As many know I have dementia with Lewy bodies, a brain disease that has symptoms similar to Parkinson’s and Alzheimer’s.
Another person with Lewy shared with me something I think that will be highly beneficial, not just for folks with Lewy but for those with other chronic diseases as well.
Let’s call it a “Report Card for your Doctor,’ or ‘Progress Report for Doctors and other caregivers.
{To see full report click here and scroll down}
This running document is something you update between doctor visits.
Thanks to a fellow ‘Lewy’ person and his wife, caregiver, I am able to share an example of how this works right here. It’s pretty self-explanatory. I have taken out the names for privacy’s sake.
I think this could be a life prolonger or at least a life comfortor, especially for those with memory issues as changes in symptoms are so important for the doctor to know about. Everyone in this situation has gone to those hard-to-get appointments with a neurologist only to remember that you forgot to say something about something. This puts it all in black and white and would serve as a patient-doctor conversation.
I think publishing this is helpful information on two levels: 1) For everyone with a chronic disease to use to improve diagnosis and treatment, and 2) More specifically for those living with Dementia with Lewy bodies to see the chronicling of the disease in a real person.
To see the full report (if you missed the link above click here.
I read the Actual Home Progress/Assessment by your friend. It is very, very, much like the ordeal my brother went through.Fortunately, my brother’s neurologist was familiar with Lewy Body Dementia, although in 2010 it was on the cusp of being recognized and accepted as a stand alone disease. My brother’s wife was an RN, so she was keenly aware of importance in the medicine dosage amounts and timing.
My brother woke up one night to pee and saw dozens of bugs in the toilet. He got a can of Raid and “sprayed them good”. He told his wife about it in the morning, but no dead bugs were found. At that point he was aware the bugs had been a hallucination.
Later hallucinations became much more serious. The doctor told my brother’s wife to get all firearms, ammo, big knives, etc. out of the house. That was good advice.
Sincere thanks to your friend for letting you share his story. And sincere thanks to you, Mike, for sharing your story.
David