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May I ask looking backwards what you now know were early signs of Alz or another dementia?
Posted: Friday, July 18, 2014 1:02 PM
Joined: 7/18/2014
Posts: 3

Maggs, I am sorry if I am hijacking your post.

I too am appreciating how compassionate you all are. Your responses are so helpful. 

I did have the 6 hour test. I think it was 2006. Actually, I don't even have a clue when it was, I am just guessing. Dates are not something I remember. But it has been that way for years. My kids tell me I am always repeating myself. I just tell people I'm a cheap date, you can tell me the same thing every day and it will be brand new to me.
The Neuropsychologist said that I am tested as highly intelligent, should have been a professional like a Doctor or Lawyer, and asked me what the heck I am doing being in the job I had.
Since he told me I am of average memory loss for my age, 61, I wonder if it is necessary to get further testing.

Memory loss doesn't run in my family. Even in my mom's last year of life, the worst thing she did is answering the remote control when the phone rang  
From what you are saying a DNA test may not be applicable for me. But medication may be a good idea?


Mimi S.
Posted: Friday, July 18, 2014 6:53 PM
Joined: 11/29/2011
Posts: 7027

Mary, from what you say, no to meds.

However, i do believe that Omega 3 and antioxidants are worthwhile.

As strenuous exercise as you can handle. You want to get your heart pumping at a faster rate than normal for a time.

Varied mental exercises. Have you wanted to learn a new language? Play an instrument? Now's the time. Get out those photos and label them. Put them in sequence and write the story behind them.

Keep up your socializations ... or if that is limited, improve.

Posted: Saturday, July 19, 2014 5:03 PM
Joined: 7/6/2014
Posts: 683

John50, my husband, age 69 1/2, has the same diagnosis, Atypical Alzheimer's frontal variant and has very similar difficulties with executive function & apathy. He was diagnosed by Dr Mesulam at Northwestern Medical Center in Chicago. Dr Mesulam is the director of the neuro and cognitive impairment clinic and does extensive research. It was the results of the spinal tap that finally clarified for us why so many of his symptoms looked like bvFTD but were Az instead. The exelon patch seems to be helping so far as does the Celexa for apathy. We will add Namenda later. 

My husband's mother died at the age of 94 with dementia she had been suffering with since age 70. There were no formal tests or brain autopsy so we don't know if it's genetic. My husband joined the Core Study at Northwestern and his brain will be autopsied at death. He wants, like you to do whatever he can to help with the research and understanding of this disease. I would be very interested in talking with you further (privately) about you experiences. I am not very tech savvy, and this forum is the first I've ever posted on. For security reasons, I do not want to post my email so I don't  know how to reach you other than this forum. My husband's mother spent nearly 24 years in some sort of assisted living or nursing home care. I am scared about our future as we also have a 33 yr old son with autism that we care for at home. All of our financial planning prior to my husbands diagnosis was set up for our son's care after we are gone. My father also died from AZ and my mother from pick's disease. I feel "doomed" some days. We have already met with an eldercare atty but this is all so complicated. 

Iris L.
Posted: Saturday, July 19, 2014 10:02 PM
Joined: 12/15/2011
Posts: 18519

I don't feel doomed.  I feel hopeful.   I appreciate the encouragement of my fellow patients and encouragment from the family members.

Iris L.

Posted: Sunday, July 20, 2014 2:12 AM
Joined: 7/6/2014
Posts: 683

Iris, I meant I feel doomed from a genetic standpoint with both my parents having AZ & FTD. I feel hopeful when I see all the research topics being studied about this disease. They're coming at it from every angle but what a monumental task! That's why my husband and I decided to be part of a study at Northwestern, donate our brains and help the researchers learn more. I'm sure you're already familiar with these sites but maybe others are not. I am intrigued by the research on "biomarkers" used for diagnosis and the genetic studies and the drug studies. Lots of good stuff going on but as the last line of the abstracts frequently say - NEEDS FURTHER STUDY



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