About The Blog

I have started this blog to chronicle my family’s journey dealing with Lewy Body Dementia. In an effort to educate myself about this devastating illness, I found there was a total lack of awareness and a lack of information dedicated specifically to LBD. As a result, I have decided to start this blog as a way to help our family through this journey and hopefully serve as another resource for others living with or caring for someone with Lewy Body. In doing so, maybe it will even raise a little more awareness about LBD. Dealing with this disease is all very new and I’m still learning something new every day so bear with me.

Brief History About Dad’s Diagnosis:

Dad, 74, has LBD. Supporting and caring for him always are his loving wife, 61, two daughters, 30 & 29, and a son-in-law, 29.

Dad’s road to diagnosis has been confusing and difficult to say the least. During the summer of 2007, Dad’s body and behaviors started to change. Husband and I were living in Sydney, Australia and Sister was living in NYC. Mom and Dad were alone and dealing with the changes on their own. Things weren’t going well, mom needed help, and so the kids returned home for a visit. During this time, Dad was taken to the ER in an ambulance and diagnosed with a massive brain tumor that was connected to his carotid artery and optic nerve. In September 2007, Dad underwent brain surgery and his tumor was successfully removed. Despite the removal of the tumor, his body and behaviors seemed to still remain and Dad started to exhibit new alarming behaviors.

Without going in to all of the details, in January 2008, Dad was hospitalized again due to what is now known as LBD symptoms and its terrible effects. It was during this time that his neurologist began to suspect Lewy Body Dementia. Dad was exhibiting signs of Parkinson’s and Alzheimer’s: a shuffling gait, body tremors, muscle rigidity, delirium, hallucinations, paranoia, Parkinson’s face, confusion and forgetfulness. During the hospital stay, Dad’s Neurologist began him on Parkinson’s and Alzheimer’s meds. Getting the exact combination of meds to work has been a difficult balancing act and is a constant work in progress. For now we’re following closely with the Neurologist’s course of treatment but dealing with numerous competing doctors has been stressful and quite a challenge. I have recently joined the LBD Caregivers yahoo group and they have proved to be an invaluable resource. Please think about joining if you have a loved one with LBD.

In April 2008, the Neurologist diagnosed Dad with Lewy Body Dementia. I’ve been doing heaps of research and from everything I’ve read, unfortunately, I do believe his unfortunate diagnosis to be true.

In May 2008, Husband and I permanently moved to the US to help my Mom care for Dad. Sister has summers off and several weeks vacation during the year so every chance she gets, she comes home. Caregiving is emotionally hard and physically demanding. We’ve always been an extremely close family despite distance so in our family’s time of need, we are all coming together to help care for Dad.

Please note: I am not a doctor or an expert. Any information listed in this blog either pertains to my own personal experience and knowledge or is there as a resource for you to research further. What works for one person may not work for another. Always discuss any medical issues with your physician and consult an attorney for legal matters.

Thanks for reading.