Welcome to Kathy's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your love and concern for Kathy and hope this helps build community and support for Kathy and Dave. Please feel free to share this link with Kathy's friends who we may not have reached (
https://www.caringbridge.org/visit/kathybennettupdates)
As many of you know, Kathy was diagnosed with Parkinson's Disease (PD) in early 2016. Her progression seemed fast, and in many ways atypical from others who we knew who were living with PD. Particularly, Kathy's cognition seemed to be declining faster than any physical changes. Her primary symptoms for the last 2 years have been intense fatigue, recall problems, confusion, and weakness. However, except for driving, she was still able to be quite independent. This spring, it became clear to her family that something beyond PD was presenting and it was changing her abilities and limiting her independence. Her neurologist confirmed our suspicions in July (2019) that her diagnosis now included Lewy Body Dementia (LBD).
Lewy Body Dementia (see also
https://www.lbda.org/) is a disease that affects the same portion of the brain as PD and the two have overlapping symptoms. Kathy's neurologist let us know that, because her primary symptoms are dementia-based, we will refer to her case as LBD, not PD. The hallmarks of LBD are fluctuations in cognition, REM sleep behavior disorder, hallucinations, visuospatial difficulties and Parkinsonian movement issues. Kathy is living with all of these symptoms. LBD presents differently from Alzheimers, particularly because of the hallucinations, the fast progression, and the minute-by-minute, hour-by-hour or day-by-day fluctuations in cognition. LBD is a terminal diagnosis with an average 5-7 year lifespan post-diagnosis. Kathy's particular case seems to be fast moving.
Dave and Kathy took a wonderful Mediterranean cruise with their dear friends in September. Both Dave and Kathy were able, with many modifications and some tough moments, to enjoy the vacation. Kathy's symptoms began to escalate after their return. They are both so glad they were able to have that time away together. Where Kathy had once been in and out of a confused state and was able to differentiate between hallucinations and reality, now she is more consistently confused and agitated and cannot discern reality from her disease symptoms. Sleep, which has been a challenge in the last year, is now not guaranteed at night for more than a few short bursts between periods of confused waking. As a result, she is very tired throughout the day and prone to falling asleep in any activity. She is eating less and has lost a great deal of weight in the last few months. Both her body and voice have become weak.
Dave is Kathy's primary caregiver and until this most recent chapter, has been able to manage without issue. Now, Kathy can't be left alone safely, so he is in the process of hiring an aide to assist part-time. Our local friends and community have been wonderful. In the past week+ once this change set in most sharply, they've been quick to offer meals, respite for Dave, and companionship for Kathy. When I asked Kathy about her state, she said she was still happy, just so tired. She recognizes, loves, and enjoys her family and friends. We think highly of her neurology team and they're working with us closely to modify medications and suggest changes that may improve the quality and quantity of sleep, the lack of which exacerbates her symptoms.
We wanted to get this page up and running to keep you all in the loop. I am unsure how often we'll update, but did want to get information out to Kathy's large and loving group of friends and family efficiently. This is Kathy's story, after all, and efficient management has to be a part of it! Diane, Dave & I are working together to make her days as safe and pleasant as possible and to give Dave all the support he needs to navigate this new chapter. He is an amazing husband and tireless advocate for Kathy. We are all, of course, heartbroken. Thank you all for your love and support. We will update if there are any important changes for better or worse.
