday if the light is turning green to go ahead with further preparations for the surgery. Wish me luck!

Published by Carol Clupny, author Ultreia Books

I am a middle aged woman with Parkinson's Disease. When I was first diagnosed I spent a lot of time researching the disease. Seeing a video of a man in the advanced stages of the disease attempting to get out of his chair and then "freezing" as he tried to walk across the room got me off my butt and moving. Great adventures on the Camino de Santiago and with TEAM Pedaling for Parkinson's across IOWA, as well as the day to day adventures of life have lead me to writing. My first novel, a memoir, will be published early 2019. It is called, you got it THE RIBBON OF ROAD AHEAD. Living with the degenerative neurological disease Parkinson's, ULTREIA is a word that guides me. I have chosen it as the name of my business ULTREIA BOOKS. It comes from Latin and old French and means "unfailing courage". In the old days, pilgrims would call "Ultreïa" to each other as encouragement "Go up, go further!" Nowadays we would say "You can do this thing". It takes courage to live with Parkinson's. May I face each day with unfailing courage.

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