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1/10/2016 Latest post:
Thank you to family and friends for using this site to check in with us. I (Jessica/Kelly's daughter/Kay's granddaughter) wanted to be of some help, even though I'm not in the Beloit area. I know there are a lot of people looking for updates and this is a great way to streamline that process. My grandpa's story with Lewy Body Dementia began long before any official diagnosis or even before anyone around him was suspicious that it could be something beyond typical "aging". Initially, it started out as a misdiagnosed sleep disorder, where he would get a restless night's sleep of acting out his dreams. Any other symptoms he had could have been easily explained by a number of things. Over the last year each of us who love him most started to notice a slow and intermittent decline in physical abilities, coordination, etc. Often it was nothing major and nothing too suspicious - dropping a glass, trouble stepping to the side. At the same time, again slowly and intermittently, we might notice something to be cognitively amiss - forgetting something, or saying something "out of left field". Again, all things that could easily be attributed to aging or a lack of restful sleep. By summer, the red flags started trickling in a little faster and faster till it became difficult to not address it. My grandpa might be excessively sleepy during the day, (but that could be attributed to a restless night's sleep). There would be high moments (and great days) where there would seemingly be nothing wrong. And then a day or moment would come where his mobility was clearly impaired, or he would forget family names, or suddenly look around scared as if he didn't recognize where he was at or the people around him. Moments where he thought it was the past started happening with more frequency. Doctors at the time recognized his Parkinsons-like and dementia/alzheimers-like symptoms but attributed it to Periodic Limb Movement Disorder and age-related causes (both misdiagnoses). His struggle with "Parkinson's" and "dementia" symptoms seemed to fluctuate greatly. A great day, or a great moment, moving around with ease and sharp as a tack, followed by a bad day or a scared look when you knew he didn't recognize his surroundings. Different doctor visits and different medicines didn't seem to help, often it seemed to get worse. As a family, a few of us mentioned Lewy Body Dementia (and some of us were downright convinced) but it wasn't till this last week that he received that official diagnosis.
Over the last month we celebrated Christmas, and for the most part my grandpa was his ol' fantastic self, telling stories, talking sports, and still giving "nuzzles" to his grandkids; this is something we're all so thankful for. And on January 1st, he had his 79th birthday party with family. He seemed (again for the most part his wonderful self) and he was able to enjoy his birthday with his family. We facetimed and he was able to talk with clarity. By night, his symptoms took a devastating turn for the worse and he was admitted to Beloit Memorial Hospital by morning. It was there (but not for a couple days) that he received the official diagnosis of Lewy Body Dementia. (His cardiovascular health and his diabetes are in check.) This diagnosis is important because it strongly impacts the medicine used to treat his symptoms. Doctors and nurses are doing what they can to bring him peace of mind and to provide him an environment where he can be safe. The trouble has been trying to find the right medication (since Lewy Body Dementia often makes a person hypersensitive to typical medications used to treat these symptoms and the side effects can be devastating) and the other challenge is figuring out where we go from here. Thank you to everybody who has reached out to my grandma, my uncles, aunts, mom, cousins, etc. We look forward to this site being an easy place for people to get updates on my Grandpa, Kay Buchert. **Disclaimer, this is a free site for me to use. The donation request is from the site and not from myself, my grandpa, or our family.