← Return to Support Group for Those of Us Living With Mild Dementia

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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.

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Replies to "Hello everyone. I’ve enjoyed and also learned a lot from these post on MCI. I thought..."

@mjensen24
A very good post!
I am sympathetic and it sounds like me and you are on the same boat.
You are not alone here my new friend. Regards, Ashley

@mjensen24, I have a REM sleep disorder, as well. No matter how long or little I slept, I always was tired. Fortunately for me, my mood disorder meds help with it now. If I start to have trouble, I take small doses of melatonin.
Good luck to you