Hi, @sarah49 - Since you mentioned wanting to quit smoking, I wanted to suggest this discussion on Connect on quitting for reading through and participating, if you'd like: https://connect.mayoclinic.org/discussion/stop-smoking-panic-attacks

Just wanted to clarify: Was your diagnosis Lewy Body Dementia, then?

Hi, @sarah49 - wanted to check in with you and see how you are doing?

Hello Sarah - I was diagnosed with LBD a few years back. Before the diagnosis I was noticing things were different but didn’t think too much of it. I was diagnosed with Parkinson’s several years earlier - so much of what I was feeling was attributed to the PD.
So what to expect - expect the unexpected.
I will preface that everyone s different. If you talk to 10 people with LBD - you will probably get many different symptoms / combination of symptoms.
I was able to help make decisions for myself - with input from my family - before I might not be able to.
I made the conscious decision to stop driving in 2019. This was prompted by getting lost and inattention.
We took steps to make sure I had the paperwork to designate a health care surrogate. Power of attorney.
I have found that working to make some decisions - or at least thinking about it to be helpful. I think being able to make decisions - like giving up the keys makes things much easier instead of waiting until my family would take them.

What to expect? Everyone is different - for me I have become very structured - I have to have an anticipated schedule. If it deviates a lot - i dont do well.
Social situations are becoming difficult. I am having problems understanding facial expressions - which is challenging during a conversion.
Communication changes. I have found that I lose my train of thought -even in the middle of a conversation. I want to say something but by the time I can jump in - the thought is gone. So to compensate - I jump in and talk over people to get my thought out.
I am slow to get things out. I think and have to process the words to say and sometimes by the time it comes out - it isn’t what it started out as.
Mobility - I can’t say for sure how much the LBD has effected this as I am also a PD and MD patient as well. (I got hit by a jackpot).
Falls - I have taken a few falls - nothing major Worst was a slight knee injury.
Hallucinations - for me not too bad. I am able to realize they are not real - but it sure can get my attention when I am i the middle of it.
Depression - yes
Multitasking - none existant - I have to have directions read a couple steps at a time. Looking at something like directions to put something together - well my 5 year old grandson does better.
Comprehension of new material is very difficult.

I might suggest a program that Mayo has and probably others as well have similiar programs. The Mayo program is called HABIT. It is geared toward people with dementia and their caregivers.
They address a lot of the things to be thinking about for planning purposes.
They also help with coping strategies for different situations. They go over all of these with you so you are getting advice geared toward you.
They can give a lot of insight into what to expect.

I hope this isn’t too hard to follow. I also have a hard time with putting thoughts together in a coherent way at times.

Closing thoughts - find ways to keep a sense of humor. We have found that helps a lot.

Here is a link to the Habit program - https://www.mayoclinic.org/departments-centers/psychiatry/services/habit-program

Peace
Larry