RSS Feed Print
Denial or Logic?
Posted: Thursday, October 18, 2018 5:47 PM
Joined: 12/14/2017
Posts: 1728

I really don't know and I wonder what you think.

My diagnosis says... I will just type the one line that mentions a "diagnosis".

"We obtained a PE scan of her brain (metabolic evaluation) and this demonstrated decreased metabolism in a pattern most suggestive of an early fronto-temporal type dementia."

Those are her exact words.  Other parts of the letter say she came to this determination by symptoms presented, PE scan and a strong family history of dementia.

My logical thought process:  I am 54 years old...and drank for 22 years...I probably did it to my brain with alcohol....I do my best not to drink...just went for 10 months.  I drank AFTER the PE results and my sister dying...which I am glad I got the scan on a "clean" brain.

My Father has LBD with it impacting many parts of his brain.  My problems ARE much less severe and appear only in the frontal temporal area (I think). I only had a phone follow up with her so far.

.When she called me she said she was very sorry that people did not take my symptoms seriously....and that she can see why I have the symptoms I have.

BUT...Logically I think...this would NEVER have been KNOWN if I didn't have a PE Scan...there are probably many people walking around with this at 54 that aren't aware of what they have.  Right?

Every persons brain ages.

Although I noticed somethings were very different about myself about 6 years ago....I stopped working...walked out on a whim...(not normal) ...worked there 19 years...I still am not wanting to take this so seriously.

If I wasn't so sensitive to my bodies changes and wanting to know about this...It wouldn't have gone this far to the PE Scan, I pushed and pushed to see why I was different.

The only thing I think that makes me think my "stance" on this is the problems I've had for 6 years have been pretty bad but I also have had many life stressors above and beyond NORMAL....

I hung up the phone and chuckled and thought...OK well so I had a PET Scan...if they gave 3 of my neighbors one...2 out of 3 would probably have some lessened brain function???


Posted: Thursday, October 18, 2018 6:40 PM
Joined: 12/14/2017
Posts: 1728

ps...and I told her that I drank alcohol for 22 years......I was also a domestic violence victim with a visible dent in the front of my FOREHEAD....and these are reasons she did the PE because I said THERE HAS TO BE SOMETHING WRONG WITH MY BRAIN...

I'm sick of people telling me I am FINE when I am NOT because I had an abnormal CT scan 4 years ago...she got the PE Approved by Medicare and those were the results.

Mimi S.
Posted: Thursday, October 18, 2018 8:16 PM
Joined: 11/29/2011
Posts: 7035


I'm sorry, but I think you have every reason to accept the findings of the PET scan. i doubt the Domestic Violence is a factor. I would suggest you call theneurologist back and either make an appointment or talk further on the phone.
Posted: Thursday, October 18, 2018 9:13 PM
Joined: 12/14/2017
Posts: 1728

Mimi...I do have an appointment with her in 5 months..I know there is nothing I want done now...I did talk to her and told her I am too young to start on that Aricept...and since that is all there is and I already take medication...for anxiety and depression that ...that is all I can do and she agreed.

And she would like me to start the "gym" before the 5 months comes...that is my goal....

Cause I suffer a lot of depression normally and now my sister died and she doesn't even know that.


Posted: Thursday, October 18, 2018 9:18 PM
Joined: 12/14/2017
Posts: 1728

I just can't accept this bullsh-- of only living 2-10 more years..that is not how it goes with all.

And I know I have had a motorcycle accident and a car accident with head trauma as is not normal for someone with a Behavioral Variant Frontal Dementia to have memory loss.

That is one of my biggest complaints a whole chunk of my life past and pretty present I forget.

Someone asked me today to remember an incident with my Mother and I and them in a car...within the last 4 years...I do not remember it at all...even with all the details he gave me .

So I will be talking to her and she will say ...yes you probably do have other types of brain damage ..mental illness can cause brain damage..I've had mental illness forever....they have a hard time with people like me differentiating between actual mental illness or brain dysfunction.

That is what I will talk to her just seems like its a little worse than normal memory loss...but many that know me can't believe the diagnosis and think I am fine as well.  Just a little "crazy' sometimes.

Iris L.
Posted: Tuesday, October 23, 2018 4:05 PM
Joined: 12/15/2011
Posts: 16271

Misssy, NO ONE can tell you how much longer you will live!  I've been living with cognitive impairment officially and on meds (Exelon patch and Namenda) since 2009, although I had symptoms for many years before.  

Work on Best Practices as best you can, and make whatever plans you think are necessary for yourself.  Work on letting go of depression and on enjoying your life.  

There is much that I can't remember, and I am having a lot of difficulty in daily life.  But I am still enjoying my life.

Iris L.