The weeks around and following Thanksgiving Day were hard – some of the hardest so far. It started Thanksgiving Day, and by the end of an evening Zoom gathering with family, it was obvious something was seriously wrong. My sweetie “checked out” during the call, became unsettled and agitated. He decided to lie down onContinue reading “No Time Like the Holidays”
Author Archives: Snad
Dysgraphia
I just started reading a study about the differences between LBD patients and AD (Alzheimers Dementia) related to fluctuations in cognitive abilities, particularly dysgraphia. Right at the beginning, the authors state: “Fluctuating confusion, accompanied by disturbances of consciousness, is an important clinical symptom, with a frequency of 80%–90% in DLB[7,8] and 20% in Alzheimer’s disease.[9]Continue reading “Dysgraphia”
Dream On
Rapid Eye Movement Sleep Behavior Disorder (RBD) is widely acknowledged as a core clinical feature of LBD. It often precedes or displays in concurrence with the onset of LBD. A study involving RBD and LBD (or, as it is often called, Dementia with Lewy Bodies, or DLB), can be found at https://www.hindawi.com/journals/bn/2018/9421098/. Mr. Dewey hasContinue reading “Dream On”
Margins
MARGINS I’ve been thinking a lot about some observations I’ve had of a particular set of behaviors. I see, frequently, Mr. Dewey engaging in his own life rather marginally. If I am in the kitchen, he will often stand just outside the doorway. If he sits on a chair, it is tentatively so, as ifContinue reading “Margins”
Beginning
January 15, 2021 will mark the third anniversary of Mr. Dewey’s diagnosis of Atypical Parkinsonism with Lewy Bodies/LBD with AP. That diagnosis occurred about 19 months after we first realized there was something wrong. One can look back, as one does at this time of year, and see there may have been signs earlier inContinue reading “Beginning”
Self-Care
Self Care is a tricky business. And frankly, I bristle when asked “What do you do for Self Care?” I know, I know, I know; people “mean well” when they ask the question. But here’s the thing: when one is asked a question, it is assumed that a response is expected. This carries a certainContinue reading “Self-Care”
You Just Never Know
Things can change drastically with LBD. He can lie down for a nap feeling good and wake up an hour later looking like the weight of the world is hanging around his neck. And later that evening see almost normal. This morning, after a number of days of increased anxiety, he woke happy, almost lively.Continue reading “You Just Never Know”
Chucklebutt
Chucklebutt has been around since the summer of 2016. Chucklebutt is the name we have given to the extreme anxiety that we have come to learn is a main component of LBD. It was the first major issue that made us realize something was wrong. I realized early on that this issue was not goingContinue reading “Chucklebutt”
Visitors
A hallmark of LBD is hallucinations, or visions. We call them Visitors. They are benign, and often, Mr. Dewey finds them comforting. This is not uncommon, and it is most welcome. Anything that provides comfort is welcome, especially in month 8 of the pandemic lockdown, the self-isolation, the management of the “pods” that such entails.Continue reading “Visitors”
Lewy, Dewey and me 