Support Group for Those of Us Living With Mild Dementia

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.

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?

@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

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.

@SusanEllen66
Yes Susan, I’m Heather and 53 yo. My dad’s health has been declining since he retired at 72 now 78. I think his cognitive was decline before that but movement issues started at 72 with falls I believe due to depth perception. I’ve suspected Lys for yrs. but all the Drs only have diagnosed Parkinson’s like symptoms with something else going on? Finally he’s been referred to an Infectious Disease Dr (UTIs) and a movement specialist and hopefully he will determine Dads primary diagnosis.
Im so sorry that you’re having to go through this.
***You may want to go to Google two things, your diagnosis Ly Bodies Association and Ly Bodies resource center
These websites are really good for information and I’m talking pretty much everything from why, different types, support, caregiver tips, webinars, etc. ** if your state isn’t listed just pick any of them, I pick NY. ****It is very important not to make your anxious or stressed but start with, not sure how to say this, paperwork like fiances (will) in order, power of attorney, living will, DNR, etc. Again I’m NOT trying to stress you they recommend you do this while your memory is good that’s all! Also there’s a lot of medications that may help you with certain symptoms, I’m sure you’ll come across in literature. ****A lot of support groups out there like Facebook groups, or ask Lys association to help you find resources in your area like Drs, support services, etc. They have a hot line phone # or email.
Hoping this will help you! ****My thoughts and prayers are with you! Dance,Sing, and Laugh for its good for your soul!
Best Wishes, Heather

Ooh Susan, one more thing, no two people are the same. With genes, environmental factored, biological factors, etc. Everyone is different having different symptoms and time frames.
There is no set conditions (symptoms)you will face, you may or may not, just because you read this guy had doesn’t mean you will.
Or time frames, trust me there different for everyone.
Because of this Lys has a nickname ScrewyLy, because it’s so scattered. Hugs! More Hugs! Did you get them?

@heather72 thanks so very much!

Update on me. My Neurologist said that I have Mild Cognitive Impairment. MCI.
Right now he said I don’t have any trace of dementia.
I’m doing well.

I do have a movement disorder. Functional Neurological Disorder FND and it is giving me all kinds of problems.

Oh well, life throws lemons sometimes…

I’m a 77 year old woman and I live in Columbia MD. I’m married with grown daughters and grandchildren. I was a university professor and have a PhD.

I was recently diagnosed with vascular dementia. I had a full battery of tests at Hopkins and this was the result. While it was a huge shock, I had been diagnosed with MCD 4 years ago and again 1 year ago. When I received the diagnosis of MCD there was no mention of any treatment or things I could do to stop or slow it down at the time.

I was angry, frightened, confused, and angry. I’m getting over that but I’m not yet at acceptance. How is everyone here facing this diagnosis?

I would like to be connected to this group. Thank you

I have been diagnosed with MCI. I carry the Apoe4 genes, and on my maternal side, my mother, grandmother, and maternal aunt have succumbed to Alzheimer's disease. Currently, I'm undergoing Lequembi infusions twice per month and continue to take vitamins, donepezil, and other supporting medications/vitamins. It would be great to connect with others in similar situations.
Best Wishes for All