Teepa Snow, dementia care expert, commented on a picture that I posted on Facebook this morning. "People with LBD struggle with unpredictably changing thinking abilities."
Teepa Snow's comment: "It surely does complicate relationships, interactions, and expectations....
but knowing this can change all three as there is a better appreciation
that it is not a deliberate act or a choice,
it happens...and then it might not....humans love predictability,
so it forces us to use our 'alert' system
and get into the dynamic 'assessment' mode
each time we interact to take a 'measure' of ability in the moment.
The goal is to quickly figure out how many things are being taken in, processed, and acted on....
and then become supportive for those demonstrated abilities....
realizing they can change in a moment."
Thank you Teepa for taking the time to comment on this. All too often I hear other persons who have been diagnosed with LBD by cognitive centers tell me that after they get back home to their regular physician, they are told by this physician that they do not see that as the diagnosis. I can understand the comments of the individuals because it has happened to me also.
I have found in my journey just before and after diagnosis of LBD that I do have times of very good attention, focus and alertness.
Lately, it has appeared to me
that it occurs when I have surges of adrenalin....
so that I can engage and complete a task.
I can walk into a physician's office and most always be highly engaged...
to the point they cannot tell....
my true life with struggles of balance, gait, lapses...
in thought, attention, focus, and bouncing into walls in the house.
I am usually always on my A+ game when I see my neurologist; however, it does not take him or his Nurse Practitioner long to find and see the weaknesses. They have never missed. This along with the
continued slow response in testing and my decrease in multi-tasking,
visuomotor and executive function continue to lead them
to their diagnosis of LBD.
We need more education and awareness.
The struggles of whatever is taking place
in the mind and body are very intense.
Sometimes the patient is told by a cognitive neurologist
that they have Lewy Body Dementia and then a non-cognitive
physician tells them they do not have it.
The combination of the physical, emotional and mental
struggles within the patient and the contradiction of diagnosis
creates extreme chaos in the patient.
My number one question to physicians at Mayo Clinic...
Confirm or dispel my diagnosis of LBD
Be LBD Strong
©2015 Robert Bowles
Robert Bowles, Jr.