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Support Group for Those of Us Living With Mild Dementia

Posted by SusanEllen66 @SusanEllen66, Sep 18, 2023

I know there is a Dementia Caregiver Support Group.

I would like to have a group for people like me. I am entering the Mild Dementia phase from Mild Cognitive Impairment.
It’s frightening to think about my future.

Could a group for Dementia Patients be started?

Interested in more discussions like this? Go to the Aging Well Support Group.

pollyhet | @pollyhet | 5 days ago
In reply to @SusanEllen66 "@pollyhet I have the same issue. I think it’s because when I am among people and..." + (show)
@SusanEllen66

@pollyhet I have the same issue. I think it’s because when I am among people and trying to participate in conversation I can’t keep up. At home I don’t have that problem.

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Susan,
Thanks for your insight.
I’m starting to worry that his forgetfulness is getting worse. My anxiety over it is peeking. He does have hearing problems and just ordered new hearing aides, I hope those will work.

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peat | @peat | 2 days ago
In reply to @SusanEllen66 "@colleenyoung Thank you Colleen, About 2 years ago I was diagnosed with MCI via the 4..." + (show)
@SusanEllen66

@colleenyoung
Thank you Colleen, About 2 years ago I was diagnosed with MCI via the 4 hour memory test, and an MRI.

Over the past few months I’ve been having trouble with my usual organizational skills. I used to do my housecleaning, and laundry on schedules. I found it helpful and did it that way for many years.
Now, I have no idea what day I did what the week before. The crazy thing is that I don’t care. That is not at all like me!
My house was always company ready. Always. Now, not so much and my attitude towards it has changed.

The Brain MRI was done 2 years ago. I didn’t look at the results until last week. I have moderate atrophy, and generalized micro vascular ischemic disease.
The fluid filled areas are getting larger.

I have been under a lot of stress lately because I was just diagnosed with severe polyneuropathy. I have an appointment with my neurologist in a few weeks and I will bring this issue up with him.

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Hi Susan,

I too have been diagnosed with MCI. This was based primarily on my memory test as my MRI was, as my neurologist said, “not much different from normal for my age (73) and a P-tau217 blood test was well below the level for markers of Amyloid proteins. I am interested in your memory test though. My symptoms however are very similar to those others have described here and are distressing. My test was only about 10 minutes, yours was 4 hours. What kind of test was it and what did they cover?

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1 reply
SusanEllen66 | @SusanEllen66 | 2 days ago
In reply to @peat "Hi Susan, I too have been diagnosed with MCI. This was based primarily on my memory..." + (show)
@peat

Hi Susan,

I too have been diagnosed with MCI. This was based primarily on my memory test as my MRI was, as my neurologist said, “not much different from normal for my age (73) and a P-tau217 blood test was well below the level for markers of Amyloid proteins. I am interested in your memory test though. My symptoms however are very similar to those others have described here and are distressing. My test was only about 10 minutes, yours was 4 hours. What kind of test was it and what did they cover?

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@peat of course each of us is different.
The 4 hour test is a neuropsychological test, It is way more than a memory test. It showed a deficit somewhere. The real indicator for me was in the EEG, and PET scan.

Now, It seems my diagnosis is changing based on a whole host of symptoms that are a telltale sign of FRONTOTEMPORAL DEMENTIA (FTD) and along with it, PROGRESSIVE SUPRANUCLEAR PALSY (PSP).
My new neurologist has spent a lot of time putting and placing things like my movement problems, eye issues, and other things I never thought were apart of dementia. Those things are the PSP.

I’m having trouble focusing right now so I need to go

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1 reply
peat | @peat | 1 day ago
In reply to @SusanEllen66 "@peat of course each of us is different. The 4 hour test is a neuropsychological test,..." + (show)
@SusanEllen66

@peat of course each of us is different.
The 4 hour test is a neuropsychological test, It is way more than a memory test. It showed a deficit somewhere. The real indicator for me was in the EEG, and PET scan.

Now, It seems my diagnosis is changing based on a whole host of symptoms that are a telltale sign of FRONTOTEMPORAL DEMENTIA (FTD) and along with it, PROGRESSIVE SUPRANUCLEAR PALSY (PSP).
My new neurologist has spent a lot of time putting and placing things like my movement problems, eye issues, and other things I never thought were apart of dementia. Those things are the PSP.

I’m having trouble focusing right now so I need to go

Jump to this post

Thank you so much for your reply. I am in the process of gathering information, I want to be my own best advocate and your information was very helpful.

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