Support Group for Those of Us Living With Mild Dementia

@craigbyrom
You couldn’t have said it better! That’s the whole point exactly. Regards, Ashley

After all, I realize that I am not going to get better, just the opposite in fact, and I am good with that. My neurologist job ( and mine) is to help me keep living as full of a life as I can. Hobbies, exercise, etc,etc all contribute to this, above all, it’s the attitude and our perception of ourselves.
Getting old isn’t for sissies!😀Regards, Ashley

@hraka13
I wish it were menopause, all I would need are some ovaries 😂

@ashley43725
Well said.
Im gonna have to use this one “ Getting old isn’t for sissies!”
😂

I am finding that I cycle between low points of frustration with running into new limitations and wonderful moments of joy hiking in the woods with my trusty Parson, Quentin.
The question that I hit like a wall is this: should I push myself or ought I listen to the limiting sensations and slow down.
Exhaustion can be with me in the early a.m., or it can “attack” me mid day.
Exhaustion is my primary concern.

Hello everyone. I’ve enjoyed and also learned a lot from these post on MCI. I thought I would add my comments to this group to hopefully help others in their journey through my experience. I’ve had REM behavioral sleep disorder for about 12 years. This was confirmed two years ago by a sleep study. I bring this up because it is know precursor to later development of alpha synuclein diseases such as Parkinson’s, Lewy body dementia, multiple system atrophy. About five years ago I started noticing problems at work with multitasking and general forgetfulness. Because of this and my history of REM sleep disorder I saw a local neurologist 2+ years ago who ordered extensive testing to include brain MRI, full neuropsychological test and alpha synuclein skin biopsies. My MRI was mildly abnormal, skin biopsy punches were abnormal showing alpha synuclein buildup in the nerves and the neuro psych eval showed I had MCI with deficits in executive functioning, visual-spacial, among other deficits. In light of these tests, in conjunction with clinical presentation, I was diagnosed with MCI caused by Lewy Body Dementia. I was placed on the standard protocol for dementia medications and REM Sleep disorder. I had a second full neuropsychological test eval last year and had dramatic decrease in my test results with a diagnosis of early dementia Lewy body dementia. I also followed up at Mayo Clinic Rochester for further confirming testing that wasn’t available to me locally. Over the last year I’ve had a significant cognitive decline as well with increased autonomic symptoms related to Lewy Body Dementia. Three years ago I was running marathons and now can barely walk around the block and am in extensive PT. I’m incredibly grateful for all my healthcare providers for their insight, and for ordering all tests I’ve taken to prepare for the future. Over the last year we’ve renovated the first floor with a bedroom and full bathroom so I do t have to climb stairs, in addition to numerous safety features around the house. Everyone has a different course with MCI but getting as much information early on can help with the future. With that, life is still extremely good! Best to all.

@hraka13
I wish it were menopause, all I would need are some ovaries 😂

Hello everyone. I’ve enjoyed and also learned a lot from these post on MCI. I thought I would add my comments to this group to hopefully help others in their journey through my experience. I’ve had REM behavioral sleep disorder for about 12 years. This was confirmed two years ago by a sleep study. I bring this up because it is know precursor to later development of alpha synuclein diseases such as Parkinson’s, Lewy body dementia, multiple system atrophy. About five years ago I started noticing problems at work with multitasking and general forgetfulness. Because of this and my history of REM sleep disorder I saw a local neurologist 2+ years ago who ordered extensive testing to include brain MRI, full neuropsychological test and alpha synuclein skin biopsies. My MRI was mildly abnormal, skin biopsy punches were abnormal showing alpha synuclein buildup in the nerves and the neuro psych eval showed I had MCI with deficits in executive functioning, visual-spacial, among other deficits. In light of these tests, in conjunction with clinical presentation, I was diagnosed with MCI caused by Lewy Body Dementia. I was placed on the standard protocol for dementia medications and REM Sleep disorder. I had a second full neuropsychological test eval last year and had dramatic decrease in my test results with a diagnosis of early dementia Lewy body dementia. I also followed up at Mayo Clinic Rochester for further confirming testing that wasn’t available to me locally. Over the last year I’ve had a significant cognitive decline as well with increased autonomic symptoms related to Lewy Body Dementia. Three years ago I was running marathons and now can barely walk around the block and am in extensive PT. I’m incredibly grateful for all my healthcare providers for their insight, and for ordering all tests I’ve taken to prepare for the future. Over the last year we’ve renovated the first floor with a bedroom and full bathroom so I do t have to climb stairs, in addition to numerous safety features around the house. Everyone has a different course with MCI but getting as much information early on can help with the future. With that, life is still extremely good! Best to all.