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Support Group for Those of Us Living With Mild Dementia

Posted by SusanEllen66 Susan McMichael @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.

Profile picture for craigbyrom
craigbyrom | @craigbyrom | Mar 25 6:44pm
In reply to @hraka13 "@craigbyrom, I had a severe reaction to depakote. I am stable in carbamazepine (tegretol) and Sertraline..." + (show)
Profile picture for hraka13 @hraka13

@craigbyrom, I had a severe reaction to depakote. I am stable in carbamazepine (tegretol) and Sertraline (Zoloft) for about 23- 25 years now.
I don’t know what’s causing the confusion but I take it in stride most of the time. It can be a little unnerving - but I’m not embarrassed - when I’m having a conversation and I can’t recall certain words. Most people who know me are understanding. And if they’re not, that’s their problem

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@hraka13
Thanking you.!
I need to work on being more at peace with who and how I am now and not so self conscious.

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1 reply
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hraka13 | @hraka13 | Mar 25 8:16pm
In reply to @craigbyrom "@hraka13 Thanking you.! I need to work on being more at peace with who and how..." + (show)
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@hraka13
Thanking you.!
I need to work on being more at peace with who and how I am now and not so self conscious.

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@craigbyrom, it takes time and it isn’t always easy. Some days I’m fine with my condition, some days it’s a royal pain in the a**, and others I really hate it. However, I know there is nothing I can do about it. If I don’t take my meds, I’m not happy and other people are real jerks (LOL, perception is everything).

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Ashley | @ashley43725 | Mar 26 5:28am
In reply to @craigbyrom "Well, a study. That’s a good gig to be involved in ! Benefiting yourself and others...." + (show)
Profile picture for craigbyrom @craigbyrom

Well, a study.
That’s a good gig to be involved in !
Benefiting yourself and others. That’s good medicine.
I found the same to be true regarding spinal tap, not bad at all.
Hope all imaging and testing are in good favor.
Question:
how is Lewy Body disease diagnose and how was yours?
I and family have noticed my symptoms resemble Lewy Body symptoms.
My neurologist appointment is coming up in April.

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@craigbyrom I was diagnosed after a positive skin biopsy.

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GetWellSoon26 | @vijay26 | Mar 26 10:05am

I am 75 yrs old and my spouse is 81. He thinks, I have dementia and I think he has dementia.
We both have been forgetting few things on and off.
He will not get tested, as he firmly believes, I am the one w dementia and not him!
Who can help us to get tested and where do we have to start?
I am ready to get tested and diagnosed, for I believe in early Intervention.
Please help direct me and guide me. Thank you.
VJ

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3 replies
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Ashley | @ashley43725 | Mar 26 10:34am
In reply to @vijay26 "I am 75 yrs old and my spouse is 81. He thinks, I have dementia and..." + (show)
Profile picture for GetWellSoon26 @vijay26

I am 75 yrs old and my spouse is 81. He thinks, I have dementia and I think he has dementia.
We both have been forgetting few things on and off.
He will not get tested, as he firmly believes, I am the one w dementia and not him!
Who can help us to get tested and where do we have to start?
I am ready to get tested and diagnosed, for I believe in early Intervention.
Please help direct me and guide me. Thank you.
VJ

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@vijay26 Take care of yourself first. Share your concerns with your primary physician, then he can perhaps refer you to a neurologist.
Further cognitive testing ,spatial , MRI etc, may be in order.
If other people have mentioned to you concerns about your cognitive abilities, then you should go, if you alone are worried, and others haven’t mentioned it, chances are your ok. Normal aging.
After things have been figured out for you then concentrate on your spouse. Keeping in mind that you can’t force someone into this. It’s not an easy thing to come to grips with.
Good luck to you both and keep us informed. Regards, Ashley

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edsutton | @edsutton | Mar 26 10:44am
In reply to @vijay26 "I am 75 yrs old and my spouse is 81. He thinks, I have dementia and..." + (show)
Profile picture for GetWellSoon26 @vijay26

I am 75 yrs old and my spouse is 81. He thinks, I have dementia and I think he has dementia.
We both have been forgetting few things on and off.
He will not get tested, as he firmly believes, I am the one w dementia and not him!
Who can help us to get tested and where do we have to start?
I am ready to get tested and diagnosed, for I believe in early Intervention.
Please help direct me and guide me. Thank you.
VJ

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@vijay26
If you belong to AARP, they offer free on line cognitive tests, not as detailed as in-person neurological testing, but enough to give you a baseline and warning if you're seriously challenged.

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GetWellSoon26 | @vijay26 | Mar 26 11:34am

Thank you Ashley for your advice and guidance. I was supposed to see my Primary care Dr today, but unfortunately I am hospitalised. I will ask the hospitality to make a referred to a Neurologist for complete evaluation and testing.
The problem w the hospitality is that they would not listen to patients and allow consultations.
I can only try.

Does the Neurologist treat Dementia w medications? I am already on hundreds of medications for other things.

I am so sick and tired of all poking and prodding that I wanted to stop them and go into "HOSPICE" Program. I am in IL
I do not know anything about Hospice program in our state.Will they take me, if I have dementia, in addition to cancer and.spine health ptoblems?
I wonder.
Thanks again Ashley.You are wonderful. I will follow thru your advice and let you know later.
W best regards,
VJ

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1 reply
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GetWellSoon26 | @vijay26 | Mar 26 11:37am
In reply to @edsutton "@vijay26 If you belong to AARP, they offer free on line cognitive tests, not as detailed..." + (show)
Profile picture for edsutton @edsutton

@vijay26
If you belong to AARP, they offer free on line cognitive tests, not as detailed as in-person neurological testing, but enough to give you a baseline and warning if you're seriously challenged.

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@I used to few years ago. Not now. How do I get a copy of the test and its results?
Thank you Sutton. I truly appreciate your help here.
Have a wonderful day.
W best regards,
VJedsutton

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edsutton | @edsutton | Mar 26 11:43am

VJ-You have to join AARP, then it's in the web site.

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