CAD106 and CNP520

[NF52]

I'm impressed with your list of what you did to "test" the side effects. Of course, you may make the rest of us look like pikers by comparison. Hope your empathetic husband is feeling better! Like you, I'm hoping to be in it for the long haul and figure if we don't benefit, others will.

[lol]

Hey Piker! You are super cool. Let us know how things go with your participation in this study.

[Mardi]

Found this site after finding out my status is Apoe 4/4. Signed up through the Banner Institute and submitted my cheek swap in August. Received an email saying I was eligible for the Generation Study (CAD106 / CNP520) in September. It took awhile to get my appointment since my study site is a smaller one and not affiliated with a large university. I thought I might be 3/4 since my mom had dementia....Never expected 4/4. They set up a conference call (with me and my husband) with a geneticist from the University of Penn, to go through what was probably a power point slide program that had been printed out on paper. Listen to the presentation and was thinking that this was going to be OK. I remember being very quiet after she told me I was 4/4. Don't quite remember what I said, but we took the information and headed back home for a 2 hour trip.

At this point I wasn't sure what I was going to do. We made the decision to tell our daughter since it could affect her in the long run. She handled it well and now when I have a "Senior moment" we blame it on my e4 genes and laugh. I decided it was better to laugh instead of getting depressed. Knowing my status didn't change my status, but I would have liked to be e3/e3.

My experience since then seems to follow "lol" information. Had to go back and do some memory tests, blood work, ekg, etc. The last time we were there they spent more time with my husband and then compared his answers with mine. Then off to have the MRI done. They have received the MRI results back and have scheduled the PET scan for next week and will schedule a spinal tap for the following week.

I quit work and took care of my mom who lived with us for several years before I had to place her in an Alzheimer's facility. She has since passed away, but I still remember how hard that time was. My motivation for doing this is that I like to think that somehow this trial helps future generations, possibly my daughter. But even with that motivation I have concerns as to the effect the trial might have on my health or possibly eliminate me from a different (better?) trial that comes along.

So for now I am off to the races... going down a path that I don't know where it will take me... and hoping for the best.

[Julie G]

Welcome, Mardi. I'm another homozygote. First learning is hard. I promise it gets easier over time. Thank you for generously participating in this study. I look forward to getting to know you.

[Starfish77]

Hello Mardi,
I'm an e4/e4 too. Thank you for participating in the study. I look forward to hearing more from you.
Starfish

[NF52]

Welcome, Mardi! I too am a 4/4 (which is really ironic, since that happens to also be the first two numbers in my birthday! I've always liked the symmetry of 4/4, so I guess it's only fitting I get to enjoy it on my APOE status! )
Congratulations on joining Gene Match knowing only your mom's history, and wanting to help research. Several of us found out when we did "23 and me" several years ago. My interest was mostly about where my wandering ancestors were from. I had a "say what?!" moment when I read the medical risk profile.
I confess to being gobsmacked for a while, until I realized that my family history pretty much told the same story. I would advise that IF you read peer-reviewed journal articles on Alzheimers in people with a 4/4 profile, you do so with a BIG dose of "Yes, but". Some of the most recent, and carefully designed studies have found that some of the factors your mother probably couldn't control (education level, control of high blood pressure and cholesterol) provide some protection and/or delay onset.
As for this research, I too hope I haven't picked the wrong horse, but believe that the general direction of the horse race towards immunotherapy to prevent either amyloid plaques, or precursor proteins of amyloid, are worthy of study by those of us who have a stake in the outcome for ourselves and our kids.
As for me, I was invited yesterday to join a study and expect to start on the fun stuff soon.

[NF52]

I have figured out how to improve on that reciting back a list of random objects. I could copy/paste a link, but I'd rather just talk.

You link the objects together, like this:
1. apple - snow white is about to eat the poison apple
2. pig - but no, a pig has run her over and eaten the apple
3. helicopter - get the poisoned pig onto the helicopter and fly him to the hospital for medical assistance
The problem is remembering the first object after linking everything. If you forget it, you are done.

Hi Lol, It sounds like you had a test similar to the California Verbal Learning Test, in which subjects are given 10 or so random words, then a distractor test (ex. a puzzle) and then asked to remember as any of the words as possible in any order. I used to give grad students in special education the Children's version of something similar: The Selective Reminding Test.
It isn't used much in schools, but I have always loved the design of this test and the patterns I saw in people taking it. It gives about a dozen words, and then asks the subject to repeat all the words in any order, Most people get about 6-8 right on the first "trial". For the second "trial", you give them ONLY the words they "forgot" and ask them to repeat all. [Ex. : If the words were dog, yellow, sky, cucumber and they said "dog, cucumber" you would say "yellow, sky. Tell me all the words"]
Each time you give only the words they forgot, for a total of 10 trials. what you are looking for are patterns of whether some words are remembered perfectly after only hearing once (usually the first word and last word), some words are remembered only when prompted and then forgotten the next time, and whether some words are inserted. (Like "dog" followed by the insertion of "cat" and then repeated every trial. Some people had obvious strategies: Phonetic (all the word starting with "p"; others had a story line, like you "Moon/shine/drunk/grass", others appeared to struggle with the middle words no matter how many times they were repeated. It was helpful for future teachers to see how fallible memory! Most of the students were very aware of how good their verbal memory was. For myself, I know that my own visual memory was about the level of a 10 year old if I had to look at geometric patterns, so those visual vs. verbal tests are going to show a baseline split that would get me classified LD in some places!

Waiting on a call from Georgetown for the start of my adventure!

[lol]

I feel for you, Mardi. It so hard. The worst, for me, is that I am always "watching" myself and playing games with myself. When I take a walk, I just can't enjoy the beauty of being outside ... it is - What are the names of the streets? Name the people living in the houses. Extra time between houses? Count down by 7s, starting from 100 (that is one of the cognitive tests) . Actually, compared to some of my aging and wonderful friends - hate to brag - I am doing okay. But I don't feel okay. I am hard on myself.

The first cognitive tests we shouldn't worry about acing. It is the later tests that we want to excel in. Still, NF52, I am practicing my lists http://www.bbc.co.uk/scotland/brainsmart/games/objects/. I have always been a hard working. The objects' test might be similar to the California Verbal Learning Test you mentioned. You don't have to put the objects in order. You get the list 3 times. Each time, I guess they expect you to remember more objects. You repeat ALL of the objects, not just the ones you forgot before. At the very end, the tester names each object, and you respond YES or NO - on the list or not on the list. By the way, NF52, the first digits in my birthday are 4/6. That does not match up to 4/4! Shoot a pickle. So unfair.

The thing is, Mardi, we can opt out of this study anytime we would like. If you want to join a new study, you can. You just can no longer participate in the Generations Study. Think it is the best thing out there for us right now. The spinal tap is not mandatory, and I said no thank you to that. The only thing different for me after getting this shot (and I hate to use bathroom talk) is that I am constipated, which has never been a problem. But, I sleep great now, and never did before. Should also mention that I have quite an imagination, so who knows? Constantly looking for signs - CAD106 or placebo?

I have been having dinner parties and organizing social time, specifically because isolating is a bad SIGN. Unfortunately, my guests bring wine and chocolates. So, with no self control, I down it all and have to feel guilty about contributing to my possible downhill slide. You know what? In spite of the 4/4, I am happy, with a lot to be thankful for. I will leave this massive reply on a positive note.

[lol]

Just want to make it clear that I am not cheating by mentioning some of the cognitive tests. Pretty much get the same or similar tests every time. Played 9 holes in the cold today, mainly to be around my husband, who is The Best. My chipping was bad, bad, bad. Probably got the CAD106 shot.

[Mardi]

lol and NF52... Thanks so much for your sense of humor... it has helped my state of mind. And thanks to other posters... it all makes me feel part of a group that I did not elect to be part of.

I have been a couple of sessions of memory tests. Very similar to what was mentioned. Easy one is counting back by 7s, which I too practice periodically. Had to listen a story and repeat back with as many facts as I could remember. It was then repeated to me and I had to do it again to see if I could remember details. Also did the 10 to 20 words that I had to remember and ten repeat back. They were then repeated to me to see if I could come up with more of the mentioned words. There was also a line drawing that I could look at and then had to recreate on a piece of paper. Husband and I had to show up and go through questions of what we did the prior weekend to see how my memory was. I guess I passed since then I was sent off to do the MRI. Two weeks later I did the PET scan. PET scan seems so much easier than MRI. Waiting to hear the results now to determine if I am in the study or not. Have a choice to do the spinal fluid test, which I am leaning towards.

So thanks to all of you..... All your comments and those in different forums have made me not feel so isolated dealing with this. Best wishes to all of you.